It’s been quite a day over here! Alli had to be NPO since midnight, of course, since her MRCP needed to be done under anesthesia. Bigger kids can cooperate with the needs to hold breath, etc. but the younger ones they sedate so they can control it for them. With last minute scheduling you sort of have to take the left-overs, right? So she was scheduled at 11 and we tried to keep her distracted until then so she wouldn’t think too much about food. I ran down to sneak some breakfast while Austin played Candy Land with her, then I took her to do some laundry in the Family Resource Center while Austin ran for some breakfast. As usual, the imaging team was running a little behind (is anything ever on time at hospitals? Lol.) They came to get her around 11 and we sat down in pre-op for over an hour while they tried to figure out answers to various questions. When they found out she had a biliary stent they wondered what kind of stent it was. We had no idea! If it were metal they would not do the MRCP because the magnetic pull could dislodge it and cause a serious problem. So they spent a long time trying to research records to find out what kind of stent it was and what it was made of. Finally they figured out it was actually just a little piece of feeding tube so the next question was…with a piece of foreign material in the way would it mess up their imaging? They brainstormed about doing a sample image, since it wouldn’t be fair to put her under anesthesia and give her a sore throat from the breathing tube only to come out and say the imaging didn’t turn out. They gave Austin some scrubs and he went back into the MRI room with her and lay on the table beside her to keep her still so they could do 1 minute’s worth of imaging. They came back and said it worked just fine so they got busy getting her ready to go for an hour. She actually had managed to keep her IV since Friday! That’s a record for an IV for her! But it was getting really sensitive when they flushed it so the anesthesiologist didn’t want to try to give her anesthesia through it. She said the drug really burns and if the vein was at all sensitive she wouldn’t put her through it. Alli is petrified of the mask but there really aren’t options…so the mask it was. PICC was there to place a new IV while she was out and hopefully we’ll have as good a luck with the new one as we had with the old one! The MRCP took about an hour and 20 so we grabbed some lunch while we were waiting. PACU was quiet and calm, surprisingly! So she is back in her room with an order of chicken strip, rice and watermelon on the way.
Results from the MRCP showed all is normal, which is good news. But that also means that now they are confident that the stent is causing the problem. Eventually the stent should pass through along with the bile, but sometimes the bile gets caught on the stent and sort of just backs up, causing the bile to “dry out” a little and then flow even more slowly. So the plan now is to find the first opening with the endoscopy doctors (first thing in the morning please so she doesn’t have to be hungry all day ???) and send a scope in to pull the stent and possibly replace it since it’s so soon post-transplant. So…another anesthesia event, another starving period…but hopefully home the day after. It’s just a process of elimination, least invasive first, to figure out what’s happening.
They can’t get her in tomorrow so they’ll let us know when they have an appointment scheduled. So for tomorrow we get a “normal” day…