Nursing

[cwpeichel]

Could you please categorize your situation into one
of the 7 categories. Thanks.

[trach mom]

Never had a nurse. We do not qualify. We have a visiting Resp Therapist, but she only came 5 times.

[cariaad]

we supposedly qualified but it never materialized. We get once weekly visits of 1 hour by Eartly Intervention nurse to check weight, lungs etc. Deb

[Brandon & Angel]

Angel has her "At home Nurse" with her even when in the Hospital......

She gets 8 hours a day and I pay for 25% of it out of our pocket

B

[p's mom]

Parker has 20 hours a week of nursing. We do 2 nights. 10 hours a night. We only have Cap-c , a form of medicaid and that's all he qualify's for. OUr primary insurance capped out after about 9 months.
We were just cut on the 25th of this months from 40 hours a week to 20 hours. I'm thinking of cutting them all as soon as he is sleeping through the night more regularly. He has the past 2 nights and it's been a joy.
Cory

[Jimmysmom]

Hi

Jimmy was approved for 16 hours a day, 7 days a week. He's been home now for almost 2 years and all we have ever gotten was 8-4 Monday through Friday with an occasional Saturday. This works well for use though as he always sleeps through the night unless he is sick, and that's only been once in his life.

Anne, mom to Jimmy ( 2 1/2) GBS, trach, vent dependent, g-tube

[Michael's mom]

We have private insurance and currently get 16 hours a day, 7 days a week. Michael has a trach and a vent. At one time we had 24 hour/7 day, but it has since been reduced. Three days after the reduction my son nearly died when we didn't have nursing. You can not imagine the fire and brimstone left on the message machine for the medical director who cut us. The case manager keeps threatening to cut us further, saying one of us should quit working. If this ever happens, I WILL get a lawyer. Anyone have a good letter they've sent to an insurance company to get more hours? Thanks, Sue

Morgan was approved for 16 hours a day of nursing. At first I did not want to get nursing. I was totally against it. I felt it was my job to take care of my daughter and no one else's. Now I am glad that I did. We get 20-25 hrs a week of nursing and it has become a very big help.

Heather Trotter
Mom to Morgan

[christyw]

Our baby was in the NICU for five months, then home six weeks, and then hospitalized again for five months when the tracheostomy was performed. This brought us to the million dollar limit on insurance, which, as you all know, is easy to do.

So, Gaithy is on Medicaid only. She has a trach and vent, and has been home for nine months now. Arkansas Children's Hospital claims that they will not discharge their trach/vent babies without 24/7 initial nursing care, which we did initially qualify for thru medicaid. However, it was rarely completely covered, as this is hard to manage in most areas. Gaithy still qualifies for around 16 hours a day, I believe. However, we have cut hours back, on our own, regularly and are now only having one nurse work a forty hour week, M-F, 6a-2p. I was going to college and graduated in May. I will not be getting a job, so this enabled me to cut nursing to this point. Up until then, night and day nursing hours were essential, with an eight hour gap in the middle, if I was going to maintain my GPA and attendance at school, and for my husband to work. I am so thankful that I now can take care of Gaithy more full time, but that I can have eight hours each day M-F to run errands, sleep more, etc.... It has been a blessing to have the hours to use, but it is wonderful to have some PRIVACY back. We also have been blessed with our nurses as individuals. All of them have seemed quite trustworthy, responsible, somewhat competant (I have a hard time feeling ANYONE is as competant as my husband and I...I want to be on top of it all...I know other must feel this way!&#33, and very friendly.

[Olga]

We don't get home nursing because it simply is NOT available in the UK, not that we need it now, but when Grace was first trached I was like a zombie from lack of sleep. Olga