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Old 07-04-2006, 02:09 PM   #1
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we're still home...

We expected on Monday to be sent to the hospital out of state for a week or more (up to several months depending). I waited all day to find out our intake time and which ward exactly.

yesterday we got the call. The Immunologist and Pediatrician and Infectious Diseases DR and 3 Drs and the head of Pediatrics in Cleveland spent last week deciding things. My ped really really hates to put kids in hospitals. He really thinks it does long term emotional damage and that it scars and seperates families. Our Immunologist here is up in arms, she REALLY wanted Loch in cleveland clinic ASAP and is seething that the ped and ID Dr ok'd the delay. Anyway. Boils down to this: next step is an APPOINTMENT in Ohio with the Immunology Guru... he's done great research and has mighty impressive credentials and so on. So on the 12th at noon my fat baby and his even fatter chart will meet up with Melvin: Immunologist Extroidinaire

I am SO relieved to not be spending a week or more in Cleveland. I was already so stressed about the kids I was leaving here (Connor especially since when you wrench his routines too badly for too long he gets all sorts of autistic quirks popping out). Plus when we stay more than 2 days in a hospital we tend to catch things there!

We may still end up there. We may end up getting blood draws and whatevers done here at Childrens on Thurs/Fri this week to get info ready for the Ohio guy. He might put us in Rainbow Babies or CC the day we see him, he may ask us to come back. We don't know. But they all agreed if we don't put him in CC or Mayo right now then this our last hope before that.


Some friends and relatives disagree with this course of action. We have spent 17 months with an army of specialists trying "one last thing" and they want him practically dissected just to find out WHAT is wrong and HOW to deal with it. Personally I'm torn. I want the best for my baby, but I hate hospital stays and especially hate it when he's WELL- its easier to deal when your kid is gravely ill because you love the medical marvels then and would kiss the feet of every doc around for keeping him breathing one more minute- trust me. I think that IF Immunolgy is the key then this is the way to go. I agree that his immunological issues ARE the most pressing. Still, there are other things that will need to be dealt with and that may be part of it all somehow (plagiocephaly, torticollis, limb length discrepancy, visual delays, speech delays, hearing issues, malformed ear canal and toenails, cafe au lait spots possibly related to neurofibromatosis, seizures, possible tics, cystic hygroma/lymphangioma... just to name a few) but yeah the life-threatening bacterial infections take precedence... still I have trouble believing that all of those things are unrelated flukes y'know?
BUT I REALLY hated the thought of all the scary invasive tests they wanted to run on him so I'm hoping this guy really knows his stuff!
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Old 07-06-2006, 12:50 PM   #2
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Re: we're still home...

is this in the wrong forum?
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Old 07-06-2006, 01:02 PM   #3
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Re: we're still home...

wow Kim... sounds like you have some busy days ahead!

I think I agree with your pediatrician, hospitalizing kids is scary stuff. Espeically with your boys immune issues, staying anywhere near a hospital longer than neccesary seems a bit dangerous.

Besides, staying in a hospital for an indefinate amount of time is hell on your mental health. I think you will all be feeling better to be able come home to your own bed, or at least a hotel bed.

I am keeping my fingers crossed for you that this new guy has some answers no one else was able to come up with! I think its great though that all your drs are on the same page (well mostly) and talk to eachother to figure out the best course of action.

Keep us updated, I am hoping for you!
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Old 07-06-2006, 01:21 PM   #4
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Re: we're still home...

I don't know all the back ground to what going on, but it does sound like you are getting closer to some answers. Staying out of the hospital seems like it would be better to me. I really hope you are able to find out what is going on with you son. Sending you lots of & .
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Old 07-06-2006, 01:23 PM   #5
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Re: we're still home...

lots of mama - i hope the immunologist is what you guys have been looking for. that you can start moving forward on treatment.
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