Services

We had a meeting with the Children's Hospital in Sydney on Tuesday to see if they would be able to offer or suggest any other procedure, drug, anything in addition to or instead of what Josh receives now through the hospital we attend.

In short, no.  The rehab doctor mentioned one or two other drugs we could try to help with Joshy's high tone, and she also suggested we remain with the rehab department we're consulting with now, but perhaps request to change the head doctor.  And that is what we'll do.

Now that Josh's arm has been given the all clear - it's been 9 weeks since it was broken - we're keen for him to return to school, and we met with the people involved in his care there on Thursday.  Our main concern is how they move and position him, and that is their main concern too. In fact, Josh will not be allowed to return until those who care for him (at school) are shown by the physio exactly how to move, and handle him.  Id left a message for someone from a particular community service to attend the meeting at the school, but no one came, and the physio is through this service too.  The principle of the school called that service on our behalf and shook things up a little.  The physio however can not advise on the management of Josh until medical notes are obtained about his bone structure and anything supporting that. 

It all goes 'round in circles, and everyone needs something from someone else.

Things take so long to happen.  At one meeting or discussion with someone, a suggestion may be given, and idea put forward, and then its forgotten about or not followed up, or that department needs to consult with another department before going ahead with something.  It's frustrating. 


One of the doctors we see every 3 months or so, is a paediatrician who basically oversees and coordinates a lot of who we see.  I suggested that in future we include at those meetings a representative from the main departments involved in Josh's care at the time.  We'd already had a consult with the paediatrician next week, and now, after obtaining her approval for this, in attendance should also be the doctor or his registrar we see for Joshy's bones, and the physiotherapist from the service.  This hopefully will decrease at least some delay in moving hings along.

On Friday, because the school's principle had organised it, we had a meeting with the service and got to voice our frustrations over the lack of followup and support that we expected from them. Id requested companies I could call to hire special car seats I could use during the period Josh had his broken arm. I was given the name of one place.  After Joshy's sleep study where it was determined his oxygen intake was low when he sleeps, I requested companies I could obtain oxygen concentrators from to use for a period of time.  I never heard back.  We understood that we would receive regular visits from the physios and OT's to advise how to move and position Josh, and other exercises we could do.  How do we know that whatever we're doing is okay? Josh cant "sit" in his wheelchair now, and JF is constantly modifying it to suit.  There has been "talk" of a new one, but nothing else.


I did have someone out a couple of months ago talking about equipment needed for Josh, and one thing I requested was some kind of all inclusive adjustable day bed / chair.  When Josh is with me of an afternoon / night, apart from his bed, I either have him on the floor, lounge, or on a massage mat which is atop a sun lounge.  All of these are not supportive.  I don't know what's happening with this, so we mentioned that again at our meeting yesterday.

What if there is a better way?  What if what we do is more harm than good?  Is it okay if we break Josh, because no one else wants to touch him? 

Its not that we expect things to be done for us.  Its the lack of followup, communication between all involved, and the length of time things take. We are always chasing things up, making calls, sending off emails etc.

As someone once said to me, we really do have to be our own case manager.