Hello
It's seems like forever since I wrote my last update to you, but this is a
very good update to write.
On Jan 9, 2003 we got a call that Ravyn would be getting organs!! She did
very well through surgery and it went pretty good and it only lasted about
10 hours (which is really good for this surgery).
She received a stomach, liver, pancreas, small & part of the large
intestines. The donor couldn't of been any closer in size! We are so
blessed to have received such a gift, we do grieve for the family who lost
their little one, but we are so happy because Ravyn has a second chance!!
We are not going to be use to feeding her!
She is doing great, there are going to be a lot of steps to go up. She is
here and we pray that she will be for a long time!!
Her website (
http://www.helpsaveravyn.com ) will still be updated every week
with what is going on, we hope to put new pictures of her looking like a
normal baby and not our little bright banana!!
Oct 18, 2003
Hello
I wanted to give an update on how Ravyn is doing. Right now not to
good we were admitted into the UW Children's Hospital in Madison, WI on
Oct 8, 2003. She was running a high fever what they found is that her
liver is failing and there was fluid in her lungs because her liver is not
producing the vitamins it should so her cells are releasing fluid. They
know that there is already cirrhosis and she has had multiple infusions of
red blood cells, plasma, and platelets. Her body is kind of out of
whack. They gave her a transfer exchange which is when they put new fresh
blood through an IV and take out her blood out through her CVL. It helped
it brought her billi down from 26 to 16 and raised her platelets but
everything is creeping back to where they were.
She is at least more happier and we are finally getting some smiles and
even some giggles from her. her liver damage though is irreversible and
she needs a cluster transplant to save her. She needs small intestines,
liver, pancreas, and part of the colon. With her being so small we need a
donor that is older than a month but 13lbs or smaller, which isn't a huge
range but since she is in the PICU she is Status 1 in the national
transplant list.
So we are praying that she will be one of the lucky ones to receive an
organ, but it is so sad to know someone else has to die to save Ravyn.
God knows what is right and we believe that he will do what is right. We
don't want to lose her but the fact is that it is not up to us anymore.
The transplant team told us that she has about a 50/50 chance of receiving
an organ but the surgery will be much more difficult because of her size.
Please check out
www.helpsaveravyn.com and www.citizenol.com
for Oct 17, 2003 edition to see her front page story. All we
can do know is pray and be by her side!
The Rigoni's
Hello,
My name is Amber, and I am a mother of a 4 month old baby girl named Ravyn
and she has SBS.
To begin, my pregnancy, labor, and delivery ended up being completely
opposite than when I had my 2 year old son.
My water broke Easter night and I was immediately taken to Madison (WI) UW
Hospital, which is 50 miles from our home, because I was 7 weeks early.
Prior to this my husband and I found out through an ultrasound during my
7th month of pregnancy that our baby girl had what is called duodenal
atresia. This means that her stomach was not connected to her intestines.
The Doctors prepared us that she would need to be born there and that she
would also need surgery right after birth to fix the problem. They
reassured us that after the surgery, if everything went well, we could go
home about 2 weeks after the surgery.
Two days after my water broke I went into labor, everything was going as
normal until she stopped moving and her heart rate began to drop. Within
seconds the doctors and nurses rushed in and took me off to the operating
room for an emergency c-section. We were all scared to death!
Ravyn was born 11PM on April 22, 2003 at 4lbs 3ozs and was 17 inches long.
She was so beautiful!! Even though it was a rough delivery she had no
problems. She was brought up to the Special Care Nursery (SCN).
The next day we had her baptized before they took her into surgery. Now
the surgery was only suppose to take about 2 hrs. but 4 hrs later the
surgeon came into our room and explained why it took so long. When he went
in to fix the already known problem, he examined her intestines and found
that 3 different parts of them were dead-looking (small, very, very
skinny) He had to take those parts out and reconnect the good ones. He
also explained that to us that he didn't have a very good idea if what he
took was just small intestine or small and large, because where you can
tell where one ends and the other begins is the appendix, the problem is,
is that her appendix never formed, so their best guess is that she only
has at most 49% left. The other problem working against her was that we
were told that her intestines and bowel were shorter than normal to begin
with. So they diagnosed her with having SBS.
We were all very scared. The surgeon did not give her that much of a
chance for the future because he didn't know if her intestines would even
work. Also that she would be in the hospital for quit awhile.
We had to see her, and when we did she had so many tubes coming from her
and all the machined were overwhelming. She began having apnea spells,
which experiencing her turning blue just made our hearts sink.
In the coming weeks she slowly got better. She was receiving TPN through a
central line and they also placed a G-tube. About 2 1/2 weeks after her
surgery we were able to feed her her first bottle!!! It was only 5cc's,
but we didn't care at least it was something.
As time went on she really surprised the doctors and nurses with how well
she was doing. Of course we did have bumps in the road that set her back,
but she pulled through.
With my nose being into everything the nurses did and eventually taking
over her cares, they released her from the hospital June 19, 2003!!! Which
absolute surprised everyone, including us!! The reason we were able to
leave the hospital so early was that I was doing everything the nurses
were, so why keep us in the hospital when I could do everything at home
(also it would be cheaper than being in the hospital!). I t did mean that
we would have to travel back to Madison for doctors appointments once a
week, but we didn't care because she was home!!!!
It was hard at first, because of everything that needed to be done, plus
having a 2 yr old, but it works out. I did have to quit my job, but Hubby
likes to be able to work overtime.
Ravyn's feedings gradually went up. She was gaining weight slowly, but we
were all happy that she was gaining. She did become jaundice from the
affects of the TPN on her liver.
Everything was going pretty good until they noticed something abnormal in
her blood when they took her routine drawing of blood. They did a blood
culture of it and it turned positive for yeast and bacteria in her blood.
Right away we were admitted to Madison hospital on July 31st, 2003. The
next day she was taken to the PICU, because they found that her blood
culture grew 2 more infections and her body was reacting badly to the
antibiotics that they were giving her. The doctors don't exactly know
where everything was coming from, so they ran a bunch of tests. We all
found out many things. First of all her infections were coming from her
intestines, because of her having SBS her intestines were overproducing
bacteria which then would get into her blood stream. Second is that we all
got a good picture of how short everything actually is. They told us that
because of this she might never be able to be off of TPN. Thirdly where
her bile duct and pancreas duct connect to the intestine that part is
gone. So they know the bile duct is connected somewhere otherwise her
liver would be much worst. They don't know where and if the pancreas duct
connects. We are still waiting for the tests to come back from that.
We were finally able to come home again on Aug 15, 2003!! Ravyn has a lot
more medications to take and her feedings took a huge dip down. She can
take 20cc's of breast milk by bottle and 5 cc's of Pregestimil formula
through her G-tube that is feed to her continuously. Her GI specialist
does not want to raise her feedings until her stools decrease, but knowing
the circumstances it's going to take a while.
Ravyn's future is unknown, but we know that she is in God's hands and he
will do what is best. Right now we are enjoying every second with her, but
to be truthful no one knows how long anyone one has here, so we are
grateful for everyday.
Our hearts and prayers go out to everyone living with SBS.
Thanks for reading our daughter's story.
*NEW INFO. as of 8-19-03 Ravyn weights 9lbs 8ozs!!!!
