Monday, March 27, 2006

Resp Appt

We had two appointments today, the first one was with an Opthamologist who is doing some research into the outcomes for premature babies with ROP I am really pleased and proud to be able to say that Michael did really well with the assessment, and the Opthamologist assessing him was really pleased with how well Michael did.

Next was our appointment with the Resp, unfortunately since our appointment two months ago, things don't appear to have moved on much, there still has been no word or assessment done by Speech and Language, despite a referral 6 months ago. Unfortunately due to sickness, holidays and other commitments there has been no Radiology Meetings, so we still don't know if we are to get a repeat CT done. The videos I did of Michael sleeping have not as yet been looked at.

I did ask about the chest deformity, and was asked if anyone else within the family has a chest of that shape, when we answered no, we were advised that it is due to the level of damage within Michael's lungs. The scars on the lungs have pulled Michael's chest into this shape, I guess just one more outward sign of the turmoil within his lungs.

We did however come away with an appointment for a months time, and a pulsox monitor to wear for 24 hours. This will monitor Michael's saturation levels for 24 hours, and give them some idea of how Michael SAT's.

When Michael was younger we were always told his 02 (oxygen) saturation levels had to be above 95% and even now 6 years later, that level still sticks in my mind as being the level needed. So can you imagine the heart sink to realise that if we hit 95% we were doing well?!?! Michael sat mainly between 89% and 94%

I remember a couple of years ago taking Michael to see another Consultant who had his SAT's monitored, he was quite happy with Michael sat'ing at 89% because as he put it "he probably doesn't sat much higher than that anyway." I remember feeling quite indignant because Michael could sat at 97% with no problems, I remember thinking at the time, 'that is so wrong, how can you accept 89%?? why aren't you concerned?'

Now here I sit and it appears that 89 - 94 is 'normal' for my son, and I guess I'm the only one who is surprised by this.

I also know this is part of my ongoing battle; to let go of the expectations of the past.... I have to confess that his 02 needs are something that I have trouble letting go of, they are such a big part of his life and have been for so long, that magic figure of 95% still looms large!!

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