Caden and Cameron

Caden's Cardiology Checkup - 10/5/11

2011-10-05T15:25:00.005-05:00

We went in today for Caden's 6 month cardiology checkup. We didn't tell him until yesterday because he freaks out about going to the doctor - understandably. Once he realized that it was the heart doctor he calmed down and actually got excited because she lets him watch movies while he gets the echo done. So sweet.

The appointment went as usual, but this time there were two residents in the room with us. That was almost nicer because Dr. Battiste would explain everything in more detail. So... we have good news!!

Caden's pressures are still relatively low, about the same as they were 6 months ago. This is important because the higher these numbers go, the closer he is to needing another surgery. We're hoping for a few more years yet. It seems like we've been saying that for a few years now.

All of his valves leak moderately (still no change). She did say that his lower number of the pressures will have to get to around 40 before we have to go to Kansas City. Today he was at 21.2, almost exactly the same as last time. Yay!

What is even more exciting? Because she lowered Caden's meds last time, he doesn't have to get labs drawn today. That is the worst part about cardiology days around here. He knows exactly what's going to happen before we even get to the lab and it is not pretty. I am so relieved we didn't have to do that today.

We go back in one year, Caden will be almost SIX years old by then! I cannot believe his is as old as he is now, although he thinks beyond his age. I think these lessons he's had to learn so early in life will benefit him in the long run. The heart kids sure do teach us adults a lesson or two sometimes.

Hugs to my heart mom buddies, and to all of our friends. Your support means a lot more than you may realize. ♥

Scars

2011-08-08T16:03:00.004-05:00

It's been a while since I posted. Nothing big, nothing new with us... for once. Caden will be 5 years old in a few months. Five years... seems like forever. I had a thought last night. I went and looked at some old pictures of him. The ones before all of the scars.

Every time I touch Cameron's chest I think about Caden's. I can't help it. It angers me that I don't have more pictures of Caden before surgery. He was so young. I find it ironic that I literally cannot imagine my child without scars, while most parents can't imagine their child with scars.

I don't like to look. I don't have a choice. Neither does he.

I'm still waiting for him to ask. I'm dreading the thought of explaining it to him. I wish it would just go away. My poor baby has been through enough. Our family has been through enough. He has an estimated 2-4 years before the next surgery. I wonder how things will be different then? He'll be in school. He'll have friends and want sleep-overs. He'll want to be "normal".

When we left the hospital in May of 2007, our social worker told us to treat him like a normal child. Normal children don't have scars like this. Normal children aren't in the hospital for months. Normal children don't have to have open heart surgeries. How can we treat him normally if he's not normal?

How can we treat him like a normal child when we constantly watch him for signs of heart failure? There are things he cannot and will not be able to do. Things that we have to tell him that he can't do... because of his heart.

I truly believe that at this stage in the game, it's harder for Paul and I than it is for Caden. He doesn't realize the extent of his medical issues. He doesn't realize that him being alive is a miracle. I look at his beautiful little face and I can't imagine him not here. His quirky little attitude. His hilarious sense of humor. His thoughtfulness.

I just had to get some things off my chest. It's not healthy to bottle these things inside. There's nothing wrong, don't worry. These are just some of the things I think about. Love you guys.

Cardiology Checkup - 4/27/11

2011-04-27T13:12:00.006-05:00

This morning was Caden's semi-annual cardiology check up with Dr. Battiste in Wichita. Caden was so brave! They ran the tests they always run, and there are some changes from his previous reports.

There are two numbers they check for the pressures across the homograft. Neither of the two numbers are high enough to require surgery, or a trip to the cath lab in Kansas City, but they are higher than they have been in the past. His numbers before have always been relatively low.

She did change the dose on his medicine. Now, instead of taking liquid Captopril (10 mg) 3x per day, he will be taking 12.5 mg in a pill form 2x per day. This is good news, because now we don't have to worry about keeping his medicine refrigerated when we go on a road trip, to the zoo, or even just a holiday get together at Mom's.

We go back on October 5th for another checkup. We have always known that surgery will be required again, there is no way around that. Knowing that his homograft will eventually need to be replaced is hard, and this is the first time that his numbers have changed since we brought him home nearly 4 years ago. There is nothing we can do to change that fact, or the fear associated with it, but we are hoping to get at least another 2-3 years out of his current "part".

Thank you all for your prayers and for thinking of us today. This is not over, and in truth, it never will be. Your support means more than you will ever know. Love you guys!

Caden getting his EKG done this morning. He was so brave!!

March Update

2011-03-29T16:22:00.005-05:00

Things are going well, it's just been a while since I've updated. We are (and have been) in the midst of the "anniversaries" of Caden's hospital stay. I hate to think of them as anniversaries, can't there be another word? I've been debating about doing an update post for a while now, so I'll bite the bullet and get some things off my chest.

I can already tell you that this weekend will be hard for me. April 2nd was the day of Caden's second surgery, and the 3rd was the day that he crashed and was given CPR for an hour. The day they put him on that machine. The day that I wrote about in Caden's Feet.

I can also tell you that April 11th will be a mini-Birthday bash for Caden. That's the day he came off of the machine. I've said it before, but it was almost like him being born again. He was pumping his own blood again, all on his own. It's so amazing. He's so amazing.

I like to think that my family has grown a lot since those days and months 4 years ago. A lot has changed for us. A lot of good things. I guess in this time of the year, I have to remind myself of these good things instead of the "anniversaries".

One thing I know without a doubt: I love all 3 of the boys in my life, and I am so happy to be living the life I am. I am thankful that things have not been more hectic than they are, I know they could be! Caden does have another checkup in April. I am not going to say too much, but I think we will be getting good news once again. He shows no outward signs of tiring easily, sweating, turning colors. I will update with the results from the next check up.

On a side note, I'm just going to throw this out there. Please do not refer to my family as "the one with all of the heart issues". It may not sound bad to you, or to whomever you're speaking with, but it upsets me and it makes me think of things I quite frankly do not want to revisit. Even though we will someday. I'd like to keep those days as far away as possible, and memories only make it worse.

Thank you for keeping him and us in your thoughts.

Medicine and Potty

2010-12-17T11:07:00.003-06:00

Strange title, huh? But it's all exciting! Caden has successfully been weaned from his two diuretics, so now he's only on ONE medication! At one point, he was on 12 medications (I believe... it's easy to lose track). So this is a BIG deal! It's very strange only having to draw up one med as opposed to all three. He still takes it 3x per day, but that may change in the future. Most kids with his condition do get off of the meds at some point, so we'll see how long that takes.

Both of the kids did have horrible colds last week, and Paul took them to the Dr. I was afraid that it might be the weaning of the meds, but the Dr assured us not. He prescribed an inhalant steroid and refilled the Xopenex (Albuterol for heart kids), and after a few days, he is now back to normal. He's such a big boy when it comes to taking his breathing treatments.

Now on to the other big news! Cameron has been consistently going #1 and #2 on the potty at least several times a day! Woot! He won't be 2 until January, so this is very impressive to me. Caden was much older by the time he was fully potty trained. I am soooo looking forward to the days of no diapers! He loves to rip the diapers off and climb up on the big boy potty. It's adorable! As long as he doesn't fall in, I think we're good! :D

Happy Thanksgiving!

2010-11-24T12:41:00.003-06:00

We are busy running around like crazy getting ready for the Thanksgiving Holiday, but I wanted to post an update for you guys. :) I've been told that I should do it more often... Forrest.

Caden turned 4 on Monday this week, and so far he has had 1 BIG bowling party, 1 dinner (on his actual birthday) and he'll have 1 more party on Friday (after the rest of the family gets in town). WOW! That's a lucky kid! And a big thank you to everyone that came to his party on Saturday!

Cameron is starting to use more and more words. He is very adamant when he wants something, and then as soon as you give it to him, he throws it down... only to pick it up 5 seconds later and walk away. Oh boy! He's going to be a handful like his brother. He's a very good dancer as well (which he obviously does NOT get from his dad). Hahaha

We started doing "sleepovers" for the boys on Friday nights. We let them both sleep in Caden's bed, and they watch a movie before bed. We have to go check on them every few minutes to make sure no one is bleeding, but they have a blast in there together!

Caden is the smartest little booger. He remembers everything! We were driving down the highway and he saw the car dealership. Last SUMMER (before he was even 3!) they had one of those huge inflatable slides for kids. He went down it with his Nana. When we drove by it just the other day, he said "Remember when we went there and went down the slide?" Crazy!!! It's almost scary, actually! LOL

On the way to work this morning, it was "rush hour" and the light turned green. It took a while for the line of cars to start moving and he must have been watching. He said "Green means go!" Ha! We talk about and learn things when we're driving, and I know he didn't mean it as road rage, but it was funny nonetheless!

I'll try to remember to update this more often, Forrest. :D

Caden's Annual Checkup

2010-10-27T11:32:00.002-05:00

We went this morning to Caden's checkup. Overall, it is GREAT news!! :)

I didn't want to spring the appointment on him, and he loves going to the Dr (weird, right?!) so I told him on the way home last night that we were going to the Dr in the morning. He told me he didn't have any ickies, so he didn't need to go. Smart kid!

He didn't fully remember when we went a year ago, but he did AMAZING through the entire checkup. He had some silent tears at the beginning because he was nervous/scared, but after those were gone, he was very relaxed and even a little happy. I let him bring his Sponge Bob DVD for the echo, so I think that helped!

Overall, Caden's heart is doing amazing! :) He will be 4 next month, and he still has his original conduit (not uncommon) which they placed when he was 3 months old. She said that for the most part, the conduit still looks brand new! There is no narrowing, no calcification, and the gradient across the homograph is very low (which is what they want).

Caden is currently on 3 different medications, one for his heart and blood pressure, and 2 are diuretics. The Captopril (heart) is staying the same. The Lasix will be cut in half for 2 weeks, then stopped completely. (YAY!) Two weeks after we finish the Lasix, we will start the Aldactone wean, which will also last for 2 weeks before stopping completely. (Double YAY!)

We are going back in 6 months (April 27th) to check on how he is doing without those two medications. Hopefully things are still going great, and we will go another year before he has to get checked again!.

I also have to mention that Cameron was a real trooper through the entire appointment, which lasts about 2 hours! He didn't cry once, and he even sat on my lap while Caden was getting the echo. He held his hand and leaned over to put his head next to big brother's. How sweet!

Thank you all for your prayers, your thoughts, and of course for your support. ♥

It's that time again...

2010-09-30T15:57:00.003-05:00

It's almost time for another checkup for Caden. We went last October, can you believe that?! WOW! Overall, he is doing well. He is just as active as his brother, he just sweats a little bit more. I truly believe that this will be a good checkup.

Cameron and Caden are becoming the best of friends... sometimes. Ha! Brothers, I guess. :) Cameron still has his blankie that he has to sleep with. He is now saying a ton of different words. If I ask him if he wants to be tickled, he points to his stomach and says "right there" and pretty well too! His favorite things to drink are juice and milk. He will eat 3 bananas a day if I let him. He looks like a little monkey with half a banana stuck in his mouth! :) I'll try to get a picture of it for you. We went to the KU game last weekend. We whooped 'em, and every time we got a touchdown, everyone started screaming. Both of the boys looked around as if to ask "Can we yell too?" They started screaming and MAN did they have a blast! I'll add some pics:

This has become Caden's standard picture face. Not sure about that... LOL

And Cam was a big cheeser the entire time! He was actually growling at the football field. Haha

I will post an update after our appointment on the 27th of October.

Caden Day

2010-05-07T11:26:00.002-05:00

Today is Caden Day. I was getting him ready for daycare in his room. He has a Sponge Bob calendar on the wall and he was staring at it. I looked up and saw the date. I asked him if he knew what today was and he was curious. When I said "Caden Day" he got very excited! (As if he has any clue what all that really means). He's such a sweetie.

3 years ago today, we got to bring Caden home from the hospital. We had been there for almost three months, and gone through MANY things I never thought we would have to experience. Too many to remember, and quite frankly, I don't like to remember most of them. BUT, today is about celebrating Caden's health in the last 3 years, and all of the obstacles he has overcome.

Tomorrow is the Heart Walk in Hutchinson, Caden's big debut. We're gearing up for the BIG walk in Wichita, so this will be a good jumpstart! :)

Today is also the day that some dear friends lost their baby girl 2 years ago. Please visit their blog HERE and let them know you are thinking about them. We are all lighting candles today in honor of sweet baby Ava.

The walk is getting closer!

2010-04-30T10:49:00.001-05:00

Thank you to those of you who donated to Caden's team and showed your support! :) We are getting closer and closer to the walk date. If you are planning on coming to the walk, please register. You do not have to donate, and you do not have to set a goal for yourself. You can just set it at zero if you wish. The point of signing up on Caden's team is to show how many people are expected to walk. Plus, for every 5 people that register to walk for his team now through Sunday, we get entered into a $50 gift card to Strouds! Sounds yummy! :)

Go HERE to register (click join), and go HERE to get your Caden Team apparel! If you do not see Caden's items, just search for his name, Caden Konecny. Also, use the discount code located toward the top of the page for a price break on shipping. :) I think we should all wear one of these shirts, and the proceeds go straight to his team's numbers! Wow! :) Thanks to my mom for designing the shirts and other items and for setting all of that up! :)

I hope to see you there. Please get in touch if you have any questions!

Ashlea

Please forward this information to anyone you think may want to join us.

American Heart Association

2010-03-05T10:16:00.004-06:00

We are well into our adventure with the American Heart Association for 2010!

We have been to 3 different functions, the last being Wednesday night. Caden is an amazing little helper at the speaking engagements. He pulled out the ballots for the prizes the other night, and it was sweet. :) He did a great job!

At one point, Paul got up to go to the men's room. Caden screamed "Ooooh, I know! Daddy go pee!" Everyone was cracking up! :)

During the event the other night, we made a few phone calls to friends and family to start raising money for Caden's team. We raised $240 in 10 minutes! WOW!! A BIG THANK YOU to everyone that donated. Let's get to our goal of $1,000!!! All of the teams that raise $1,000 get entered into a drawing to go to Disney World. It's a 6 night stay right across the street from the park! WOW!! I think we might be able to reach that $1,000 mark, and how cool would it be to take the boys?!?!

You can go to this link HERE to donate to Caden's team. Just click on his name and donate. Thank you to everyone! If you donate, please leave me a comment here so that I know who you are! :)

Check it out guys!

2010-01-05T09:03:00.001-06:00

As I said before, Caden is the "rock star" of the American Heart Association Start! Heart Walk for 2010. That's a mouthful! I have been working with the AHA to get Caden's story out there, and the story was just posted on their website this week! Here's the link: Story

We had our first outing in mid-December, but next Tuesday is our first speaking engagement. Caden and I will be meeting with VP of Product Development and Engineering of Hawker and other executives from the Galichia Medical Group here in Wichita. We will be sharing his story with these very influential people.

I expect to have several more of these engagements throughout the year, so hopefully I'm not too nervous! :)

Check out the link! :)

Friend scheduled for surgery

2009-12-17T13:49:00.002-06:00

One of Caden's heart friends will be going in for surgery in January. Please stop by and let them know you are thinking about them. Thanks!

Monique

Good report!!

2009-11-02T16:49:00.003-06:00

I don't have a whole lot of time, but I just wanted to post about Caden's most recent trip to the cardiologist. At the beginning of each visit, she sits there with her hand on his heart. I'm not sure what she's feeling for, but she pushes down on his chest and then gets the stethoscope. She goes back forth between the hand and the stethoscope a few times, and then she looks in his ears and his mouth. She did comment on the great shape his teeth are in! :D Thanks to all that brushing. He brushes before nap time and again before bed. :)

When we got into the Echo room, he was a little leery. He had a small melt down in the first exam room, when he realized that he was at the Dr. :( He HATES going to the Dr. I can't say I blame him.

They did the EKG, and everything looked fine, the Dr. came in and started the echo, and Caden did great! :) He always does, but this time, he just watched the videos and every once in a while, he'd look at the Echo screen to see what she was doing. He was even holding her hand for a minute. Awwwwww lol

We (I mostly) always freak out when "it's taking too long". I realize that she's just being thorough, and who wouldn't want that?! It's so hard not to work yourself up though.

Turns out his numbers were slightly better than last time (AGAIN)! He just keeps getting better and better! His pressures are still very low through the conduit, and he seems to be handling his meds very well. She did say that the numbers may be better than last time because he may have been crying during the last echo. I don't remember him doing much crying that time, but it's still nice that his numbers continue to improve! :)

Because Caden is getting older, and he is not having huge growth spurts anymore, she decided that it would be okay for him to start going YEARLY!!! I about fainted. I have been waiting for the yearly visits for a long time now, and I still can't believe he's made it! :)

I really didn't care much for this particular Dr in the beginning, but the more we see her, the more friendly she becomes and the more we both begin to actually like her. She was the one that found the defect in the first place... well she performed his first echo anyway. I guess that makes me a little partial to her.

