and again...

Jake's every three month check-up with his cardiologist, Dr. Altman was today at TCH, and we found out it's time for heart surgery #3. Here's my version of our day:

We arrived at 8:30 and got his echo done first. We had the same technician we've had the past two times who likes Jake and who Jake likes, a pretty good match I would say. Jake lay perfectly still and as always watched the monitor instead of the cartoons to check-out his heart. After the echo, he got his three stickers and lollipop for being so still, and we headed into see the doctor. I knew he was acting strange when he didn't want the lollipop and refused to wear his stickers. The nurse's assistant took us back to take his vitals and got a blood pressure of 55/45. She took it two more times and the highest she could get was 64/45. Jake was being too still now and looked rather pale. Usually we have to wait at least 30 minutes to see the doctor, but she quickly popped in this time and was visibly alarmed. Within about 10 more minutes, he began perking up and his pressure was up to 75/65 and rising.

She told us that his blood pressure worried her and looking at the echo results confirmed that it's definitely time for another repair. Looking back on the past month or so, I can remember several times where it seems like Jake just checks out for a bit. He's been pale and has just wanted to sit and mindlessly watch TV. I didn't realize how low his blood pressure had been getting and am thankful it happened today where the doctor could witness it. Part of the cause is hereditary, but it can be dangerous when paired with aortic stenosis. She wants him to drink Gatorade everyday and increase his sodium through foods as well. I need to make sure his snack at school has plenty of sodium and make sure he drinking enough while there.

Then we discussed the echo results: the mean pressure at his aortic valve measured 41 mm HG with a peak at 75 mm HG. These numbers are similar to the numbers from last time which got him his last surgery. In the fall, the mean was at 31 mm HG so it's grown significantly in 3 months. Basically, the membrane beneath the aortic valve has grown and the blood flow is being restricted at a moderate/severe level. Last time, the membrane was peeled off the valve, but the surgeon did not take it all. The reason being that if he did more damage would be caused to the heart than was deemed necessary. He felt he took enough to prevent further growth. Unfortunately, that was not the case.

This time the surgeon will go in and try to take the entire membrane. In doing so, there is increased risk that the electrical system will be effected and that he will need a pacemaker. If the valve is also too damaged, he will have to replace the valve. We have a few options available when it comes to valve replacement that we can discuss with Dr. Heinle when we meet with him. Our hope is that the valve will not have to be replaced and that the coming surgery will be effective long term.

The other component today was a slightly irregular EKG reading. Jake was sent home with an EKG Holter monitor to wear for the next 24 hours so the doctor can get a more complete reading of his heart rhythm. If those results come back unfavorable, the surgery would be moved up sooner. As it is, she would like him to have surgery within the next two months or so. We now play the waiting game.

Dr. Altman will present Jake's case to the surgery team on Monday and will call us with their feedback. We then will have to wait for a surgical nurse to call us with his surgery date. The past two times have seemed to take an eternity so I'm trying to prepare myself again. We should know within 2-3 weeks.

So, here we are again. Our appointment today was overwhelming to say the least. Jake was awesome the whole time. He played his Buzz computer game while we talked with Dr. Altman and patiently waited for ordeal to be over so he could go see the trains and get his ice cream at McDonald's (our TCH tradition). Ty and I asked a million questions and are still digesting the answers. Dr. Altman is always so patient with us (me especially). I did great until we got home and Jake tried to go potty and got really upset when he realized he couldn't with his EKG holter in his pocket. Last time he wore one, he wasn't potty trained so I hadn't thought of this. I just held the wires for him so they would stay dry while he went each time. He really started crying and then so did I.

I HATE for my baby to have to go through yet another surgery. I hope to goodness that he doesn't wake up so resentful of us putting him through this. He'll be four this time and will really understand. At 9 months and even 2, there wasn't much to explain. Now there is. He loves and is proud of his scar…I just wish I could spare him more pain. We ran into our surgeon's PA outside of the hospital today and she gave us big hugs. She told us they'd just remodeled and that she'd get us the big consult room with the big flatscreen. She's so warm and wonderful, but I hate that we'll have to see her and the surgery staff again. I hate that they already know us and Jake. I hate that by the age of four, he'll have had 3 open heart surgeries.

I am thankful though. I'm thankful we live in one of the very best medical communities in the world with literally the best pediatric heart surgeons in the world. I'm thankful for our vast group of family and friends that continue to lift us up in prayer. I'm thankful for our sweet Jake and his incredible sweet spirit and tough resolve that will get him through another major surgery. I'm thankful for God who will see us through this storm. I'm thankful that we've become part of the It's My Heart community who have all been through this before.

We just had Christmas and the kids have plenty of toys to see us through our upcoming hibernation period before and after surgery. I can just homeschool Jake the pre-school he misses and do some fun crafts with both he and Grace. I'm sure his speech therapist can give me exercises to practice his speech with him as well while we miss those appointments. I'm pretty sure this will only strengthen our family as we rely on each other more. I'm praying it will also strengthen our faith and relationship with God as well.

I'm sorry for the long diatribe, but writing is therapeutic and helps. We'll keep the blog updated with info. as we receive it.