We took Jake to TCH for his check-up with his cardiologist today. Can I just say how proud I am of him? For a three year old, he is so incredibly patient and gentle natured. He had his echo which took about 45 minutes today AND then we waited to go into the heart clinic AND then he was patient during his EKG AND then we waited to see the doctor AND then he was patient and quiet while she listened to his heart for 10 minutes (which is like an hour in 3 year old time) AND then he was patient while we talked to the doctor and asked countless questions AND then he was patient while he got fitted for his take home EKG machine which he has to wear for the next 24 hours…whew!
So here is what we learned today: the membrane under Jake's aortic valve is still growing but seems to be growing slower so that means he won't be having surgery this summer! We don't go back for four months (September) at which time Dr. A will determine if it's time yet or not. This means the earliest he might have surgery will be November or so. This is determined by the pressure gradient and peak velocity of the membrane. When the mean pressure gradient gets to 40, Jake will need surgery. He's at 30 right now. Here is the basic progression of this since his last surgery:
Pressure Gradient:
after surgery (July): non-measurable
late August: 14
November: 18
February: 25
May (today): 30
Peak Velocity:
after surgery (July): non-measurable
late August: 2.8
November: 3.0
February: 3.5
May (today): 3.5
Between November and February, we saw a big jump in both numbers so the doctor was anticipating the same jump this time. Instead, the pressure gradient has grown but slowed a bit and the peak velocity has remained the same. She said we'll continue to play the "wait and see" game. Sub-aortic membranes are a mystery to the cardiology community and definitely to us. What we do know is that prayer is effective! We've had countless people tell us that they pray for Jake everyday. We even had some dear friends come over and pray over Jake about a month ago. I wholeheartedly believe that prayer (God) is slowing this membrane down. I know Jake is in God's hands and that is the greatest comfort in this world.
What does all this mean on a day to day basis? We are to continue to attempt to keep Jake cool and out of the sun in the middle of the day. We are supposed to make sure he doesn't over exert himself (that probably won't happen…he's 3!). Ty asked again if he could play soccer in the fall and Dr. A again answered, "he can swim all he wants if it keeps him cool." I don't see organized sports in our near future. This part of his condition is the hard part in that it's hard not to worry about Jake getting overheated or playing too hard. I need to pray for wisdom for sure. The other question Ty asked is if it would be possible for Jake not ever to need surgery. She said he will definitely need it, but the slower this grows, the longer we can wait which is best. The bigger Jake is, the bigger his heart is and the easier it is to operate.
He did go home with a portable EKG machine because this condition often times alters the rhythm of the heart. He has 6 wires taped to his chest that are connected to a small machine about the size of an original Ipod. We tuck the wires in his pocket and the machine goes in a carrying case that has a shoulder strap. He hasn't bothered it at all so far. By the end of the day though, he had had enough and he spent 30 minutes curled up in my lap cuddling and trying not to cry. My poor boy was exhausted. After we rested awhile, he felt like playing and had a good evening. I, too, am exhausted…the rest of the family is asleep and I think it's my turn next. Thank you so much for all of your continued prayers for Jake. They keep us afloat in our roller coaster ride through CHDs and we truly are eternally grateful.
Jake with his portable EKG (and ice cream all over his face…well deserved today!)
Showing off his wires
What Grace looked like after I spent 30 minutes with Jake on the couch…Her hands and face are covered with (washable) magic markers. I thought she was nicely, quietly coloring with crayons until I looked closer :)
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