Well, as most of you know by now, Gavin's surgery was pushed back from Monday to Tuesday, because his surgeon had to do an emergency heart transplant Sunday night, and he wanted to be well rested before Gavin's surgery. We are completely fine with that decision!
We are definitely nervous going into this surgery. Prenatally, the soonest it was anticipated that Gavin may need surgery was 4 weeks old, but once he was born, we were told that he may be able to make it to 4 or 5 months old before having to have anything done to his heart. Well, because Gavin has had so many tet spells (which means his oxygen saturation levels keep dropping), the surgeon and cardiologists decided that Gavin really couldn't make it any longer without some kind of surgery.
We met with the surgeon Sunday morning. There are quite a few concerns with Gavin's heart surgery, and we won't even know exactly what kind of surgery will occur until he's on the operating table. The goal is to put a shunt in his heart and widen his pulmonary valve to improve the flow of the oxygen rich blood from his heart to his lungs. Some of the concerns going into surgery are the fact that Gavin is only two weeks old, that he just had a major abdominal surgery which he is still recovering from, that he is small and behind the curve on where he should be with his weight, and that he hasn't been on milk/nutrition very long to help him grow and get stronger. To further complicate things, the anatomy of Gavin's heart is reversed from how it should be. The shunt should be a fairly straight forward surgery, but the area where the shunt should go is on the opposite side of what it should be in Gavin's heart. So the shunt will either have to somehow cross over Gavin's heart or they have to figure out another way to re-route the blood flow to Gavin's lungs. If that process doesn't seem like it is going to work, then the surgeon may decide to go ahead and do a full repair of Gavin's heart. Again, because of Gavin's small size, it would make for a very difficult surgery from a technical perspective, but also would be significantly more demanding on Gavin. If the shunt surgery is successful, that will hopefully buy us about four months before he'll have to come back for a full repair, and that gives him time to grow and get stronger before going through the full open heart procedure.
Another big concern is placing Gavin on a heart/lung machine for surgery. Typically, this wouldn't be required for a shunt surgery, but due to Gavin's reversed heart anatomy, he will have to be on the machine regardless. The machine is difficult on any baby, but even moreso with Gavin still healing from his stomach surgery and being so young. His Trisomy 21 adds further complications as well. Coming off of the heart/lung machine will require the right balance of clotting the blood around the surgical sites, but not to the degree to interfere with the surgery, but also keeping the blood thinned when bringing Gavin off of the machine. The surgeon told us very directly that IF Gavin makes it through the surgery, that does not guarantee that he will survive the recovery period after surgery. So the next few days will be very critical.
We've asked about the possibility of pushing back surgery a week or two, but there are risks associated with that as well. With the amount of Tet spells Gavin is having, there is a possibility that he could crash again and not be able to reach stabilization again. Plus, he is on some pretty heavy medications for his heart and there are side effects and dangers of leaving him on those for too long given his age and size. So to quote the surgeon, "neither decision is ideal, both have extreme risks, and surgery is the better of the two options at this point."
Gavin is the first case in the operating room tomorrow, and depending on what the surgeon decides, he will be in surgery any where from 2 to 5 hours. The ICU doctors have said that Gavin really is a fighter, and they would certainly not say that he has "wimpy white boy syndrome." The fact that Gavin is so feisty, and that he is going to surgery as stabilized as possible are things that are working in his favor. Please keep him in your thoughts and prayers throughout tomorrow and the following days that he will be recovering. We do feel surrounded and comforted by the support and prayers we are receiving and are forever grateful that so many of you are on this journey with us!