caring for trachs

[cariaad]

The issue of nursing was a very bitter one for us. We never got any. At first, they told us we couldn't come home without it. Then, when we fought and argued to get her home (after a LONG 5 month stay) without it it never materialized. We were given several different reasons ranging from we made too much money so we could afford to pay private nursing if we felt we needed it (ha! $25,000 that year...less now) to "taking care of a child with a trach is no big deal" (I could have strangled that one). My husband quit work to saty at home with her becasue I got a promotion while we were waiting to bring her home. I worked exhausting 9 to 13 hour days, ran home and slept for 3 to 4 hours, got up so he could sleep while I suctioned and checked alarms and fed etc. until 6 am when I got showered and went to work again. I learned to cat nap so I could hear her every sound so maybe you could add 2 hours of sleep to the other 3. We did it because we had no choice. And as time passed it did get better. She eventually needed little or no suctioning at night and then it was just feeding and checking moniter alarms. As soon as she would sleep thru the night (about 3 months after she came home) we moved her stuff into our room and I was able to sleep in bed all night (3 am feeding seemed to almost get done in a sleepwalk). And 2 months later we got her off O2 and apnea moniters so it got even better. I'm grateful we didn't have a vent to contend with, but the humidifier and O2 and apnea moniter were plenty overwhelming at first. My husband went back to work in Sept and I stay at home now. We have a gtube which now complicates things but all in all, I am glad we did it without help. Even when she's in the hospital ICU now I stay there awake all night because I can't make myself trust someone else to watch out for her as well as I do. And also, I know her so much better than a stranger. One ICU nurse wanted to suction every time she heard Alli rattle a little bit. She does this when she rolls around (all night) and it doesn't need to be suctioned. But, try to explain that! Argh. So I guess I would've been up all night even with nursing. The thing that bothers me is that those who TRULY need it--other kids, both working, vent etc can't get it. I think the system needs a shake up! Sorry so long!! Deb

When Morgan was trached we were told we couldn't go home without nursing care for her. Our insurance company would not cover this and we were really scared about bringing her home and not getting nursing. We ended up getting medicaid as a third party insurance because I was out of work. This covered our nursing and we got 20-25 hrs a week. Once I went back to work we were told we made to much money to be on any kind of medicaid for morgan. My social worker set me up to get the waver program for morgan but, we were told there would be atleast a 2-3 months lapse in her nursing care. We got lucky though. I have a wonderful social worker that goes to the end and back to help people out and she found that through medicaid we could get what was called a "spend down" this is were we would pay a month payment to medicaid for the percent that we were over and be able to still keep medicaid without a lapse in morgans care. We have to pay $18.96 a month and with our primary insurance and Medicaid we have gotten lucky. The amount we have to pay with the spend down is far better than waiting 2-3 months to be approved for the "Waiver Program." I heard sometimes people have to wait much longer than that but, I would rather pay a monthly "spend down" charge than not have the coverage for that time period. I still only get 20-25 hrs a week nursing and I have had the same nurse since my daughter was trached. She is like family but, sometimes 20-25 hrs isn't enough. I wish you luck and hope that things work out for you.

I was also told we could not go home with out nursing. A lot of nursing agency in this state don't even except Medicaid because they put the agency through the ringer and they don't pay very well. Well, I found out just what the agencies meant, when medicaid stopped my 24 hour nursing care on day 2 home. Â*The nursing company pull out for something that was not mine or my son or the nursing agency fault, Â*and left me at home alone with a very sick little boy,and no help. Childrens Hospital kept calling me and tell me to bring him back to the hospital, I got on the phone and called the Govennor of Alabama. I had waited 18 long months to have my son at home. Â*Well, Gov. Don Seigleman secretaries left a mesage at the medicaid commissioners office with in an hour my nursing service was reinstated.
Â*But after the first of this year I lost them again. After 3 years of haveing strangers and some crazy nuts in my house it been kind of nice, but I still could use the help.
Don't use wish you could steal one of those great nurses from the hospital that knew MORE than you, and new what to do?