Baby's with Tracheostomies

I am very happy to hear that your son is home with you. Hospitals can be quite a drag. After reading this I spoke with my mother, I have a handicapped brother who has a severe form of Cerbral Palsy. I ask her how she handled the financial end of it since we didn't really have much money growing up. She said definately check into state programs, such as state issued insurance policies. Most children qualify for them and they do usually offer better care for situations like yours. Try putting a call into some local offices even try HUSKY they might be able to steer you in the right direction. Good luck to you and your family. I hope everything works out for you.

Hey K.,

Wow - its not often you see other moms with children who have a tracheostomy. My son is 10 months old and had his tracheostomy when he was about a month old. His issue - Vocal Cord Paralysis. The doctors at first wanted to give Clinton a feeding tube and my husband and I fought it and won! He wasnt eating well in the beginning which is understandable condidering he has this foreign object in his throat. However, today, he eats just fine and had adapted well to the trach. In regard to your nursing issues. I dont know if anyone told you but Medicaid offers a program for children who have been in a hopital for 30 days or more (within 90 days) - The name of the program is Care at Home and you may qualify for this program which will provide nursing care. You may not get coverage for all the hours that you need but some help is better than no help. I know what its like not to sleep at night. My husband and I, in the beginning, used to take turns staying up at night when we didnt have a nurse. Now that he is a littel older he has a Pacimuir valve which minimizes his suctioning. We went from suctioning every 15-20 mins to almost no suctioning at all. Maybe 1x per day. You may want to look into this too! I can go on forever and Im sure I can only fit so much on this website. Please feel free to contact me ____@____.com and I can give you some help on the insurance issues (which can be overwhelming) and maybe we can swap ideas.
L.
PS - as I was about to send I see this is dated 2006 - how are things today? still the same?

your son should qualify for SSI which automatically quilifies him for medical help plus an extra paycheck from government to help with expenses..happy nbday to the little guy

Has your son been referred to an Early Intervention Program? I worked for an EI when I was in Alaska and they provided quite a number of services to families with medically fragile children. I'm not sure how it works here in RI, but I'm assuming that they're similiar. They can help provide for services such as respite care so you can have some time for other things in your life. I would suggest you get a hold of the early intervention program for Rhode Island, and see if your son is eligible, and work with them if he does. They also provide a lot of support for parents, as well as the child.

there is a great support group in Ma called kids with tubes. I belonged till my son was 3 and had his gtube removed. you should get some help there. good luck. L.

K., I know you posted this a while ago but I wanted to tell you that my son was at BCH for 9mos in 2001. He was trached and g-tubed for severe BPD, He has been decannulated since 2003. Is 5.7 years old and currently has developmental delays and sensory issues.

We had nursing 16hr/day. Do you have Mass Health? Another site you want to check out www.tracheostomy.com (if you haven't found it already) you will find lots of support from some great mom's there

hi K., i also have a kido thats trached, mickey. my son has severe brain damage from birth, cerebral palsy, & many other issues. what state do u live in? we go to bos childrens a lot too. they saved my lil cameron so many times. well take care. luv always C.