We are still on the same meds with the same doses. Have been on those doses for about a year and a half now. She said that by not upping the doses we are, in effect, weaning him off of them. Don't know how much longer he'll have to take them, she seemed a little hesitant to give a time frame.

All is well in Konecny land! :)

Cameron is doing well also. He's 10 months in less than a week! WOW that goes so fast. He is a super crawler! He'll get from one end of the house to the other in seconds! :) He's standing up on his own and starting to eat different kinds of foods. He'll be walking by Christmas, probably even Thanksgiving! :D I'll try to post pictures soon.

American Heart Association

2009-08-17T16:04:00.002-05:00

Paul and I (and Caden) had a meeting with Teri, the director of the Start! program of the American Heart Association about 6 weeks ago. I have not blogged it yet, don't know why.

Anyway...

Paul and I are the proud parents of the 2010 poster child for the American Heart Association's Start! program! What does this mean, you ask??

Well... Several things. Caden (we) will go around to several (8?) of the large corporations here in the Wichita area (Cessna, Boeing, Hawker...) and give presentations on what it means to have a child affected by CHD. We will be able to show pictures, tell his story and show everyone (mainly execs) how amazing modern medicine is, and why they should donate to heart disease research.

Our family will be featured on the commercials on channel 3 (KSN) for the Start! Heart Walk that takes place next June. Caden will be on the brochures for the AMA, along with a condensed version of his story. He will also be on their website, as the "focus survivor".

Needless to say, we are very excited about this opportunity, as only one child or person gets picked per YEAR. I think he's just the man for the job.

On a side note: A parent on the Online Truncus group did not like the fact that we are participating in an organization that does not fund "much" to congenital heart disease research. Well... I have done some researching of my own, and what she said really bothered me. We have decided that all of the funds raised on Caden's behalf will be specifically donated to such research. I have found that I can designate where our donations go, and thus, I am pushing it all that way.

I hope you all have your DVR's set! :) I'll let you know when to be looking out for our little hero on the telly and the web. :)

Pictures and News

2009-07-10T09:59:00.005-05:00

Sooo, it's been a while! :) Things are going well. Caden gets his hearing tested on the 13th, to make sure that's not a contributing factor in his speech (or lack thereof). Cameron goes for his 6 month checkup on the 20th. I'm interested to see how much he weighs, and what percentiles he is in. I'm sure he's right up the middle, as he has been. I'm still pumping away. He still has never had formula.. which I'm obviously proud of. ;) He's started on baby food. He does ok with cereal, but he REALLY likes the apples and sweet potatoes. He likes bananas, but they stop him up a little bit, so we're holding off on those for a while. He also like carrots, squash and green beans. :)

This is me, my sister and brother. I'm the middle child, so that's me on the right. Looks kinda like Caden, huh? ;)

Caden had a blast at the park. We went to High Park in Derby for the fireworks on the 4th... they were AWESOME!!!

Cam-o being his cute little self. This was when we were shooting off firecrackers at my mom's house. He sat in the stroller like such a big boy! How sweet! :) He can sit up very well now, only falls over occasionally. He also likes to stand up next to toys and the ottoman. I'll have to get a picture of that too. :)

I have a picture of Caden laying on this toy at about the same age... ok, not really. Caden was about 8 months old, but still :) I'll find it. Hold on... (as if you were going anywhere... LOL)

Caden's more pale than Cameron, but I think they kinda look alike. Like brothers anyway. :)

Iowa Trip

2009-06-26T10:55:00.006-05:00

We went to Iowa last weekend, to surprise my grandma. It was a blast! We drove to KC and stayed the night with some of Paul's friends. We got into Mason early afternoon on Saturday. We went to dinner and were standing y the register at the buffet entrance when Gma walked in. She looked at Cameron first, did a double, triple take, then looked at Paul and said "Well, hi" then she looked at me and said "Well hi!!!" It was hilarious, and she was definitely surprised. She looked so happy having all 4 of her great grandkids there with her.

I got some pics from the trip:

My handsome little devil :)

Cameron was boxing everyone in sight, with the help of Great Uncle Tony. :)

Me, my boys, my cousin Casey and her boys with Grandma Schu :) Looks like Blair is fond of his Cousin Caden :)

The big boys got to hang out together with my Aunt Sandy while we went down the street to the bar. They took a bath, and we had an awesome time! :)

Tuckered out after a long day of driving, playing and family time. That's the first time they ever met! I think they liked each other. :)

No news

2009-06-12T11:07:00.002-05:00

Things are pretty quiet on the home front. We've been pretty busy getting ready for our trip to Iowa next weekend. We are going up to surprise my grandma. We are driving to KC on Friday night, stopping by my uncle's house and then getting up early Saturday and going on up to northern Iowa. We are all going to meet at a restaurant and my aunt is going to get my grandma and bring her in. We'll have a lot of fun. She's never met Cameron, and most of my family up there have never met Caden. The last time we went up there, I was pregnant with Caden and we still had no idea about his heart. The only people that have met Caden are those that came up to the hospital to visit us while we were there.

We are staying with my cousin. She has two boys, I think the oldest is about 4 and the youngest is a couple weeks older than Caden. Her oldest was born about 3 months premature, and he was in the NICU for a very long time. I feel that we at least have a little understanding of what it's like to be stuck in he hospital for a long time.

I'll be sure to take lots of pictures! :)

Some pics

2009-05-30T14:15:00.003-05:00

Both boys are "sleeping". Not really, just laying peacefully in their beds. Crazy, huh? lol

I thought I'd give a little update and some pics. Things are going very well. Caden is learning to speak better and better. He's really starting to put more words together and his pronunciation is getting better as well. Cameron is a rolling fool! He rolls over and over and over and eventually hits something and gets very upset. It's pretty cute. He bonks his head on the TV hutch a lot. :)

This weekend is Derby Days. There's little kiddy rides and such. I think we are going to take the kids after Paul gets home from work. :) I'll try to remember to take pics. Our camera is kinda broken. The little latches that hold the batteries in place are broken, so you have to hold it shut. Pain in the butt, but at least it works... kinda. lol

Old pictures

2009-05-14T08:31:00.003-05:00

When uploading the pictures from our party last week, I found some old pictures on the other memory card. I couldn't believe what I saw. They were the pictures that I thought I had lost. Some of Caden pre-surgery. I knew I had them somewhere, but we had uploaded them to our old laptop, that died. I'm so glad I found them! Here they are. I think he looks like Cameron in some of them. :)

I took this one a few days before we went to KC for the first surgery. I can't remember his chest ever looking like that... His binky looks so big! I'm pretty sure there's another picture of him in the hospital, between surgeries, with that binky. On the right with the other pictures.

I don't know when or why I took this one. I think we already knew at this point that he would need surgery. I took several of his chest because I feared that I wouldn't remember his chest... good thing I did, huh?

This is of the back of his head, on or around 3/19/07. We were in room 21b, in the PICU. Don't ask how I remember these things. I think it's burned into my memory. This was only 5 weeks into our stay. We were there for about 12 weeks. It got so much worse than this, but you can see how the back of his head started to "creep up". I guess that's what you'd call it. The picture of me holding Caden on the right that says Mommy holding Caden in the PICU was taken the same day. If you were to look at him from the front, it almost looked like he had a cone head. Not anymore though! :)

Caden Day

2009-05-06T16:32:00.002-05:00

Tomorrow is the day Caden came home from the hospital. It is also the day that our friends lost their little girl. I have mixed emotions about it, but we are planning on going out to dinner or somthing for Caden. Something fun for him, to celebrate his two year anniversary. We had a party last year. I almost cancelled it last year, because... well, I won't get into it.

Paul and I decided that every year, on that day, we would do something nice for him, and then one day he'll ask why. That part was Paul's idea. I don't know why we can't just tell him. It's not a bad thing.

On another note, I posted on my blog a little bit ago. Just upset rambling, really. FYI

Good news!!!

2009-04-28T17:56:00.002-05:00

So, it turns out that it was mostly due to the weather. His pressures through the conduit look great! She said they are very low. We did the EKG, and that came back fine. Then we did the Echo, and she said that looked about the same as last time. He has moderate leakage with his Mitral and Tricuspid valves, and minimal leakage with his Truncal valve (the main issue). She told us that the average size conduit for an adult is about 20-25mm. If I'm remembering correctly, and he has a 19mm (I'm going to check his medical records tonight) then that should last him a long time!!! She said if he does have a 19mm, then the mostly likely case is that it's going to calcify before he ever outgrows it. We went over to the hospital for the xray to check for calcification, and she saw no signs of it. :) :) :) That's my happy dance! :)

Many times, if there needs to be something done to expand the conduit, they will go in through a catheterization and balloon or stent it. She said that they won't even think about doing that until the gradient (pressures) across the conduit get around 40, for the bottom number. Right now he's measuring 25/16. The numbers are supposed to be as close as possible, from what she said. The numbers represent the pressure in one of the top chambers, compared the one below it. I'm guessing the chambers in question are the ones on the left, as that's where his conduit is and that's the side that the aorta and pulmonary arteries stem from. So, they want to do a catheterization before an open heart in most cases, and he's not even anywhere close to needed the cath! That's the best news we could have hoped for!

Thank you all for thinking and praying for us and Caden. We don't have to go back until October 26th!!! Good job Caden! :)

2009-04-28T09:05:00.002-05:00

I was able to get Caden in today, at 3:00. I'm starting to think that everything will be okay. I got home last night, and we went to the Chiropractor. He did fine there, just a little bit clammy. Not at all how he had been for the past week or two. It was also not as hot yesterday as it has been, either. Hmmm... I hate this!

After we got home, I got him down to his diaper. Partly cause he was trying to go potty so often, and partly cause we were eating spaghetti and I didn't want him to get it all over him. Well, he was naked for about 30 minutes. He wasn't clammy after that, and I tried to take his temp. I tried under his arm, but he didn't want it like that, so I told him I'd have to take it in his butt. (He knows that word, and thinks it's hilarious) So, he let me. (Paul was very concerned about this... LOL) It was 99.0 when he was completely naked (ok, diaper), and had been for about 30 minutes. I'm starting to think maybe he has had a low grade fever for a week or so, he was working on his two year molars, as well as having a little cough. He might have been clammy as a result of the warmer weather, a cold and his teeth. I think I over analyze things... you think?

Some information that I'm not sure if I shared before. Because Caden was born almost 10 pounds, his heart was significantly larger than normal Truncus babies. Usually Truncus babies are born smaller, because of growth issues in the womb. Usually, not always. We were lucky. Some Truncus babies don't get to 10 pounds until they are a few months old... much less at birth. During his first surgery, they were able (gathered from his medical records) to fit him with a 19mm conduit from his heart to his lungs. A lot of times, they are only able to fit up to 9-10mm, but we were lucky that his heart was already so big...

I have researched conduit size since then, and I have found that "adult" size is considered to be anywhere from 20mm-30mm. That's a whole centimeter difference, but if you think about it, there are small adults, and large adults. The way I think about it, he has a 19mm in right now. (They didn't change it during his second open heart surgery, they just repaired where he ripped his patch back open.) If he grows as scrawny as his dad and I did, that should last him till he's a pre-teen, maybe??? The main concern for me, is that his conduit will start to calcify. That's the reason that it needs to be replaced sometimes, is because it's been in for so long.

I will definitely post sometime tonight or tomorrow with the results from today's cardiology appointment. I am going to ask her about the conduit size and calcification, just to understand it a little bit better. Thank you all for your thoughts and prayers, I will be in touch soon.

Ashlea

Poopy Potty!!!

2009-04-27T09:31:00.002-05:00

So, we've been working on the potty for a while now. Kinda touch and go. He has really started to take off with it though!

We've gotten to where we only give him M&M's if he goes potty. He gets 4 for a pee pee, and an egg from Easter filled with about 10 of them for a poopy. At least that was the plan... lol

Saturday, he said potty, so I sat down next to him on the kitchen floor, next to his potty. He sat down, and was talking to me a little bit. He pee peed and got very excited about it. He can feel it, and then he starts screaming, because he knows about the M&M's coming his way. :)

Then he got the "poopy" face. You know, the one where his little face turns kinda red? :) How cute! (Possibly only a mother or father would understand!) I asked him if he was going poopy, and he said yes! I didn't really believe him, but then he stood up and started pointing to the potty, screaming. I looked, and sure enough, he poopied in the potty! It was a big poopy too! :) So, I gave him the egg with M&M's for the first time ever...

He went the whole morning and part of the afternoon without ever using his diaper. Go Caden!!!!

Yesterday, we went to Kohl's and Paul got a bunch of clothes. We got Caden some big boy undies while we were there. He got to pick them out. Adorable! I remember when my brother was little, and his little briefs. It brought back memories! :)

This morning, when I left for work, I kissed all of my boys, and told them to have a good day. About 8:30, Paul called me and I missed it. He text me that I needed to call him as soon as possible. I (of course) freaked out and called him right away.

Here goes...

Paul was standing, unloading the dishwasher. Caden likes to help with this. :) All of the sudden, Caden starts running, ripping at his diaper like a mad man. (Paul's words :) ) He ripped his diaper off on the way to the potty, but he was already pooping. He got some poopy on the kitchen floor, on the seat of the potty (which he immediately sat on) and then from what Paul said, he only got a tiny bit of poopy in the actually potty. The point though, is that he did it! Paul gave him a Caden-sized handful of M&M's and proceeded to clean up the poopy smeared kitchen (and the back of Cadens' leg). He did it!!!

I am so proud of him, he's doing so great! :)

On another note, he goes back to the Cardiologist on the 11th. It's been almost 6 months already! I always get very nervous and anxious for a few weeks before his appointments. I have been freaking out a lot lately. He has been kinda clammy for about a week now. But, like Paul said, it's started really warming up outside, and he's a little boy, running around, using a lot of energy. His little head gets sweaty, which is very scary. He's not really tired though. I have heard on the online group that when it's time for another surgery, the kids get very tired all the time. Like, fall asleep during dinner tired. This is definitely not the case, so I am leaning towards him just being a little boy with a bad heart, who sweats more than the average kid. He's always working harder, and when he plays, it's that much more pronounced. I'm hoping so anyway. Please keep him in your thoughts in the next couple of weeks, especially on the 11th. I'm hoping that he gets a green light for another 6 months, and maybe we can even drop one of his meds! Thanks guys.

Ashlea

Updates...

2009-04-15T09:49:00.002-05:00

So, the therapist came out last week and did her evaluation. There were two people, actually, and guy and a girl. I went home for lunch so that I could hear it for myself. You know how men are with remembering that kind of stuff. :)

They said that he definitely qualifies for speech therapy. He has a few problems:

-He condenses his "sentences" into one or two syllables, and that's why most his words don't sound like any real words.

-He leaves off the consonants at the end or beginning of words, or he says it backwards. Like Du for duck and ga for dog. I know that doesn't make sense, but if you heard him, you would get what I'm saying.

So, he is still using baby words, and he needs to be drinking out of a big boy cup as much as possible. It helps develop different muscles that he needs to be able to speak more clearly. The first real therapy session will be on the 21st at 11:00. I may or may not go home for an early lunch. We'll see. That's also the day that we are taking Cameron for his three month pictures. I can't believe he's already that old! He's getting so big.

He can old his head up very well by now. He can roll over, though not all the time. He likes tummy time a lot. He "talks" a lot, and he smiles a lot. He loves bath time, and Caden likes to help with it too! Things are going pretty good right now. I'm still pumping up a storm. I get about 8oz every 4 hours. That's almost double what he needs, but I'd rather have too much than not enough. He still has never had any formula!!! :) I think I could feed him for about a month on what's in my freezer!

I'll let you know how therapy goes when she comes out on the 21st.

The Return of Rainbows

2009-03-31T15:18:00.003-05:00

Sounds like a good title to something. :) Children's book???

Rainbows was the therapy we used for Caden when we came home from the hospital. Sarah was awesome! He graduated a few months ago. Can't remember exactly when. Anyway, I called her the other day for consult. His speech is behind. Quite a bit.

The social worker came out yesterday. We just had to give her our insurance info and stuff like that. She has very little authority to say whether or not they will take his case or not, but she did say that from what she saw, he will most likely get speech therapy.

