So today we have been working like CRAZYY to get company to do the bipap machine. We have not had any luck yet. Aiden is not quit ready to go home yet, but he should be soon. The only thing that is holding us up is the bipap machine. I hope something comes through..Only one equipment company accepts the insurance that we have. They will not give aiden a bipap machine. The supervisor called me today to "explain" why they will not let aiden have a bipap for home...here are her reasons...
Sup: The FDA has not approved that for children of aidens age, it is not safe.
Me: Well, they do it here in the hospital and hes fine with it. They have companies here in cincinnati that will give children the machine, whats different about Toledo?
SUP: They are making parents signing a waver, taking resposibility if that machine would harm there children. We will not do that.
We then go on arguing about how she thinks it is not safe for aiden to be using the bipap and if i buy my own im going to harm him..She also tells me how " I just dont understand"
Me: Okay, so how does your company let children breath?
Sup: Put him on a ventilator.
ME: so your telling me to trec him then put him on a ventilator?
Sup: If thats what he needs to breath.
Me: I AM NOT DOING THAT! HE DOES NOT NEED THAT!!
Sup: Well then, thats your choice. Have your doctors figure it out then.
Okay, so she thinks aiden needs to have a trec put in, and put on a ventilator to breath. I cannot believe her. The bipap does not breath for him. It just helps with a little pressure in his lungs, to help keep them open, to help him breath easier. If we put him on a ventilator, he will not breath on his own at all!! That lady need to come to Aidens unit. She needs to suction a few trecs, clean them up after a child has thrown up out of them, and just care for a child with a trec. She will think twice next time she tells someone to do that!!
Other than that, the lady trying to help me go home is going to try to get us straight medicad for aiden. Then there is another company that will give him both machines to go home.. Its going to take sometime and paperwork. In the mean time, i am going to try to get him switched to st. v's. He will only really need to be there until we get the bipap, but atleast we could be closer to home!!!
SO PLEASEEEE....LEAVE ME YOUR COMMENTS ABOUT THE LADY AT THE EQUIPMENT COMPANY..WHAT SHOULD I DO?? DO YOU THINK ITS RIGHT FOR HER TO BE TREATING PEOPLE THIS WAY..WHAT IF A PARENT DIDN'T KNOW ANY BETTER AND DID THAT TO THERE CHILD? ...it is just not far to these babies that get the end of this shit!!
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I'd call any news station that would listen to my story. If it's helping save Aiden now, they should pay for it. It's not right, how would she feel if it was her child? If you can get it aired on the news, maybe there is someone out there that CAN help? --Michele
ReplyDeleteHi, I had a daughter with SMA type 1 that passed away at about 3 months.
ReplyDeleteBeth was trached and on a vent.
With a trach, if the child is capable, they can still breathe on their own. A vent can be set to straight bipap or cpap settings, and won't breathe for the child. Vents can also be set to only activate when the child triggers a breath.
Its really hard to know where to go. I opted to have Beth trached so I could take her home sooner, and spend as much time as possible at home with her.
Also, a side note, you are at one of the best hospitals for dealing with the respiratory stuff(including trachs and vents). Dr. Cotton is tops in the field, a wonderful doctor.
best of luck to you and your little guy, he sure is a cutie.
Hi Sarah,
ReplyDeleteLaura here - I disagree with the trach and vent thing. A trach is a SUPERHIGHWAY for bacteria and viruses to get to the lungs. Breathing thru our nose with the hairs to filter out the bad stuff is the normal way, besides I think a trach and vent are much more costly than a bipap machine. There are two things that you need to do here. First, contact the media and make everyone aware that there are new treatments that are out there to help with the SMA children. Second, I would contact the insurance company where this lady works and speak to the head hancho regarding the treatment you received from her. She should not be working with the public with an attitude like that. I bet that if this was her child she would not have tolerated that kind of conversation and would go to any lengths to help her child. Would Aiden get the same kind of treatment at St. Vincents as he is getting in Cincinnati? I REALLY MISS MY LITTLE CUTIE PUTIE and hope to see the two of you soon - miss you lots and love you lots - Laura
bethysmama..toledo told me that aiden will not breath on his own with a vent. also the doctors here said he doesn't need it..i dont want to put hiss little body through anythign else he needs to go through..im sorry for you loss.. im going to fight until the end for aiden...i hope he can go home soon
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