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
Grateful thorns have roses
24 weeker now almost 11 years old and in third grade!
trach-decanned for good in 2008, gtube, asthma, CP, MR, GERD, latex allergy, osteopenia, aplastic cerebellum, ADHD/OCD, 60 lbs of humor and fiest, 4'4" tall, patient at Shreveport Shriners Childrens Hospital,, and I may be leaving something out but she is happy and growing and the light of our lives! DECANNED 6-17-08