Yesterday marked 1 year since Will's heart surgery. In some ways I can't believe that a year has passed and other times it feels as though its been 10 years since that day. Today, ill had a check-up with Dr Awesome. He hadn't had a cardiology appointment since November, so that meant the usual blood pressures and EKG, but also an echo.
Will's BP was pretty high in his right arm (always been slightly higher due to his coarc), like, high for an adult high, but Dr Awesome wasn't too concerned because Will was pretty upset right before they took his blood pressure. But he didn't want to rule it out as a sign of a problem either. His EKG looked superb :o) His exam went well and Dr Awesome was happy with how well he looks. He did say his murmur (the noise due to his coarc) was pretty loud, but again said he needed an echo to see if it was a sign of a problem. So we went for an echo...boy, oh boy is it hard to keep a 1 year old still for a 45 minute long echo!
A rattle, a light up toy, Elmo in Grouchland, a baby cell phone, a bottle of juice, his socks, goldfish and a book helped us keep him relatively calm during the echo. He actually did better than I anticipated and only grabbed the wires once. The echo showed us good things and bad things.
The good was that his heart is still functioning normally! The left ventricle is still working and not over-working, his aortic valve is still opening well, his mitral valve stenosis is still considered mild and the left side of his heart is growing normally (nothing is too small). It also showed that his aorta has grown! There was a section of his aorta that could not be repaired during his surgery last April and as of November it was still not growing the way it should. It was still very small and causing some pressure issues. If it did not start to grow with him, there wasn't really anything they could have done for it. But it DID grow! A lot!
There is narrowing at the point where he had his coarctation repair. We knew this was a possibility (I think its something like 20% of babies that have a coarc repair have re-narrowing). So next Wednesday, Dr Awesome is going to get the opinions of the other cardiologists, the surgeons, etc.. to see if they feel Will should have a heart cath. Dr Awesome says he feels Will should have one before too long to try to balloon the narrowing section, but always likes to have other opinions.
So next week will be a big week for our family. Monday, we find out what's next for me (when biopsies and test will be and how often I will need check-ups, etc...) and on Wednesday, we'll find out if Will will be having another heart cath and how soon it will be. I asked Joe this morning how it feels to be the only medically sound person in our family...haha! His response was he may be medically sound, but mentally sound may be another thing now :o)