Made of Gray

ICU Day 2

Holly D Gray7 Comments
Today has been a better day compared to yesterday, of course. Caleigh slept most of the day. She was basically out of it. Her body fighting the infection inside. This evening she seems to be hurting more. Groaning, whining, tossing and turning in her bed. I'm hoping to get her something to help sleep during rounds tonight. I think it will be a long night otherwise.

Cultures came back positive for yeast. We were offered a choice of anti-fungal medications. All of which are either terrible for the liver or terrible for the kidneys. We were also asked to be in a research study for a newer anti-fungal. Mainly studying the dosage amount in children because it had only been used in adults. Eric and I considered it, talked to the research coordinator, but decided to decline. It was a very difficult criteria to meet and Caleigh fit the profile. Caleigh would have had extra doctors appointments, blood draws and eye exams. We've just got so much going on and Caleigh's been through enough that we couldn't think of diving into anything like that right now. So they started Micafungin to treat the yeast and now we wait. Every case is different as far as the reaction time to the meds.

Our surgeon has been called and he'll come by to talk about Caleigh's line. I'm pretty sure they will have to pull it, but right now they are using it to get her all of her meds and fluids. Yeast is very tricky and it likes to hides out and come back just when you think it's gone. It attaches itself to the outside of the line and travels up the inside. It's very hard to get rid of and we've been told that her line will probably have to go.

Here's the hypothesis as to what happened.....
Caleigh had yeast in her intestines. This yeast along with all the other bugs hanging out in there can translocate to the blood stream. They basically jump ship and share within the body. This is a fairly common risk with short bowel kiddos. I've heard of kids having a sudden onset of septic symptoms when their line is flushed. By flushing the line you are pushing all of the bad bugs hanging out in the line straight into the blood stream and fast. So the thought is that when her line was flushed after the culture was taken, at home health, it pushed all those bad bugs into her blood stream causing the spike in temp and febrile seizure. So I asked our infectious disease doctor about our new protocol of betadine and alcohol and he said that it is fine and that we were doing a great job. This wasn't a sterile process problem. Just a really bad case of gut bugs gone bad.

As of tonight Caleigh's bowels have shut down as well. Her standard dark green drainage is now exiting her body by g-button. I assumed this would happen. It always does. So we wait on them to 'wake back up' to start feeds.

TPN was started back up tonight. It's replacing the fluids that they had going in the ER. Hopefully a little bit of nutrition will help the healing process.

Caleigh's fever has remained high all day. Over 102F and spiking close to 104F. She's getting Tylenol suppositories every 4 hours to try to keep another seizure away. Her body is trying to fight the infection so a fluctuating fever is actually a good thing as long as she doesn't seize again.

An EEG was ordered around noon to rule out any seizures that may be happening without us knowing. The EEG tech kinda told me that everything was good, but we haven't had an official report yet. They also haven't had Neuro come by to start meds either so that is a good sign. I'll have more info after tonight's rounds.

Chest x-rays were done this morning because her left lung has some diminished sounds. So far they are just watching it and nothing has been done. The x-rays didn't show anything significant.

I hope I'm covering everything. I suspect we will be in here for the next 7-10 days depending on how things go. Being in the PICU doesn't exactly get you on the going home list. So making a guess is just for fun right now.

I did get to see a bit of snow through one of the PICU windows today. It was really coming down. From what I hear there is 5-8 inches out there depending on where you are. It would have been nice to sit and watch from our windows, but that's ok. There will always be another time.

Tonight we are praying for Caleigh's fever to go away and for the yeast to be gone quickly. Thank you to everyone for your support during this little bump in the road. We really do have a wonderful support system.
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