New please help me

Short Bowel Syndrome
#1

Im not really sure what questions to ask here or if there is anyone to even listen.
I feel so out of the loop on everything it seems all you guys know more than i do, maybe i am not asking the dr’s the right questions?

So now ive confused you all let me tell you about Gabe…

He was born on the 15th Oct 2007 11 weeks early and weighing in at a whooping 770g.

At 3 weeks of age he developed NEC and we were told to prepare ourselves as he may not make 24 hours. At 2 am the following morning (9hrs later) he was taken into surgery and had some of his small bowel taken (there words were he cant afford to lose anymore). This could be a long story so ill try to cut it down.

He has had 2 surgeries since and is doing ok. They took him off PNS about 3 weeks ago only to put him back on it today as since he was put onto 2 hourly feeds he has been losing weight (around 50g a night)

Gabe will be 18 weeks old on monday and has not yet left the hospital.

Im in Australia so I’m not sure about what Omegaven is and everyone is raving about the stuff, als intestine transplant? Dr’s told us early on that there is no such thing.

What questions should i be asking? I have know idea on his billiruben levels, i know i have asked about what sections of the bowel were lost but keep forgetting so i will need to write all that down.
At what stage in treatment did you all get to go home?

Sorry for all the questions im just very confused right now after reading other peoples stories and how they all know and i know the basics but not the knowledge you guys have.

And to be honest i just want to go home, ive been living 4 hours away from my hubby and kids for 18 weeks when will it all end and i get o take my boy home?

#3

Hi my name is Kelly and my daughter was born with SBS.

She was in the hospital for 4 months and I can say it was the longest of my life. I have 2 other children and it was hard on our family. Like you my story is crazy. I gave birth while on business in another state without my husband and they immediately took her into surgery. After that we were told it did not look good and that we would have to be in the NICU for a while. So after two weeks of being in another state we were transported by airplane back to Nashville to Vanderbilt hospital for the next 3 1/2 months. I unfortunately know what you are going through all to well. BUT let me say this be as aggressive as you can if that means contacting doctors in the States that what you need to do.

The doctors in VA told us one thing and the doctors here said something completely different. Katie was on TPN and Lipids until she was 15 months. Her weight has always been and issue. She still has a feeding tube but does eat by mouth. She is now 22 months and finally on her way. I know it is hard sometimes and things go great and then bad but he will come through. You must be proactive and this web site has been wonderful for providing names and places to get info from. Please know I was in your shoes not to long ago and it does get better.

I have to believe God has a special plan for Katie just like he does for your son we just have to be open to see it. If I can help in anyway please let me know. My surgeon is nothing short of awesome and I am sure he would look at your case- He trained in Boston and is on the cutting edge of the research for SBS. Because of him doing and experimental surgery STEP on Katie she is here today. His name is Edmond Yang-General Pediatrics at Vanderbilt Children’s hospital. You are doing great!!!

Kelly— jodes26

#4

Thank you for your reply problem im seeing is there are so many differences between the USA and Australia. Ive had to come home for a funeral (which is hard cos i have never been away from Gabriel this long before) but will go back on tuesday morning. They started him back on PNS yesterday afternoon and his weight stayed the same overnight. How do you go with the lines at home? is it through long line or a port?
Thanks
Jodes

#5

Jodes,

I hope this finds you having a better day!! Katie
came home with a central line and a g-tube. She would
not eat by mouth so we had to have her eat by feeding
tube. When your son gets bigger there is a great pump
that they can carry themselves in a backpack. It is a
Zerex Infinity Pump. It is really small and they are
able to walk, run ect… With our central line she
was on it 16 hours a day until she was 15 months. It
went directly into her blood stream. I will say we
were in and out of the hospital with infection at
least 5 times until they took it out. It did help her
keep her weight up and the feed tube helped to. She
still has the feeding tube because she can not fully
aborb everything she eats so her weight will drop
without some help.

I know it is hard to leave him at the hospital. I was
unable to stay through the night because I had other
children that needed me. So I would rotate with my
husband throughout the day. We had great nurses that
knew her and would call us at a drop of a hat.

You said you have other children. What are their
ages. Mine are 3 and 7. So unfortunately the 7 year
old understood what was going on but my 3 year old was
fine with everything. Talk to you soon. Your family
is in my prayers.

Kelly

#6

My girls are 7 (nearly 8 lol) and 9 they do understand, but it gets tough sometimes with daddy doing everything at home and mummy being so far away with Gabe.
Sometimes i just want to scream and tell them to send him home or at least to our local hospital but i know he is in the best place.

