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Caty
04-02-2008, 08:52 PM
Hi,

I'm Caty, mom to Bo (turns 3 on Sunday) and Nate (turned 1 on Monday) (no-we didn't plan on their birthdays being close :rolleyes: ). Nate was born with idiopathic hypotonia and has a host of issues secondary to that, one of which is respiratory failure. He is currently in the hospital after a bad bout of RSV in January that led to 2 weeks on a regular vent and oscillator and then led to a trach for "quality of life" reasons. He needs ventilator support and although he is *only* on a rate of 6, he needs it! Every time they've tried to wean him off his current settings he doesn't do too great.

We are currently in Children's Hospital in Birmingham, AL, going through their home ventilator program and should be going home on April 14th. We are anxious to go home but at the same time are a little wary. Nate was on o2 before all this happened so we're familiar with all the monitors, etc., but we're having to go home without nursing (insurance won't pay for private duty nursing, 4 month backlog for SSI/Medicaid in AL) and know we're going to wear out quickly once we're there. :eek: We have a great network of support in our families and community but we will definitely need trach and vent "support" from you vets.

Thanks so much,
Caty :blush:

alizesmom
04-02-2008, 09:33 PM
Welcome, I hope you are able to get some sort of respite/care soon. If a family member can spell you for a few hours or better still, maybe an occassional night that will help a lot. This is a great bunch of people to learn from, vent to and even better laugh with. Karen

Topher's Mom
04-03-2008, 06:29 AM
Welcome Caty. I can understand the wariness of going home with no nursing. We have never had any & yes there will be nights with little sleep. I did get worn out pretty quickly. You can do it though & hopefully your nursing situation will be taken care of soon. Hang in there. This is a great site for support & information. Ask any questions you need to & vent whenever you need too.

Karol

My little figther
04-03-2008, 07:26 AM
Welcome to the board... terrific boad to shoot questions about almost anything and yes laugh too.
Michelle

JWorthington
04-03-2008, 03:16 PM
Welcome to the board. You will find lots of support and advice here.

Julie

Kaylie
04-03-2008, 06:52 PM
Welcome its so very nice to meet you.sorry its under these circumstances. i am sorry about no nursing, but sounds like u got great support within your family which is awesome forsure, i cant wait to hear all about your little one as well as the rest of your family.
take care
Kathy

drct1245
04-07-2008, 04:33 PM
Welcome Caty - It is very tough at home w/ no PDN. I think the hardest part would be a 2nd child. We came home (on a vent) w/ only visits from the nursing agency. I was on family leave when Ayden came home, so I was able to stay at home for the first 3 months. During that 3rd month we were able to get some nursing hours.

Weening from the vent is difficult. We actually went from a rate/volume to a CPAP and then off - although we still have 3 more hrs to go. :)

See you "around".
Dawn

Kira
04-07-2008, 10:24 PM
Welcome, Caty. I just wanted to wish you luck with everything. I hope you can get rest. This is a very stressful time in your life. I am glad to hear that you have family support, and I hope you can find time for yourself, which I know can be very difficult to find.

haltec
04-10-2008, 12:33 PM
Welcome Caty. Good luck with everything and I hope you are home soon.