Patrick is snuggled down safely in his bed after a busy, but good, first day of transplant evaluation.
It’s been a busy day, but better than I expected.
We had to get up early to get to the lab on time. But that wasn’t as hard as I thought it would be because, well, I was wide awake by quarter to 6. Thank goodness for going to bed early!
Labs went smoothly… only delayed by a late receptionist so we couldn’t check in. But the lab staff didn’t hesitate to get started while we waited. Better yet, they were more than willing to let me draw the labs to help protect Patrick’s line.
We headed downstairs to radiology next. They confused us by doing the tests out of the order that we’d been told, but other than that, it was smooth. Patrick wasn’t happy with the ultrasound, but did his best to hold still and cooperate. All staff were very kind and even kind of spoiled him. (10 stickers and a can of playdoh?). Then, we went for some x-rays. He saw that room and didn’t know what was happening and just started to cry. He didn’t want to let go of me, but once we explained and he saw that I wasn’t leaving, he relaxed. By the time the got to the “bone age” x-ray of his hand, he was actually kind of having fun.
The last test was a barium enema. That one is uncomfortable and very embarassing. The poor kid just sobbed through the whole thing. But then, in true Patrick fashion, was up charming the technicians minutes later. It was very interesting to see how Patrick’s intestines have adapted. I can’t wait to hear the doctor’s interpretations of what we saw on the screen.
We had a little time to grab food, but Patrick, for as tired as he was, didn’t want a nap. So, we grabbed some chinese in the cafeteria and let him play in the room. Then headed downstairs to meet the transplant coordinator. (Did I mention how nice it is that the appointments are literally an elevator ride away? One bonus to where we’re staying.)
We spent a little over an hour going over the transplant rules, risks, etc. Most of it was the same as what we’d already been told. It was encouraging to hear better survival rates. One thing that stood out to me was that we asked the team how often they wanted to see us while we waited for transplant. They were kind of confused.. Because they so rarely have a patient wait longer than a year, they don’t usually need pre-transplant checkups.
They talked about wanting copies of labwork done by our home hospital so they could watch for opportunities to improve his transplant listing status. And the talked a lot about what recovery is like. That is always difficult to imagine and think about. Recovery, immune suppression, infection, ostomies, biopsies, and on and on. That is what scares me. But they sound confident about a plan to help Patrick have as much opportunity and normality as possible.
We managed a nap before the next appointment, which was with the transplant dietitian and really uneventful. Really, the only news is that they think our home team is doing a great job with TPN, that we are doing the right things with feeding and diet for now, and that no, Patrick’s liver doesn’t seem to need omegaven.
With all of that done, we decided to sneak in a little family break. We packed up quickly and went to the zoo. We heard great things and it lived up to expectations. The aquarium had Patrick fascinated. The desert exhibit was impressive. The cat house was as boring as Patrick thought it would be. (He kept yelling “No tigers. Apes!”) And he was right, face to face time with the orangutans, and then the gorillas and monkeys, was much funner.
We couldn’t find the bears and were less than impressed by the lemurs, when we realized that Patrick’s monkey pacifier was missing. The buildings close at 5 p.m. and it was 4:55, so I ran to retrace our steps and found it in next to the orangutans. Just on time. But the run up the hill was enough to wear us all out, so we called it quits at the zoo.
We decided to go looking for dinner the old-fashioned way without GPS. We drove through downtown Omaha and found a neat little bakery/coffehouse place where we had some yummy sandwiches, hot chocolate and cider. Better yet, we found our own way back to the hospital without GPS.. and found that the coffee house is only a few minutes away.
Patrick was awake itchy most of the night last night, so when we got back we picked up some hydrocortisone to go with some baby lotion that a kind radiology tech snuck to us. So we gave Patrick a shower. (He is terrified of the shower in the hospital.) And then had a little spa time where I rubbed him all over in lotion, put cortisone on the worst rashes.. then put on his pajamas and snuggled him to sleep.
And now, I’d better hurry off to bed, too. These beds are still a little too small. The double bed is too soft, and the single bed where Patrick is sleeping is too hard. I spend the night going back and forth between the two. It makes the nights extra long.
Patrick Hoopes 