He just doesn't talk. He barely puts two words together and he still uses baby words sometimes. We really didn't think too much of it until we were hanging out with some friends of ours and their little girl was using complete sentences! Complete! And constantly. They're the same age... a week apart. I know that everyone says that once they start talking, you'll wish they weren't, but I really can't wait. I know that he's very smart, and anyone that's ever met him can see that. He just needs to learn how to communicate better.

The two speech therapists come out to the house next Monday to do the full evaluation, so we'll see. I really like Rainbow's. They did amazing things for him when we came home from the hospital, before he could hold his head up on his own. In the year she was coming out, he made soooo much progress. I can't wait to see what they have to say next week!

I'll keep you posted.

I have been taking more pictures too, I just need to get them on here. :)

2009-03-10T14:46:00.002-05:00

So things have been going well. Caden's going through a growth spurt. He's getting so tall, and it seems like he's getting skinnier, but that's hard to say. I was thinking the other day that (knock on wood) Caden hasn't been to the doctor yet this year. WOW ok, so it's only a little over two months, but that's huge!!!! :)

Cameron had his surgery on the 23rd. He went to his checkup yesterday. It went well. Well...

Paul had to take Cameron (and Caden) to his 2 month checkup yesterday for his shots and such. That was in the morning. Then, right after lunch Cameron had his checkup from surgery. Paul called me after the appointment to let me know how things had gone. While they were waiting (20 minutes) for the Dr. to come in, Caden pooped. He doesn't like poopy in his diaper any longer than it has to be. (We need to start potty training for real) So, Caden's now fussy and poopy. Then, Cameron decided to blow his diaper out as well. :) Then the Dr. came in and had to feel around Cameron's groin for the hernias. He got breastmilk poopy (gross) all over his fingers. lol Paul said it stunk so bad in there between the two poopy diapers. He had left the diapers in the car, because he was expecting it to be a short follow up visit.

When they got back to the car, he put them one by one in the trunk to change their diapers. LOL I wish I could have seen that! :)

And now, some pictures for your viewing pleasure:

The two boys getting ready for the big game! :)

He's flexing for the camera. See his bruise from the IV? He's doing great though.

Caden LOVES to get out that hair gel and play with it. He rubs it on his face like lotion. LOL He did daddy's hair, and it actually looked decent when he was done! :)

Helping Mommy clean. I spray, he wipes.

Such a big helper... lol

Spiderman in his PJs.

Me and Caden on our day (a.k.a. Saturday)

Cameron sleeping on the couch. He's getting so big!

A few pics

2009-02-19T11:40:00.001-06:00

Happy Big Brother!!!

What a happy boy!

In Papa's shoes... literally! lol

No News is Good News

2009-02-18T09:09:00.002-06:00

We haven't had a whole lot going on. Well, at least Caden hasn't! He doesn't have to go back to the cardiologist until May. He's doing really well. He has sooooo much energy, and he just loves his baby brother soooo much! It's very sweet. He lays next to him and kisses him and pets his head, saying "baby, baby". Very sweet. He likes to hold the bottle, get diapers for us, and he even likes to undo Cameron's onesie and rip off his diaper. He's a good little helper. :)

A new friend...

2008-12-17T08:11:00.002-06:00

Little "Turnip" was born this week, and has Truncus. His first surgery is planned for early next week. If you would please stop by, and let them know that you thinking about them. Thank you! Click here.

Updates

2008-12-12T10:38:00.003-06:00

Nothing much to report here. Pretty boring lately. Caden's doing really well. He had a little cough, but no fever or anything else, so we're just waiting for him to get over whatever it was that got him. He's learning new words every day, and he is getting more and more opinionated. He's going through a phase where he takes your hand and takes you all over the house, showing you different things, and how they work. He got our old TV from our bedroom, because Paul's parents gave us their older, bigger one. He loves to sit on his chair (from his great grandma :)) and watch the Wiggles. Over and over and over and over... lol. It crazy. He gets his fruit snacks and his water and sits in there watching. He only comes out when he wants more snacks or more water. It's pretty cute. :)

There are twin baby boys at daycare. They are really cute, and about 2 months old. He likes to rub (pet-really) their little heads and say "baby" :) It's cute that he's so gentle with them. I think he's excited. He knows what a baby is, and he also knows that there is one in my belly. He plays peek-a-boo with Cameron. :) He pretends that he's hiding him, and then he lifts up my shirt and yells "Baby!" He does it over and over. When he puts my shirt back down he turns his palms up and says "Baby go?" He doesn't know what a brother is, or who Cameron is, but he definitely knows something is happening. I hope he takes the transition well. I think we are going to continue taking him to daycare while I'm on leave. I'm only taking 6 weeks, so it shouldn't be that bad. He also only goes 3 days a week, so it shouldn't be too much of a strain on us financially. Cross your fingers!

I finally got Carol (day care) to decide on a price for the two of them. It's not even double! We are very fortunate to have such a sweet "Grandma" for him to spend the days with. She knows how expensive Caden can be, and it's nice of her to consider that. I expected it to be at least double, with an infant and all. I'm not saying anything else about it, but I'm definitely sticking with her as long as possible. :)

Bowling

2008-11-25T10:45:00.003-06:00

So we went bowling last night with some friends. It was really fun. Caden did pretty good. He liked to sit down and push the ball. He kept screaming "ball, ball, ball" and he didn't understand why he could only do it twice in a row. He looked so confused when someone else's turn would come. :) He's so funny. Paul was helping him, and it was really cute. :) I didn't bowl, partly because I really suck at it, but mostly because my center of gravity is already off balance, I don't need to be throwing a 10 pound ball around. :)

Birthday Fun!!!

2008-11-24T08:14:00.003-06:00

Caden had a great day! We made the rounds all day long. He got a kitchen, a working candy bear claw thingy, a bulldozer, an ATM, a Mega Bloks wagon, Mega Bloks blocks and clothes, and a Mega Bloks train... and some food to go with the kitchen. He also got a toy car set that came with a toy drill and screwdriver set. The cars come apart into big pieces, and he knows exactly how to take them apart too! I think I covered most of it. He loves to clean and cook. He has his own cleaning set, so now he has his own cooking set too!

Paul was making breakfast yesterday, and got out the eggs. He started cracking them and put them into the skillet. You know how to cook eggs, I won't go into it so deeply. :) Caden ran over to his kitchen, and grabbed his whole eggs. He showed them off, I guess to let us know that he knew what they were. Then, he found the little plastic fried egg and put it in his skillet. His little burner makes a sizzling noise when you put the skillet on it. :) He got out his spatula and was cooking his own breakfast. It was the cutest thing!

We have pictures scheduled for Tuesday afternoon. We are doing a family Christmas pic, and then Caden's 2 year pics. I'm excited to get that done! He hasn't gotten his pictures taken in a while. The ones on my desk at work are so outdated. Not for long though. :)

Thank you to everyone for all of his gifts. Please, if you are going to do something for him for Christmas, consider putting money into his savings account instead of gifts. He really doesn't need any more toys. He would probably beg to differ, but he'll thank us in the long run!

Birthday and Potty

2008-11-19T19:40:00.003-06:00

Caden's birthday is on Saturday. He will be the big 2!!! We're not having a big party or anything, but we are getting together with family memebers for lunch and dinner. Then we're going bowling on Sunday. I think he'll have fun. He's got enough presents coming, that's for sure! :)

This is the picture we sent in for his birthday announcement on the morning news. How sweet! Friday morning around 6:45 on KSN channel 3, for those of you in the viewing area. :)

I just thought this one was really cute. He was actually trying to see the TV behind me. I was playing The Wiggles for him. He's a freak about the Wiggles. 5 times a day... WOW.

He's been doing pretty good on the potty. Kind of tapered off a bit now, but he gets excited if you ask him to go. He was so excited when he went potty. His chair makes music when he tinkles. :)

This was less than 5 minutes later, when we made him go to bed. He was screaming "potty!" over and over again. Awww... he's a devoted potty goer. LOL

Cardiology Report

2008-11-05T11:53:00.003-06:00

Sorry I forgot to update about the cardiologist appointment the other day. No news is good news, right? Yeah!

This is what she said:

No ASD anymore (YAY)

Minimal (if any) VSD leakage (YAY)

All chambers are enlarged, but they always have been

Every valve leaks, Tricuspid and Trucal valves are mild-moderate. Mitral valve is mild.

The highest pressures she was able to read this time were what was in the "normal" range last time-maybe indicates that things are even better than last time???

He actually did really well throughout most of it. He watched the Wiggles and was doing hand signs through it. Kinda funny, I'd never seen him do that. Towards the end, when they look at the top of the heart, he started crying. He doesn't like it when they do that part. She has to push the wand down and it pushes into his chin/jaw. He hates that part. He was such a good boy though, for the EEG and everything! I was very impressed! I realy didn't have to go, but I worked through lunch to kind of make up for the time off.

She left his meds the same, going to let him kind of grow out of his dose, and hopefully one day we'll be able to stop giving him meds all together! I was hoping she'd go down, but that may have been a little too much to ask. We have to go back in 6 months. I was hoping for 9 or 12, but then again, maybe too much to ask for.

Overall, he looks just the same as last time, if not a little bit better. :) I'm so proud of little man. Not that he could help it, but still. Good genes, I guess. :)

Cardiologist

2008-11-03T08:37:00.003-06:00

Caden goes today to the cardiologist. Since I have to miss half a day of work tomorrow, Paul is trying to convince me that he can do it by himself. Well, I believe that both of them will survive, but if any of you have ever been through an ECHO with a near 2 year old, it's not fun! I'm hoping that this time, he handles it better than the last few times. He just hates that goop all over him, and she has to push that wand thing into that dip his collar bone, pointing down, to see the top of his heart. That's usually the last thing they do, but let me tell you, it's the grand finale.

The appointment starts at 3:30, but first they have to weigh him, and she comes in to ask a bunch of questions... ie: "does he pass out, does he sweat a lot, does he seem to be sleeping more than usual..." Yada yada yada. I know that some parents may not pay too close attention to that stuff, but you bet your butt if he started showing signs of heart failure, I'd be in there before his normal appointment was scheduled!!!

Anyway, then she has to listen to him, feel for his liver, push on his chest a bit (not hard), blah blah blah. Then we go to a different room, where they pull out the ancient TV and VCR. The nurse gives him an EKG, the doctor comes in a few minutes later, looks at it, then turns off the lights to do the actual ECHO. Well, Caden might not take it so bad if he didn't have to watch the same Barney video over and over again. But, last time we remembered his blankie, and he did better having that to rub on his face. He just hates to lay there so still for that long. Usually by the time they're done with the EKG and the ECHO, it's been about an hour or so of him laying there. That's not easy for any of us, especially Caden!

I haven't decided if I'm going to leave a little bit early today or not. Maybe if I take a really short lunch, then it'll make up for it. The ECHO won't start till 4:00-ish, so if I leave at 4, then I'll only miss one hour today. Then I'll miss three hours tomorrow. Maybe nothing else will come up the rest of this week. Cross your fingers for us!!!

Updates

2008-10-30T08:19:00.002-05:00

Well, not much is going on really. Caden's still doing pretty good. No coughs or sneezes lately. YAY!!! I don't know if I posted this already or not, but he's started doing this REALLY cute thing!

We usually get him all ready for bed and let him play in the living room for a half an hour or so. Around 8:30, we'll ask him "Caden are you ready for nite nite?" and he'll go find his blankie and walk to his room. We get his binkie and water and meet him there. Then we pick him up and set him in the middle of the crib and he stretches to give us kisses. Then he waves at us while yelling "Nite Nite!" He says it over and over. We turn off the light, close the door, and head back to the living room. He yells it a few times more, and then goes to sleep. We still have the monitor in his room (paranoia? Maybe) and you can hear him over it just wishing everyone good nite. He's so sweet!

He goes to the cardiologist on Monday. It's been six months already. I really think she's going to be impressed with him. He's doing so good. He's not sweating or sleeping a lot. He's pretty active all the time, and he's just doing great all the way around. I think his heart is doing great. I think it may have something to do with the double stitching Dr. O'Brien did on his last patch he got. I hope she'll lower his meds or stop one of them, or at least tell us not to come back for 6-9-12 more months. Hopefully 12, but I'm betting on 6 (like now) or 9. We'll see.

He goes in for his first Synagis shot on Tuesday. Blah. He hates shots, and I don't blame him. It's actually two shots.

He's going to be two in a few weeks!!! Eeeeeek! We need to figure out something to do for his birthday. I think we're going to take him bowling. He loves balls and knocking things over, so as long as he doesn't run down the lane, I think it'll be a big hit. :)

I don't know how many of you read my blog, but Paul and I did go to meet with a lawyer the other day. I don't want to get into it again, but if you want you can read it on my blog.

I'll let you know how the cardiologist goes.

Not much to report

2008-10-21T16:38:00.002-05:00

Caden's been doing pretty good. He's had some allergies. Sneezing and a little bit of coughing. He's not had labored breathing or anything, so I we're not too worried. He's got a cardiology appointment on the 3rd of November. I can't believe it's been 6 months already. WOW Time flies. I hope she tells us that we can quit one of the meds and go a year between appointments this time. I really hate going to the cardiologist. I'm sure Caden hates it more.

We're going to the pumpkin patch tonight. I charged up the batteries in the camera so that I could take a bunch of ictures. I'll have to post them. I'll try to remember to have Paul take some preggo pics of me too. I'm 27 weeks today. He's getting big enough that from the outside, you can feel his foot going across my stomach. He's big. I know he is. A little monkey. An adorable monkey. I think Caden's a monkey too. Just so cute.

He's been doing this absolutely adorable thing lately. At night, when it's time for him to go to bed, we say "Caden, lets go night-night." He goes to find his blankie, we get his binky and his water, and we all meet in his room. He stands there, ready for the crib. Paul picks him up, sets him in the middle of the crib, and we all say goodnight. It's so cute, cause he sits there, waving, saying "nite-nite" over and over. W say it back a couple of times. Then we turn off the light and close the door. Over the monitor, you can hear him for another few minutes, saying "nite-nite." But he kind of screams it. It's so cute! He doesn't throw a fit anymore. Even if we do it a little bit before bedtime, he's still okay with it.

He's such a sweetie. I'll try to remember to post pics soon.

Fun!!!

2008-09-25T08:27:00.017-05:00

We had a great time in Denver! Caden did great on the plane on the way there. He watched his DVDs and ate raisinettes and didn't even care about the noise or his ears popping.
Daddy and Caden. The flight attendant let us move to the back of the plane to have more space. How nice!

We went to the Rockies game the night we got in, and Caden made it up on the Jumbotron! We got a picture, he's in the upper right hand corner. The guy next to my sister won the fan appreciation prize (of course the next seat over!) and so Pam, my step-mom, scooted her way over so Caden could get in on the big screen love. :) It was so cute.

At the Rockies game-in his new outfit.

We spent some time in a small town outside of Colorado Springs, near Pike's Peak. We had a great time there too. Walked a lot, and I got really tired, but it's good for you. :)

Caden's new shirt.

Riding the helicopter was a favorite. He just giggled and giggled.

The fountain sprayed water all over him and he loved it! He's obsessed with water and ice. :)

The cutest little cow ever!

I figured I'd give you something to laugh at. :)

Eating his first chicken leg ever!

Pushing buttons at Grandpa's work.

I hope you all enjoyed the pictures! We had a great time, and I can't wait to get back out there again. Except next time it will be with two kids! Ack!

Denver... here we come!!!

2008-09-17T16:19:00.002-05:00

We are leaving for Denver on Saturday afternoon. I am so excited! I haven't seen my brother and my dad in months, and I haven't seen my sister since Christmas! She'll be amazed with Caden. I'm being the mom that makes a list of everything to take. Is that bad??? I've been working on it for about a week now. Paul makes fun of me. I'm a list person, that's all. :)

I hope he remembers everyone from last time. We bought him a portable DVD player, and got some DVDs for the flight. Thankfully, it's only a little over an hour. I hope he's occupied. I won't be able to do much with him (sitting on my lap), cause of the belly and all. It's supposed to be nice out, so maybe he can look out the window too... no clouds. I need to remember something for him to chew on, so his ears don't hurt. Hmmm... I'll put that on my list. :) Still adding things, and I'm sure I'll forget something anyway. I always do. We're trying to do everything carry-on. We'll see how that goes. lol I got some space bags to try to fit more stuff. I've secretly always wanted space bags, so it kills two birds. :) If any of you have suggestions other than books and dvds, let me know!

Oh my goodness!

2008-09-15T09:30:00.004-05:00

I've never won anything before... let alone a blog award! This is so exciting! Amy, Kaden and Angel Ava's mommy, has awarded me this award. :)

Okay, so it's my understanding that with my acceptance of this award, I must complete a few tasks.

