20 Month Old with Trach and G-tube

Updated on March 13, 2011
J.A. asks from Sioux City, IA
5 answers

Hi! well as a single mom im having a stressful situation. I have a 20 month old daughter who was diagnosed with Pierre Robin Syndrome/Sequence, I have been dealing with this alone, and love my child greatly, she's a gift from god and has completely changed by life for the better.I am wanting to start school this year, but i have a lot in play with baby's hospitalizations, surgeries, and have recently broke up with her father, a relationship over 3 years. Really need some advice! This is a really hard situation to handle alone, not much family or friend support at all.and I know i need to be less stressed out, for myself and my baby, doing it is the hard part. Any advice, helps! Thanks! :)
ps. my question isnt really clear, so i will break it up to a few different ?'s
>4 those who have a special needs with a trach and gtube, what things helped u cope with all this?
>ways to get out and relieve stress?
> preety much what ever advice tht may help my situation, I know i need to take the first steps into bettering my life and future.
>
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So What Happened?

Well first of all i would really like to thanks all moms who responded!! U have been very helpful. My baby has a lot of hospitalization, surgerys and procedure. She is getting nursing at home and therapy. It's a difficult journey but i have faith we will eventually get the trach and g-tube out. As for me i just moved to sioux city but once settled i've decided on joining a support group and speak to a doctor about a concelor or psychiatris about this and other emotional issues . Thats to all, sometimes just a " U CAN DO IT" helps so much and to know i am not the only on out there. THANKS MOMS!

More Answers

P.M.

answers from Honolulu on

Wow, Jan, that is a lot to handle all on your own! I am not quite sure what your questions is. Are you wondering if you should go back to school? I would, in your situation, call the school and see if you can take a few online classes this year. That way you can still be home with her and can still get to the hospital for all her medical needs without missing tons of class and throwing your GPA into the ground.

Also, I would REALLY encourage you to find a local support group. Call your daughter's hospital and see if they have any support groups for parents of chronically ill children. Most of these groups let your bring your child with you to meetings if you don't have a sitter and you would be amazed at the amount of support parents can give one another. Good luck Momma!

2 moms found this helpful

C.W.

answers from Lynchburg on

Hi Jan-

My daughter had a trach from birth til 4.5 years old...and a g tube for nine years (she now is 14...and eats completely by mouth...YEAH!!!).

Do you get nursing care at least at night? I had to fight my insurance company to get it...but if she qualifies for medicaide, she would qualify for many waiver programs...

I am not familiar with your state, but private me if you want to chat...I know how stressful having a chronically/critically ill child can be...

Hugs to you and your daughter!
Michele/cat

***edited to add*

Just saw your 'clarification' post...And also did some reading on your daughter's ' syndrome...

The GREAT news is...the prognosis is WONDERFUL!!!

The hard part is...the 'here and now...

There is a site called 'circle of moms' that has a special needs section...my daughter has a congenital heart defect...so I have some contacts thru a congenital heart group...

There is an organization for 'rare' disorders...and your daughters issue is probably listed there...may give some good web sites...

Also...if there is a children's hospital in your area...(or better yet, a pediatric re hab hospital) you will find many parents who have similar issues (trach and g tube) for a VARIETY of reasons! The 'day to day' concerns are the same tho...

More hugs!!!
Michele/cat

2 moms found this helpful
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K.M.

answers from Kansas City on

Jan, I don't really have advice, but I just wanted to send you a ((HUG)). My son has a complex heart defect, so we've done the surgeries/extended hospital stays. He also had a NG tube for 8.5 months. The doctors wanted to do a G-tube, but I was confident we could get him off the tube (which we did!). Do you have anybody? Parents? Siblings? Can the baby's father be a good father w/o being a boyfriend/spouse/partner? Hang in there!! Does the hospital have a support group? Do you qualify for in-home nursing through the state? Asking for help is the first step!

1 mom found this helpful
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P.M.

answers from Portland on

I've never had to deal with ongoing medical issues like this, but I sympathize.

Many times support groups are organized through hosptitals. Ask! This might be a great source of moral support, friendship, and even occasional trades for child care!

1 mom found this helpful
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M.G.

answers from Chicago on

If you are on Facebook here is a group that may help you.
"Feeding Tube Awareness"
I have a friend that has a daughter with a feeding tube. This may give you some support.

1 mom found this helpful
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