[tri-med] Nicholas

Update:
Nicholas took a helicopter ride from Hope hospital to Peoria (Children's Hosp. 
of IL) since the surgeon at Hope thought it would be best to have his regular 
surgeon do the procedure.  (For some weird reason, Hope didn't have a pediatric 
surgeon on call, so one of the doctors we had been working with on the 
conference got us one.)  His spleen had twisted and no blood supply was getting 
to it and it died.  The bowel had also twisted so he had emergency surgery to 
take out the spleen and untwist the bowel on 7/22/06.  Luckily the bowel was 
of.key.  He also had a. coli in his urine. 

7/30/06

Nicholas got moved from ICU to intermediate.  He got the Foley catheter and the 
oxygen taken off...yeah!  He still has an NG tube for drainage because his 
bowels aren't quite working yet.   He has a central line in and has a couple 
bugs in his system (one coming from his sputum and one coming from a peripheral 
line) and is on two different antibiotics for those.  As soon as his bowels 
start moving, he can get the NG tube out and start slow feeds through his 
go-tube.   I just came home today for the first time to do laundry and pay some 
bills.  I saw some of the photos taken at the conference by the professional.  
The day we got our pictures taken was the day Nicholas wasn't feeling well and 
it shows....he has a bully look!  I guess I wouldn't be smiling either!  I 
didn't know he was that sick or we wouldn't have gone to the game that night.  
I felt so bad for him after we found out how sick he was.  I just thought he 
was catching a virus.  He was sleeping all day and wouldn't eat much by mouth, 
so I tube fed him several times on Friday.  Then Friday night he started 
moaning and pulling his legs up and I knew something was wrong because Nicholas 
doesn't usually moan or cry.  I tried to give him some water through the 
go-tube and bright fluorescent green bile came out.  O.K.....ER time.  They 
gave him morphine right away and put contrast through his g-tube and they took 
a CT scan and sent the images to Peoria.  His surgeon then o.k'd the flight 
there. 

Hope you all liked the conference this year!!   

Jayne - mom to Nicholas - T13 - 11 years old
Hudson IL

Human life is a gift from our Creator - and that gift 
should never be discarded, devalued, or put up for sale.

President George W. Bush


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

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