Poop and other stuff that stinks

Poop

10:30 on a Saturday and we're just in from a night out... at the pediatric E.R. We are fortunate have a pedatric E.R. about a block away - and we're fortunate because this is the first time we've had to use it! The issue: severe constipation, so if you are weak of constitution, you might want to skip the "Poop" part of this entry.

Of course constipation is nothing new to Noa, and it is a problem for lots of special needs kids especially those like Noa who cannot walk and therefore she just doesn't move... everything around like your average toddler who can run circles around circles. All her adventures in new foods probably add to the problem: bits of pasta or rice krispies, etc... so this was just worse than anything we'd experienced before.

Noa has a high tolerance for pain so really what we noticed was that she was sitting funny and not wanting to stand and sticking out her belly - and finally Saturday morning, she just wouldn't sit up or bend at the waist at all. We tried valiantly to get things moving, but my Saturday evening - after a day of leg moving, tummy massages, rocking chair adventures, a bike ride and a bath, it was clear nothing was moving.

An x-ray showed that indeed there was a "blockage" - and actually we were lucky that it wasn't bad enough that they had to call the surgeon. One enema later we were on our way home with a tired, but slightly more comfortable Noa. We still have four days of enemas to go. Lucky us.

The thing that stinks
I haven't written about this before, but we've been an ongoing battle with Noa's insurance to cover physical therapy. She's on a Medicaid waiver - specifically designed to make sure that people with disabilities get the healthcare they need regardless of income. At first we were fine with this new set up (through Medicaid we went into a program at HIP of NYC).

At first, it was a bit of a pain as they made me renew her PT perscription every month which meant calling her GP and asking them to fill out the paperwork and send it to HIP for approval and then they'd send a thing to the PT... a lot of work for someone who will likely be in PT her whole life. When I called to ask if they had some arrangement for disabled people (which is what the medicaid waiver is really there for) she said no - that she might get better and so they couldn't do that. When I told her Noa's situation she said - and I kid you not - "there are miracles. I have seen miracles."

At that point I asked her to stop talking. I assured her that I'd call them if there was a miracle. Frankly if there were one, I wouldn't waste my time bilking Medicaid, I'd be out with Noa dancing at a different club everynight until our feet hurt. In any case, it hardly seems like a monthly renewal in case of "miracle" was a sensible business model - though perhaps it explains why healthcare is so expensive.

ANYWAY - a couple of months back, HIP changed it's process and hired an outside company to assess the needs of patients seeking PT. This company (we'll call F) requires the Physical Therapist to call and request the renewal (rather than the doctor who is perscribing it, but who also is not someone who is an administrator and is in fact rarely at a desk because she is with patients!). After initially approving a month of visits, we were reduced the following month to 3 visits. The PT called me and said she had seen this before and that she suspected they were going to cut her off... and viola, they did. Because she hadn't improved enough (over the course of a month and a half), so obviously it wasn't working.

Silly people at "F" - they have no idea who they are dealing with.

We called and asked for a review of the situation. They said they could review it and perhaps get us 1 or 2 more sessions. We informed them that this was not going to help - that the issue was bigger. That they were denying services to a disabled person with the criteria that she should "recover" - which did not make any sense for a disabled person, much less a 5-year-old who is learning to walk.

AND NOW, after their "review" they have decided to give us 2 more sessions - their logic being that in those 2 session, the PT could show me the exercises that Noa needs to do and then I could do them with her. TOTALLY not getting that these are not exercises to recover from some injury at work - this is a child who is learning to sit and walk and who is blind and there is not one set of "exercises" for that.

Oh poor poor people at "F".... they do not know who they are up against. I just want to call them now and say (as I have to others before), we are not those people who are going to let it slide, so you might as well just give it to us. Going this route will only cost all of us lots of money and in the end you will not deny services to a 5-year-old blind disabled child because it is WRONG. And, if this is your practice (as it seems to be) then we'll do all we can to make sure you don't do it to anyone else.

So... that's the story of poop and other things that stink. We'll keep you updated.