[tri-med] Re: In the hospital... update

The results of Hannah's MRI are in but so far there is no one to read them 
properly for us. The floor PCA was going to try and collar a neurologist to 
explain them but so far we haven't heard. The doc who ordered it is on 
vacation until next week. Preliminary info is that there is decreased white 
matter. Ok...  so what does that MEAN?????????  Anyone else been told this? 
I've looked up white matter but only get a short paragraph and nothing that 
tells me what ramifications there are from "decreased white matter."

Second blood test came back fine. So the first sample was contaminated. IV 
is out. She is back on Neocate One at 30 cals an ounce and 25 cc an hour. 
They are working her up to 30 cc an hour (continuous.) We had a very small 
episode yesterday afternoon and a much larger one (stuff came out both ends 
AND the vent tube!)  this afternoon. Hopefully the Zantac will help and it 
will kick in soon. Her feeding tube worked it's way our earlier today. I 
think maybe it happened while Respitory was working with her. PT and OT had 
been in before them. She fell asleep and a bit later I heard something fall 
on the floor. I looked over and it was her feeding tube, which had been 
TAPED!! So somehow it had worked loose. I checked her and there is no 
telling how long it had been feeding the bed. We had to change everything! 
Her vomiting episode was about 30 minutes after that and we had to change 
it again. I tell ya... first chore I'm teaching this little lady to do is 
LAUNDRY!

I'm heading back to the hospital now. I'll stay again tonight and Donn will 
stay tomorrow night if needed. From what the doctors are saying we may go 
home tomorrow or Sunday. (not that we haven't any more answers to what is 
going on.)

I have filled out the papers on the Cascade braces so maybe we can get them 
working in the pipeline. Still don't know who is doing the Hensinger yet. 
Hopefully they will be able to find out on Monday.


Janet and Donnell King in East Tennessee
Parents of Hannah Emily - 5-6-03 - Trisomy 14 Mosaic Partial - almost 
fifteen months old!!!
Also Amanda, 21, Jon, 18, Zach, 15, and Caty, 12, who are all just as special.

for updates on the family, including news on Hannah Emily, go to 
http://kinglynews.blogspot.com
(latest update June 18th)  

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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