Sorry this post is a bit delayed because Comcast went down, taking our server with it last night.
Patrick and I started the morning with a happy, snuggly conversation in bed. He woke up feeling sad after a night of not sleeping well because his nose was stuffy, so I figured we both needed it. I told him it was my birthday. He told me it was his birthday. I told him he could keep having a birthday till Thanksgiving and that we’d share yesterday. I asked him how old i might be. He said 8. Almost. I’m 35: 3+5=8. Then I told him, as I always do, about how on my birthday I like to remember that he is my best present. (We were first granted custody of Patrick on my birthday 6 years ago.) I asked him if I could wrap him up and put a bow on his nose. He said no, but it helped him giggle.
My birthday celebrations were simple. Brian brought me breakfast and some presents. When the child life stopped by, Brian told them it was my birthday. They sent one of Patrick’s favorite volunteers right around lunch time, so that we could go out. We went to Cheesecake Factory and ate the biggest meal we’ve seen since we got here. I forgot to take a picture of my cake before I dove into it. (Hungry.)… But the pineapple upside down cheesecake was delicious as usual.
I spent most of the rest of the day just being with Patrick. That’s where I want to be, anyway. For some reason, he started to feel very nauseous yesterday. His nose is stuffy and he has a bit of a cough and sneeze. We don’t know if this is the reason. However, seeing his ostomy and especially emptying it became unbearable for him yesterday. He gets extremely sick just at the thought. We are trying to make our way through it for the time being by covering our heads with a blanket while we do it so he can’t see and smell as much. But I’m also going to be ordering some products online that I hope will help.
The nausea just got worse as the day went on, though. He started to feel sick if he laid down. Eventually, we were pausing feeds and giving him Zofran, a medicine to help with nausea. Patrick had a really rough night. Right before bed, he got really sick and tried to throw up. (Can’t quite figure out what the surgeon did to make it so that doesn’t happen. She didn’t mention anything to explain it.) He had some blood in his diaper. (They say this could just be surgical scabs falling off.) And he just had a hard time staying comfortable. Eventually, we ended up sleeping with the bed upright and him propped up on me and he managed to get a little bit of sleep.
Patrick has been on a continuously fast, upward path since transplant. So far, he is still miles ahead of where most patients are 3 weeks out. Transplant recovery is a rollercoaster of good and bad news. Hopefully this is just a small setback. The nurse practitioner from the transplant team just stopped by and didn’t seem to feel that any of this was exceptionally worrisome.
Today he was already scheduled for a routine scope and we hope that there will be some good news there.
Meanwhile, though, lest you worry about me not having had enough celebration for my birthday.. just remember that I got what I wished for most. Real food. Phone calls with people back home. A day with my little family. Birthdays don’t always have to be parties. Patrick got a sheet of stickers yesterday in the mail. His birthday gifts are very prized possessions. Immediately, he covered me with the stickers, then gave me a hug and told me Happy Birthday. And even as he was having a hard time sleeping last night, he snuggled up and wished me one more Happy Birthday. He gave me all of the very best he had to give yesterday. THAT is more than anyone could really hope for, no matter where the day is being commemorated.
Patrick Hoopes 