May 10, 2011

Various Limitations

Today, I received a call from the school nurse.
Last week, during G-tube at school, Hajime choked and vomited a large amount of saliva. And from tomorrow, we now need to take the suction machine to school every day.
Before the G-tube, they are going to remove the saliva before the G-tube. This is the result of the school nurse talking directly to the hospital nurse.
The suction machine is very heavy and it is not a weight that Hajime can carry. So we have to deliver it to the school nurse every day. The nurse told us that she will talk to the school if they can purchase it or not.
When we talked to the hospital nurse, we asked whether there are any other good medications, and were told that the patch works the best and if that doesn’t work there are no other good medications. But, there is an operation that is done in the mouth to minimize the saliva for 3 months…so it seems like that maybe what we’re going to do.
And also, it’s too exhausting for Hajime to stay at school the entire day…so they are thinking of shortening the time he spends at school. They said they will hold an IEP meeting to decide about that.
Whether to shorten the time at school or to change to home schooling, it’s a tough decision to make.
And, it became mandatory that Hajime wears his neck collar (neck brace to hold his neck up) to school starting from tomorrow. There’s no chair to help hold his head up, even at school, so to be in that state for the entire day is just too much. They decided upon that after considering the risk that he might suffocate or tear a ligament.
Hajime has been worrying about that. Wearing a collar to school means that he’ll be standing out amongst the other students…and he really doesn’t want that.
Do this! Do that! As there are more requirements and limitations at school, it seems that Hajime feels like he’s suffocating. The school side is making their decision based upon prioritizing safety first.
I worry about Hajime’s feelings.

Translated by Christine Shirota

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