15 Month Son with Tracheostomy & G-tube

Hi,
I am a Certified Master Practitioner of the Yuen Method of Chinese Energetics: A Non Touch form of Quantum Healing. If you want more info please go to http://www.yuenmethod.com/faqs.asp.
I would be honored to be of assistance.
Have a wonderful weekend.

I am so sorry to hear this. I was in the hospital when my daughter was 3 weeks old and stayed there for 9 weeks. It really did put a strain on the relationship. I would get out once in a while for a few hours. Just knowing my husband was there with my daughter made me feel that we would get through it all. He was with us every night and stayed in a family house near the hospital. Just being there for each other. I know and he knew that I would never leave my daughters side while she was in there. He would say that is what made him know that he picked the right wife. So we just made time for each other with her by our side. I am a religious person so pray and scriptures also really helped us. I think it really made us stronger.

Hi, I can say i've been there and still am. My daughter is 20 months and has had a trach and g-tube since she was 3 weeks old and is also my first child. And has been in and out of the hospital. It is a very difficult struggle but just keep strong. He needs a happy loving M.. If there's any specific questions i can answer just ask would love to help. Best wishes for you and your family.

My cousin was born with multiple problems due to stressful birth and lack of oxygen. He had a Trach and g-tube, was blind and couldn't walk or speak. I will ask my aunt and grandmother today (grandma had primary care tasks while my aunt worked). I will see what advice they have to offer you and get back to you tonight or tomorrow.

Contact "Parents Helping Parents" - http://php.com/
Are you getting any assistance from San Andreas Regional? You may ask your pediatrician about a referral. Regional will be able to put you in touch with developmental resources - and though it's been a while since any of my kids have had to use their services, they also helped to reimburse "respite" help or baby-sitting.
Good luck with everything!

Hello - my son was born with this trachea connected to the stomach rather than the esophagus. He had surgery to correct, had complications, was on ventilators, and had a GJ tube placed and now is on a G-tube currently and still working on feeding by mouth.
This is a very stressful time process to go through but you can do it and I am here to talk any time.
My son is currently 15 months as well and as of today is back in the hospital due to respiratory issues from being sick. Somehow we are strong and we get through and when he is home, he gives us lots of smiles and giggles and love.
What are you most in need of advice wise, support and guidance? I am here for you.
T. in Sacramento, CA.

Hi. It's so hard to have little ones with big issues. I have 6 kids, all adopted, all special needs. I don't have any that are trached and g-tube fed, but we deal with g-tube feedings, epilepsy (one with a progressive type so getting worse), mild CP, undiagnosed joint problem, undiagnosed genetic/metabolic disorder, migraine disorders, Downs Syndrome. So we have a lot going on too. My kids' ages range from 18 months to 14 y.o.

How to balance things is tough. Utilizing any respite you can get is imperative. I wish you were closer since there are some great churches locally that provide it for free on top of what Regional Center provides. Reaching out like this to find other parents that deal with special needs issues is huge too. Knowing you aren't the only one. Feeling like you live on the Island of Special Needs is hard to deal with (BTDT before with my kids). Taking time for you and your hubby after you son is asleep. Since going out is hard for us, we wait to eat dinner until our kids have gone to bed and then we have a "date" of dinner and music without kids (okay except for the alarm going off on the g-tube pump, etc.) We also plan at least twice a week of no TV after kids are in bed. It's our time to just sit and talk about anything. We have finally gotten to a point where we don't just talk about the kids.

I'm sure your son is getting early intervention services. They sometimes have a mental health person that you can talk with also. That person would also have ideas of what's in your area for support too. Your local family resource center could be of great help too. Here's the web site for all the FRC's. Just click on your county and find the one closest to you http://www.frcnca.org/directory.html.

I hope this helps. If you just need to talk, don't be afraid to write to me. I've dealt with the stress and strain of all of this for so long and have learned how to cope and thrive in spite of it all. I've had one kid stop breathing in my arms at only a week old, watched them bring the crash cart into the PICU for another one who they couldn't get re-intubated, and sat with my oldest as he laid in a coma for three days and done the re-hab with him for the past two years to try to gain back the losses which were huge.

Hi M.,

You have a continous battle to keep balance of a healthly relationship and motherhood before you, but it can be done. I have not experienced a trach, but my 9 year old son is g-tube feed, has quadriplegic cerebral palsy, numerous medical needs, chronic pulminology needs and completely dependent. We also have a typical 11 year old son. As a mom, I just wear many different hats. I have survived by getting into support groups to find other moms dealing with the same issues that have always offered incouragement and advice. It is a good support network that is just a phone call away. I also look to God to give me strength, I can only do what I do with Him. After nine years, I still very rarely get a full nights sleep, but I try to catch up when I can. And I always try to shower my kids with love like there is no tomorrow. I joke that I can give my special guy tons of loves, hugs and kisses whenever I want(see he can't get away from me). He even hugs back, laughs and giggles, that's what makes it all worth it.

Hi M.,
I have worked with children and parents in your situation. The only advice I can offer is take time for yourself and your husband together. There should be programs in your area that will take care of your child so you can have a break.

Good luck.
D.
Mom and Grandma
retired early childhood professional and teacher
CranioSacral Therapist

Hi,
I am a mother of a severely handicapped child (10 years old now)...I don't know where you live, but there is a fantastic program run by Children's Hospital Oakland called the Parent Infant Program that serves families like ours for children under 3years old. Through this program you can get support and guidance for you, your son and your family. You can find out more about the program from the Children's hospital web site..I wish you all the best

I don't have experience with a child with these issues but I was a critical care nurse at Stanford Hospital for 13 yeas before we moved here 5 yeas ago. I have a child with special needs, she has cerebral palsy, though extremely mild, and have gone through a lot with accepting that diagnosis. would be happy to talk anytime. K. ###-###-####.

Hi. I want to first tell you how sorry I am for your situation. I have two children with special needs and I know that it is difficult on so many levels. I hated when people would tell me to go out to dinner or a movie with my husband. How could I leave my children behind. How could I water the daisy's when my house was on fire. Well, when and if you are ready, take some time for yourself and your marriage, you will find support there before anywhere else.
Another source for you is the San Andreas Regional Center in Salinas. They will provide resources (money) to obtain childcare and/or respite care. It isn't perfect, but they are there for you. Also, call your school district for early intervention services. It seems that your child may also need Occupational therapy, speech therapy, or other interventions as he grows.
Good Luck to you, brave mom.
Jen Z

I was a Pediatric nurse for 6 years and am now a stay at home mom. I dealt with many kids with g-tubes and trach's. Some of the things we use to do in the hospital are: play soft music to calm them down, do little massages, and we would sing them songs. We would try to do a lot of touching. Hope this helps.

M. i'm an icu rn with two kids 17 and 10. your 15 mth old doesn't know any different in his life. what he is going thru is normal for him. but not for you and your family of course. have you thought about joining other babes, like a mom n baby gym class? just keep sani-wipes on you to keep his hands and face clean.(from germs flues and viruses)his social circle won't question much but the adults will have their questions and once satisfied your son should have some normalcy in his life socially for now. good luck with your angel A.