Well, I think it would be safe to say that the past 48 hours have been among the hardest we have been through. Friday, Patrick seemed to be feeling better. Well, except that he still had very frequent, black diarrhea (sorry, remember, blogging about intestines here, remember.) The team explained that bleeding in the GI tract wasn’t unexpected in an immune suppressed patient wasn’t entirely unexpected for an immune suppressed patient with Norwalk, a.k.a. norovirus.
Otherwise, Patrick was happy and playing all day. However, as the day went on, I started to feel worse and worse. I made a bit mistake by eating a great big, yummy burrito for dinner. About half an hour later my body told me that, yup, that tender tummy feeling meant that I had caught what Patrick has. Not a big surprise, given just how often Patrick had gotten sick while I was holding him the day before.
Well, my sweet husband saw that I was looking worse and worse and, even though he was also starting to realize he was sick, sent me back to the Ronald McDonald house for the night. Good thing, too.. I am sure I wouldn’t have been able to take care of Patrick at all that night. I was SO sick! But, on the way home, I stopped at the store and picked up medicines and gatorade and I spent the night trying to pull myself together enough to be mommy again in the morning.
And, amazingly, by morning even though I felt very weak, I was doing well enough to go back.
It sounds like Brian and Patrick had a pretty rough night.. changing diapers every couple of hours. When I came in, Patrick was laying on the couch and looking quite pale, but happy. I sat down next to him and asked him how he felt. He said he was ok, but I’d check again every few minutes. Then his nurse gave him his morning medications. I asked how he felt, Patrick said, “sick!” and then started throwing up blood.
We put his g-tube to drain so he wouldn’t throw up anymore.. but that kind of seemed to be the kick off for a rough day. Not long afterwards, he started to act as though his belly hurt. That got worse and worse throughout the day. (We think it was stomach cramps and maybe gas.) But at its worst moment, Patrick was screaming in pain, curled up in a ball, and not willing to be touched.
Finally, they got some pain medicine to stay down and he fell asleep, which made a difference.
Because of the bleeding, they decided to give him a transfusion. Those run over several hours and we let him rest while it was running. His color started to come back. For most of the day, Brian and I took turns laying in bed with him holding his hand and helping place stethescopes and thermometers so he trusted they wouldn’t hurt him. (This was a good way for sick mommy and daddy to rest, too.)
Meanwhile, we sipped gatorade and slowly started to eat again.
Then, once the transfusion was done, we made him get out of bed to be weighed. I hate doing this: making him get up and move when he’s in pain. He just clings to my neck and begs me not to hurt him. But moving helped his body reset a bit and over the next couple of hours, his pain started to improve.
By evening, Brian told Patrick we needed him to get up and walk again. We got him out of bed and he sat on the couch playing with toys until almost 10.
And last night, he slept peacefully all night. That was amazing. We ALL needed the rest.
I am feeling 80% better this morning. Patrick’s pain seems to be gone, though he is really guarded.
The plan discussed with the team yesterday was to take him down for an endoscopy today if the bleeding hadn’t stopped. Patrick’s diarrhea has slowed. But his g-tube has been to downdrain and there is still blood there and in his occasional diaper, so I’m assuming that is still going to happen. I know he was put on the schedule yesterday because someone from anesthesiology already came to talk to us.
I am trying to find the right way to break this news to Patrick. I’m sure he’s terrified of anesthesia here because it has always ended in surgery. Not sure I can explain to convince him otherwise.
But I hope we can find some answers that will help him finish getting better. We knew taking down Patrick ostomy meant more endoscopies and so this is going to be a part of his new routine.
I hope that all of us being sick together in the hospital doesn’t become routine. Sure, it’s nice that we can pick up a phone and order food and the nurses really have been kind to all of us. And, since he’s in isolation, we at least aren’t putting anyone else at risk visiting here. (In fact, it’s probably better than hanging out at the Ronald McDonald House). BUT I don’t want this to be the precedent for the new normal in illness after immune suppression.
We know illness is going to hit him hard every time and be hard to shake. But hopefully the next one doesn’t take down the whole family. Right now, we really hate Norwalk.
Patrick Hoopes 