Wednesday, April 11, 2012

Slowly settling in

We all still need some time to adjust to our new digs.  While this is a beautiful, clean, wonderful environment for rehabilitation, we have to learn our way around if we are going to live here for a while.  We spent so much time in hospitals that we know it won't be comfortable no matter what, but it's nice to know where the linens are, the vending machines, the water machines, the coffee - Oh GOD, the coffee here is beyond terrible.  We also learned that we are not allowed to sleep in the bed with Ty.  I had to slip rainbow bear into his snuggling arms and crawl out this evening which made me a little sad but also a little excited to get online and read a book before I take an Ambien to fall asleep myself. 

Just a quick side note on the Ambien - don't worry, it's not habitual for me... it's just impossible to sleep in the hospital sometimes with the beeping and the non-stop interruptions coupled with all of the non-stop noise in my head.  So, every once in a while I need to catch up on sleep for my own health.  Plus, the set-up here at Blythedale is one of the worst as far as sleeping goes.  The only other arrangement that compares as far as middle of the night noise and interruptions is being in a PICU (pediatric ICU).  The set-up at Sloan and Cohen's Children's hospital were much different.  I thought it was terrible when I was there, but tonight I find myself wishing I were there :)
Ty slept until 11AM today which wasn't great because he was supposed to begin therapy at 9.  His new doctor added an anti-anxiety medication to his routine morning and night so that his emotions wouldn't be so high when they are trying to work with him, but unfortunately it knocked him out.  They stopped that and hopefully tomorrow he will have an earlier start.

So, it looks like Ty will be getting PT two or three times a day, OT one or two times a day, speech and eating therapy and aquatic therapy (in the pool, as part of his PT).  Lou and I are having a tough time watching him work with the therapists because it's just painful to see him so incapacitated.  And so many discussions with the staff here revolve around our needs at home, such as handicapped ramps, bathing accessories, tools to get him up the stairs, etc.  It's not something we really want to think about because for now we can carry him, and in the future we expect him to be much stronger.  Of course we are aware of the reality we are faced with.  WE KNOW.  Believe me, we are not unrealistic.  It's just that the only healthy way to even live this roller coaster life of ours is to do it one day at a time.  It's the only way we survive without having a mental breakdown.  So planning ahead for a future with a severely disabled child isn't something we are ready to do.  We are so hopeful and we need to always hold onto that.  Thanks to all of you, we are able to keep strong and believe in a better tomorrow.

Ty didn't get a full day of therapy today because we had to leave for a consultation with an ENT nearby.  Ty needs to have tubes placed in his ears in order to begin hyperbaric oxygen therapy because he will be under a lot of pressure and he is too young to pop his own ears on demand.  Unfortunately, the consultation did not go well and the doctor rejected Ty as a patient.  We need to find another ENT who is willing to perform this most minor procedure.  She wasn't comfortable with his condition because - like she told me - she "treats healthy children" and wouldn't want to put him in danger.  As if Lou and I would be okay with putting him in a dangerous situation.  Ty's vitals are perfectly normal, he has no heart conditions, no breathing issues and has been under anesthesia almost 100 times and that is not an exaggeration.  I could barely control myself for hours afterward.  I am still absolutely furious beyond furious every time I think about the two hours we wasted in her office while Ty was completely uncomfortable.  I'm mostly upset because we waited two days for the consultation and I explained Ty's situation to her staff at the time we made the appointment.  She knew we were in there for an expedited procedure given Ty's situation.  We were under the impression that he could have the consultation today, procedure tomorrow, begin HBO as early as Friday.  Now those treatments will be delayed until next week and time is of the essence.  I am getting myself in a complete tizzy again just mentioning it here so I need to go and get my mind off of all of this.  The hyperbaric doctor at Phelps is really caring and good.  I just need to remind myself that it will work out.  We will get there sooner or later.  And it will help Ty to improve.

Deep breath.  Goodnight.  :)


  1. I'm sorry that you had to go through that experience with the Doctor unwilling to treat Ty.It must be so completely frustrating for you after everythign you have been through already. It's good and important to vent so vent away. We are all here for you and I am praying and thinking about Ty daily. He is such a inspiration. It's difficult to even put into words. Take Care.

    Ann from Buffalo

  2. Praying so hard that everything works out perfectly and for another miracle for lil Ty.

  3. Dr. Jeffrey Lewis Keller, MD
    Pediatric Otorhinolaryngology, Otolaryngology
    (914) 241-1050
    90 S Bedford Rd
    Mount Kisco, NY 10549

    He is the pediatric ENT that we used for our boys.