1) Think of at least 5 bloggers that you believe to be “Brainy Bloggers”

2) Post it on your blog for all to see! Let them know you’ve awarded them by email, twitter, etc or via a comment on their blog!

3) Share some linky love and link back to both the person who awarded you. http://www.kadenboeckman.blogspot.com/

4) Come back to the Brainy Blog Headquarters to sign our Mr. Linky and then pass it on! I would like to pass this award onto the following brainy blogs:

1.) Charlotte's Mommy at http://www.charlottesjourneyhome.blogspot.com/ (Charlotte)

2.) Caralee at http://www.sydneybaker.blogspot.com/ (Sydney)

3.) Cindy at http://www.russcindyg.blogspot.com/ (Dylan and siblings)

4.) Melissa at http://www.momoftwolittleones.blogspot.com/ ( Morris Family)

5.) Sara at http://www.botmafamily.blogspot.com/ (Zach)

I could only pick five blog friends to pass the award onto, but that doesn't mean that I don't love reading up on all of you. In fact, I check up on all of you regularly. :) Don't let that creep you out. :) Thank you Amy, for thinking of us.

Ashlea

More Medication

2008-09-09T11:16:00.002-05:00

Caden just went to the doctor with Dad. They had to take xrays, cause he has been breathing pretty hard for a couple of days. He has been teething for a few weeks, and he has all four of his pointy teeth coming in. You can see them all, and he is slobbering and his nose is running and he had a 99.4 temp last Friday. That's really low, so I figured it was related to teething. I think it was, cause he hasn't had a fever since. At least it wasn't high enough for me to want to check it. He started with a little cough on Saturday, and a really runny nose, but it was watery-clear, so again, no infection or anything. I thought that while he was sleeping, his nose was draining down his throat and congesting him. Well, Sunday was about the same, but not any worse.

Monday I was at work, and Paul called to say that Caden had a hard time falling asleep for nap. He was kinda cranky all day. (Caden, not Paul :) ) Well, by the time I got home from work last night, he was having very labored breathing and not really too much of a runny nose. He didn't have a fever or feel warm unless he was crying, which doesn't count in my book.

So, we gave him a breathing treatment of a safer form of albuterol that we had left over from when his lung collapsed a few months ago. That helped sooo much. We put him to bed, and he slept fine until about 2:00. He woke up, so we brought him into our room, and he was coughing a bit (it sounded horrible) and unless he was in a deep sleep, he was having very labored breathing. Paul called this morning to make an appointment with our pediatrician, and they tried to get him at 1:30. Paul told them who Caden was and his "issues" and they were able to squeeze him in at 9:30. Go figure. At least we get VIP status somewhere... and where better?

His sats were 96... YAY!!! Well, they then gave him a breathing treatment and took an xray. The first one didn't take, so they had to put him in that horrid xray contraption again. He got really mad and started thrashing. He busted his lip and was bleeding all over the xray machine. The nurse said that no one had ever done that before. Of course not. Caden's job is to do all the "firsts".

He has a little area of (not pneumonia) infiltrate in his right upper lobe. Same place he had it when he was in the hospital. So Paul's at Walgreen's as I type this. He's getting a broad-spectrum antibiotic, Xopenex (albuterol), Mucomyst (same as in May), and some other steroid that Paul didn't know how to spell. The Dr. said that his lungs don't look nearly as bad as they did in May, so that's great news. I'm so glad we decided to take him in when we did. Paul said he was in a great mood this morning. That always happens. We are nipping it in the bud, and I am happy about that. Any hint of anything and I freak out, but that's okay. We are going to Denver on the 20th. Go figure! Every time we go out of town, he gets some lung issue. At least the insurance company purchased the nebulizer last time, so we don't have to rent one. When we gave him that treatment last night, he had the mask pressed all the way to his face, and he didn't even cry. It was like he knew it was going to help him. He's such a sweetie. I can't wait till he can talk to me, and tell me what hurts, or that he can't breathe. But then again, I'll be wishing that he couldn't talk yet. :)

We are supposed to carry on for 4-5 days, and call the doctor with an update. I think we finally found a doctor that agrees with us, and takes us as seriously as we should be taken. I like him a lot, and am very comfortable with his treatment plan. That always helps. He knows that we don't call unless we really feel we need to, so I think that helps.

On a more positive note, Caden now tries to sing his ABC's. If you start singing it, he'll start dancing and he'll sing it himself. None of the letters are right, but he has the melody down, and you can definitely tell what he's singing. It's very cute.

Opinions please...

2008-09-04T10:51:00.006-05:00

I've been thinking a lot lately about something. I feel like being pregnant with this baby, things are being done right this time. As far as checking the organs and stuff. I feel like with Caden, things were just overlooked. Like they did the sonograms too fast and checked him too fast and all that. A while ago, my mom was saying that we should consult a lawyer for medical malpractice. Let me tell you a short story, with the major details, and you tell me if you think it's worth a shot or not. My goal is not to get a bunch of money, or to be able to retire at age 25. My aunt said that we don't want another baby to have a missed diagnosis, or to pass away because of something that I could have prevented. I just don't know. It's kind of an ethical question.

When you're pregnant, you are supposed to have a sono around 18 weeks. This time, I was 17 weeks, 6 days. One day, no big deal (they checked the heart well). With Caden, I was 18 weeks, exactly, according to the date on the sono pics I kept, cross referenced with pregnancy calendars that show days and weeks of pregnancy. They didn't catch it with Caden, which we all know. When he was born, we were at the Birth Care Center, associated with Wesley Hospital. The pediatricians that checked him at birth said that everything was fine. They checked everything, listened to his heart, and everything was fine. The first doctor to check him was a male resident. Then the attending came in, and I remember it distinctly, because Caden was holding his head up, and she made a comment about how "is he a day old, or two months old?" and was laughing. She checked him too. Nothing.

When he was born, he was too fat to get circumcised, so we had to take him on Dec 15, at about 3 weeks old to get it done. They supposedly listened to him then, and heard nothing. It was not our regular pediatrician that did that, but a man (the attending pediatrician was a female). We weren't in the room when they snipped him, so I don't know if they checked him or not. They should have, if they didn't.

We took him in for his 6 week checkup, some time at the beginning of January 2007. Paul's mom went with me, and a female resident listened to him, saying that he sounded fine. The female attending came in a checked his hips like they do, and I remember her listening to his heart. Nothing.

From the time he was born to when he got diagnosed, he had labored breathing. To the point that he was "shrugging" with each breath. His nose was flaring and his head would bob. Well, now I know that that's a sign of heart defects, affecting the lungs. In the first two weeks of his life, he went from 9 lbs, 12 oz down to 8 lbs, 9oz (or very close to that). We had a nurse come to the house to check him when he was two weeks old, and she didn't detect anything either (that's how I know how much he lost). She said it was normal to lose a little bit of weight. Well, that's over a pound, and at the time, that was 12% of his birth weight. I don't know if that should have been a red flag or not.

He got diagnosed on a Monday (at 8 weeks old), cause over the weekend, he developed a terrible cough. Turns out it was heart failure, and his lungs were saturated, so he couldn't breathe. Well, He had an appointment scheduled for that Thursday, but I called and they were able to get him in that day. When we got to the pediatrician, the nurse checked (for the first time ever) his O2 sats. They were 74. She checked it like 3 times, and when the same female attending as last time came in, she listened to him, got a worried look, and left. They admitted us, so we went across the street to the hospital. We were there, getting treated for bronchitis, and a different resident (wow, I know) was just passing some time and asked if he could listen to him for a sec. He's the first one that ever heard the murmur. He was officially-and correctly-diagnosed later that night.

My thing is this-if someone would have caught his heart defect and he would have had surgery at two or three, even four weeks of life, then his lungs wouldn't have had a chance to get so diseased (why they thought it was bronchitis). He had his first crisis at the beginning of March because his lungs couldn't handle the increased (corrected) blood flow. If he never would have had the chance to go into heart failure at 8 weeks, then his lungs may not have diseased at all, therefore no crash, no ripping the patch back open, no heart cath, no second surgery, no resuscitation, no ECMO... yada yada yada. And who knows if his future surgeries and recoveries will be more difficult as a result of that???

What do you think? I think there's a statute of limitations, but I'm not sure what it is. I should look it up. I mean, is it even worth a consultation? My OB did everything he was supposed to, but did the sono tech screw up? Should she be held accountable? Which resident? There were 2-3 and I don't remember their names. We could find out, I'm sure. Should it be the attending, who was overseeing the residents? I just don't know. I feel like I wouldn't have had as much emotional stuff this past year and a half (and in the future) if he wouldn't have had all those complications.

I mean, who's to say he wouldn't have had any complications anyway? Maybe he would have, but maybe not. Not to mention the enormous medical bills (which have been paid for by insurance mostly). He shouldn't ever meet his lifetime maximum of 5 million, but he's already over 1 million. What if he gets a job somewhere when he's older, and that's their insurance and he can't get it cause he's over the maximum? I know, I'm projecting way too far out there, but I'm just asking.

Thanks for you input. I'm really not looking for a get-rich-quick thing. That's part of the reason I haven't done anything yet.

Thanks guys,

Ashlea

Bubble Mowers and Bunk Beds.

2008-08-28T10:27:00.006-05:00

We were out and about this weekend, looking for a solution to the soon-to-be bed problem in our house. We were thinking about maybe doing bunk beds for the boys, and Caden can just use the bottom bunk for a couple of years until the new baby is ready to move into his room. Well, we still haven't completely decided, but we think we are going to build Caden a bed, and then build an identical one when we need it. I found some plans online, and I know how crazy we sound. Paul and I are actually accomplished Do-It-Yourserlfers, and decent woodworkers, so I think we can get it done.

Depending on how it turns out, I'll post some pics. LOL

While we were out, we stopped by babies r us. It was kinda fun to see all the new baby stuff they have out, and how ridiculous some of it is. It reiterated the fact that we have everything we need, and not to buy anything. :) We did, however, find a really cool bubble mower that was only $15.99! I had a 20% off coupon, so it was like $13 or something. We put him down for a nap when we got home, and put it together. When he got up, he saw it, and I thought he was going to faint. :) He screamed like a crazy boy and ran to it. He didn't push it fast enough to make the bubbles work for a while, so we had to show him. Once the bubbles started, he was in love. He won't even take a bath if it means being away from that thing. It's sweet, and a great buy for anyone with small children.

I'll try to get picks of it on too. :)

Funny boy!

2008-08-19T09:23:00.014-05:00

From Caden's Myspace page... (yes, I copied and pasted... I'm lazy today)

I'll give you some background first...I'm pregnant, right?

So, I like to eat cereal every morning. (If I don't, I'll starve by noon) My favorite is Lucky Charms. I like the marshmallows. :) The thing is, so does Caden. So, I try to eat my cereal before Caden gets up in the morning, or he'll stick his whole hand in my bowl and "fish" for the marshmallows. Kinda gross, and he won't stop till they are all gone. :)

Well, this morning I was almost done, and I heard him start "talking" over the monitor. I knew he was fine, so I waited until I had finished my cereal. I got up, walk across the house, and open his door. Caden has known for some time now how to take off his diaper. And this morning, he was standing up, sans diaper, with his winkie through the crib bars... peeing all over the floor. I think he was aiming for his diaper (that he threw out of the crib), as the pee was concentrated around it.

I thought it was just a little bit on the rug, so I got a small rag and started wiping it up. Once finished, I stood and walked closer to the crib to pick him up. Well, the little bugger must have "changed directions" cause the majority of the pee (hee hee) was directly underneath the edge of the crib... and my my foot.

He was so proud, it was so funny.

--------------------------------------------------------

Caden got a haircut last night on the way to Nonny and Grandpa's house. He was so still and quiet through the whole thing. He didn't squirm at all, and he actually thought it was pretty funny for most of it. He cracks me up.

His little hand didn't move for a long time. He was concentrating. lol

Caden's sweet little smile! The lady thought he was something else!
That's when she started in with the buzzer. :) Can't help but laugh out loud when I see this one.

I thought I'd add in the mower one, cause he was pushing it around at my mom's. That was a few weeks ago, and he is now obsessed with lawn mowers. He has a name for it, but it doesn't make any sense. He gets so mad if we pass one and he doesn't get to push it around. We went to Lowe's the other day, and they had a huge row of mowers out front. Caden about lost it, he was so excited!

He also has a new thing about helping me clean. Saturday is my "deep clean day" and he always likes to help. I have since filled a squirt bottle with water for him. I keep it with the other cleaning bottles above the sink, because he thinks his is "for real" that way. He gets his bottle when I get mine out, and he gets a rag. We both spray stuff and wipe it down. He usually does the cabinets or the floor, and I do the counter and the top of the stove. He actually sprays and wipes it down. He also has a thing about vacuums. He loves them. We have a small vacuum that I use for the hard wood, and if I let him, he'll push that thing around all day. If we go to Walmart, and pass the vacuum aisle, he freaks! Screaming and pointing at those marvelous things. LOL

He loves to help you empty the dishwasher. He'll hand you one utensil at a time... knives removed first of course. It takes forever to empty the dishwasher that way, but he likes to help.

I caught him on the laptop the other day. It was turned on, but he got to the Internet all by himself. He's amazing! :)

Just like Top Gun :)

Just a cute picture.

On another note... we went to the sonogram yesterday. I've posted pics and the findings on my blog.

Caden's friend Dylan

2008-08-05T08:48:00.002-05:00

Baby Dylan was born on Friday last week, and has either Truncus or Aortic Valve Artesia . He goes in for surgery tomorrow (Wednesday) morning. Please visit their page and just let them know that you are thinking about them and sending prayers their way.

Thank you!

russcindyg.blogspot.com

Graduation!!!

2008-07-29T16:54:00.002-05:00

Sarah (the therapist) came today, while I was at work. Paul called on my lunch break to inform me that on the next visit, Caden is going to graduate! I am so excited! I think that's the best birthday present I've gotten so far. Awww... I think I'm going to go home and be there for the "graduation." That's so cute! I wonder if he gets a little hat. Probably not, but it'd be cute! I will try to remember to take pictures, I've been really bad about that lately.

I don't know yet when it is, I'll have to ask Paul. She said he's all caught up now. It's a miracle, from where we were just 15 months ago. Her first visit was May 14th, 2007. He's come so far. I'm so proud of him. I'm going to be a mess at his kindergarten graduation... LOL

Results...

2008-07-24T13:43:00.002-05:00

So, we went in (a little late) for his appointment today. They made him wear an ankle bracelet and everything. Well, they did the ultrasound on his groin first, and he did great with that. He didn't bother her, and when she turned on the sound to hear his pulse, he just looked at the monitor and watched. Then we had to take his shirt off to do his neck, and that wasn't so great. As soon as he saw the wand, he started freaking out. He didn't cry for long once it was on his neck, but the sight of it scared him, I think. Thankfully, the neck part didn't take as long, and she took the results to be read before we left.

The Dr. looked at them and decided that there is no evidence of any clot anywhere! I had a feeling that after months of lovenox and over a year of daily aspirin that it would dissolve. I'm pretty happy about it. Not a huge deal, really, but exciting none the less.

Appointment

2008-07-21T09:08:00.002-05:00

So... Thursday, Caden and I go to Wesley for an appointment for an ultrasound. Not the kind you are thinking... :)

When Caden had his first surgery, 17 months ago (WOW) they had an Art Line in his Femoral Artery in his left groin. Well, he only had it in for a week or two, but it created a blood clot. He also had a smaller clot in his right neck from one of the IVs.

If you remember, we gave him lovenox (blood thinner) shots in his thighs twice a day for months after coming home from the hospital. We went back to KC last summer and they did an ultrasound on his neck and groin. They decided he didn't need to be on the lovenox anymore, but instead we started giving him a low-dose aspirin everyday. Well, that's been about a year now. When we went to the cardiologist in June, I asked her about how long he should have to take that. So, she decided that after his lung popped back open, and things were going better, that we would schedule another ultrasound and see if we can stop the aspirin. Of course... it's the cheapest drug he's on, so that's not the concern for me, it's just that I want to make sure that the clot truly is gone before we stop giving it to him. I don't want it to get dislodged and travel through his body.

When we went last summer, they said that they were unable to find the one in his neck, and the one in the groin was smaller than it was previously. Hopefully that trend continued!!!

I will let you all know how it goes.

Finished!!!

2008-07-11T08:48:00.004-05:00

I forgot to tell you all that we finished our basement. I have been really lazy lately (I'm blaming the baby, lol). Anyway, we finished the basement about a week and a half ago. As soon as we got the carpet in, we couldn't help ourselves. We were so close. So, we built some shelves in the corner for the fancy new TV and DVR. It looks pretty good down there. Except for the humongous weight machine in the corner that a certain someone thinks he's actually going to use. ;) Oh well, if we took it apart, it would take up most of the space in our storage room. I haven't taken any pictures of the finished product, but I will try to remember to do that tonight or sometime soon.

