[tri-med] Zion Lint Update 9-26-06

Hello!

Here is the latest update on Zion Lint...

Angel blessing to all,

Dana
Auntie to Noah Thomas Campbell
Partial Trisomy of 2p+
October 10, 2000 - May 14, 2001
---------------------------------------------------------
Dana Tehako-Esser
President & Chief Executive Officer
Noah's Never Ending Rainbow
7737 6th Avenue
Kenosha, Wisconsin 53143
Phone/  262.605.3690
Business E-mail/  dana@xxxxxxxxxxxxxxxxxxxxxxxxxxx
Personal E-mail/  coreydana@xxxxxxxxxxx
Website/  www.noahsneverendingrainbow.org
_______________________________________
From: Family4RMH@xxxxxxx [mailto:Family4RMH@xxxxxxx]=20
Sent: Tuesday, September 26, 2006 6:27 PM
To: coreydana@xxxxxxxxxxx
Cc: therese@xxxxxxxxxxxxxxxxxxxxxxx
Subject: Re: Zion Lint - Special Messages

Dana,

These messages are so sweet--it brings tears to my eyes to see how many
special people care for my baby.=A0 No, actually it brings a flood of =
tears.=A0=A0
I have sent a couple of updates in the last few days, not sure if they =
went
through or not.=A0 No one responded to the info in them, so I am =
assuming you
didn't get them.=20
I know you received the one about how Zion had to be in a drug-induced =
koma
for 24 hours.=A0 They let the drugs wear off and he woke up on Friday
afternoon.=A0 He was much calmer.=A0 And he was in a pretty good mood, =
so I
think all the pain meds he was on was helping.=A0=A0 Then that evening =
when the
dr came around to change the dressings, he noticed there was already
infection draining out.=A0=A0 So, once again the incision had to be =
reopened and
drained.=A0 They were pleased because it was mostly old blood and little
infection.=A0 So on Saturday, his white blood cell count came down some =
and
his fevers were down a little.=A0 He had a pretty good day.=A0 Then on =
Sunday,
he was in an awesome mood.=A0=A0 He was laughing and so happy.=A0 He =
listened to
his music and played with his toys and laughed.=A0 That evening, Jamie =
noticed
he had a messy diaper and I stepped out to get some more diapers from =
the
nurses.=A0 When I came in the room,=A0 Jamie had taken his blanket =
off=A0 to
change him and there was poop everywhere.=A0 So then I stepped out to =
get some
clean sheets and blankets.=A0 When I came in the room Jamie was crying =
and
wringing his hands and saying "this is not good--this is so bad."=A0 I =
laughed
and told him it was no big deal--we would get the nurse to help change =
his
bed.=A0=A0 He said "No, I don't mean that.=A0 I unfastened his diaper =
and there
was nothing in it.=A0 The poop did not come out his butt."=A0=A0 The =
poop had came
out of his surgical incision where it had been reopened and drained.=A0 =
Even
the nurse started crying and saying that this is really bad.=A0 They =
called
the dr in and he said that he is sorry and that there is nothing they =
can
do.=A0 So we spent all that night crying and telling him bye.=A0 He had =
a bad
night.=A0 His breathing was bad and his fever went really high again.=A0 =
On
Monday morning, the PICU Dr=A0 told us we could go ahead and take him =
home.=A0
The surgeon came in during the=A0 conversation with the PICU dr and said =
that
Zion's colon had a bad place on it and that he noticed it during=A0 =
surgery.=A0
He thinks that the "bad place" turned into a hole and the waste material =
was
coming out the hole in the colon and finding its way to the incision =
site
and coming out.=A0 The problem is what is not coming out the incision =
site is
leaking into his body and will soon poison his body.=A0 There really =
isn't an
answer, not even a suregery.=A0 The only ray of hope is that the surgeon =
said
that if most of the waste found its way out of the body, then he might =
not
get sick from it.=A0 But now we can't feed him through the j-tube or the =
colon
will keep leaking poop into his body.=A0 So they put him back on TPNs
yesterday and told us we can take him home on them.=A0=A0 So we are back =
to
there is=A0 nothing we can do, but I can't starve him.=A0 So we=A0 are =
taking him
home tomorrow on TPNs.=A0 We have to wait till tomorrow because it took =
that
long to set it up to get TPNs delivered to our house.=A0 Without food =
going
through his intestines, there will be very little waste products.=A0 =
They put
a colostomy bag over the incision site to catch the poop, and we have to
empty it.=A0 But that really isn't any worse than a dirty diaper.=A0 The =
surgeon
said that sometimes colons will heal themselves.=A0 When 2 weeks is up, =
we
will put him back on formula and hope the hole in the colon is healed up =
by
then.=A0 If so, then things should be okay.=A0 If not, then we will feed =
him
formula and use the bag over the incision site as a colostomy bag and =
just
hope and pray that none of the poop is leaking into his body, but there =
is
little chance that it will ALL come out the site.=A0 What leaks out will
contaminate him.=A0 So we are waiting for 2 weeks to give the colon a =
chance
to heal.=A0 Zion does not heal well, so it will take a miracle from God, =
but
God has given Zion lots of miralcles before and I have no reason to =
think
that he won't this time.=A0 Zion's lungs are in bad shape, too.=A0 He is =
off the
C-pap but is on oxygen.=A0 So we will go home tomorrow on oxygen, TPNs =
and
with a colostomy bag and will wait and see what happens.=A0 His white =
blood
cell count was down yesterday but they didn't check it today.=A0 He =
doesn't
look that bad.=A0 He is alert and playing a little.=A0 He was able to =
get up
today and go outside in his wheelchair for about 15 minutes.=A0 He is =
very
swolen.=A0 He is huge.=A0 He came in here weighing 41 pounds and 2 days =
ago he
weighed 55 pounds.=A0 So you can imagine what 14 pounds of fluid makes =
him
look like. They said that it will gradually go away. But other than the
swelling, his color is good and he hasn't cried any after this =
surgery.=A0 He
hasn't appeared to be in any pain whatsoever.=A0=A0 If it is meant for =
Zion to
go, then I pray he will not suffer.=A0 He is going home with IV access =
and an
order for morphine as needed.=A0 I will check my messages before we =
leave the
RMHouse tomorrow, and then I won't be able to check until I get my =
computer
fixed at home.=A0 Thank you all so much for the many lovely =
messages--they
kept me going. I would come straight to the computer room as soon as I =
got
here to check them.=A0 Thanks for the many prayers--keep them coming.=A0 =
And
thank you a bunch Dana.=20

Kristie Lint

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

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