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Jul. 1, 2009
Not today
Gotta make this one short and to the point. Noah seems determined to keep us on our toes. In order to go home, he has to be fever-free for 24 hours, but he is popping one or two low-grade fevers every day. It's causing some concern here and the doctors have added another IV antibiotic to his regimen. No one is really sure why he's starting in with these fevers now *after* being on IV antibiotics when he didn't have fevers before. Leave it to Noah . . . .
He's also getting noticeably more tired and draggy each day. His hemoglobin is holding steady, so anemia isn't the problem. It could be that, thanks to his mito, his little body is just getting really weary from the constant infection - he's had this infection for weeks now. We've been told that it's not a problem to take him to the cookout/fireworks/etc. that we have planned for the 4th (assuming we are discharged!). He may sleep through a lot of it, but the doctors don't feel that the busy-ness of the day would cause a setback or anything.
He is still having drainage from around his line, so we are doing another set of cultures. If they come back still positive for MRSA, he will need to stay on antibiotics for longer than the current 2 week projection. Until his line looks better, we will need to do daily dressing changes.
I'm still dealing with this cough/tight chest, but I'm managing fine as long as I use an inhaler. I don't feel sick per se - just coughing and wheezing. I think allergies have a lot to do with it!
Noah has a relatively long break in his meds schedule tomorrow starting at about 3 PM - if he can stay fever-free until then, we get to go home! The break should be long enough to allow us to get home and get all of his meds/TPN delivered to the house before we have to hook him up again. Please join us in praying that this will work out smoothly if it is the Lord's will for Noah to go home tomorrow!!
Noah is having fun sitting in bed painting . . . maybe a bit too much fun, so I need to scoot.
Blessings,
Kate
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Posted by Anonymous 
Posted by 
Jul. 1, 2009 - Praying for discharge