Have a great day!

Ticky Ticky Ticky!

2008-07-01T09:02:00.003-05:00

Caden's new and favorite game is tickling people. He'll walk up (or crawl over) and stick out his index finger. Then he'll start to tickle you wherever he can, and he says "Ticky ticky ticky" It's the funniest thing I think I've ever seen. He gets this look on his face too, that's just perfect. Like he's waiting for you to laugh. It's hilarious, and you can't help but laugh. His favorite place to tickle is your stomach, after he lifts up your shirt. He did that to Paul the other day, while they were sitting on the couch together. Caden lifts up your shirt just high enough to see your belly button, and then he sticks his finger in it, and goes to town. It's so funny.

Paul's Dad and step mom came over last night, after she had watched him for the afternoon. We ate dinner and were playing with Caden. He is getting so good at walking! It has literally been a few days, and he's ready to walk full-time. Which is great, cause daycare will be cheaper when he is walking! If you ask him to stand up, he will... by himself in the middle of the room. And then he'll just start walking. Sometimes he has to start over again, cause he doesn't have good balance, but he's doing amazing! He's getting to where he wants to walk more than crawl. He walked all over the house last night. He didn't like the transition from the carpet to the tile too much, but he kept on going. I will have to get video of it, if I can ever figure out how to get it on my computer. That's been a struggle for me. :(

Walking better!

2008-06-26T08:22:00.003-05:00

Right when you start to not think about it so much... bam! He's actually doing a lot better with it. He does it without really thinking anymore. It used to be that you'd hold his hand and pull him so that he'd walk. Now, you hold one hand, and he's pulling you, telling you where he wants to go! He's started standing at the ottoman, and just walking over to his toys. I haven't counted, but I'd say the most he does in a row is about 20 steps. He knows when to slow down, and how to pivot (slowly). He was sitting the other day by the chair, and instead of crawling over to the ottoman and then standing up, he put his hands on the floor, stuck his butt in the air, and stood up... and started walking!!! I couldn't believe my eyes! It was amazing. He's getting to where he realizes that that is just as fast, if not faster than crawling. The therapist told us to hold a washcloth, and let him hold the other end. That way, he feels like he's holding something, and we can let go without freaking him out so much. That works, but sometimes he notices that you aren't holding on anymore. He is still crawling most of the time, but he is just building his confidence right now. Have a great day guys!

Carpet!!!

2008-06-19T08:34:00.002-05:00

So, if you didn't know, we have been "working" on finishing the basement. We gave ourselves to Thanksgiving to get it done, so it seems that we are right on schedule! Just kidding. We went to Lowe's and ordered the carpet, and then they measured, and then we had to go pay for it, and then we waited for almost two weeks for them to call and schedule the install. It was scheduled for Tuesday afternoon, and he called me at 8:30 in the morning, saying he was on the way. So, why do they even schedule it? If they are just going to come whenever they want? Sooooo annoying. The whole carpet-getting process took about 2 months. Yep. Good thing our deadline was far out!

It looks great though. Of course, Paul felt the need to go out Monday night and buy a big TV for the basement. He "wanted to make sure the kids would have something to watch down there." Isn't that sweet??? Heehee. So, the second (third) living area should be completed within a couple of weeks. We need to paint and put up the trim, and paint the finishing touches, but I think we are scarily close to being done. I am soooo excited!!! There has been furniture (coffee table, love seat, arm chair etc.) in the office for 2 months now, and you can't even walk around in there.

We are actually going to move the office downstairs and turn that room into the nursery, so that Caden doesn't have to give up his room. I don't want to give up the guest room, either. It seems like when we have company, we REALLY have company. So the basement will probably be used for people to sleep too. I will post pictures as soon as I get around to it.

Another Xray

2008-06-10T12:57:00.003-05:00

The doctor's office called yesterday and they wanted us to bring him in this week to check his lungs again. Well, Paul took him in this morning. The xray machine they use is this contraption that you actually put the baby in and this clear plastic body armor goes around the baby's whole body. Their arms have to be straight up and their legs dangle through the bottom. He hates it. They have to snap the shield thing, and it's pretty tight. He always hates it, and quite frankly, I'm glad Paul's the one to take him most of the time.

Of the two that they took, the second one didn't turn out, so they had to put him back in the machine. Well, that one took finally. They looked at the xrays and they decided that these looked even better than the last ones, taken last week. We are going to continue with the medication for another week or so. I wish I could see what they look like, but that's ok.

Caden is going to get to see his little brother or sister today!! Assuming my doctor will do an ultrasound today. I'll ask if he doesn't offer it.

I'll keep you all posted as time goes on.

Progress!!!

2008-06-03T09:06:00.005-05:00

So, I was supposed to take Caden to the doctor on Wednesday, tomorrow, for an xray to check his lungs. Paul called them yesterday to see if they could get him in so that I didn't have to take off work. (Paul is off every Monday and Tuesday.) They were able to get him in yesterday, and they took the xray. From what Paul said, the nurses were so happy to see him in a good mood, and when the doctor walked in, he was pleasantly surprised at how happy and energetic Caden was. He's doing so great! They looked at the xray, and the collapsed lobe looks a lot better. I obviously didn't get to see it, but Paul was saying that you really have to look at it in order to see the shadows. Last time, two weeks ago, it was bright white in that section. He said that you can barely even see the lungs!

We went to a friend's house last night for a birthday BBQ. The ones with a little girl Caden's age. They had a blast! She just loved him! She was hugging him and kissing him and it was just so sweet. The two of them were playing in her room, and you could just hear them laughing at each other. That is such a sweet sound. It brings tears to my eyes thinking about it.

He had a bunch of food, and then they broke out the cake. Chocolate with chocolate icing and little kiss things on top. He was a maniac! He ate the entire adult-sized piece! He's crazy. He was crazy, after that! Hehehe. Sugar buzz.

He pushed my jewelry armoire over yesterday morning while I was at work, and when we got home from the BBQ, I was re-organizing the drawers. I had them lined out on the bed, and he was sitting there on the bed watching me. He would lean over, real quick and grab an earring or something, and then try to get away as quick as possible. He would jump and dive into the pillow. He thought it was hilarious, and he just kept doing it. He's so funny. He knows when he's not supposed to have something, cause he tries to hide it, or hide himself. He does the whole ostrich head-in-the-sand thing pretty well! :)

It's obvious that he feels a lot better. He is back to his crazy self. He's making faces again. (which he wasn't doing for a while) He makes this really funny face. It's his excited/surprised face. I'll put a picture of it on. It's from his party at the beginning of May. That was pretty much the last time he was feeling this good.

Feeling Better

2008-05-28T09:38:00.002-05:00

We decided to go to California, and we had a lot of fun. We dropped Caden off at Paul's dad and step-mom's Friday night. We had to tear ourselves away, but we got out of there around 8:30 or so. We called non-stop, of course. He was fine! He started that new treatment Friday night, and it had an amazing affect on him. He doesn't cough anymore, even at night! He is eating again... though I don't know how much he weighs. You can just feel it on him though, that he has gained some of it back that he lost last week. He lost over 1/2 a pound last week. Poor guy. His little tummy sticks out a little bit more. It's cute.

Man, you can tell he got spoiled while he was there!!! We got back to the KC airport last night, and drove to Wichita to get him. When I got him up this morning, he wouldn't eat his medicine for anything! He thought he needed a poptart or something. We usually put it in some rice or oatmeal, and give it to him that way, but it's like he can taste it now. I had to draw some up and squirt it into his cheek. He is doing much better though. He only coughs during/after the treatments, which is good, since that's the point. He got to play with his cousins, because they came down over the weekend. He had a blast. They said they put him on two phonebooks, and strapped a belt around him to sit at the table, and he thought he was hot stuff... of course. That's a funny thing to imagine.

I am so glad he's feeling better!!! We go back to the pediatrician next Wednesday to get another xray. If it looks better, we'll stop it, if not, we'll have to go to the pulmonologist. Everyone keep your fingers crossed!

Now I'm REALLY laughing!

2008-05-22T16:02:00.003-05:00

Paul's step-brother-in-law is a pharmacist, so he called him. Our doctor has been on the phone all day talking with drug companies, trying to get samples and what-not. Well, Paul's "brother" said that there is another medicine that is rarely used, but essentially does the same thing. It's called Mucomyst, and it clears out the mucous and gunk out of the lungs. There is a generic of that one (the pulmozyme doesn't have a generic) and it's called acetylcysteine. What's really interesting, is that he said that it is actually used for an overdose of Tylenol. I'm pretty sure that's what he said. Isn't that weird??? He also said that since it's so rarely prescribed, doctors don't usually think about it first as a pulmonary drug. Well, I called the doctor, and told his nurse about it, and she said she would tell him, but it may not be an option, because the pulmonologist specifically said pulmozyme.

These are too big of words, my fingers and my brain aren't working together very well. :)

So, she called me back like 5 minutes later and she said that she told him, and that he said that would be an option if we could not get samples and what-not. She just called, about 10 minutes ago. She said that they were unable to obtain enough samples, but she did go ahead and fax over the prescription that Pat had recommended. She had good news and bad.

Bad: They do not have in stock.
Insurance does not cover it.

Good: They can have it tomorrow by 1:00.
Without insurance it's $30.

I can't believe that. Way to go Paul! I am so happy, I could do a dance right here. Good thinking calling him first. I'm so excited. For the first time in a long time, I feel like "the system" is being manipulated by us instead of "them." I feel like such an advocate. :) Isn't that insane???

Awww, my sweetie's fighting the system. :) That's funny.

Caden's feeling okay. He is taking the treatments a lot better. I think it just scared him at first. He's getting used to it and he was actually laughing at the other kids today when I went to give it to him. He's such a sweetie... and a trooper too! His coughing is a little bit better just by using the xopenex. It will apparently be fine for him to wait till tomorrow to start the other medication. I am really not too worried about it, because he seems to be breathing a lot better now. I am so proud of little man. Forget the walking, this is great!!! Maybe this is what I needed to snap out of the "walking fixation." Who cares if he walks or not. I'm proud of him either way.

Thank you all. I think we are going to make a decision tonight on whether or not we are going to San Fran. We'll let you know!

This is almost funny... almost.

2008-05-22T10:31:00.003-05:00

So Caden and I went to the pediatrician this morning. His gunky eyes (started yesterday) are a result of congestion, and it's nothing to worry about. They took labs of CBC and CMS (or something like that) which he didn't like at all. They should have the results of those later today. We are going to have to give him chest PT during the treatments to help him break it up and cough it up. We go back the 4th to see what his xrays look like.

So, I went to Walgreens to pick out the pulmozyme and while in the drive-thru, the technician buzzed over the radio, saying that she wanted to clear something with me real quick. She informed me that the drug was covered by our insurance, but our portion of the cost was $1,600 something. It really doesn't matter about the other 50 bucks or whatever the total actually is. How do they expect people to pay for this stuff??? Even if you could afford that, that's just ridiculous. I can't help but laugh.

It's not like we've shelled out three grand this year or anything. :) I told Paul if this keeps up, there is no way that we couldn't go on Medicaid. We are technically a family of four now, so the income would change. I don't know. What do you guys think? The way Paul's mom put it, is that between all of his grandparents and step-grandparents (he has 13 if you count greats) they have paid in tons of money throughout their lives, and she, at least, is happy for it to go towards Caden. I see her point. I am seriously considering that. I would probably go crazy staying at home, but we have to really weigh our options. It would be worth it in the long run for Caden's development and health as well. Keeping him away from germs at daycare. We will have to seriously discuss this option.

The doctor is on the phone right now with pharmaceutical companies seeing what we can do, and if we can get some samples or something. That was only for a 14 day supply! I can't imagine. Hopefully they will come up with something else.

I am going to go over to daycare on my lunch breaks and give him his treatments. Hopefully these treatments work. My mom was saying that if we have to pay that, that we might be better off in the hospital. I don't know about that, but hey, whatever. We'll see how things go.

I'll let you know what the doctor says about the pulmozyme.

Thanks!

Okay...

2008-05-21T18:30:00.003-05:00

So my mom went with me and Caden to the cardiologist. I was freaking out all day, and I was really worried... understandably. Well, I'll start off with the good news. His heart is fine. I looks pretty much like it did in December, the last time we went to see her. She doesn't want to see him for the heart for another 6 months. Which, by the way, is amazing. I was so worried for the last month, and that just makes me feel so much better. You know, she says that he can go 6 months, but the real question is: Can I? I worry so much. It's a mom thing, right?

Well, when he was in the hospital, his right upper lobe in his lung collapsed. They say that's common in babies that are intubated for a long time. Well, the right upper lobe looks okay now, but the middle lobe is collapsed now. And it's significant. It sounds (and looks) like it's the whole middle lobe. So, we are going to the pediatrician tomorrow morning to get a prescription for pulmozyme, which I think is a commonly prescribed medicine for cystic fibrosis to help clear thick mucous. We are continuing with the nubulizer treatments. The medicine we are using for that is xopenex. It's pretty easy to use, except for the fact that he fights you about it. He hates it, and it's not like it hurts him or anything.

We are going to the doctor in the morning for that medicine and information, and then we are going back in two weeks to get another xray. If things look better, then we will either continue or stop the treatment. If things look the same, we will be admitted and they will want to do a bronch to manually remove the mucous. Eeeeeek!!! That's sounds painful. Of course, he would be put to sleep, but still. We would request to go to KC for that if it came down to it, because I really don't care much for the pediatric pulmonologist here. She is the only one in Kansas, if you can believe that. Well, that's what they told me, anyway. Maybe there is another one... hopefully. Also, considering his other complications, I would want him there if something happened instead of the crappy Wichita hospital.

Well, assuming all things go according to plan (crossing my fingers) he should be better in a couple of weeks. She did say that if he seems really tired or like he is not getting any better, or if he gets any worse, we need to take him to the hospital.

It feels like we can never get out of the woods. I really appreciate all of you reading, thinking and praying for Caden/us.

Thank you, and we will keep you posted.

Ashlea

P.S. I forgot to say that she did up all of his doses of medications, except the aspirin regimen he's on. He has gained a little weight since his last appointment, so she went up. He weighed 20 lbs, 4 oz. Considering he is 18 months old, and he weight 9 lbs, 12 oz at birth, that's not a lot. Oh boogie...

Caden's sick

2008-05-20T14:06:00.002-05:00

So, right now Paul is at the doctor with Caden and he just texted to say that his sats are 93. I know that's not bad, but he has been doing this coughing thing for about a month now. It's only at night, mostly, but sometiems he just coughs and coughs. It really worries me. He was doing it for about a week. It was getting a little bit worse as time went on. He spent the night over at his Grandma and Grandpa's house last Sunday night, the 11th, and she was saying that she was really worried about the coughing. It seems like it has gotten worse and worse from then on out. That Monday night, I put the humidifier in the room with him, and he didn't cough once. I thought we had fixed it. Well, that was great until... Saturday night. He coughed a little bit, right around 5:30 am, and woke up early. Of course, he's been sleeping a lot more than usual because he's not sleeping well at night. Or it could be something more.

Update:

Paul called me to say that he may be going into congestive heart failure, and so (obviously) I left work. Our pediatrician wants Caden to go to the cardiologist (if not the hospital), because the xrays are not looking very good. His heart is enlarged, which it usually is on xrays, and he has a substantial dark area on his left lung. It could be several things, but the radiologist pretty much ruled out pneumonia. The doctor sent us home with a nebulizer and the treatment drops and we waited for the cardiologist to call. She called around 3:30 and we made an appointment for tomorrow at 4:15. She is going to look at those xrays and perform an echo (which he HATES) and she will make the decision on whether or not to admit him. Her office is actually in the hospital building, so that's good at least. The doctors so far are thinking that maybe he has asthma, which is why they gave us the nebulizer. If that is the case, we should be seeing improvements within 2-3 days. I am hoping that that is all. Paul and his brother both had pretty bad asthma as children, that they eventually grew out of. When he got his first treatment, he screamed, so I know that this is not going to be fun.

We had a trip planned to San Francisco this weekend, and I am not sure if that is going to happen or not. I really don't want to leave him at all if he is feeling this way. There is no question if he goes into the hospital that we will not go. That stinks too. Paul and I never went on a honeymoon and have never been on a real trip together. We got married 10 days before his first surgery, so that knocked that out of the water.

I will keep you all updated throughout the next couple of days.

