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Old 06-12-2006, 07:44 PM   #1
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geckoed
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Join Date: Apr 2006
Location: Michigan
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stressed, sick baby

DS is 16.5 months old and ALWAYS sick. Anyone else coping with this? I HATE antibiotics, yet our current record is 17 days without them. In his enitire life Loch has only gone 17 days without an antibiotic.
He grew ANOTHER weird bacteria this week (pseudomonas pneumonia, but its also culturing in his throat and stool). The Drs are, as usual, baffled. His labs warrant another two week hospital stay for IV antibiotics, but every time we hospitalize him he catches a hospital-grade infection while he's there. So we do IV abx in the office, and in shots, and he takes abx only available in tablets, as well as the pediatric oral doses. His chart has been reviewed by dozens of Drs and nobody has any answers. We run from crisis to crisis and its hard and scary and frustrating. He's got signs of sepsis again (will be a 4th round of sepsis if it IS sepsis again) he's got petechiae, purpura, 12 days of fever, etc. I mean, he's been WAY WAY WAY sicker- but its still scary.My older kids are such great kids. We'll say something like "well, I think we aren't going to make it to the library today" and they say, with nothing but concern, "is Lochie sick again?" They handle it really well- but it all adds up you know? The baby already knows how to open wide for a throat culture and has had way too many blood draws, IV's, spinal taps, etc. His "best friends" are the nurses and his favorite Drs- he smiles for them and waves to them and runs at them- things he won't do for most of the relatives- but of course he spends way more time with his nurses than with his grandmas etc. In the next week we have an appointment with Infectious Diseases (and that Dr has had a team review the case at Childrens to get ready for us), and we have a 3 hour block set aside for us with Immunology, and we see the Orthopedic surgeon for some measurements and hopefully some answers on his limb-length discrepancy.
My family is really not helpful in any of this, in fact they tend to do more harm than good (my son was born with a cystic hygroma/lymphangioma- a lump of lymph tissue in his neck. As soon as my mom saw him for the first time she said "I'd never bring a baby like that home from the hospital! I mean you can SEE there's something wrong with him, you know thats just the tip of the iceburg" so EVERY illness/issue since then has been fuel for her fire KWIM?). Filling out new patient forms on him is a nightmare- they leave about 2 lines for prior hospitalizations and after I check off 15 boxes I still have to write in another dozen things in the "other" slot. I REALLY want them to find the one "main" thing so we can work on that. There just has to be something connecting all his mysterious symptoms. Anyway, I'm just.... banging my head and wishing I had some answers and feeling bad for my jolly little boy as I get ready to stuff 4 medicines in him to get ready for bed... and feeling "alone" in all this I guess.
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Kim, mom of 5
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