The long night and day.

Last night was a long night...I managed to drink 5 mugs of coffee between midnight and 6am.Thought I best stop then as we had a near on two hour journey to the hospital. Eve was doing her best to convince us shed effinitely had a problem...keeping me in shape hobbling up and down the stairs all night...shame we dont have a through floor lift!!!! At 3 am I made more coffee and David ran a bath! we sat in bed listening to the beeps snorts and silences....I went back to Eve whilst David got in the bath.. I decided to sort some washing and answer some emails befre returning to bed leaving the Oxygen running and hoping that was enough to buy us an hours sleep...in fact dont think we closed our eyes for more than ten minutes at a time all night! at 5.45 i gave up...resettled her...turned off the machines and made more coffee. Thank goodness for friends in the same boat and MSN I like starting the day with Tia...shame we have to do it so early though!

Well knowing we had to be out the house soon after 8 am I managed to get myself motivated to sort Jonathan;s packing......the flip side to the concerns about the girls health has been that we have not had any spare energy to get worked up over the fact that Jonathan is camping with school this weekend as part of his Duke of Edinburgh Award. In typical Ostrich fashion I had not really even thought about the whole problem of whether Camping was the right move for Jonathan considering his chest issues, panic attacks...vulnerability etcetc....The head teacher rang me on Wednesday....the day everything was supposed to be in school in readiness, to ask if we had given good thought to him going....he convinced me that they would take good care of him....that if there were any concerns they would contact us and if necessary bring him home.
And so he went off to school this morning with rucksackof things he needed and a packed lunch and a sleeping bag and we waved him off without really another thought. It's 9 O'Clock and they havent rung yet!

So eventually after a few false starts David Eve and myself managed to leave the drive!
The journey to the hospital was suprisingly easy...little traffic and we found the way! yes we have been a few times before but sometimes we forget! We arrived in good time and the clinic was not busy...we seemed to be very relaxed....Eve was sat in her chair the quietest we have heard her in a long while. what would he say? We were a little dosconcerted that the consultant was not there...however his understudy was very nice, and very thorough. we talked through our concerns, went through the chronology of events and said about Arnold Chiari Malformation...he agreed the symptoms did fit. However he felt it was essential to investigate right through the stages of discovery....sleep study then MRI, then Naso-laryngoscope.
He looked in his diary and came up with a suggested date of 22nd July to do the scope...he felt that the sleep study woud have to be done on the 20th with the MRI possible on the 21st....I was not happy with her having 2 GAs within 24 hours, and neither of us felt it was safe to sedate her for the MRI and so he is going to try and organise the MRI for the 22nd under the same GA as the scope. He then said that if she ha any more episodes of apnoea we should contact them I explained she was having them 5 or 6 times a day....but that we were managing her. He did then consider her being admitted there and then...we felt that was possibly not the best idea as it is Friday, we have no support forRosie over the weekend and the risks that would create for the rest of the family were probably greater than the risks of waiting another two weeks. He was happy with that and our asurance that the local hospital would support us if we felt it was unsafe to cope at home.
And so we left. Feeling he had listened and was taking appropriate action.

As we were trying to find our way back to the main hospital we bumped into a friend and her daughter...we both knew the other was at the hospital we had exchanged mobile numbers, she had lef her phone in the car I had forgotten to put her number on my phone...so we were very glad to literaly meet in the corridor. We spent a lovely half hour over a coffee before going our seperate ways.

David and I headed towards home stopping at an Asda for lunch.
We are weary, we dont have any answers, we have two weeks to try and ensure we have good cover in place to deal with Eves admission. 2 of the nights Rosie is already in respite...we are requesting an extension to cover the four nights Eve will probably be in Hospital.

I want to sleep!

Night!