Walking

2008-05-19T09:24:00.003-05:00

So, the therapist was supposed to stop coming. She is still coming. Caden's not doing very good walking. It's been over two months since he took his first steps alone, and it seems that he is getting even more scared to do it without help. If you try to stand him up, he just curls his legs up, and will not stand up. She told us to take him outside and let him play in the dirt and grass. We do, and he likes it, except when he stands up, and he can feel the prickles in the grass. (He actually says "Ow") She told us to do it barefoot to help his muscles in his ankles, with the ground being uneven. (We have a somewhat hilly, sloped yard.) Well, we are supposed to walk him around the house once or twice a day. If you have ever been to our house, you know that that is a long way, especially for Caden. He has fun with it if he sees a bunny, or something. We have been doing it with his shoes on, and that seems to help. Our grass is a whole other story, so I can kind of see why he wouldn't want to do it barefoot. I just feel like he was doing so great for the past year, learning to do so many things, and now he's just at a stand still. He's not talking a whole lot, it's like he forgets how to say things. Maybe he thinks that he doesn't have to say anything, because he knows that if he points to it, we'll get it. We are really bad about that. He's getting really good at throwing temper tantrums. But the funny (not so funny, really) thing is, that if we are out in public, he's great. If we are shopping at walmart or the grocery store, he's so quiet and well behaved. I would rather him be behaved out in public, don't get me wrong, but why does he change so rapidly when we get home? Because he can, and he knows it. He's always been really good at the store. I think he likes the commotion. I feel like he learns more from daycare than he does from us. Which, he is around older kids all day long, and Carol is really good about singing songs and playing with them. He knows where his head and his eyes are. He knows that if you blow on something, that it's hot... and he'll say it. He knows what a doggy is, and a kitty. He loves Carol's kitties. We were watching Paul's parent's dogs while they were out of town last week, and if they got to rough-housing, Caden would point at them, and get a mean face and say "Dat" or something like that. I think he was telling them to go outside, cause we did that if they were playing to hard around Caden. It's pretty cute. Paul and I were joking (kind of) that the kids will learn to walk together. That this baby will be holding Caden's hand instead of the other way around. I'm just not very optimistic, I guess. I just wish he'd do it already. He's been making such great leaps and bounds since this time last year. He's just stuck. Like he plateaued or something. I am grateful for how great he is doing, I guess I just got used to him doing soooo great. He's just taking his sweet time. I'll get over it.

Have a great day!!!

I might as well...

2008-05-14T11:08:00.003-05:00

Paul and I found out this weekend that Caden will be getting a little brother or sister. We have been trying for about 5 months, so we are excited to make the announcement! I have told everyone, just about, so why not let everyone know. I know it's "bad luck" or whatever, but I don't believe that anyway.

Caden has no idea what this means, of course, but he'll get used to it. Hopefully. :) I'll post updates and pitures (as soon as I start to show) on my blog instead of Caden's.

Please offer your prayers and support.

2008-05-08T08:27:00.003-05:00

Little Ava Rae Boeckman passed away yesterday afternoon. Please visit her page at: www.kadenboeckman.blogspot.com

Pictures

2008-05-07T08:43:00.002-05:00

I'm not sure if you all can check his Myspace pictures without being signed in to Myspace or not. Anyway, I put some new pictures on it. They are of the month of April and his party last weekend. I hope you are able to see them and that you enjoy! He has been eating non stop for 5 days now. Wow... I'm being serious. He is constantly eating. But that's a good thing, so I won't complain. :)

Yay!!!

2008-05-01T08:21:00.002-05:00

Grandpa and Grandma Schumaker are coming to see Caden today!!! So is Uncle Forrest. We are very excited to see them. The last time that my dad and step-mom saw him, I think it was at his birthday... in November! He has started doing so much just since then! They live in Denver, and they don't get to come out as much as they would like. We haven't gotten out there since I was about 11 weeks pregnant. So, that's on our list of things to do too. It's just kind of going to be a hassle driving 8 hours for Caden. Well, we thought about doing it over night, but then we'll be pooped all day the first day or two. We'll figure it out.

His party is this Saturday... which I am going to address in my blog I am about to write. :)

He's not sick anymore. He's still coughing (sometimes violently) but he's doing great other than that. I can't believe it's May already!!! It's Carol's (the daycare lady) birthday, so they all get cupcakes today. Caden always loves cupcakes, and he gets it ALL over himself. He's so funny. He's so smart too. He was playing with this giraffe thing that the neck moves if you make it, and he stopped and looked at it like it was crazy. He stared at it for a minute, and then he started "talking" to it. He sounds like: Scoo scoo scoo scoo, with a little lisp kind of. It's really cute.

Caden's going to have a good day tomorrow, cause Poppy and Nonny are watching him all day. I'm sure they are bringing him all sorts of neat stuff to play with, and he can show off his new stuff that he can do.

Have a great day!

Therapy

2008-04-23T08:35:00.003-05:00

I spoke too soon. Caden's kinda sick. Ok, he's sick. He's got this cough (that he gave to me) and if he feels like what I have felt like, I understand why he's been crabby. Poor guy... can't he get a rest?!?! I thought that with the warmer weather, he would start having longer periods of "health."

I have mentioned before that we have an awesome therapist, Sarah, who come to the house to see Caden. Well, she comes every other week, and she always has new things to try and teach us. I really do feel fortunate to have her coming to the house, and I was thinking this morning that if she wouldn't have come, I don't know how far Caden would have gotten by now.

When she first started coming, (May 14th, 2007) our goals for Caden were to hold his head up, eat by mouth, and roll over. He couldn't do ANY of that. Now look at him! It hasn't even been a year. I think that(in terms of developement) we should consider that a starting point instead of his actual birthday. Everyone always says how "behind" he is and all that, but if you remember that he essentially started all this less than a year ago, that would mean that he's quite advanced, huh?

Before I started my new job, I was always the one there when Sarah came. Now Paul's there. We talked a lot before about if she really needed to continue coming. I think Paul "gets" it now. That she is benefitting him a lot.

Anyway, she was saying yesterday when she came out, that Caden needs to be more independent. I guess I never thought about it, but we baby him. She said that we need to be working on not getting him everything he needs, and letting him go get his drink when he needs one, or letting him go get his binky if he needs it. I guess I just did it without thinking. He points to stuff that he wants, if that gives you an idea of what I'm talking about.

She mentioned that he will be two before we know it and he needs to be more independent. I got a glimpse into what an outsider would see. I'm terrified to think that Caden's a "baby" or a "sissy" I guess you would say. Not that I don't want him to be a momma's boy or anything. :)

I always thought that I would be the stern parent and teach the kids responsibility at an early age and all. Now I feel like I'm not. I don't want to be a hard-ass or anything, but I don't want to be a push over either. He does know that he can make us do whatever he wants... hold him constantly, push him in the wagon for hours (seriously) hand him the toys that he wants, let him play with my remote even though he has his own (which he does, that Paul got from work for him). I don't know.

Then it's like, he doesn't feel good, so I don't want to neglect him if he wants me to hold him all day. I know how nice it was when I was little and didn't feel good when my mom laid with me. I just don't know where to draw the line.

Any suggestions would be wonderful!

Party

2008-04-16T08:37:00.003-05:00

So, we decided to change the day of the party. My dad and step mom are coming into town and they are leaving that Sunday morning, so we thought it would be nice to include them. We changed the date to that Saturday, May 3rd. I'm excited about it. I feel like people think I'm wierd though, for having a party like that. Like they're thinking "you're actually going to have a party? I thought you were just joking." I don't know. Screw 'em.

May 3rd
1:00
Our house
Lunch provided
No gifts necessary

Ashlea

It's been a year!!!

2008-04-11T08:56:00.003-05:00

I think that today is a great day. Things were starting to turn around! Caden came off of ECMO a year ago. It's almost like his birthday in a weird way. It's as if he was reborn that day. He's been in a great mood the last few weeks, and he hasn't been sick at all! Yay Caden! He's such a good boy. I'm going to try and figure out how to get a video off of my phone and onto here. Don't get too excited... I may not figure it out.

If you don't see a video within a couple of hours, you should post a comment with some technical support. :)

Laughing...

2008-04-07T09:02:00.003-05:00

I have done this like 10 times in the past couple of weeks. Put something in an email, or a blog, and forgotten to tell you what I'm talking about! LOL... At least I can laugh at myself, right? The foundation that I was raving about is

www.patientaccessnetwork.org

Why didn't you guys tell me that I forgot to tell you that part?!?!? I guess I was trying to keep it all to myself. Haha. Na na na na boo boo. :)

A wonderful foundation!

2008-04-03T13:19:00.002-05:00

Well, I'll start by saying that we met our deductible for last year. By a lot. :)

Most if not all of you know about RSV, and how dangerous it can be to little ones, especially ones with medical miracles. Synagis is the shot that the kiddos get once per month to help ward off the virus. Caden started getting it in November... I think. We didn't get any bills for it, so I never thought about it.

Well, for the first one in 2008, they called me. They informed me that since the new year began, we would have to pay for the shots out of pocket until we met our out of pocket maximum. No big deal right? Well... he informed me that there are two separate shots, and that for every month, the price for both of the shots was $2,369.33. Of course, all we had to pay was 20%, which ends up being $473.87... That's right. Every thirty days.

Holy cow! First we had to meet our deductible ($300) and then we would have to pay the amount in full(the 20%)before they would send the next month's shots. What a scam. As my mother-in-law put it "Either way, they've got you by the balls." And yes, she was right. If anything happened to him as a result of not getting the shots, then how horrible would I feel for the rest of my life??? Ugh.

Anyway, we have obviously paid for them, and as a result, we have met our out of pocket maximum for this year now, too.

As I was researching synagis a few weeks ago, I found a foundation that helps pay for the coinsurance for many diffrent medications and such. I submitted our information, and we received our approval letter the other day. They are going to cover our expenses that our insurance does not, up to the full $1,500 that we have paid. Awesome!!!

I thought that with all of the people that use Blogger, some would find this useful. Pass it on, and if you know someone who is looking for a foundation to make a donation to, this is another great opportunity. Even if you don't need it, you should check out all of the different things they cover. Different conditions such as: Anemia, Cystic Fibrosis, MS, and Rheumatoid Arthritis, and everything in between. It's awesome, and I can't help but share it with you!

If you apply for assistance, good luck!

Ashlea

My Party!!!

2008-04-02T13:28:00.002-05:00

I (Ashlea) am in the process of planning Caden's coming home party. He came home from the hospital on May 7th. Almsot a year now, unbelieveable! This year, that lands on a Wednesday. Not such a great day for a party. We are planning on doing it the Sunday before, which would be the 4th (not sure what time yet). We are going to eat cake, and I'm thinking about making heart-shaped cookies. Anyone that knows my "skill" in the baking department will probably steer clear of the cookies. :) Maybe I'll just get a tube of dough. You can't screw up Pillsbury... right???

If you think of any cute games to play or anything else, please let me know. He's going to be 17 months by that time, so he probably doesn't care what we do. It's not neccessary to bring gifts, we are just going to celebrate his health.

Thanks guys!

Ashlea

P.S. I can/will send a formal invitation to anyone that wants one.

Caden Walked!

2008-03-25T15:02:00.002-05:00

Last weekend, Caden took his first steps. It was great to see. He isn't flat out walking or anything, but he's doing it! Sometimes he just has to be in the right mood, but it's a step in the right direction... lol. I'm a dork.

Caden's Feet

2008-03-07T15:03:00.009-06:00

For those of you who do not have a Myspace page... I won't mention names :) this is something that I wrote back in November of 2007 that is much shorter than the huge post I wrote later. For those of you who have heart babies, I hope you can relate.

I am so thankful that Caden is alive. He came so close, and I have just recently let myself accept that fact. The hospital seems like such a nightmare. I almost can't remember it... or at least emotionally remember it, if that makes sense. I remember every date that everything happened, and I remember the morning that we drove to the hospital when they were giving him CPR for an hour and it was hailing and raining cats and dogs. We were driving 40 mph and it should have only been a 20 minute drive, but it was 45 minutes. I think about that morning a lot. Paul and I both were so quiet. The only things we talked about were calling the family and telling them to get to the hospital. Who did we call already and were they coming? That was the scariest and the most peaceful drive at the same time. I wasn't scared for Caden, I was scared for me. I was thinking about how I would get through losing him. I knew that he would be fine whatever happened. Isn't it funny that it took us 45 minutes to get there and that's how long they were doing CPR? If we would have gotten there in 20 minutes, we would have been waiting around feeling even more helpless than ever.

When I think back on the hospital, I think about how he looked to me. He, for the most part looked beautiful to me. At the time, I focused on how good things were going to turn out. Every new day was an opportunity for things to get better. He always looked so beautiful. He's my baby... I created him (with Paul's help). I made sure that he was warm enough, just like when I was pregnant. I rubbed his head, and put lotion on him. I sang to him and read him books, even though he was put under. I read my own books, and a lot of them. The moments that I got to hold him were few and far between, and so precious. He lost his voice and he would be screaming without making a sound. That was scary to me. He looked so scared and helpless with that breathing tube down his throat.

When he was on life suppot my unlce and aunt came up. It was the morning that my dad and Pam and Forrest came. It must have been April 5th... give or take a day, and I remember my uncle saying that they were coming from Denver to see him again. He shouldn't have said that to me. He said "Just in case, they want to see him again." What the hell was that supposed to mean??? It's funny the things that we choose to remember. Why that? Why then? I think about that a lot though. How everyone was just waiting for it to happen.

He looked like a blow fish all puffed up. His eyelids were starting to crack because they were so puffy. He still has really dry skin from being so bloated and tight. It looked like you could just pop him like a balloon. I felt bad for my Grandma, seeing him like that. She took it in stride though, and I was proud of her for that. There were so many tubes everywhere. After he came off of life support, about a week later, he was so skinny. His head looked huge because he was so thin. His eyes sunken in. He was still beautiful.

He was paralyzed and sedated for two weeks. I remember standing at his crib for what seemed like forever, just waiting to see his finger twitch, or his toe move. I would get so excited. I was so proud of him for a little muscle spasm. The first time I saw him open his eyes, you could have popped me like a balloon, I was so proud. I felt so full of hope and love for that little man. I hated feeling his bones through his skin. His spine just poked out. But he needed lotion, so I did it anyway. His skin on his legs just hung there. He looked like Frankenbaby with his staples and stitches. But he was still beautiful.

I made sure that his IVs weren't pulling on his skin, and that there weren't any bubbles in the lines. He has so many scars from just the IVs being in for so long. I kiss them now. Somehow, I might make it better. I would put baby oil on his head, because his scalp was so dry. The nurse thought he was sweating, but I was just being a good mommy. That binky looked so huge against his face. His big eyes just looking at me, telling me that he hated it there. Maybe that's why I felt at peace when we were driving to the hospital. I knew that everything would be okay, no matter what.

That morning, when they let us back to see him, he was completely out. There was blood everywhere. It had dried and crusted in his ear. I couldn't clean it out very good because he wasn't supposed to move his head at all. He got so used to self soothing. When we came home from the hospital and still a litle bit now, he didn't want you to hold him. That's all I wanted to do. I just wanted to touch him and feel his heart beat. That tiny heart that almost stopped. That did stop. That started again. That beautiful, tiny heart. He is so beautiful.

He had this cart full of stuffed animals and books and toys. Some of the nurses thought that it was the hospital cart. You know, the one with toys for all of the kids. Those were Caden's. I don't let him play with those now. Somehow, it's like all those toys and animals and books were tangible prayers that people had given him. His crib was stuffed with so many animals, the nurse made us move them because she couldn't see him. I wanted him to have his friends around. The frogs that my dad and Pam gave him were there because they couldn't be. The lamb and Mickey Mouse and the dog that was Paul's as a boy. The bunny and the walrus... that ugly ugly walrus. Caden liked it because it was the brightest.

The morning that he had his first surgery, one of Caden's grandmas held him for a long time before they took him. I didn't have the nerve to take my own son. I wanted to look at his chest one last time before it was scarred. To touch it, and remember that it wasn't scarred at one point. He was so happy. He looked like any other three month old, except for the tiny hospital gown they made him wear. There shouldn't be hospital gowns that small. It was too big for him though. That ugly green gown. I tried to keep him warm, because it was so cold in there. At least he had his diaper on. I wonder if he had his diaper on during surgery.

When he was on life support, Paul and I asked everyone how long they were going to stay. Someone said "As long as it takes" and everyone else agreed. Three days later, everyone was gone. Except for me and Paul. I sometimes think about whether everyone thought that that was as long as it took. Or if they couldn't take it anymore. It took so much longer.

