Well again, I posted last night and then went to be with Patrick and things got worse. I’m kind of afraid to hit post early tonight.. But try hard not to believe in medical jinxes.
Yesterday evening, Patrick’s fevers started to show up even with Tylenol in his system. He also started to have coughs that he couldn’t suppress. He was so miserable, he just curled up on my lap and didn’t want to move. His nurse called the resident and more cultures were ordered as well as a chest x-ray. They also started antibiotics and an antifungal. Daddy gave him a priesthood blessing, too.
And then, we just tried to let him sleep. Sometime between 3 and 5, his fever broke. By morning, he was feeling better.. but certainly was not back to himself. His cough is still bad. He’s breathing heavy. And every time the tylenol wears off, his fever comes back.
I was frustrated during the night because I just kept hearing that everything was coming back negative. However, today when the doctors rounded, they said that they’d seen a pleural effusion in the x-ray. That means that there is fluid around the outside of his lungs. That is why it is hard to breathe.
Rounds were kind of refreshing. It’s nice that our input is both welcome and helpful. I told them about what had happened overnight, Patrick’s typical infection history and medication allergies, and my own thoughts and worries.
The current working theory is that he has some kind of respiratory bug, maybe a pneumonia. But his lungs sound good and he’s on the right IV antibiotics to help. So today’s orders were wait and watch. If things get worse, they’ll do a CT scan. Welcome to the world of immune suppression.
He napped all day and woke up with lower temps but more trouble breathing. He’s spent the day in bed watching Blues Clues. Good thing kids like watching the same DVD’s 1000 times. These TV’s are too old for our chromecast to work so we are limited to just what we own physically. We have enough for about a day’s worth of Blues Clues viewing and Patrick doesn’t mind rewatching the same thing over and over again.
I have tried to keep other things moving forward. Got him officially enrolled in school. His teacher should come tomorrow if Patrick is still doing ok. Got word that the insurance company has responded to the appeal and decided to cover the Valcyte after all. Ordered some more ostomy bag samples. Convinced the team that they still want to do our discharge training early this week in case Patrick gets better over the holiday weekend.
Alas, the evening has been hard again. His fevers have reached 104 when his tylenol wears off. His heart rate is high. His oxygenation is low, but holding. And he’s having a hard time keeping his medications down.
Darn holidays. We need a better kind of holiday tradition.
Patrick Hoopes 