[tri-med] Annette and stoma.

Well I'm no expert, but I would think that she has an area outside 
the stoma,  that may have been irritated from stomach contents 
leaking. Also, does she try to pull at the stoma at all? Tess's stoma 
area is now nicely healed, but she tries to pull it out any chance 
she gets. Makes nappy changes and even feeding a challenge sometimes, 
as you need two sets of hands to control those pesky little fingers. 
I understand that Tess recently had her balloon and stoma changed for 
a slightly larger one, which fits better.

At 10:49 PM 30/03/2009, you wrote:
>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
>
>
>
>No virus found in this incoming message.
>Checked by AVG - www.avg.com
>Version: 8.0.238 / Virus Database: 270.11.33/2031 - Release Date: 
>03/30/09 17:56:00



Jocelyn,  wife to Frank,  Mother to Ian, Gillian and Susan, Nanna to 
Carly 21  Mathew 20,  Ashleigh 19, Alex 17,  and Tess  (Trisomy 18,) 
age 12 yrs,  & Benny the Maltese, plus one amazing DIL and two 
amusing SIL's of whom I'm very fond, and their extended family who 
are too many to list here.   

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

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