Welcome to the Parents of Children on Ventilators group. This group is intended to be a place for parents to meet, share questions and stories, and generally...
HI everyone my name is Amber, I have a 4 month old son, Landon, that is vent dependent due to central apnea, he has micrognathia which is originally why he had...
hi amber and welcome to the group. it sounds like your little fella is keeping you busy and we wish you the best of luck. where do you live and which hospital...
Hi Amber, Hang in there with the nursing situation. The system just doesn't understand how difficult it is for parents of children with medical problems. My...
Our insurance is giving us 30 days of nursing and that is it. we tried to get medicaid but we make too much money. SO we are on a waiver waiting list which can...
Landon is finally doing pretty good, he is having another study done to see if maybe he just needs cpap at night, which would be wonderful. We might be getting...
Hello everyone, My name is Sylvia and I'm new to this group. My son, Tyler, was born on Nov. 17, 2004, at 27 weeks weighing only 1 lb 10 oz. He remained in ...
... letters of medical necessity and have been told by our insurance that they "dont doubt he needs a nurse but your plan doesnt cover it" We had to fight for...
yes it does seem like that sometimes, Amber. i hope things work out for you. is there any opportunity to contact a newspaper or congressperson in your area...
We have already been on the news and in the paper - no results! We jusy keep praying that he will get the help he needs. He cant stay in the hospital forever ...
Hi. Thanks, Mark, for the warm welcome. Yes, Tyler can get outside, but right now it's really a pain-in-the-you know what. He's on a large, out-dated...
... I completely hear u on the drug addict thing, my sister is a heroin addict had 2 kids and didnt want either of them! my husband and i didnt have any...
Amber, It sounds like you know exactly how I feel! It was so hard going through IVF and then watching the news to see these idiot women who a) burned their...
Sylvia, It takes about an hour but it would take us 2 hrs to go to Indianapolis. They have the best doctors in Cincy, one of our friends comes from Georgia to...
Hi, We saw similar situations at the Univ of Michigan as well. When you hear about people coming from the South, Minnesota, etc. just to see your doctors, you...
Sylvia, I always get jealous and feel like I lost out when I see people who are having healthy babies, I cant help but feel that its not fair. I know Landon is...
Amber, I didn't know you had such a stressful pregnancy or that the docs recommending terminating it! That had to be terrible! Everything you described as...
Sylvia, We got to take Landon on a 9 hr pass for Easter, he was so happy it was the first time since he was born that he left the hospital. He smiled and...
That is sooooooo AWESOME, Amber!! I am very happy for you! I hope you took lots of pictures of the special day. I remember the first time we took Tyler...
This is a welcome to the new members we've had join this group recently. While it isn't a large group yet, connecting with other moms in similar situations can...
Hey all! I thought I would take a minute to introduce myself to the group. I'm Nikki, mommy to Zachary who is 3 1/2 years old. He suffered a severe brain and...
Hi Nikki, My name is Sylvia and I have a 27-month old son, Tyler, who was born premature at 27 weeks. He has Bronchopulmonary Dysplasia (BPD), or "really...
HI. My name is Lin. I am a medical foster parent in KC MO. We are currently fostering a 2 year old with Leighs disease. Leighs is a genetic degenerate...
I have a medical fragile foster child that was placed with me on 9-10. I have missed work under FMLA to train to bring her home and missed 2 weeks of work...
Hello. I don't have any personal experience with this, but a quick search on Google brought up this site: http://www.dol.gov/esa/whd/fmla/ In skimming through...
Hello. Just a reminder, we're a small group but we can offer each other support. We have new members, so please introduce yourself if you haven't yet, to let...
I'm a new mommy and I had no idea having a premie would be so hard. My son does have BPD, high blood pressure, rickets, and a few others. He'll be coming home...
... that ... is ... he ... getting ... is ... Hi Amber, I'm Miranda, and like you my son is also 4 mos old but still in the NICU. I've read some of your posts...
Hi, Miranda....welcome. My daughter is 12 yo and uses a vent. Mostly on CPAP mode. She has been trached since she was 3 1/2 years old. She has a chromosome...
Hello, my name is REA, mi son is 2 1/2 , he had a surgery at 4 days old and has been on the vent and oxygen since. The most important that you have to...
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