Friday, November 13, 2009

Frustrated and standing still

Grrr.. I'm having trouble getting V back into therapy. He's been out of his regular PT/OT and speech therapy for months due to all the feeding tube problems he was having. He was so sick and weak from malnutrition that he could barely stand on his own for the longest time before this last surgery.

That's why I finally pressed for the surgical revision of the site. I think a year and a half of trying to stop the profuse leakage from his original site was enough (not to mention the repeated infections and intense pain from skin breakdown), and fortunately so did his GI doctor. But by the time they really got down to business he was so depleted it was rediculous.

There was no way he could have participated in any type of active therapy.

In a way it happened at the perfect time (if there is such a thing), because financially we were having trouble coming up with the gas money to get there and NO ONE wants to come out here to our house. Can't say I really blame them. We're not in an easily accessible area and there's no room in here to allow for much anyway. Going to them is really the best option for us.

Now that V is over his last (I hope) g tube surgery and is healing well I want to get him back into therapy but nobody will return my calls or emails. His therapists have always been very accomodating and wonderful to us, it's just that I can't seem to get a response from ANYONE.

Ugh. Just venting today, and hoping somebody returns my emails soon. My kiddo needs services and when he couldn't participate they were all over us. Now that he's ready.. where is everyone???


  1. Oh that sounds frustrating. Well at least V is feeling good and doing well. Hopefully they will give you a call soon. It usually takes a bit to get things all started up again. Do you have a case manager who you could call? That's what I have been doing, when we get out of hospital's, I call the case manager that day and let her know so she can start all of the services again.Hoping to hear that they call you back.

    ps. thanks for all of the tips about the g tube. I have ordered the foam that you mentioned. I may have some questions about it when it arrives. Things are finally starting to heal and look better.

  2. Come on peopl. Looks like you need to knock a few heads in. Go momma!!

  3. i hear you...when we were opting out of home therapy services for LC we definitely experienced a bit of "how could you deprive your child of necessary intervention" fall out. Would a pediatrician be helpful in this scenario? LC's wrote a Rx that allowed her services to continue with insurance assistance...I know the insurance isn't a consideration but maybe the Rx would light a fire?