Patrick stayed home sick in bed on Monday. This would be pretty boring news for another kid, but for Patrick, this is only his 2nd ever sick day at home.
When I put him to bed Sunday night, his temperature was in the 99’s. If his temperature reaches 100.4 degrees farenheit, that is considered a fever and requires quick action. With a central line, a small fever could be a life-threatening blood infection that can turn deadly in the matter of just a few hours. If a fever reaches 101, we go straight to the hospital and say there at least 2 days.
Monday morning, Patrick’s temperature was still high, but sat just on the brink of a fever. So instead of running to the doctor, I put him in my bed with his IV pole connected, in addition to the TPN in his backpack, so that I could give him fluids to keep him from getting dehydrated.
He didn’t feel well, so he just layed there and napped and looked at books and watched Baby Einsteins. Meanwhile, I got on the phone with Patrick’s medical team. I talked to the nurses in the GI clinic to get blood cultures ordered, and then his home nurse to arrange for her to come to give them. I called his dietician to let her know that his stomach was upset and I was having to pour extra fluids into him. (This can make a difference in his electrolyte balance, which can be life-threatening.) And then I talked to his doctor, who was at home sick with the flu, but more than willing to work with me to make sure he stayed safe at home, or could go quickly to the hospital if needed. Then a conversation with his homecare pharmacist to arrange for a dose of antibiotics and some extra fluid to be delivered, and a call to the pharmacy at Primary Children’s Hospital to get some oral antibiotics too, for his belly.
I played nurse all day long. I spent a lot of the day in bed with Patrick to keep him comforted, and to watch for signs that he might take a turn for the worse. But he stayed grumpy, but stable. I also took his temperature at least every half hour.
Nursing duty spilled into the night. Brian and I took turns sleeping in Patrick’s room with him. He slept better that way, anyway, plus it meant that we could keep a closer eye on him.
And amazingly, by morning his fever was gone and he was starting to feel better. So far, nothing has grown from his blood cultures, so the gamble to keep him home seems to have been one work taking this time. In the peak of respiratory/flu season the last place you want to go if you don’t have to is the hospital. The chances of picking up a new bug and ending up back in the hospital are always there.
We’re still not sure why Patrick wasn’t feeling well. I wish sometimes he could talk. I know his stomach was upset, and that he seems to have increased problems with his motility. He’s also cutting teeth, which could have played a part in all of it.
Still, we’re happy to be home… To have been able to stay the day in bed at home, even if it did mean 2 days of hefty nursing duties and missed sleep for me. And we’re grateful for a motivated healthcare team who jumped right in to make sure that Patrick was able to stay safe and sound at home.
The good news that came out of this for Patrick was a decision that it might help to stimulate his motility to feed him. So he’s getting his little half teaspoon feeds again. Kind of the opposite of what you’d do for a healthy kid with an upset stomach. But that’s just Patrick’s life. He is THRILLED to be eating again and savors each bottle.
Patrick Hoopes 