Caden's Cardiology Checkup - 10/5/11

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

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

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

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.