Hope for Max

CPT Vest

Just when you thought (well, we did at least) that there couldn't possibly be another piece of medical equipment in Max's room...here comes the CPT vest.  This vest is a automatic version of the manual CPTs we have been doing for the last year.  It is way more effective.  When we do manual CPTs we can only focus on one area at a time.  This has been a problem because Max's mucus plugs (in his lungs) would just go to another area.  We were moving them around instead of getting them up.  Mucus plugs are what blocks off his lungs and cause collapse.  This vest inflates and provides various levels of vibration to bring the mucus plugs up and keep his lungs clear.  These are very popular in the Cystic Fibrosis community.  Max quite possibly has the most expensive wardrobe in town with the addition of this vest.  We received the invoice and it costs approximately $15,000.  Tricare may not be on my top ten, but so far they seem to be paying for this one.  See the picture of Max rockin' his new vest below.

Aaron and I really thought Max would flip out when this thing got going.  He is on it for two 30 minute sessions a day, but it doesn't see to bother him.  He just gets bored towards the end of each session.  Aaron and I think it's awesome because we get to interact with him instead of having to "work" on him.

Max continues to improve.  He is now super into Thomas thanks to Ms. Liz providing many Thomas DVDs for the hospital.  Of course, any good Thomas fan needs the train and Nana Dorman was ready to oblige.  She purchased one small set, but that would not do for Max.  Aaron went out that same evening and needless to say our whole living room is now the Island of Sodor.  Here is a pic of Max with his new train.

DENIED!

Well, we figured it was inevitable, but we were holding out hope.  Tricare denied Max's power chair.  Aaron and I are in the process of filing a reconsideration, but that is pretty much a joke.  The reconsideration is a letter we write refuting the points which they denied the chair, but it is reviewed by the same physician who denied the original submission.  After that we go to a 3rd party mediation appeal, which is where we hope to make the most progress. 

Tricare denied the chair because "they" say that since Max relies on his parents for all his daily living activities.  Duh...he's 2!  Also, he wouldn't rely on us if he had the power chair...don't you love circular logic.  "They" also claim that due to his ventilator support needs he would be unable to operate the chair.  He only uses his bi-pap while sleeping and as responsible parents we would not let him operate the chair while sleeping...THAT WOULD BE DANGEROUS!  In addition, I have seen numerous children operate a chair while on a ventilator or bi-pap (and awake).  Lastly, they claimed that there is no proof our home could handle a power chair...our 2,000 sq. ft. one story home...yep, probably to small.

This is what insurance does. They hope we won't appeal, most people don't.  They hope we will give up, most people do.  Aaron and I refuse to accept that for Max.  Max deserves a good quality of life like any other child and we intend to get that for him.  We have a couple of avenues with Medicaid waiver, but the frustrating part is that it delays Max's chair another 6 months by the time the paperwork clears. 

Everyday that Max waits for a chair is another day he loses in development.  Max doesn't understand his position in space.  When a child first begins to move they learn how to function with the space around them.  Max hasn't been able to learn that yet.  As I said before I could go on for pages explaining why a power chair is vital for his development, but I just don't have time.  Imagine having to wait for someone to figure out where you want to go or never being able to "run" to your mommy and daddy when you want to.  I see the look Max has when he sees kids playing in the neighborhood.  He cried to go over and join them, but a kid in a manual stroller cannot keep up with a bunch of kids.  2-3 year olds do not want to hang out with a child who can't go anywhere.  As a parent watching your child long to be social, but unable to is heartbreaking.  It seems so unfair that Tricare gets to make that decision for us.  You cannot deny a child the right to a more normal life, because it is too expensive.  Max did not ask for SMA.  It found him.  We are merely trying to provide the best possible for him in his circumstances.