I have done a terrible job keeping everyone updated since we got back to the hospital.
On Sunday afternoon, the general pediatric surgeon (the one who has followed Sam's case since he started having possible GI issues weeks ago) came by again after more X-Rays and an ultrasound didn't show anything to request a CT with contrast for Monday morning when the pediatric radiology folks were here. The attending cardi docs didn't want to wait that long, so they ordered a CT with contrast for that same day, Sunday. Well, Sam couldn't keep much of anything down at that point, including the contrast, but the CT finally showed what they had suspected for weeks--there was fluid in his abdomen, but they couldn't tell if it was inside our outside his bowel. The location determined his course of treatment. We expected to have a plan in place early Monday morning, but the interventional radiologists couldn't confirm the fluid's location based on the results of that CT, so they ordered another one. The CT from Monday showed multiple areas of fluid and air, which means there was a perforation in his bowel at some point, and his situation was much more serious than they expected.
On Monday, the attending cardi doctors, NPs, and nurses were all over the place trying to get some answers about Sam's case. We could hear them talking to each other on the floor or on the phone about Sam, but no one really gave us a lot of information until about 4:30 P.M. when we were told they were prepping an O.R. and getting a team together for him to go to surgery that night. A surgeon we hadn't met before (though we like him A LOT better than the one we had been talking to for weeks) came to talk to us about Sam's surgery. He suspected Sam's condition would be pretty simple based on the fact that Sam was acting uncomfortable but not nearly as sick as babies do when their condition is much worse. He said he should either be able to fix the problem pretty quickly or assess the problem and make a plan for a different surgery later to fix it if it was more complicated.
They took Sam back to the O.R. at 5:30 P.M. Twice now, we have followed Sam and a team of doctors to the O.R. It's awful! That's just something parents shouldn't have to do! I need to grieve privately, but that's not possible here.
An O.R. nurse called later to updated us. She said Sam was asleep and that they were about to start placing a different kind of central line called a broviac line. After that, we got text updates throughout Sam's surgery. The first one said, "Your loved one is off to sleep, and the procedure has started." Ah, technology! And then the texts just said "Everything is going well with the procedure." A little after 8:00 P.M. I got a text that said they were finishing up and the doctor would be out to talk to us shortly. I expected the surgery to take much longer than that, so right away I was worried.
The surgeon explained that Sam's condition was more complicated than he originally expected. Sam had an ischemic stricture with perforation and an abscess. The stricture was essentially a part of the bowel that was damaged somehow, and once it started healing, it shrunk, much like how a scar heals. The surgeon doesn't know why this happened, but they sent samples to pathology to get more info. The surgeon removed the part of his intestine that was damaged, and Sam has a colostomy bag that will be in place for 6-8 weeks. They'll do another surgery to repair that and close him up. I think Stephen and I were shocked at how sick Sam really was, especially since he didn't act like it. Yes, there was obviously something wrong, but the surgeon said most babies are SICK when they have the kind of damage Sam had.
The next morning, Tuesday around 11:00, Sam started to wake on his own, so he was extubated. Once the anesthesia wore off, he acted like he was in a lot of pain. The surgeon came by that afternoon to check on Sam, and he acted completely surprised by how good Sam looked. He said most babies are intubated for a week after that kind of surgery. I was encouraged because I thought Sam looked terrible.
Well, the rest of the day and night, Sam was miserable. They gave him several different pain medicines, but nothing helped for very long. At rounds yesterday, I asked what else could be done. The nurse gave him another kind of medicine, which helped for a little while. The NP thought that they just weren't staying on top of his pain well enough, so they started giving pain medicines as often as was safe, instead of waiting until we requested it. Last night around 7:00 P.M., they started a constant drip of some pain medicine, and he has acted much more comfortable since then. He slept much better last night, and today he has been alert and happy.
Sam's second surgery has been much harder on Sam, Stephen, and me. We have been told his abdominal surgery is much more painful by nature than his open heart surgery. The doctors have expressed how frustrated they are that they did everything they should have done, and the scans didn't reveal Sam's issue until it was really serious. This GI problem started right after his OHS, if not before, when he first started spiking fever on December 13. Stephen and I had months to prepare for Sam's heart surgery since his prenatal diagnosis back in May. We felt like we completely understood Sam's physiology and the procedures the surgeon would do to correct it. I will admit, Monday after his surgery and yesterday are the most devastated I have felt about Sam's health. With his heart situation, there was a definite diagnosis and one way to correct it. His GI issues have been so unknown, and his surgery was basically just "we'll deal with what we see when we get in there" kind of thing. I was really upset by how uncomfortable he was yesterday--it made me think something else was wrong. Granmommy has had several abdominal surgeries, and she said she was miserable after each of her surgeries, and the NP explained that abdominal surgery is somehow just more traumatic than OHS. I think I have been pretty delusional about the seriousness of Sam's case. He had no setbacks in the NICU, and he was able to go home after six days. We had over two great months at home. Any time anyone asked how Sam was doing, I would say he was basically just a normal baby, and he was. In my mind, I expected his heart cath to go well, his Glenn to go swimmingly, and we'd go back to being a nice, normal family. It has been a shock to me how much this has all not gone according to my plan. I know that God knew all of this would happen even before Sam was born. I know the Lord knows exactly how Sam's story will go, and I find comfort in that.
I will tell you it's much harder to be on the receiving end of the body of Christ than on the giving side. We have been lifted up by family and friends' prayers, words of encouragement, gifts, meals, hugs, etc. I find scripture is the most encouraging to me personally right now. I'm making a list of verses that people send me, and I'll write a separate post about that later.
