Wednesday, December 2, 2009

Not What I Wanted to Hear

Today I heard the cardiologist reassure me, "Don't worry, this is what we want to see"-- right after she told me that today's echocardiogram showed that Gavin's aorta repair looked perfect (Hurray!), but that his ventricle tissue had thickened in over the last 6 months and he would need to go back on meds, probably for life. Wow. That threw me for a loop. I had left for today's appointment announcing to anyone near that this would be Gavin's last surgery follow-up and that he would be officially weaned from his last blood pressure med today! So this news, while not devastating, is a far cry away from the outcome Tim and I were expecting since the time Gavin's coarcation was diagnosed.

I remember them saying that he would be off the meds a few months post-surgery. Then wait--if I think harder, I also remember them mentioning that a very few kids end up on medication indefinitely, a statement that was quickly qualified by a soothing but don't worry, that hardly EVER happens... And so worry I didn't. What is the point of too much worry anyway. But the fact remains, that Gavin has found himself numbered among the very few. I guess I shouldn't be too surprised, considering what a difficult time he had in the hospital with regulation his blood pressure. But still. So what the doctor meant, I believe, by "this is what we want to see" is that his condition is treatable and not an emergency.

So I'll try to explain why he needs medicine:
As I mentioned, Gavin's heart tissue has thickend. This is not good, because it shows that the heart is being required to work harder than it should (so it builds more muscle). As far as I understand, the doctor doesn't really know why his heart is having to pump harder, but the medicine (Enalapril) that he is back on, will help the arterties in his extremities expand, thus allowing better blood flow. Another factor to mention here is that Gavin has a bicuspid valve--this is a very common thing and not necessarily a problem--but the doctor says there could be a correlation between the valve and the tissue issues: "People with a bicuspid valve sometimes have less elastic tissue" or something to that effect. It is all a little hard to fully digest. His blood pressure today (while active) was 110/53 which is in the normal realm. If it weren't for his heart tissue issue, he would be off of the med. I'm sure it would be smart to have a 2nd cardiologist take a look at his Echo at some point down the road. But for now, it is comforting to know that we can help his little heart with just the minor inconvenience of medicine once a day.

Having said that, it is not a small deal to have to take medicine every day the rest of your life. I don't even have to worry about my blood pressure and am completely independent of medicine. It is sad to think of a child having to worry about medical issues. On the other hand, Gavin won't know any different, so it probably will not be a big deal. As he gets older, he'll just give himself a little pill, I'm sure. As for now, we have to deal with the inconvenience of having to keep the liquid med cold in a fridge and remembering it when we visit Grandma's house, etc. Remembering to order the refill before you run out and on a day when the pharmacy is actually compounding medicine (3 days each week), is actually the biggest headache. But hopefully they'll fill bigger prescriptions for us and then we won't have to get refills as often. The doctor says that Gavin will be able to participate in any physical activity or sport--he will just get monitored on a treadmill at the doctor's office first, so they can adjust his meds if necessary. This makes me so sad. So this is a sad night. In the doctor's office, the nurse and doctor were so positive and reassuring that I was OK, but by the time I got to the parking lot, I felt a fleeting panicky feeling --a dejavu feeling to those weeks back in March. But by the time I had finished talking to Tim and Mimi (and finished a strawberry shake I might add :), I am feeling....OK.

It was just hard for me to finish that last sentence. 'OK' might not be the right word. Probably it is. What I know is this, that Gavin will be fine. I will be able to take care of him, and we'll just make this medicine a welcome part of our family. What a blessing it is to live at a time when we can help our little ones grow up. Not many years ago, babies like Gavin would have had to suffer a sickly childhood, if they survived at all.

I have not been a very faithful blogger. At least once a week I think about posting a blog. Tonight the dishes are not fully done, a christmas pagaent robe still needs to be sewn this evening and I've got Girl Scouts to plan tomorrow, laundry to fold and email to go through....all these are the kinds of things that thwart my desire to record our family history--but this all takes second place as I take time to contemplate and record my feelings.

Gavin is 11 months old today. He weighs 20 lbs and is 28 3/4 inches.

Gavin with his cardiologist Dr. Vernon

Today is Tim's birthday! We celebrated on family night. The guy at the local GameStopper store thought it was great that the DS game I was buying last week was for my husband--BrainAge. The kids thought it was funny when I told them that I had bought Daddy an "outfit" and a "toy" for his birthday. I told them, grownups are just big kids, we still like new clothes and toys. I made Tim a football cake at Rachel's suggestion. Happy Birthday Honey! Love, "S"


John Boy said...

Isn't it nice to know he can live normaly? The pill will be annoying at first, then one day he will take responsability and remember on his own. Crazy stuff. Glad he is going to be fine. Thinking of you. J

Anne said...

I am so sad for you Heather. I am happy too, that Gavin is ok, but I understand your heartache. We would do anything to keep ourbabies happy and healthy and having that our ofyour control is torture.

Allyson said...

Thanks for the post! I, too, am not as faithful at blogging as I should be. Ditto to all the things you said need to be done, but aren't. I've been up way too late this whole week working on a RS cookbook to be given out tonight. I'll be glad when this week is over!
Take care of little Gavin for us. We're glad he'll be OK in the long run. And happy birthday, Tim!

Kristi said...

I just discovered your blog. My little boy, who will be 17 months old on Friday, had his coarc repair in Feb 2009 at 5 months old. We were diagnosed on Jan 27th, told surgery could wait until he was 5 years old, then at a second opinion TWO weeks later we were told, his heart was not functioning well and surgery needed to be in 10 days. Okay, five years or ten days? Off to a third opinion a week later (with surgery scheduled), and were told, "surgery is going to be in two days, his heart is functioning at 50%.

We are now coming up on the one year anniversary of his surgery. He still takes enalapril daily, but we are hopeful for it to be weaned next month. (Echo to determine that.)

I am just starting to read your story, but man it sounds so similar to ours, at least in places.

I hope Gavin is doing well. I know how much it stinks to have your baby on medicine. I know how hard it is to have your baby have a CHD. I am sorry you and Gavin have to deal with this. Yes, it is awesome that our sons can be treated and live relatively normal lives, but honestly, overall it is still hard for all their suffering.

I hope you are truly OKay now that a couple months have passed since this last post. Hang in there.

He is a cutie!

Lucky10 said...

I came across your blog today. I hope Gavin is doing well. I have a 2 year old daughter, Cassidy, who was born with Tetralogy of Fallot w/ PA & MAPCA’s.
I think blogs are a great way to get the word about about CHD’s and I commend you for what you’re doing.
My wife and I are also on a mission to spread the word about CHD’s. We just started a jewelry company called Lucky 10. All of our products are handmade and pertain to Heart Defects and the Heart Community in general.
Please check out our site when you get a moment. If you could help us get the word out about our new business we would be very grateful. It’s a project that’s very dear to our hearts.
Thanks so much and we look forward to reading more on your blog!
Vito Lisa

P.S. If you want to keep up with Cassidy’s journey here is her Carepage info: , Page name: cassidylisa