48hrs post surgery.

Our little man is doing extremely well! He is slowly starting to wake up. About an hour ago he really noticed our voices. It's hard to not talk to him, but we need to keep it low key so he can rest. Jenifer and I are outside enjoying the water feature while grandpa and nana watch the boy. It is nice to finally feel sun on the skin and get outside for a little bit.

As promised some detail information about what was all done and our future plans. There were two procedures that Forbess was planning on doing and those were the shunt and fix the pulmonary veins. The pulmonary veins all come together behind the heart and then go to another vein as one big vein. Forbess disconnected the big vein and connected that into the heart. The area where the big vein connected to the other vein was were the obstruction was. That should be removed now. Could grow back at the heart, but its not in our conversations. The shunt was the other procedure that was not done. In short when you go on bypass they have to clamp the stents to prevent blood from going into the lungs. Well if you clamp a stent, what happens? You break them, so that is why we were going to have to install the shunt. The stents are our shunt right now. Kinda ironic that due to a surgical procedure we were going to have to install something we already had. Well, that was not the case. Forbess was able to clamp between the stents and the lungs and keep the stents. Therefore very little time on heart lung bypass. Pretty special that Forbess made that decision on the fly when he got in there. 76 minutes total bypass time and his heart was stopped for 23 minutes.

So what's next? Now that Forbess got a good look inside it has been determined that we're not a good candidate for the 4 chamber heart. We'll have a 2 chamber heart. That is the circular system that I've explained and not the figure 8 circulatory system we have. There is still a chance we could have a 1.5 ventricle heart. I've never really explained this and judging on Forbess's mannerisms it's probably not going to happen, so no need to confuse everyone.. :). Therefore, our next heart procedure will be the Glenn.

When will we have the Glenn, I'm glad you asked.. :). Again, because Forbess was able to actually look into his heart he realized the veins were big enough now to do the Glenn. Where normally in Kaleb's case, he would need to be 8kg. He's 6.5 now which is about a 4.5lb difference. So it would be better to do the surgery now then later because there would be less scare tissue at his chest and Kaleb would not be at a high risk of infection. After the Glenn we would not be on the save at home program anymore and can take Kaleb with us to the store, restaurant, see family members, etc. no more quarantine. As usual there are steps to get there and that is where we are.

Kaleb needs to get stable enough to go back to the cath lab. They're talking that that would be next week. Amazing right!!! Currently we still have a breathing tube in and a drain line in his chest. We're looking like the other drain line will come out tonight or tomorrow and breathing tube out Sunday or Monday. So really not out of the question to go back to the cath lab at the end of next week. So the reason to go back to the cath lab is to check his pulmonary pressures. As you may remember prior to this surgery Kaleb's pressures were really high, about 200% more high than should. Everyone is hoping that by fixing the pulmonary veins (and obstruction) these pressures will decrease. Therefore, if the pressures are low enough we'll have surgery in two to three weeks. If the pressures are still to high, then Nugent will enlarge the stents or we'll let Kaleb grow and get bigger. Now, his oxygen levels play hand in hand with the pulmonary pressures. To high we wait, to low we go for the Glenn, etc. So we're in a waiting game at the moment. But in short we will have his next heart surgery in the next 3-6 weeks or 2-4 months pending his pulmonary pressures. And just to be thorough, his next surgery after the Glenn will be the Fontain when he's 3ish....

That's our life for the rest of this year. Yes we will have some GI surgeries soon as well, but everything is looking so so positive right now. We can't thank everyone enough for all the prayers and thoughts. We also revived a lot of pictures of people waring the shirts to support Kaleb. I'm hoping I can post all the pictures below. If not I'll have to do it later.
Karl