[tri-wings] Re: Hi I just joined~long!

 
Hi Stacy, 

How very sad. It is terrible when they won't give your child a chance. Do
youknow that before they had genetics test they were unable to "label" these
kids in the same way. So, they treated them for their problems medically and
surgically. And guess what? The average survival rates were longer, long ago
then now! So, you can just imagine if they made an effort now, with the more
modern technology and surgical tecniques. 

I have found my daughters medical care to be a huge stumbling block to my
ability to move forward with my grief. IN her case, the negligence meant a
great deal of suffering in the last 24 hours, so I would not even say they
gave her palliative (instead of agressive) treatment, because the word
palliative implies a measure of comfort. There was none. They wanted to get
her out of the precious ICU as quickly as possible. I hear hints of that in
your story also. 

It is a very sad world that we live in. They start with trisomy kids, I
wonder who is next? 

Elderly people who don't have their total wits about them are in true danger
if they require any life saving treatment extending beyond simple
medication,I believe. 

I hope being part of this group provides you with an compassionate ear in
which to voice your sorrow. 

Barb


----------------------------------------------------------------------------
From:  BADABOONES@xxxxxxxxxxxxx
Reply-To:  tri-wings@xxxxxxxxxxxxx
To:  tri-wings@xxxxxxxxxxxxx
Subject:  [tri-wings] Re: Hi I just joined~long!
Date:  Wed, 22 Feb 2006 19:44:13 EST
Hi Barb,
I too am sorry for your loss. Thank you for your reply. I'll try to sum up
Jamin's story as short as I can its pretty long.

Jamin was born with bilateral cleft lip and palate, 1 dilated kidney, and we
later found out Tetralogy of fallot (a heart condition). We did not have a
good experience with the doctors at all. As soon as he was born (I was with
my
sister during labor and delivery) the nurse took him over to the warmer then
came back only a few seconds later to say well Tiffany he took his first
breath
and cried but it looks like that is all he is going to do. We all started to
cry but then we heard him crying and my sister said that's bull he is crying
so
I went to him and sure enough he was crying,moving,and fighting. I told the
nurse he is fighting then I ran to my sister and told her that's when the
nurse
came back to tell Tiffany that he was having trouble breathing and did she
want to help him with some oxygen? My sister had already explained over and
over
before he was born what she wanted done! Yes, she wanted him to have what
any
normal baby would get!! We had to give him blow by oxygen but he was
requiring
less and less. My sister wanted him to go to the NICU where he could be
monitored. They asked her if she wanted him fed she got furious she said of
coarse
I want him fed I told you to treat him like any other baby like he doesn't
have Trisomy 13! To sum it up my sister had this constantly so she continued
to
stress she does not want to hear what the percentages were that it was all
in
God's hands not theirs or hers and she wanted to keep him alive and not live
everyday waiting for him to die. He left the hospital at 3 days old like any
other baby and off of oxygen his levels were good but she had to beg to take
home
monitors and oxygen for just in case. They wanted to know why like she was
crazy she said because if he stops breathing I want to know and if he needs
a
little ox to get his levels up I want to do that too just like a normal baby
would get that was having a little trouble breathing.
After Jamin came home he was doing really good his breathing was better. He
ate,slept,pooped,peed,looked around, heard noises, and smiled like any other
baby. He was strong! He drank a bottle despite his bilateral cleft. Then he
had
a couple of episodes where he quit breathing. Tiffany gave him ox and called
911.
  When it really turned bad was 2 days before he died my sister said  he was
having a lot of trouble breathing we thought it was his heart because the
ped
cardiologist had been giving her a run around. Then Jamin had another
episode
of central apnea and my sis couldn't get him breathing on her own the
ambulance
came and got his ox level from 8 to 40 in no time. The hospital said the
difficulty breathing was either RSV or pneumonia. They were running tests
and
treating with antibiotics. Then he had another episode of central apnea but
this
time his heart stopped. My sister was holding him I had just left the
hospital
thinking he was doing so much better they had just moved him out of ICU into
a
regular room. The hospital called me and told me to come back my sister
needed me but they wouldn't tell me what happened. It was awful! I have 3
kids of
my own my youngest is 3 months older than Jamin. I had high hopes that they
would grow up together. I still see his cute little face in my head. I keep
seeing him looking up at me when I kissed him the last time before I left
the
hospital. This is soo hard for me I couldn't imagine how hard it is on my
sister. I
loved him like my own and the smallest thought of losing one of my kids
sends
me into an awful whirlwind of pain so I don't think I could handle it. I
don't know if we will ever get over this but we will try to just take it day
by
day and hope God will give us the strength to just think of the good that
came
from this....We did get to meet Jamin and love on him for 5 weeks and now he
is
in Heaven where there is not pain,poverty,crime, and all is innocent. One
day
I believe we will meet again! Like my daughter said at his funeral Jamin is
now free to be whatever he wants to be!

Stacy


                   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: