Saturday, July 08, 2006

Home again!

Well, luckily we didn't get kept in as there is nothing new going on with William and he is OK in himself. It seems that the seep study has highlighted an ongoing problem. William has sleep apnea. His sats drop down to 60% in his sleep so, he is back on oxygen at night! This is so dissapointing as we were so pleased to have him off - it was one good outcome this year! He is still much better than he was when he was before his Nissens as he was on up to 3 litres 24 hours a day and still desaturated overnight! He is on 1 litre when he sleeps for now but it may have to go up and he may need C-PAP or BI-PAP (machines delivering air by mask) overnight. He will have a full sleep study at The Brompton to see if the oxygen is sufficient. The good thing about this is that he is now going to be reviewed by the neurologist locally and will have an MRI scan and ECG to check his brain. It is increasingly felt by eveyone that he has neurological problems with co-ordination. It may be that the apnea is structural if some of the muscles in his upper airway are less toned than they should be. This could be resolved by surgery. His problems may be more neurological in that his brain fails to send a signal to breathe for a few seconds. It is clearly all related to his general condition and "syndrome". We were enjoying Hope and Ellie's school fair (although my stomach was in my boots as I was waiting the verdict on the sleep study and the amount of time I was woken by the alarm told me all was not great!). We then got the call to go to the hospital so came home to pack in case we stayed in. He had a chest x-ray and bloods and the doctor made sure he was well in himself.

When I was packing for the hospital, I didn't notice the TPN fridge seemed warm. When I went to switch the oxygen machine back on after so long, I was horrified to see the TPN fridge plug off!! The children went silent about it all but Hope dissolved into tears in the bathroom and it turned out she had, unwittingly, switched it off when she tried to make a hot chocolate with her frother. She changed her mind and didn't use it or the mess may have alerted me to check things! This was yesterday, so the TPN fridge had been off a day and a half - thus a week and a half of expensive TPN wasted. So began the next panic - no fluid for William who has been off since 12.30 lunch time. Several phone calls later and I was asked to take the TPN prescription to the Mayday so they can fax it to Chelsea and Westminster to confrim the electrolytes while I wait for it to be made. Paul is singing at Glyndeborne tonight so no way could I wake th children up and get there! So, poor Paul will get in at midnight and drive to Chelsea and Westminster to get his fluids. Why does all this happen when he is out late?

I was especially not going to wake Wills up after the performance we had getting his oxygen on. I thought it would be best to wait until he was asleep - wrong! I ended up terrifying the poor thing. Putting the nasal prongs on ended up waking him into a semi-awake state, awake enough to feel like he was being strangled but not enough to be comforted. In the end, he screamed and screamed. The only thing I could do was wake him fully and distract and comfort him with his beloved Thomas and James (engines) and a lovely book about them until he finally fell asleep again.


Shadow said...

Bless him.

Great you've not been kept in!

Where you find the time to post on here after a day like that I've no idea. Sarah, you're amazing!!
I hope you find some YOU time regularly amongst all of this.


Tinypoppet said...

Oh Sarah, it never rains but it pours! Keeping you all in my thoughts, I hope the O2 will be sufficient for keeping Wills sats up, he is such a tough little man, and you are a tower of strength, I dont know how you do it! As Shadow says, please get some rest whenever you can, thinking of you and sending an abundance of hugs xxx