dc-b
05-12-2003, 08:45 AM
Hi. Jet has a roto virus right now (diarrhea), but after he gets over it in a few more days, Loma Linda Hospital is going to finally switch him to a "home-type" ventilator, and then gradually try to wean him off. This decision comes in lieu of our push to get him transferred to LA Children's Hospital (who finally said they'd accept him for a second opinion, but would transfer him back if they determined they could do nothing more for him then Loma Linda). We're not real keen on the idea of moving Jet and then coming back, which I'm sure would probably be the case, especially since we have another option for getting him home.
I called an NICU attending at our local hospital in Palm Springs, whose children I taught (I'm a high school teacher), and he said he would monitor Jet's vent at home. Now, if Jet can get off the vent, we'll have an easier time, but if he can't, this doctor (thank G-D for him!http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/wink.gif said he would help us. Now the issues seem mostly bureaucratic--how to get a Medi-Cal waiver to help pay for nursing care, how to convince the hospital to release Jet into this doctor's care, etc. Getting the pediatric nursing in our area might be difficult, and I would love to try to arrange care myself, but so far I don't know how much skilled nursing the hospital will demand (or whether it will even be their decision), whether my family can manage me not going back to work, whether we can get a nurse paid for, just for nights alone. (My insurance only pays for 3 two-hour visits from a nurse each day, despite the fact that the hospital's choice of sending Jet to a sub-acute facility would certainly cost my insurance company a lot more than a nurse for him at home).
Jet still isn't gaining weight, despite the NIssen and G-tube, and I'm convinced it's because he spends all his energy fighting off infections at the hospital. I will push to get him home if I have to bleed to do it!
Thank you all for giving me strength and confidence that my son can make it at home.
Happy Mothers Day.
~Danielle
I called an NICU attending at our local hospital in Palm Springs, whose children I taught (I'm a high school teacher), and he said he would monitor Jet's vent at home. Now, if Jet can get off the vent, we'll have an easier time, but if he can't, this doctor (thank G-D for him!http://www.twinEnterprises.com/iB_html/non-cgi/emoticons/wink.gif said he would help us. Now the issues seem mostly bureaucratic--how to get a Medi-Cal waiver to help pay for nursing care, how to convince the hospital to release Jet into this doctor's care, etc. Getting the pediatric nursing in our area might be difficult, and I would love to try to arrange care myself, but so far I don't know how much skilled nursing the hospital will demand (or whether it will even be their decision), whether my family can manage me not going back to work, whether we can get a nurse paid for, just for nights alone. (My insurance only pays for 3 two-hour visits from a nurse each day, despite the fact that the hospital's choice of sending Jet to a sub-acute facility would certainly cost my insurance company a lot more than a nurse for him at home).
Jet still isn't gaining weight, despite the NIssen and G-tube, and I'm convinced it's because he spends all his energy fighting off infections at the hospital. I will push to get him home if I have to bleed to do it!
Thank you all for giving me strength and confidence that my son can make it at home.
Happy Mothers Day.
~Danielle