[tri-med] Re: Elanor in the hospital too!

It must be something that is going around because of the weather.  Annette has 
some of the ucky, gunky stuff, too.  Her co2 (carbon dioxide) levels have been 
high.  They are usually in the 50's and they went up to the 70's.  That's not 
as bad as they have been when she's sick but it's still too high.  Her 
pulmonologist increased her rate on her vent.  We went from 14 to 16 to 20.  It 
has helped.  She also got an anitbiotic because her tracheal aspirate had a 
"kiddy germ."  Her pulonologist said that it's a germ that gives kids sore 
throats, sinus infections, etc.  Well, Annette hasn't been doing too great on 
the antibiotic.  It seems to hurt her stomach and, of course, she has 
diarrhea.  She does seem to be doing much better.  Actually, I didn't think she 
looked that sick to start with.  I'm just glad we haven't had to go to the 
hospital.  That might change next week when we go to our first visist to a GI 
dr.  Annette's g-button has been
 bleeding a lot, and I mean a lot, from the stoma area.  She doesn't have any 
blood coming from inside her stomach.  When I pull back from her g-button, I 
only get stomach contents.  Has anybody had a problem with bleeding g-buttons.  
All the doctors say that g-buttons just bleed.  All the nurses and therapist 
say that they have never seen a kids g-button bleed as much as Annette's.  The 
area around the stoma sometimes pools with blood.  I put a 4x4 around it.  The 
stoma looks as if it never healed.  The skin is open and sometimes it has blood 
clots from all the blood coming up.  Some days are worse than others  Any 
feedback before our GI appt would be appreciated
Annette

--- On Sat, 3/28/09, Jennifer Vanderbeek <phil46@xxxxxxxxxxxx> wrote:
From: Jennifer Vanderbeek <phil46@xxxxxxxxxxxx>
Subject: [tri-med] Elanor in the hospital too!
To: tri-med@xxxxxxxxxxxxx
Date: Saturday, March 28, 2009, 11:41 AM

I thought I'd get in on the theme, too!  Elanor has been in the hospital
with a virus+bacterial pneumonia (that developed after we were there for a
day or two).  She is feeling much much better and should be coming home
today. However, we went in on the day we were supposed to travel to Salt
Lake City to have her VEPTR expanded.  She has grown so much, and the curve
of her spine has gotten so bad.  We were really looking forward to getting
her "stretched" so she could handle the usual spring cold that goes
around.
Apparently we were a little too late!  She would've been out sooner, but
they were concerned with her CO2 levels being a little too high.  She
chronically has high levels, but they are looking at giving her a backup
rate on her home vent to help with it.  Pray for our safe return home, and
we will be praying for the other kiddos on the list to get home too!  Now,
off to sanitize her room...  :)


Jennifer Vanderbeek
Boise, ID
Mom to Arwen, 11; Elanor, 9 (T18); caregiver to Joe, 29 (CP), and J.D., 27;
and wife to Andrew.



-----Original Message-----
From: tri-med-bounce@xxxxxxxxxxxxx [mailto:tri-med-bounce@xxxxxxxxxxxxx] On
Behalf Of Janet King
Sent: Friday, March 27, 2009 5:48 PM
To: tri-med@xxxxxxxxxxxxx
Subject: [tri-med] A Hannah in the hospital

Not our Hannah but one of her online "buddies" also name Hannah. She
has
been there since about the 12th dealing with other lung issues along with
fevers. A few days ago RSV was added to the mix. She has been slowly getting
worse and we are getting worried. I know her parents are too. Please pray
for them, that they get through this ok.
 

Janet King

Mom to Hannah - Trisomy 14 Mosaic Partial, CP, Scoliosis and a few other
things

 



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

No virus found in this incoming message.
Checked by AVG - www.avg.com 
Version: 8.5.278 / Virus Database: 270.11.31/2028 - Release Date: 03/28/09
07:16:00

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




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

Other related posts: