Made of Gray

Weekly Update

Holly D Gray3 Comments
This week has been super busy. It seems like the warmer the weather gets the more that we have to do. That's ok, I'll take it!
This week medically Caleigh has progressed really well. We discussed the oozy central line with our surgeon and he believes that instead of a healing slow issue, Caleigh's body is trying to reject the central line. So that is causing the drainage, and the smelly green yucky stuff. So we started applying a pressure dressing to hold the line more secure and to see if that will help with the drainage. Leave it to Caleigh's body to reject a very important part of her nutrition. This girl Hates to eat in any form!
On Wednesday we went to the GI doctor and he is excited with Caleigh's feeds. We've decided to hold off on the antibiotics for bacterial overgrowth until symptoms come back. Right now we are doing 10 days on the antibiotic and 10 days off. Caleigh may only need it once a month so we're going to see how it goes.

Caleigh's g-button feeds are up to 28ml an hour. Full feeds are somewhere around 42-45ml an hour. So she's getting close. With Caleigh's feeds going up so well it was decided to cut Caleigh's TPN from 12 hours to 8 hours. Tonight will be the first night on that schedule. That will probably help with the massive night time wetting. Caleigh's been getting too much fluid at night with her TPN going.

I did take a lot of everyone's advice on the bed set up. I picked up some washable bed pads and they have been great so far. I also put a kotex in Caleigh's diaper and that helps quite a bit. We will also be getting diaper doublers sometime this month which will basically do the same thing. Caleigh's been sleeping better. Bed or incontinence supplies, she's sleeping better.

I've still been changing her diaper 3 times a night due to a nasty rash. Caleigh hasn't had a rash this bad in over a year so we've gone back to our old methods to try to make it better. It may be the antihistamine/decongestant that we started her on for allergies causing the rash. That's really the only 'new' thing added. Caleigh's laying next to me right now, bare tooshy and all, airing things out. Hopefully it will heal up sooner than later.
When we were at the GI doctor, Eric and I discussed the idea of Caleigh going to school in August. We really didn't show him our feelings, but really just put it out there for his thoughts. He talked through the risks and decided that Caleigh is at a fragile spot right now. Trying to get her off of TPN and having a central line is just too much for a school setting. With Caleigh being so isolated it would most likely not be a good situation. We can't have her picking everything up and suffering a big set back. He promised us anything we needed to get her set up at home.

So there we go. Our answer to the school decision. So now I need to find out exactly what I can fight for from the school district based on home bound education. Always a new adventure.
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