Surprises… And the transplant team’s recommendation

Today didn’t go quite like I expected.

When I called Patrick’s surgeon’s office to schedule a consultation about his line, I wasn’t expecting them to say I could come in first thing this morning. But they did, so we got up, sent Brian to work, and then hurried to get ready and go to the hospital.

Brian met us there. I filled out a form that didn’t have nearly enough spaces for the answers to the questions they asked.

It was good to see Patrick’s surgeon again. He’s grown a full beard. That was a surprise.

We explained our concerns about the catheter of the line wearing out and passed along the recommendation to change the line over a wire. He read through the medical records sent from Nebraska and the images I’d brought along on a CD. And then surprised us by saying that he thought that Patrick probably had at least 2 good line sites in addition to the one his current line is in and suggesting it might be better to use one of those sites.

But none of the plans seemed especially straightforward. He was obviously brainstorming ways to optimize success in the face of a really difficult problem. The suggestions included making an incision to visualize the jugular vein better. Yeah.. that kind of trouble shooting.

Finally, after hearing a lot of semi-risky solutions, I asked “So, if we were just to try to repair this line and the repair didn’t work, could you still get a line into this site?”

The answer was yes. And so, rather than a surgery replacing the line, we went for the choice to repair the line.

But to be safe, he asked first that we go to radiology and have them do an x-ray to look for clots, kinks, breaks or other defects making the line problematic. And he sent us there right away.

So what I thought would be a quick consult turned into a longer visit and a trip to x-ray. Patrick was so brave! X-ray used to terrify him. But, seeing his hand x-ray has made him happier about that. I told him that an x-ray was a picture of his hand that showed his bones. Then I showed him the finished product. And it matched a flashcard picture he has of x-rays. And so they’re not scary anymore.

That is a nice surprise.

The radiologist gave us the all-clear, so we sent Brian back to work and I decided to go over to the ER and see how crowded they were and if they had time, space to easily repair Patrick’s line.

Amazingly, they were pretty quiet. Strange at 11 a.m. in RSV season. Even more surprising was that the RTU (rapid treatment unit) had availability to take care of it for us. (Yay! No $75 co-pay!)

They checked us in quickly and Patrick was happy waiting for them, so long as he had Tubes (his mini-me doll). Tubes was very cooperative with lots of pretend diaper changing and even took a trip to sit on the potty.

IV team, who repair the lines, came and said they were in a hurry. That kind of bugged me. You don’t rush things related to Patrick’s line. However, it worked to our favor because when I confirmed that Patrick would indeed be too wiggly for me to restrain along, the nurse went and got some 5 or 6 other nurses AND a child life specialist who came with an iPad and Talking Tom, Patrick’s favorite app.

The repair seemed to go really smoothly…. except for one little problem with the the tiny little metal piece that holds the repair together. It slid in as she went to connect things together. But she was able to use some hemostats to pull it back out. Not bad.

So we left our house at 8:15 a.m. We returned at 2:30 p.m. I’ll find out if the repair is holding well and dried in the morning.

That meant a late nap for Patrick. Again. Poor kid was exhausted.

While he slept, I returned several phone calls. One in particular came from a man who coordinates Angel Flights in our area. I talked to him yesterday and asked if he knew any private jet charters. He talked to a pilot friend who found 2 willing pilots.

I spent a good part of my evening e-mailing those pilots to get more information. Just finding someone happy to help if possible made me feel a little better. Hopefully they’ll get me pricing today.

Now, I’ve rambled on about my day and left the information you may have been waiting for till here at the end.

If you were thinking that the transplant team met to discuss Patrick’s case today, you are right.

They called me late in the day with the results of that meeting.

Another surprise.

After much discussion, they decided that although Patrick’s liver looks good on paper, that there are a lot of little evidences that it may be more scarred than it seems.

So, instead of just an isolated small bowel transplant, they are recommending him for a liver/intestine (a.k.a. multivisceral) transplant.

Actually, they will transplant the pancreas, too. It’s part of the package. And because of all the organs they will be transplanting, there is a greater chance that they’ll need to remove Patrick’s unhappy spleen. The spleen can take some of the vessels of the stomach, too.. and so sometimes they also lose the stomach and even the g-tube.

This is apparently normal, not decided until the moment of transplant… and not a big deal medically.

The pros about this type of transplant is that transplanting the liver with the rest tends ot protect the donated organs against rejection.

The bad news is that it means that now we’ll be competing not just for intestines, but for livers. And Patrick’s liver doesn’t look so bad on paper, so it probably won’t get a very competitive score.

Also, it means that if Patrick’s body rejected the intestine (I guess rejection usually starts in the intestine) they’d have to find a way to save the liver. I guess rejection usually starts in the bowel. The liver could survive. This is a better prognosis than I had previously heard. However, it does mean that a lost intestine wouldnt’ mean freedom from anti-rejection drugs while waiting to retransplant.

Anyway… this biggest surprise kind of threw me for a loop. I did tell them to go ahead and keep working to get Patrick listed.

But my mind is having a hard time wrapping around this news. And worse yet, I realized this afternoon that maybe there’s a reason that I don’t worry as much about these things as it often seems I should. Because I didn’t really have a down minute between getting the news and going to bed. I honestly haven’t had time to work out how I feel about it. I get slammed with all of these big things to think about, but between sorting out the medical logistics and taking care of an extremely active toddler, I don’t have those quiet moments to ponder in. The problems just roll around in my mind while I try to do other things.

I do know that things continue to come together. And I hope I am right in seeing that as a sign that things are moving in the right direction.

I’m hoping I’ll feel braver after a good night’s sleep. And that tomorrow holds no big surprises.

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