Day 115

After running a couple of tests and talking to a lot of doctors today, we've come up with what could be a tentative plan. (We actually don't have anything nailed down, but we're talking about it, which is progress from two days ago.)

We had changed his feeds back to bolus feeds every three hours, hoping that going back to his basics would decrease the vomiting even if slightly. That plan was a fail. He's still throwing up just as much as before, so we know that adjusting feeds isn't going to solve anything. (I could have told them that, as we've tried that approach for three months now, but I guess they need to earn their paychecks. :)

He had an abdominal ultrasound and a small bowel follow-through done this morning. Neither showed anything significant that could be causing so much trouble. Our next tests are a gastric emptying scan and a ph probe in his esophagus, and those will be run later this week and Monday. The GI doctor said she might throw in a couple of extra tests (just for fun, I guess?), but those are the only ones set for now. We'll have to wait and see what those show us.

They brought Holden's case up in the surgical conference this evening, and it looks like we are back on the surgery board. We all feel like at least some of his issues are being caused by the NG tube itself, and that part of the problem can be solved by putting a feeding tube (or g-button) directly into his stomach. If you'll remember, the doctors really didn't want to do any surgeries at all until his transplant, since they don't know what his own heart can actually handle. However, the more everyone discussed it, the more concerned we all grew with putting surgeries off until after transplant. He'll be immunosuppressed his entire life after he gets a new heart to keep him from rejecting it. Even minor surgeries become a much bigger deal in a transplant kid, and the risk/benefit ratio seems to point to doing the procedures now. They'll want to take care of all of his issues at once, so along with the button he'll also get the Ladds procedure to correct his malrotated intestines. If they find any other issues, we'll try to correct those at the same time as well.

We all feel like Holden is in a much better place now than he was for his last surgical procedure. (His last procedure was to take the PD cath out, and he crashed pretty hard and ended up back on the oscillating vent after that one... That's why everyone is so cautious and hesitant to do another surgery. Nobody can say for certain just how much his heart can take.) His main surgeon stressed that he wants every test and scan possible run before we schedule him for a surgery, for two reasons. 1. We need to make sure that we're not missing anything at all that could be causing all of this. Nobody thinks we're going to find anything on the tests, but we're going to run them anyway because 2. The surgeons don't want any surprises. They've already learned that we can count on my little man to find the most remote odds and capitalize. He has never played by the rules, so they want to know what they're getting into before they get into it.

I wish we had an actual "plan", like dates and times set in place, but I'm okay with having a general direction for the time being. We won't finish with his tests and scans until early next week or later, so we won't schedule anything until then. It is such a relief to have an idea of where we're heading, instead of just idly passing the time away in here. None of these are the answers I wanted, as I really don't want to send him back to another surgery, but we'll just do what we do in here and roll with what comes. I think Holden's game for whatever we decide to do... He's far tougher and braver than I am. This kid can do anything- All we have to do is give him the chance to prove it!