[tri-wings] Update On 16yr DD she coded....

Hi Everyone-  You can't imagine what has been going through my mind.  As 
most of you know I have a 16yr old DD with Spina Bifida who has a shunt 
in her head along with a few other major health issues.  Well on Tues I 
had left the hospital for a couple of hours to go home and 
do "home"stuff.  I left DD with a friend of mine sitting with her in her 
room.  She wasn't acting right and I never leave my kid's in the 
hospital w/o someone with them.

Well as I was getting off the elevator and walking down the hall I heard 
a code being called....I had a sick feeling and ran down the hall and it 
was my DAUGHTER. OH MY GOD.  I fell to my knees and cried for her NOT TO 
BE TAKEN. I screamed for the Blessed Mother to save her! For if it were 
GOD'S will to spare her life.

Everyday I wake I pray for God to use me to do his will and if he should 
he may have any/all of the children he has entrusted in my care.  OKAY SO 
I didn't mean it. :)  Like before Magdalena was born I have dreamt of 
Rebecca DD dying.  I dreamt it a couple of months ago. I told my closest 
friends and husband.  Since her admissions in to the hospital on 12-21-
04.  I had thought about this IS IT.  I wasn't prepared for it like it 
happened.  Are we ever?  I have yet to really cry.  I would love to get 
it all out but it won't come.  It's just sitting here bubbling up.

They were able to bring her back. My friend had noticed she wasn't 
breathing right and she made that  gurgling sound that we all have heard 
if you were with your child before they died.  She saved Rebecca. If she 
had been in the room by herself she would have been dead.  By the time 
the nurse would have checked on her it would have been to late.  They 
were able to draw spinal fluid off her shunt and she went to Peds ICU and 
waited for the Neurosurgeon to get her for emergency surg.  Normal head 
pressure is about 6-10 on the scale.  Her's was off the scale!!  When her 
head was opened spinal fluid shot out...it was off the charts well over 
30....the highest the Neurosurgeon has ever seen in his over 20yrs as a 
surgeon.  I couldn't believe it!!  Later in the halls I saw our 
Neurosurgeon and he said she would have died if nobody would have been in 
her room.....

The friend who was with her was present at Maggies birth and now 
this....she can't imagine what's next for us!!!!  Now she has a sense of 
humor but WOW!!!  She stayed with me until 3am and then went to work at 
7am.  That's a true friend!!!!

Yesterday Bec was transferred back to reg floor and is doing much better 
tonight.  She had spiked a fever of 103.3 after Tylenol.  So we were very 
worried.  She had a cough and we thought it was pneumonia.  It was a 
rough night and we didn't fall asleep until 7:30 this am.  Shoot I didn't 
get dressed until 2 o'clock this pm.  Tonight though after breathing 
treatments and antibiotics for bronchitis she's doing much better.  I was 
able to giver her a bath tonight and her color is better.  Although her 
shunt appears infected and we're giving her antibiotics for that we're 
just buying time until Mon when they will redo labs and make decisions 
about the next step.  It will be another surg on her shunt we were hoping 
to get her stronger again.

I went home the last night she was in ICU because I knew she was under 
constant watch and I had to tell the other children what happened.  they 
knew something was wrong and I wanted to tell them.

It was sooo hard watching them cry for there sister....

As soon as we get out of here I'm going to plan her funeral again.  I had 
it done once before when she was an infant and we were told she was going 
to die.  Well she's made it this far but I feel NOW I need to do it!!  
Then I know I will cry.....and get it all out!!!!!!!

The thing is a young man 17 yrs old died two weeks ago of the same thing 
that happened to my daughter.  He was at home and the family thought he 
had the flu.  Instead it was his shunt. Like Bec's it plugged and he 
didn't wake up.

I better get back upstairs.  She's on a moniter but it makes me 
nervous.  :)

Please keep up your prayers for our family.

God Bless- Dawn
Mother to Magdalena T-18 2-13-01 / 3-9-01  Mother to one more in heaven 
Michael Joseph and 5 living.  Wife to Stan.

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

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