doctors decide to take off vent (CPAP)

[jarner79]

Hi everyone. It has been a while since I posted. Just looking for some opinions. My son currently resides at Hospital For Special Care in New Britain CT. It is a Long Term Rehab center and he is in the Complex Pediatric Section. This was a decision on my part as his medical care that was required and the fact that I could not mentally handle it anymore. I know that sounds horrible (at least in my head it does). But now, He gets round the clock care that he must have, around many children just like him, he is always happy (always was anyways). I see him whenever I want and bring him home for visits whenever I want and I actually get to enjoy my time instead of always being stressed out and depressed. And, I have actually been able to work full time. I am still feeling guilty, but I am sure it will fade as time goes on. he is in great hands, and is getting everything he needs. He is in the CREC program for special needs, and gets so many activities a day its just awesome!

I was informed last night that the doctors ordered him off the vent (CPAP) that he has been on for 4 years while sleeping or sick. His Pulmo kept him on it pretty much as precaution and to keep his lungs popped as up until he got his trach, he had pneumonia and/or respitory failure numerous times and the bottom of his left lung is sort of "squished" as the doctor put it.

This concerns me. I know they are great at what they do, but I am concerned if they don't have him on his vent at night that the insurance will deem his stay there as non medical neccesity and dis-charge him home. Of coarse I would never deny him, but things would go back to the way they were with nurses 24/7, no family time, my other children being neglected unintentionally, stress, depression, no sleep, etc...

Any opinions as to why the doctor would want to do this? They are checking him for C02 periodically but I am still in a fuzz about it.

[kadiera]

Jessica -

I know that must have been a hard decision, but sometimes it's the only way to make things work. It's difficult to balance everything that needs to be done and everyone's needs in a normal family, much less with a complicated child.

I wonder if they think he doesn't need the CPAP? Or if there's some cost benefit to them, or some way to move him to a less supervised unit? I think I'd be questioning the doctors very closely about what their plan is and what the results are that they're trying to achieve, and what the repurcussions are.

[jarner79]

The doctor is suppose to call me by this afternoon. Of coarse he wasn't in when I was informed by his nurse of the new order. I know I bother the heck out of them with my questions and how I like things done,(oh well for them) and it's hard to try to execpt the way they do things, but it works, and works well. I just didn't know if anyone here has gone through anything like this before when it comes to rehab centers. (by the way, the place is beautful and very welcoming atmosphere)

[Ann]

The skeptic in me would be concerned that the decision is based on cost-benefit and not necessarily what is in your son's best interest. That said, it probably won't take your son long to declare himself as to whether he does, in fact, need the vent at night. I think I'd definitely want specific details (down to numbers) of how he does each night off the vent and compare to how he does when he's on the vent.

[IzzyB]

I would question it because I know for my son to come off the vent at night time he would need a sleep study. So what information tests did they run to say he no longer needs the vent?

[kshell]

I also think a sleep study would be needed in this situation, especially if abruptly stopped. Usually it's a weaning process

[jennymclelland]

I don't have any specific advice about vent / no vent, but my heart breaks that you feel guilty about getting your son care that works for your whole family. I googled the hospital and it looks phenomenal (from their website). I wish James could have been in a place like that when he was stuck in subacute.

I'm from a region where trach babies get sent home right away. James was born up at Stanford, and they don't like to discharge trach babies under one year. I think the right answer is probably somewhere in between. But during the months when James was stuck up there in subacute, people here in the valley just didn't get why we didn't bring him home. We couldn't have handled him. We were falling apart at the seams. We could barely handle ourselves, and toddler was falling apart from being neglected.

Would James be slightly better off developmentally today if we had sprung him from subacute sooner? Absolutely. Is there some very real chance that he'd be dead, because he would have had a breathing emergency that we couldn't handle? Absolutely. If he had been home when he was smaller and unstable, would our marriage have fallen apart from the stress? Maybe. If he had been home when he was smaller and unstable, would we have been able to give any attention at all to our older child? Would we have been able to come to terms with James' disabilities, or would we have just been sleepless and confused?

The rehab hospital sounds like a great place, and you shouldn't feel guilty at all about the choices you've made.

