[tri-med] still in the hospital

Morgan is still in the PICU in Jackson, MS.  On Tues. we almost made it out the 
door of the intensive care unit and onto the regular floor, almost.  He started 
having a bunch of seizures and 02 needs went way up again, so back into the 
ICU.  He was put back on bipap, didn't have to be intubated again.  The drs 
think maybe we just tried to make too many changes too fast and he just wasn't 
ready for it.  Now, they are being very conservative, not wanting to rush 
anything.  Morgan did have a very good day today.  He is alert and looking 
around and responding to Mike and I.  Everyday he make more forward progress.  
The dr. did say that they would try to get him off bipap again tomorrow.  

I guess Morgan is a bit of a celebrity here.  On Tues. when he was having 
seizures I asked the nurse to step in to the room and a someone from neurology 
just happened to be at the desk and said he would look in at him.  When he 
asked me what Morgan's underlying condition was and I told him trisomy 18, he 
said, "I heard there was a trisomy 18 in the hospital.  We hadn't been 
consulted so we didn't know where he was."  I guess the word is out!  I think 
the drs are working very hard at getting Morgan better because they see a kid 
with t18 who is 11 yrs.old and generally healthy must be getting good care at 
home.  They ( the drs. here) don't want to be the ones to jeopardize Morgan's 
health.  


?You have no right to argue with your Creator. You are
merely a clay pot shaped by a potter. 
The clay doesn?t ask, ?Why did 
you make me this way??? (Isaiah 45:9 CEV).



Holly ( Des Moines, IA) -- wife of Mike 
mom of Morgan (11 yrs. old) unbalanced translocation resulting in partial t18q 
and partial monosomy 9p 
dx'd with type 1 diabetes 03-17-08, enjoying the honeymoon--injecting levemir 
twice daily,novolog




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

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