I like to think about when he was born. When we thought he was perfect. (He is, mind you!) My mom put the mirror up, and I saw how close I was. It only took me a couple of pushes after that. His little head popped out and I saw him in the mirror. All I could say was "He's so cute! He's so cute! He's so cute!" I had no idea... he is so beautiful. That little man has taught me so much already. I guess I was naiive thinking that it would be the other way around. I look at his feet a lot, and kiss them and tickle them, and I help him stand on them. Sometimes, when I look at them, I think about how much I miss them kicking my ribs. I thought he was going to break out, like he was in prison. Sometimes I wish that I were pregnant again. That I didn't know that he wasn't healthy. That I was sustaining his life on earth. I guess that's the scariest part about being in the hospital, in our situation. I wasn't sustaining his life anymore. He had to do it on his own.

I guess I realize now that I didn't blame myself for his heart defect, I just wished that I could give him back his umbilical cord. I wished that I could have given him a back-up generator. Turn on the reserves. That he would have had a constant spotter, so that if he dropped the ball, I would catch it. But he didn't drop the ball. I guess that's a mom thing. His beautiful little feet. Those little feet were the only part of his body that nothing was hooked up to. Maybe that's why I love looking at them so much. They look just the way they did before. No one has scarred that part of him.

I don't want anyone to feel hurt or upset by the things hat I have said, I just want you to know how things were. This is good for me... to talk about it. People hear that he had two open heart surgeries and all that, and they just go yeah, ok. But they don't get it. It's more than that. He truly is a miracle baby. A two million dollar miracle baby! I don't want to remember, but that's the best way that I can deal with things now. We still go to the doctors and stuff, but when I remember how close he came, it makes me love him that much more. I realize how great it is to have him here. Thanks guys for reading, and thank you for everything that you did for us when we were there. Paul and I are doing great too. This is the family I dreamt of as a girl. Just not the way that I thought it would happen, that's all. But things happen for a reason, and it's okay that it happened to us.

I love you guys... Ash

Caden's Story

2008-03-07T10:46:00.005-06:00

Caden was born on November 22, 2006 at 6:31 pm. He weighed 9lbs 11.8 oz and was 21 1/4 inches long. Big baby boy! He was diagnosed with Truncus on January 22nd, after what we thought was just a cold. He sounded like an old man coughing and wheezing. What was happening, essentially, was that his lungs were being over-loaded with (what we found out later to be) 6x the normal amount of blood. When we went to the doctor's office at Wesley, they checked his oxygen saturation, and he was sitting in the low 70s. We knew there was something wrong when the doctor just turned around and left the room with a worried look on her face. We were admitted and life-watched, after an echo, to Children's Mercy in Kansas City that night. What's odd is that he had gone to the pediatrician a few times before, and they had never found it. After they admitted us, the resident who was just "passing time" was the one that asked us... "Has he been diagnosed with a murmur?" I just said no, and shrugged it off. Surely they would have found it by now, right? I mean, there had been two whole months that they had ample opportunity to. We were in KC for five days and came home, only to wait for his first open heart surgery. I took a lot of video in the next three weeks, both to document his perfect chest, and as proof that we had him... if the worst happened. That may not make sense to some, but you do funny things when placed in a situation like that. I knew while I was filming that if it came down to it, I wouldn't be able to watch it, but at least we would have it.

His surgery was scheduled for February 27th, 2007. We handed him off shortly after 7:00am. It all went downhill from there.

Everything was fine after the surgery; all of our family was there. We finally got to go back to see him in the early afternoon. When we saw him for the first time, we just stared at him for a while. His nurse, Megan (who was awesome!) was buzzing around the room changing things, checking levels (literally with a level), and making notes. They left his chest open for a few days, due to the swelling. We didn't know what to expect. They had told us that if things went according to plan, that we would be going home within a couple of weeks. Hahahahaha... No, really.

March started out good. He was doing better and he was starting to breathe over the ventilator. They had lowered the vent peep (pressure) to a nice low level and they had lowered the oxygen to 21%, room air. Dr. Klem was the PICU doctor that round, (We love him!) and he decided to extubate (take out the breathing tube). His heart rate and breathing rate were slow enough that he felt it would work. Well, they extubated, and everything looked fine... for a few hours. The nurse we had that day was a NICU nurse, which is not a bad thing, but she didn't know where anything was, and she seemed a little air-headed. During the surgery, they had inserted an IV in his femoral artery (in his left groin). The nurse decided directly after extubation to remove that particular IV because it was not essential at that time. Turns out that he had created a blood clot around where the IV had been inserted. In order to break the clot up safely, we had to give him shots of lovenox twice a day for about 4 months. Because of the shots, and to make sure that the doses were correct, we had to take him every week to get blood work drawn to check the low molecular heparin level. Heparin and lovenox are blood thinners that they use to clear blood clots. Heparin is too strong for home use, so they use lovenox. We got the lovenox shipments every Friday, and they had to be refrigerated.

Anyway, after extubation, they decided that we could try to feed him a little bit by mouth. Up to that point, he had been getting TPN, an IV form of nutrition. This was his first try at food in over a week. He was still hooked up to all of the IVs in his neck and his hand, and his oxygen tube in his nose. He still had the chest tubes in for drainage, so it made it difficult and painful for him to move. We got him onto my lap, and I started to try and feed him. Paul was videotaping. Caden was doing okay, not that good really, but I thought it was great. Paul stopped taping... thank god. It was kind of dark in the room, and I was looking at Caden and I realized that he didn't look right to me. I told Paul to get the nurse, and she came in. She looked at him and ran out of the room. Within 30 seconds, there were about 20 people in the room and they were wheeling in the life cart. He had no breath sounds. He was code blue. They called it "acute code blue." They started bagging him, and giving him escalating doses of epinephrine through the IV. They re-intubated and sedated him. Paul and I had left the room, and were watching from the hall. We couldn't watch, so we left. We went outside and after a few minutes, we called. They told us to come back immediately. That's all they said. We walked in a daze, and while waiting for the elevator, I almost fainted. I felt myself losing my footing, and Paul caught me. When we got back to the PICU waiting room, the chaplain was waiting for us. What were we supposed to think? We had never had any contact with a chaplain before, and all he asked was "What have they told you?" We thought the worst. He took us to the little room inside the PICU. If you have been there, you know what I'm talking about, and the horrid feeling you have there. We called people and we cried. He was stabilized again. It took hours. During that pulmonary hypertension crisis, he ripped the patch between his ventricles back open. It was estimated that before the surgery, the hole was about 15mm long. He ripped it back open to 8mm. Over half way. They thought that he had developed sepsis, but apparently not. During that crisis, his body wanted to save his heart and lungs and brain, so it pulled from the other organs. His liver and kidneys began to shut down, and he developed jaundice. He was yellow. They said they had never seen it where the baby ripped the hole in the heart back open... He did. He's like wonder baby or something.

They moved us to a different room, one that wasn't so close to the nurse's station. In order to go home, or even to the 4th floor, he needed to get off of Milrinone, an IV drug that is used as anti-heart failure and blood pressure medicine. They had a really hard time getting him of that. Every time they turned it down, he would have a "mini" crisis. At one point, one of the cardiologists told us that they were either going to send us home and give him tons of drugs, or they were going to do another surgery. They were waiting to decide. They extubated him again. That didn't go so well either. They had to put him on bi-pap, which is like an oxygen mask that they strap to his head that forces his lungs to open fully. He was on that for a while. Gradually, they weaned him down. He would do 8 hours on, 2 hours off, then 6 hours on 2 hours off, then 4 and 4. He got a scar on his nose from the pressure of the mask. You can see the scab on the family pic I posted. It is a tiny scar, but it's there and I notice when I look at him.

They thought that they had stabilized him, and he was doing okay without the milrinone, so they decided to send us to the floor. A huge step and everyone's goal. We went up and we were there for about a week. Dr. Drake, the cardiologist, sent us home on a Friday... Another bad idea, going home on a Friday. He was taking something every hour. He was taking: Captopril, Metoclopramide, Lasix, Sodium Chloride, Potassium Chloride, Digoxin and Ranitidine... all at least twice a day, and several of them were three times a day. He was literally taking almost as much medicine as he was food. They taught us how to put in the feeding tube. It goes in the nose all the way down to his stomach, somewhere between his belly button and his ribs. I hated doing that. If someone stuck a tube up my nose and kept pushing till it got to my stomach, I'd be freakin!

Anyway, we went home Friday. Everything was fine till Saturday. He screamed nonstop for 48 hours. He was vomiting and having diarrhea the likes of which you have never seen. We put him on the dryer hoping the vibrations would calm him down. No. He would scream and scream till his face was puffy and bright red. His veins were popping out in his forehead. His eyes were bugging out. You could see his body working so hard. We were scared to death. What are you supposed to do? There was nothing you could do. Paul and I took turns going to the other end of the house so that we could get a nap. We didn't sleep at all because anywhere you were in the house, you could hear him screaming. You knew something was wrong. We called Dr. Drake on Saturday. He said it was the potassium chloride upsetting his stomach. OK, right. He knew how sick he was, and I don't know why he didn't tell us to come back in. To top that off, the pharmacy (Dandurand's) made his prescriptions wrong. Several of his medications were at multiple times the prescribed concentration... which can be lethal! Unfortunately, they are the only compounding (specialty) pharmacy that accepts our insurance in Wichita. (I have since found a wonderful pharmacy) A town of 500,000 people and only ONE compounding pharmacy?!?!?!?! Ugh.

Finally at around 2:00 Monday morning we decided to drive back the Kansas City. Paul took Bailey over to his mom's and I packed. There was nothing to pack, really, because we hadn't even had a chance to unpack. We didn't even have time to take a shower that weekend; you can imagine what I looked like after a few days... ewww! It was so nerve-racking. We got on the road and thankfully, the vibrations of the car put him into a restless sleep, but sleep nonetheless. We got to KC around 5:30 or so, and went straight to the Emergency Room. It sounds funny, but just being in the parking lot there made me feel better. I was so scared; I just wanted someone else to take him from me. We were luckily the only ones in the waiting room, so we got right in. The nurse took her sweet time getting his weight and all that. The whole time all I was thinking about was that he needed an IV and he needed to be started on milrinone. Finally they got him situated in one of the rooms, and started an IV, and not to my surprise, they started him on the milrinone and guess what??? He calmed down. He was exhausted. That drug let him rest a little. They moved us to the 4th floor. Why? I don't know. We were only there for a couple of hours before they moved us to the PICU. They determined that he was in severe congestive heart failure. Dr. Drake came in and I showed him the medicine that Dandurand's had given us. He just shook his head and said that he thought we might be back. What the???

His little butt was bleeding because all of the diarrhea... it was so sad. Like he needed all that on top of it. We got to the PICU, Room 13, and you can see in the picture that he was so much calmer. Dr. Kirsch (PICU doctor) was very concerned and later that day we had a discussion about his next surgery. She said that because the milrinone essentially stopped the heart failure, there was likely no other reason for his thrashing and screaming and other symptoms. The next surgery would be within days... April 2. Nothing big happened between the ER and the second surgery. He was so thin. The binky was huge on his face. He watched a lot of cartoons, because there was nothing else to do. We read books and stuff, but that was it. We got there really early on the 2nd. We sat in his darkened room waiting for the nurses to take us. He was sleeping and all I wanted to do was wake him up. To touch him and kiss him and tell him I loved him. He knew anyway. Us taking him back to the hospital was the greatest way we could have told him that we loved him.

They came to get him. We followed his crib to the surgery prep area. We waited forever. It wasn't long enough, but it was too long. "Just do it already" was all I could think. I wanted him to stay forever, but I wanted them to take him away at the same time. The sooner they took him, the sooner they would be done. They took him too soon, come to realize. For me anyway. We went to the cafeteria... we hadn't eaten yet. Couldn't really eat when we got there. You go through the motions.

We got to the surgery waiting room... for the second time. We didn't get the good couches that time. Oh well. We talked, drank coffee, played scrabble, and did crosswords. A lot of our family was there. It was good to have them there. We were waiting for the phone call. You know, that's the only surgery waiting room? So you are waiting in there with parents whose kids are getting their tonsils taken out. That just doesn't seem right to me. They are all talking about how horrible it is.

OK. Finally the receptionist called us. She was sooooo rude, and old. Just mean.... show some compassion, would you? Dr. O'Brien came in with Kasey. We asked questions, and he gave answers. Everything went well. He was having a little bit of rhythm problems, but everything was okay. He left the chest open again, and would hopefully close it within a few days. We celebrated, and moved up to the PICU waiting room. They have to get settled, you know, before we can see him. Finally got to see him. Looked pretty much the same as he did with the first surgery. But we were used to it this time, so it wasn't shocking. We went to an Italian place for dinner that night. We were staying with Matt and Emily. We went to bed early. Good thing turns out.

5:45 am, Paul's phone rings. He jumps up and grabs the phone. I'm groggy. Next thing I know, he's yelling at me that Caden's heart stopped and we need to get to the hospital. Its 20 minutes away. We knew he was gone. Just knew it. We were holding out hope, don't get me wrong, but I just had this peaceful feeling. Paul couldn't drive. It was raining and hailing and lightning. It was horrible. It was ironic. We called the family and told them to get there. It took us 45 minutes to get there. By the time we got there, there were people waiting for us. Janie, one of the chaplains was there and very helpful. Kasey came and got us and took us back to Room 13. We stood outside for a while with the other 2,000 people. Not really, but there were a ton of people watching. All nurses and doctors, so that made it better. We got in there, and he was already on ECMO. Dr. O'Brien wasn't there yet, so Dr. Lofland performed the make-shift surgery. They cut his neck on the right side to use his carotid and jugular arteries for the cannulas to pump the blood through his veins. He had dried blood everywhere. It was in his ear, all over his body, his face. He was lying in a pool of blood. His tongue was hanging out. It was horrible. He was sooo swollen from the surgery itself. We didn't want to stay in there too long. Too many people anyway. We stood outside his room. We went to the PICU waiting room and waited for everyone to show up. It seemed like forever. Dr. O'Brien came out with Kasey and the waiting room was still dark. It wasn't even 7:00 yet. Right at, actually. Anyway, we were sitting in the chairs by the lockers, against the wall. If you look in the glass window, you can see the door that the doctors use to go in and out of the PICU. We saw them coming, and heard the door. They came around the corner, not knowing that we were watching. They knelt down and talked to us. They had to move him to the NICU for the real ECMO machine. He explained what the acronym meant, and I remember asking him on a scale of 1 to 10, how serious it was. I knew it was bad, but that's the only thing I could think of. He didn't say anything. I said so, is it like a 9? He didn't really say anything to that either. OK, I thought. Kasey just rubbed my shoulder. They were so nice. They got up to leave and they turned around the corner again. In the window, I saw Dr. O'Brien pause before the door, look down, and shake his head. He then opened the door and went back to our son. I see that memory all the time. He didn't know that I saw that. He has kids. He's a good man. He does a good job, a noble job.

It took them forever to get him to the NICU. Our family got there and we had donuts. I didn't even put a bra on that day. I was so self conscious about it. Oh well. We all looked like crap. After a while, you try to give people the benefit of the doubt in a children's hospital. You never know what they went through last night. We got to see him hours later. I think it was even the afternoon. Fuzzy. Anyway, that ECMO room was the "treatment room" it was huge, and every corner had some type of equipment in it, and most of it was hooked up to Caden. They had to put him in a little bed. There wasn't room for his big crib. He was soooo swollen. His tongue was hanging out still, and it got worse. The nurses were really nice, but it just seemed like there was too much going on in there. I wasn't really comfortable there. You couldn't even stand close to him, cause there was so much stuff around him. He was sedated and paralyzed. He kept moving and they were worried that he was going to pull or move the cannulas, and "bleed out." He still had the dried blood in his ear. I couldn't clean it because a.) I couldn't get close enough, and b.) I might move the cannulas. He was on all types of IV drips. Tons. He was on the adult dose of morphine. He was on 6x the average dose for versed and fentanyl. Because of the paralytic, they had to monitor his brain waves. He could have been awake and paralyzed, so they needed to make sure he had enough of the sedatives. How scary for him. I can't imagine if he had woken up. Around day two or so, we were going to get something to eat. We were driving in the car when we got a call saying that they needed to do an exploitative surgery and we needed to be there. We immediately turned around, and got back to the waiting room. He was bleeding too much, so they wanted to check it out. The sucked out a liter of blood from his chest cavity. He was oozing blood from the cannula site in his neck. They tightened the strings, and things were better. They had to do that three times while he was on ECMO. So, technically, at this point, he had had five surgeries. Technically. They did have to open him up each time, so I guess it counts. His chest was open the whole time he was on ECMO. Not open, but you could see the dip in the bandage where his sternum was supposed to be. Around day 6, Melissa, the social worker pulled us aside. We went into a room inside the NICU and talked for a few minutes. She informed us (among other things) that if he didn't get better within a few days they would start thinking about "the talk". You know, whether or not to continue. It didn't get to that. Thankfully. Caden came off of ECMO on April 11. It took several failed attempts and several days, but they got him off of it. We had this cart full of animals and toys and books that were Caden's. One of the NICU nurses made Caden a poster with his name on it while he was on ECMO. It's hanging above his dresser now. Its jungle themed and it goes with his room.

