Wednesday, September 5, 2007

Day 8: Same Room, Same Nurse, Different Day

John had a hard time tolerating his feeds last night, and threw up several times. We knew that something was wrong when we took him out to dinner after his discharge and he wasn't interested in the food. It did give us a chance to call the Nurse Coordinator for the IRP program in the middle of the night and see how that worked, excellent. John still wasn't feeling the best this morning, but was eager to go for a ride in the Jeep so we took him to check out where the closest Lutheran congregation is, close but well out of walking distance, and where the closest library branch is, close and within walking distance on a nice day. He was thrilled to see that the library had one of his favorite books and has been telling me "Bear Wants More" every time the subject of books came up. But again he had no interest in lunch, despite it being something that he would normally enjoy.

We got back to the Lied center in time for him to have a bit of a nap before our appointment with Brandy, the coordinator that we woke in the middle of the night. Again he showed us that there was a problem as he chose to sleep instead of walk. During the appointment Brandy explained a lot to us about the IRP program, how it works and what to expect of it, and that they followed the kids for life once in the program and provided support to local doctors when we went home, all good things to hear. What wasn't good was that John was progressively warmer throughout the meeting and fell asleep sitting up next to me, instead of playing with dad's pen and trying to get to the all-to-close kleenex box.

Brandy had planned for us to go for labs, and we were glad they were scheduled because by this time John just wasn't acting his normal self at all and we were both worried that there was something wrong beyond just tired from staying up puking part of the night. Dad went with us to the treatment center for labs, but had to kiss us good-bye and head home before we actually got in for our appointment. One of the nice ladies brought John a little stuffed dog and that was a great distraction. Once in the center itself it became evident to the nurse that was doing the labs that John was more than just a little under the weather and she called in the IRP Nurse Practitioner who took one look at John, ordered more labs, and started him on antibiotics and admitted him.

So here we are, same room, same nurse, about 20 hours between discharge and admission but John seems to be resting much easier and the fever that he spiked has abated and not returned, despite the length of time between tylenol and now. I am rather impressed with the approach that was taken to this, and one of the nurses told me that they see this a lot, little kids with guts full of bacteria with line infections before the bacterial overgrowth can be managed completely, that they wouldn't know what to do with a normal childhood illness but give them a kid with a line infection and they all knew what to do. For a group of people who do not really know John much beyond test results, and have not seen how fast he can get sick and deathly sick at that, they moved very quickly not only to get antibiotics and antifungal drugs on board but also to monitor him and watch to see if he was heading into sepsis. All danger has certainly not passed from this current infection but he certainly seems to be on the upswing of it already.

This episode, while confirming our fears of a central line, also confirms our choice of where to place John for this treatment. Not that others have not handled this well and often for him, they have and saved his life doing it, but that this is part of the routine of treatment here and expected and that they were so ready for him to tank on them just tells us one more time that it's good to be here in this IRP program.

I have lots of unanswered email, I'll get to that tomorrow, it's been a very long day and rest in-patient is never what it is out-patient. Brandy, the nurse coordinator, told us today that with line infections they don't hold them in-patient any longer than it takes to stabilize them and get them on the exact right drugs, so we expect to be out again by the weekend, maybe even on Friday. Dad won't be returning until the 16th and by then a little boy should be up and feeling great and ready for that promised zoo trip!

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