December 1, 2009Posted by on
Mikayla had an appointment with her Cardiologist today. I was reminded again of how much people are drawn to her when several nurses and the doctor agreed that she was their “favorite patient”. It’s amazing to see how much attention she attracts just by being. That big smile and curly hair are hard to resist!
She handled the appointment better than I expected. She’s so active and independent now that I thought she’d have a really hard time with sitting still. She did complain a little but overall did very well. We received several pieces of GREAT news today. The first – she finally weighs 20 lbs!!! At 20 months old (tomorrow) she can sit in a big girl car seat for the first time. The doc plotted her growth on the chart and said something about her having a “perfect growth curve”. SOOOOO funny to hear that about Mikayla. She’s still way under the curve on a “typical” growth chart but is steadily gaining weight along her own curve. With as much as she’s been eating, she should be gaining weight!
At every appointment she has an ECHO done. Today was no exception even though she protested a bit. She doesn’t like the cold gel at all! There are 3 problems with her heart that the doc checks at every visit: Pulmonary Stenosis (the narrowing of the arteries going from her heart to her lungs), the holes between the two upper chambers and SVAS (the narrowing of a valve inside her heart). Both narrowing problems are typical of a child with Williams and the clue that led to her diagnosis. The holes are a problem all her own – not related to Williams.
Today’s ECHO showed great news all around. The SVAS has always been extremely mild and there was no change today. It is so mild that the doc is not even 100% sure she has it. The valve looks a bit “pinched” but it isn’t enough to affect blood flow at all. This is something we’ll monitor for the rest of her life but shouldn’t ever have to do anything about.
The PS has always been her most severe issue, diagnosed originally as moderate to severe narrowing. Over the past several visits the doc has charted whatever numbers he checks from the ECHO and said that it looks like the narrowing is improving. Today, he didn’t even have to measure. Just looking at the ECHO he said that the narrowing has visibly, clearly improved from our last visit and would now be diagnosed as very mild. One side barely looked narrowed at all. Praise God! This is especially good news since there is no procedure that would fix this particular problem – it either improves on it’s own or it leads to heart failure. Thankfully, her’s is improving. Of course, we know that it isn’t improving on it’s own but that God is in full control of this healing process.
The holes, as I said, aren’t related to her having Williams. But, because of the severe narrowing she had as a newborn the doc often said that if it weren’t for the holes the pressure building up in her heart would be much worse. Not that the holes made anything better but they allowed some pressure to get out which meant her heart “handled” it better. (amazing how God works sometimes) The holes haven’t changed but now that her heart is getting bigger we were able to get some more information. Before today, the doc has always said she has “multiple holes” but her heart was too small to know how many or where they were located exactly. We’ve always expected that she’d have to have open heart surgery around 3 years old in order to fix those holes (unless there were drastic advancements in the medical world between now and then). Today he was able to see that there are two holes but that they aren’t close enough to “patch” with one device, she’ll need to have two devices put in. I said, “so I guess we’re definitely looking at open heart surgery.” He said no, that two devices can be put in through a catheter IF she’s big enough. He still doesn’t want to commit to a plan but he said that if we were making a plan today (meaning if her heart can handle the added strain from the holes and she continues growing and improving) we would wait until she is 6 or 7 and then do the surgery to patch the two holes. By that time she should be big enough that the surgery can be done through a cath and we wouldn’t have to open her up!!
AND…we don’t have to go back until June! A few less appointments to keep up with next year. This is better news than we had even hoped for. Mike and I just wanted her to weigh 20 lbs. If the good news had stopped there we would’ve been thrilled. As Pastor Greg would say…Thanks be to God!