[Ainsley's Mom]

I think there are times that a care facility is a good option. I know that it is an agonizing decision for families and until you've cared for a person with around the clock needs you just can't fully understand. As a child gets older it is much more demanding just because they are physically bigger and heavier. Plus at home you just can't offer the same level of interaction, therapies and activities. They have a whole staff, but at home it's just you. So try not to feel bad. It's working well for your family and your son so it's understandable that you are concerned about his status changing and what that might mean. I don't understand vents but it does sound like they have reason to believe that perhaps he no longer needs it. And I'm sure no one wants him to be vented if he doesn't need it. I hope you are able to get some answers from the doctors and staff about why, how, and if that will affect his being able to stay there. :hug:

[jarner79]

Derricks Pulmonary pretty much alwasy kept him on for Precaution. They are montiroing all his numbers (C02, O2 sats, HR, etc...)

Now, when I didn't have overnight care (which happened alot because my nurses where very unreliable, I didn't put him on his vent. I did that so we could all sleep and be ready to face the next day. He was never dependant on it and always slept just fine without it! I know he would be fine, It just boggles me because it wasn't my choice, my concern or my decision.

He has been there now for almost 10 weeks I think (admitted on Feb 29th) he he is doing wonderful. they even got him to tolerate the standard trach in lieu of the Flex one that he has had for 4 years. Even changed his formula from Peptamin 1.5 to Osmolite (guess it is more water based and easier on system since he is J fed.

I would really hope these doctors didn't do this as a cost effective decision. That would put me through the roof! The doctor called me Friday and of coarse I missed the call. I called back within a few minutes and of coarse he was in a meeting and Now the waiting begins again.

I call 3 times a day to check in when I am not there, and everytime I call, its always the same happy nurses. (they are great). They always say how happy he is and laughy and explain how he did fine overnight with no vent. So its almost a week without it and no issues so far. Thats the longest he has gone without it. During the winter, I had no overnight or day nurses for an entire week, and sparactic evening. Horrible weather, people sick. It was a really bad week. So the first two night...no vent. He was perfectly fine! The next few days I would put him on around 6pm and take him off between 11-12 when I went to bed, and sometimes his HR would actually lower a bit more like he was more comfortable (70-80's).

I am also concerned if the insurance will approve the next round of time. I think they do authorization every 60 days. My concern is if they don't because of being off the vent and they discharge him home, will they authorize the PDN again? If they don't, I would loose my job...etc....

If I actually get the doctor on the phone this morning, I will update my responce!

[jarner79]

Just got off the phone with the head pediatrician at HSC. There reasoing for taking him off the vent is they feel he does not need it since he is getting orund the clock Respitory care and nursing staff. They have checked his C02 daily and they have been perfectly normal. He explained that in a home setting, it is always a good thing to have the vent on Cpap for Derrick due to the little amount of care you can actually provide without the hospital staff (respitory staff he means). He explained he may never need it, maybe only when sick, or maybe even seasonal. They are doing a chest Xray this afternoon to follwo up, and compare to last weeks Xray while on the vent. He also explained that Derrick still and probably always will require a lot of respitory care (duh, I know that) so it was not an intention of cost effective.

He said he went in and saw him earlier this morning and he was his normal happy self, smiling, giggling, and hand waving in the air..He is such a little darling. I really was blessed to have such a happy boy given all his medical problems. Planning on a overnight visit home on Memorial day weekend. HA, I probably wont sleep that entire night! (I love the fact I have these options with this place).

[IzzyB]

I am glad you got an explanation and I highly doubt it will make a difference when getting insurance approval. That is so great you found a place that will take such good care of your son, I think it is the perfect situation for your family.

I think we all have those guilt issues. I know when the nurse gets here at 7, we many times take our daughter out and we feel guilty because we are not taking our son with us. But our daughter needs that attention without our son, because when our son is there, our focus tends to be on him. So it is better for our family to do that. We have to remember as parents of special needs children that the whole family needs to be happy in order for all of our children to get the care they need. So if you are less stressed, you can take better care of all of your children. Your son is getting the attention he needs now by being there and you have time and effort for your other children. So it is the best for you and there is no reason to feel guilty.