Feeling Better

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!

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.

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...

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

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

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...

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.

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

Pictures

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!!!

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!