#7

If I got a dollar for everytime my kids asked when
Katie was coming home I would be rich. I know it is
hard but it does get easier. I was there not so long
ago and I did scream at the doctors, nurses, my
husband and myself. Believe me they understand.
Stress will take you over if you don’t find a release.
What hospital is Gabe at? Are you staying there
everyday and night? How old is Gabe? Like I said we
did not get out of the hospital until Katie was 4 1/2
months and even then we went back with an infection a
week later. I know it is hard and no one can say
anything that will take the worry/stress that you hold
inside away. If your husband is like mine he is not
only worried about Gabe but really worried about you.
So when you can give him a break he is having a hard
time too. I wish someone would have told me that- We
do our best as moms and that sometimes does not feel
like enough but it really is!!!

Kelly

#8

Gabriel is 18 weeks old today (7 weeks corrected) im pretty much living in Adelaide while hubby and the girls live 4 hours away at home. I dont spend all day and night at the hospital that would do my head in, im on call if he is demanding a bottle (cos i feel like mum if i get to feed him) i go up in the morning for bottle and bath routine and cuddles, then i have early afternoon for play time and cuddles, late afternoon/night for story time and cuddles (i get lots of cuddles in and when its not me he suckers the nurses in lol) then any other time they call me for a feed. That routine kinda fits it would be better to have him living under the same roof as me, i would have thought i would have been able to show more patience considering we niearly lost him but i will admit it has never been a strong point of mine

#9

Isn’t it funny how patience is definitely a virtue!!!
No matter what has happen your kids can drive you
crazy !!! Even if you are the best mom in the world.
So do you stay at families or does the hospital have a
room for you? We stayed at a Ronald McDonald house
for two weeks. It is a house that usually is located
by the hospital for people that want to stay with
their children. For us it was a god sent. Do you
have anyone there that can help you-like brothers or
sisters. I am one of 6. I have 3 sisters and 2
brothers and they were able to help a little. No one
lives in the same town or even the same state so it
was all on me (us). But if you can get some help try
even if it is for a few hours.

While Katie was in the hospital I tried to learn all I
could about her tubes and how to clean them(I have a
College Degree in Business so nursing is way out of my
league), because when you do take him home it is all
YOU!! And it is a huge responsibility. That is when
patience with him and especially your husband comes
into play!!! Take care and take a walk to detox from
the situation even if it is for 10 minutes. Always
remember you are not alone there are many parents out
there struggling with this life changing situation.
Give Gabriel a hug for me and enjoy him-he is
precious!!!

#10

Kelly,

How much bowel did your daughter have? It is so great to hear that she
was able to get her central line removed. I am praying that one day it
will happen for us.

Paige

www.cotaforzacharys.com

#11

Before the STEP surgery she had 26cm and after she had 76. So it was well worth it for us. She is 22months and still has feeding tube but we are trying to get down to 10 hours at night. Once that central line came out after 15 months of having it she did great no infections and knock on wood no more visit to hospital. You are in my prayers.

Kelly

#12

Hi there, hope things are going better for you. There is a website where parents contribute their stories regarding our short-gut children. It also explains how to get Omegaven. Through Yahoo search type short gut wiki, click on the link grey.colorado.edu/shortgut.

We helped a family in NORWAY get Omegaven. They did get on, but the doctors in Norway didn’t know what they were doing. So I told the mom to have her doctors e-mail Dr. Puder for the protocol (dosing, etc.). They are now following it. All this info can be found on that website.

Our son lost all but 29cm of small intestine in Oct 2006. He had the bianchi procedure to lengthen his bowel. We considered the STEP but knew the Bianchi procedure could not be done after a STEP.

Thankfully, after they opened him up, they saw he was a candidate for the Bianchi. Our surgeon said they can’t truly know if the Bianchi would work until he was on the operating table. We were trying to give our son all options before a transplant.

Our sons website is www.caringbridge.org/visit/ryannagy. I hope this info helps. I definitely can empathize with you. We were 2 1/2 hrs away from our 7 and 9yr old. from Oct-Dec(central line/ng tube) and then Feb-May(after the Bianchi, with central line and NJ tube). We were traveling to the hospital for the Bianchi when we were in a car accident. That slowed his recovery time with his injuries.

Take care,
Katrina

#14

Hi Katrina,
Please message me on my profile – I would like to know more about how the bianchi is working.

Paige
www.cotaforzacharys.com