I've spent a lot of time recently wondering when this is all going to end, and we'll get a certain degree of normal back into our lives.
I'm not sure we ever will.
Michael is still in Oxygen at night I guess we were clinging to the hope, that once he'd had the sleep study done, the tonsils and adenoids removed, that we'd be laughing.
We could after 7 years and one month finally wave bye-bye to the oxygen concentrator that sits in the kitchen.
It would appear it's not to be!
This is Michael taken at the end of March 07 undergoing a sleep study. The aim of the study was to discover what is happening with Michael whilst he's asleep. Why at 7 years of age he continues to need nocturnal 02??
The results of the study showed that Michael has 'moderate to severe' obstructive sleep apnoea - 17 episodes an hour recorded in the first two hours.
It also seems to have picked up some other issues too.
Michael went into hospital to have his tonsils and adenoids removed, (April 07) we'd been advised that Michael would need to stay in over-night and that we would be able to leave the following day!
Unfortunately Michael ended up having to have a probe fitted in surgery to support his airways, this automatically added another 24 hours to our stay.
Michael not being able to support his airways even with the probe, added another 24 hours to the stay. Forty Eight hours after surgery he still couldn't maintain his airways whilst sleeping, at one point he was in 15 litres of oxygen through a face mask with sat's of 88%.
Michael finally came home 4 days after being admitted.
We were warned that there was a slight risk of Michael experiencing a re-bleed, we were told the odds of this happening - less than 1%. To be honest we thought very little of it, odds of less than 1% are nothing - Unless of course you are that less than 1% and guess what!
We were!!
Another weekend spent in hospital!!
We've also had a visit to the Surgeon who repaired Michael's boy parts and put them back where they should be. The left one seems to be fine, unfortunately the right is higher than it should be, so we have to go back in 6 months time to make sure that it hasn't made it's way back inside his body......if it has it'll mean surgery again!
We also had an interesting if not scary discussion with the surgeon, during our clinic appointment. He initially thought we were there to discuss surgery to remove the damaged area's of Michael's lungs - until he took one look at the CT scan and stated there was no way he could possibly remove the damaged lung tissue - there is just simply far too much of it!!!!
Since I last posted around here, we've had a visit to the Respirologist and received the results of Michael's Lung Function Testing. Michael has 40% of the expected Lung Capacity for a Child his age, in one lung and 50% in the other. He therefore has 40-50% of the expected Lung Capacity for a 7 year old.
The Plan is that Michael will have Lung Function Testing every year; to ascertain how his Lung Function is, to make sure that it is not deteriorating. Michael's lungs have done all the growing they are going to do, and although his lungs will grow insize with him, the internal structures of the lungs, have finished repairing.
Unfortunately this means that when Michael is 16 he will still only have 40-50% of the expected Lung Capacity for a child that age.
I understand that this should not be too much of a problem, you can still have a good life on 40-50% lung capacity. But one thing it does mean is that Michael has limited lung reserves when it comes to colds etc. We have to try to keep him as cold free as possible, and keep everything crossed that he doesn't develop Asthma.
I guess the only thing that bothers me, is that we didn't get normal in terms of lung development either did we?