We moved back to the PICU, Room 7. We were getting everything settled, it took a while. We had the deluxe Scrabble edition that my dad had given us, and we played that game constantly! There was one time, weeks after ECMO that the doctors and surgeons were doing evening rounds and I had Caden on my lap playing scrabble. He was just staring at the game. The doctors thought that that was just the funniest thing. They thought he had brain damage, but he sure was paying attention to that!

After he came off of ECMO, progress was slow, but steady... to a certain degree. There were setbacks, but for the most part things were looking better. While on ECMO, he had bloated up severely, and they had been putting this vaseline stuff in his eyes and on his lips to keep them moist. It was kind of gross. The afternoon that they moved him back to the PICU, he was still in the tiny bed. The bed for tiny babies. It had a temperature guage that they stuck to his stomach and a heat lamp above the bed to keep him a constant temperature. He was still on all of the drugs to keep him asleep, but they had stopped the paralytics. He was knocked out. Dr. Klem was the doctor that day also. I stared at Caden and stood next to his bed forever. While on ECMO, you couldn't even stand near him because of all the equipment, so back in the PICU, it was just nice to be able to stand there. Within a foot of him. He was sooooo puffy. His skin was like leather on a drum, if that makes sense. Like on a real bongo, how they use pelts and stretch it across. It looked kind of waxy. Like if you touched it, it would split. His eyelashes were pasted to his face because of the vaseline stuff. His chest was still open. They were worried about it being open that long, but he was too swollen to close it. They probably couldn't have closed it if they tried. It was open for almost two weeks. That's a lot of opportunity for infection. It's very scary that he could have had sepsis from that on top of everything else. We would sit there for hours reading or playing games. I remember one afternoon, either the day he moved back to the PICU or the next day, I stood at his crib staring at him forever. Dr. Klem had told us that we should be seeing him starting to move soon. He started twitching, and I was so excited. Those first couple of days after ECMO were hard because we didn't know if or to what extent he had brain damage. We didn't know what the paralytics had done to him either. We didn't know if they had cause any permanent paralysis. His toe twitched and we stood there staring at it. We were standing there staring at his right big toe. Waiting for it to twitch again. His finger moved too. That was exciting. We could see his eyeballs moving, so that was good. A few days after ECMO, they were trying to get him off of the morphine and other drugs. He started going into severe withdrawl. They started him on Methadone and Ativan. My little druggie. The doses weren't high enough, and they didn't want to give him too much, so they were increasing it very slowly. It took them days before they got it high enough. Thursday after coming off ECMO was one of the worst days there. He was fully awake by then, and pissed off about it. Because of the withdrawal, his arms and legs were moving involuntarily. He couldn't stop moving. He was kicking the blanket non-stop. The blanket started getting lint balls all over where his feet were, from his feet rubbing it so much. They gave us that blanket, and I wonder if it's because he rubbed it thin. It's a cute Curious George blanket that someone donated. It's under his bed now.

He was sooo thin those days. Usually they put the pulse/O2 saturation monitor on the toe. It's like a band aid thing that they wrap around the big toe. He was kicking so much that it wouldn't pick up. The monitor was constantly dinging saying that he wasn't getting any oxygen. That's nerve racking! They got a huge head-wrap thing and put it around his head to get a better reading. It's for bigger kids, so it didn't work very well, but at least it was somewhat accurate, and it wasn't dinging at us all day. It's sad when you get to learn what every ding means.

We took some video. I think, of that day he was having withdrawal so badly. We were just so happy that he was awake. One day at a time... literally. Meadow and Ryan (my sister and brother-in-law) came to see us that Friday. It was right before Ryan's birthday. They still hadn't figured out Caden's Methadone and Ativan doses yet, so by the time they got there, we had swaddled him to try and keep him from moving so much. He had finally fallen asleep... kind of. He couldn't even sleep well because of his involuntary movements. He had dark circles under his eyes. I have some pictures, I'll put them on. It was so wonderful to see him sleeping. It was even better when they figured out the correct doses. He was spasming anymore. Our friends Lene' and JR came up to see us that week too. He was more under control when they came up. He was intubated still, and so he didn't make any noise when he cried. He was almost to the point where they had gotten the withdrawal under control. He was still kicking a lot and "screaming." He had his staples in, so they had already closed his chest. He was very thin and generally pissed off.

Lene' and I were pregnant together. We worked together and our babies were born exactly one week apart. We got to be pretty close when we were pregnant. We are still very close now. It was difficult to sit there with her daughter. She was standing up and playing and eating and "talking" and wanting things. I looked at my baby and that was one of the first times in the whole ordeal that I let myself think about how bad things were. He couldn't even roll over if he wanted to. He couldn't because of the chest tubes and because of the ventilator or because of the IVs, but even if he had been able to physically, he wouldn't have been strong enough. She didn't have any scars. I'm not trying to be mean or hurt anyone's feelings; it's just something I thought about.

When they extubated him (It was the Friday that Meadow and Ryan came) he did great. It's so scary to watch them take it out. They don't care if you watch, but I never did like watching. They sit him up almost completely, and they take the tape off his face, and they pull it out. Simple as that. They have to do it in sync with his breathing, but they just pull it out. It's amazing how far those tubes go down their throat. They are gross looking too. His little vocal chords were paralyzed. He would scream and... Nothing. It was nerve racking, because you could sit there, reading a book or playing a game and he'd be crying and you wouldn't even know it... except for the dinging. After a while, about a week, you could hear a scratching noise when he cried. I was afraid to leave him alone in case he started crying. The nurse wouldn't hear him. It was probably a good month before you could hear him at all. They stuck a probe down his throat to look at the vocal chords, and they said he paralyzed the right side, which is opposite of the norm. Of course it is! He even had to paralyze the wrong side. :)

The first few hours after extubation are always scary. He had a horrible track record with extubation, but that time he did great! Progress from then on was slow, but steady. We moved up to the 4th floor at the end of April. In the PICU, the most patients one nurse has is two. When the child is critical, then they only have one. Caden had one nurse for a while. On the 4th floor, they have up to 5 patients. It's kind of scary. If something happens, and they are in with someone else, what do they do? Sometimes it seemed like the nurses wouldn't check on him for hours. When they moved him upstairs, he as on continuous feedings. He was getting about an ounce an hour aroung the clock. It was high calorie formula. He still only weighed about 3-4 pounds more than he did at birth, and he was almost 7 months old. Anyway, they started giving him bolous (bulk) feedings. He would get 3 ounces over one hour, every 3 hours. That worked ok, until he started throwing all of it up. I was very worried about that, because the whole reason he was on the feeding tube was because of his vocal chords. They weren't closing because the tube had kept them open for so long. If he got fluid down his throat, who knows if he would know how to swallow it, or if it would just go straight into his lungs? If he aspirated, he could have been right back in the PICU. His lungs were still very fragile. His right upper lobe had a lot of collapse, and they were worried about that forever. They always were and they still are to this day. The collapse happens quite commonly in babies that are intubated for long periods of time. There are three lobes in one lung and only two in the other. I don't remember which is which, or why it's like that. The breathing tube sits closer to one lobe than the other, and somehow causes it to collapse. They were giving him breathing treatments, and they decided that it would open back up on it's own, or he would grow out of it. He still has part of his lung collapsed. They always talk about it and discuss whenever he gets chest xrays in Wichita. I'm not really worried about it anymore, but the doctors here freak out about it. They worry that it may be new collapse. I always tell them that he's had it for a while, but they still freak.

Anyway, when he started vomiting, I got concerned. If the nurse was with one of her other patients, how long would he be laying there with it all over him, and if he was on his back (he still couldn't roll over) it would go straight down his throat. It was soooo scary to leave his side. Scarier almost than when he was on ECMO. At least in my head that made sense. On ECMO, he had 2 nurses to himself at all times. There was always someone in the room with him. On the 4th floor, he was sharing a nurse with 4 other kids and he didn't have a voice. If he was choking, he wouldn't have made noise anyway, but still... scary. In the medical history we got printed off from the hospital, there are a ton of notes in there from the 4th floor from therapists and the nurses. Many of them say how he doesn't want to play with anything, or how he wouldn't track objects with his eyes, or he had no desire for oral stimulation, no desire to suck the binky, no head control, no stomach muscles, blah blah blah. Duh! He was laying in bed for more than half his life. His head was sooooo flat since he had been lying flat for so long. I have a picture of it somewhere. Some people made comments on how funny his head looked. Thanks... I realized that, no need to rub it in. It's round now. We had to make sure he never laid flat for very long, so that it would round back out. I kept fighting the nurses, cause they wouldn't roll him. How hard is that? He probably didn't like staying in the same position anyway. We joked about how when he grew older he'd have to ask the hair dresser to make it a little poofy in the back. It looked fine to me, and if that was the only residual problem he had, that would be okay.

We went home on May 7th. He was still on the feeding tube for a couple of months. They gave us this really cute little feeding pump, and tons of supplies. Our living room turned into a hospital. At least it felt like it. But, it was still home. I hated putting the feeding tube in on my own. I still wasn't working because I didn't know how comfortable other people were with inserting the tube if needed. If he vomited (which he was still doing a lot of) then the tube came out of his mouth. So, right after he vomited, you had to rip the tape off of his face and pull it out of his nose. As if he wasn't feeling yucky enough.

Rainbow's started coming that week or the next. Sarah is his therapist, and she still comes. She is great, and she always has new things to teach us, and new ideas to get Caden to do more stuff. Of course, that is her job. I have the carbon copies of all of her notes when she comes to see him. Our first goals were to get him to eat by mouth, roll over and sit up on his own. Looking back, and seeing how far he has come, it seems like those are such small goals to have. Really, though, those were huge, and when he started doing those things, we were so proud. He's such a sweetie!

I kept him in the bassinet next to our bed at night. He was like a newborn. I wasn't comfortable leaving him on the other side of the house. He was also still getting Ativan and Methadone every few hours, so that would have been a hassle crossing the house in the middle of the night. He was on a slow wean from those meds, and it was a few weeks till he was off of all of them. It was pretty nice in the middle of the night, giving him the meds through the tube, because at least we didn't have to wake him up. He couldn't taste how horrible they were either. He was gaining weight and filling out.

On June 13th, we went back to KC for a swallow study. He passed on the thick liquids, so we could start giving him food by mouth. Yay! He couldn't have any cereal or baby food, but at least he could have a bottle. We cut the nipples so that he could actually get the food out, and he really wasn't interested at first. It was thickened to a syrup-nectar consistency. He hadn't had any oral stimulation in a long time. Months. He didn't even want the bink. Paul's mom went with me to KC when he had the swallow study, and we were both struck by how cute he was sitting in that chair, strapped in, trying to suck the bottle. It was the cutest thing ever. His little cheeks were just a-goin'. Sooo stinkin' cute!

He started sitting up, and rolling around. He started crawling somewhere around October... Maybe, I can't remember. For a very long time, he wouldn't stand on his feet. He didn't even like you to touch the bottom of his feet, so getting him to stand was another endeavor. Well, if you think about it, he had no pressure on the bottom of his feet for about 6 months, so his nerves were probably sensitive. He is doing much better with that now. He is almost 16 months, and still not walking, but from where he was a few months ago, he's doing great. He will walk (if he's in the mood) with you holding one hand. He won't stand up on his own yet, but he walks around the furniture. We got a leather ottoman, partly because he won't hurt himself if he falls, but mostly because we liked it so much. :) Sarah did tell us though, that while kids are learning to walk, you can get those fun noodle things for the pool, and notch them out to stick around the coffee table. Good idea, worth sharing, I thought.

He got off of the feeding tube completely in July, or so. He was on thickened liquids through November, when he had another swallow study. He did great at that one, and they tried it without thickener. He did good, but I was still nervous, I just weaned him off the thickener slower than they told me to. Sometimes they try to go too fast. I think we learned our lesson on that one the first time.

He had an MRI on July 2nd. Even though they do daily ultrasounds of the head on ECMO, they still wanted to check and make sure that he had not sustained brain damage during his hour-long cardiac arrest. The never did send us the results, or call us for that matter. I requested a copy of it, and there was nothing major found. In other words, he's fine. :)

He has, quite literally, been sick constantly since we brought him home from the hospital in May. He always has some cough or a fever, or a broken bone...

So it was the beginning of September. He had a temp and a cold, so I was going through his clothes to find him something comfy to wear. He was on the middle of the King sized bed, and he hadn’t been rolling for very long. I opened the closet and was looking at the boxes. I heard a thump. A big thump. He had rolled from the middle of the bed, all the way and fell off. He was screaming, which is understandable. That was late afternoon, and I thought he just bruised it or that his little ego was hurt... We were waiting for him to calm down, but that never happened. We got the earliest appointment we could, and took him in to see the pediatrician. They took x-rays, and saw that he had broken his femur. The biggest bone in your body... and he had to break it. It almost looked like a spiral fracture to Dr. Palacio, so he had to get a second opinion, and if that were the case, they were going to call social services. Great. After all Caden had been through, they were going to investigate us for child abuse? Well, it turned out that it wasn't, but the thought of it was unbelievable. He sent us to a bone doctor on the other side of town, and he got a splint. He was supposed to have it on for 2 weeks.

Well, the cough that I was talking about... the one that I was looking for clothes when he fell of the bed? It still hadn't gone away, so we went back to the pediatrician. We went on Friday, and he gave us meds. He told us to come back on Monday, and we'd see how things were going. Not good. They called Wesley and told them that were coming to admit. Great.

He was in Welsey for less than a week, but they are so under-staffed that I was afraid to leave him alone in there. So, he was in the hospital for "pneumonia" and he had a broken leg. I was there one day, and Paul's mom came for lunch. His little toes looked like they were swollen, and the bone nurse had told us not to take it off unless we really needed to. I unwrapped it most of the way to let his skin breathe, and I saw the pressure ulcer. It had only been 5 days since he had gotten the splint, and he had a pressure ulcer on the top of his foot by the ankle. It was about the size of a quarter. I called the nurse, and we put some ointment on it and wrapped it back up... looser this time. Well, we got discharged, after another medicine (a Diuretic) to the daily routine. Anyway, we were sent home, thankfully not to KC. A few days later, I was letting his skin breathe, and I looked at the back of his knee. He had another, larger pressure ulcer on the back of his knee. It was black. Not brown or red, but black. The edges were red, but that was it. We called the bone doctor, and we were able to get in that afternoon. Paul told the nurse what it looked like and she said "What do you want us to do?" What? You tell me!

We went in, and when the nurse saw it, she was surprised, and I thought... "Did you think we were lying or something?" Our doctor wasn't there, so a different doctor looked at an x-ray that they took and he decided that we could just leave it off since it had been on for 3/4 of the time that they had prescribed. Only a week and a half and it was healed enough. That doesn't seem fast enough, but kids are resilient. He has scars from both of them now. His left leg is a little funny looking when he walks because the scar tightened his skin on the back of the knee. So it looks funny when he walks... at least he's trying to walk! When I say that he has scars everywhere, I mean it. We have been trying to include more protein in his diet to keep his skin from breaking down. We played catch-up with his immunizations for months. He wasn't allowed to get them while he was in the hospital. Well, when he was so sick, it would have been horrible timing, so we just waited. We went to the pediatrician so often they asked us if we just wanted to be billed for the co-pays. :) No, I'd rather pay $20 now (and often) than $180 in one sum later. He's caught up now.

I'm sure that I will come back and add more things later, but I'm tired of writing. Sorry it's so long... talk to Caden about that. :)

Getting Started

2008-02-21T13:18:00.002-06:00

I have been contemplating creating a page for Caden, and I decided I'm just going to do it. Many people in our lives do not realize to what extent Caden's medical history goes. I only shared what I wanted to at the time, and I left a lot out sometimes. I have written some blogs on Myspace about how things were, but I believe that this could be a better outlet. I feel as if I am forcing some of the people on Myspace to read things they don't want to read, and we don't want that, so even if no one reads this, I will feel validated. I am going to write as it comes, and it may take a while to get the whole story out, so bare with me. A good project for those bored hours at work!