OK, Eilidh and her sleep apnoea; it's been nearly a year since I last posted about it and where the year has gone, I don't know! I recently got an email from a lovely mummy of a little boy who has SMA and sleep apnoea and she wanted to know what happened to Eilidh and her huge tonsils...
Well, the story until the night before her admission to hospital last May is here, here and here, but here's a quick synopsis:
Eilidh had always been a big snorer - even before the SMA diagnosis - as she had huge benign (normal) tonsils which touched in the middle. When the news of her muscle weakness arrived, our consultant quickly referred us for an oxygen sat monitor overnight - she dipped down to 92 % about 9 times an hour and that was when she was well and hardly snoring at all! We were referred to ENT and because she was only 18 months at the time they left her for 6 months thinking that the desaturations might improve - to be honest I really don't think that the ENT surgeon really understood about SMA and the effect on respiratory function. Needless to say, her snoring never improved and,luckily, she escaped the winter with only one chest infection and no sore throats.
And now onto her stay in hospital... Eilidh's admission to hospital was, as you can imagine, worrying for D and I as parents but I also had the added awareness and knowledge that goes hand in hand with being a doctor (who had worked at the hospital for 2 years). We stood by each other - together we are strong - and we carried on, all the time hoping that the decision we had taken to let Eilidh undergo the operation was the right one, that it would make a difference.
It took the surgeon 12 minutes to remove her "big, bad tonsils" and "huge, bad adenoids". She was only away from us for about 30 minutes before we rejoined her in recovery where she was monitored for 2 hours. By the time we got back to the ward it was already clear that she wasn't snoring and she was sleeping on her back and not snoring! She began to wake up and my Eilidh was back, happy and smiling and eating her weight in Quavers and ice cream! We were kept in overnight so that her oxygen saturations could be monitored; I'm glad that we had been as she vomited repeatedly, but by morning she was well enough to be discharged and we were heading home.
So Eilidh stopped snoring - well, not entirely! she does still snore when she has a cold, but who doesn't? - and started sleeping better; this meant that she was no longer sleepy during the day or crabbit or needing a nap. We knew that we had made the right decision - the procedure had been a success. It wasn't until November however that this was confirmed: Dr Neuron requested another oxygen saturation monitor for overnight and Dr Breath gave us the brilliant news that the study showed no evidence of any desaturations - times when her oxygen level dipped. We had made the right decision and the relief was immense; Eilidh was a new and better, non-snoring Eilidh.