Appointments galore I need a PA

So Sunday we visited the Disabled Fun Day at Market Rasen, It was good...the Hospice had had a special invite with a tea laid on to boot...it was very good. The forecast was for torrential rain but we missed all that, drove through it going and coming back but didnt get rained on at all.Fantastic!
Monday morning and everyone except Eve back to school and college...phew and breathe.
10 AM I had an appointment with a professional for Eve...I would love to tell you a bout it but for the life of me I cant even remember who it was with, much less the outcome! Never mind we had another at 1.30 with the CCN ( Community Children's Nurse) She is wonderful and after all the hassle we had with CCNs previously I have to keep pimching myself to believe how wonderful she really is!
We talked about how ill Eve has been and how little recovered she still is after almost a month. We looked at her beathing and her SATs and HR and decided she still had a long way to go to being right. CCN told me that they could get her an air mattress like she had in hospital if it would help. she also recomended real sheep skin which we use on the settee anyway.
We spent a good hour looking at the End of Life Care Plans and making sure we had got the wording right, making sure we could expect what we wanted should the worst happen suddenly.
We also talked about the slow general deterioration towards the end...talked about what this meant for David and I and what it meant for the other children. CCN offered to get the family bereavement support team invlved to help us discover what Joshua and Christina want.
It was a long hard afternoon and one that was made easier by the genuine concern and compassion of CCN.
Tuesday and 10 am saw the physio coming to see Eve, his visit was punctuated with phone calls from other professionals either relaying results, making decisions about MRIs or making appointments.
Eve had a really good session with her physio, her SATs were fantastic on 2 litres of 02 97 and above, her HR was below 100 and she dozed and smiled at him intermitently by turn.
Physio left and I had time to make some lunch before making and recieving more phone calls, MRI date is set for Jonathan although I am still not convinced they are right about his wires.
The CCN from Sheffield rang to talk about Eves reluctant recovery, notes were taken and part informnation..which was possibly worse than non passed back to me. Promises of talks with relative specialists and a promised phone call tomorrow from the other Clinical Nurse Specialist.
2pm and the medical training nurse arrived to look at Eves ventolator and talk about training the staff at school to use it so Eve can eventually go back to school and sleep safely!
Just as she left David set off to collect kids from school and I had a chance for 40 minutes peace....ony the phone never stopped ringing...more appointments, medical equipment to be picked up and someone somehwere wanting to speak to Anthony..I dont have an anthony.....not even if you ring me three times to ask!
Wednesday dawned the only day wit no appointments...hahaha!
Phone calls galore to sort out Eve's appointment on 22nd June,,,,,eventually it ended up with us needing to be in Sheffield at 9am...this will mean leaving home before 7am and therefore having someone here to do the rest of the morning. Thankfully despite our girls still being at Uni Our other faithful carer is willing to cover that for us.
The clinical nurse specialist who had visited Eve at the hotel last week rang to say they had grown a bug in Eves sputum and he was arranging our local CCN to organise antibiotics.
Amazing how quickly a day can go by,,,,I think I did mnage a few minutes doze at lunch time...the news didnt seem to make much sense anyway.
So to today. Jonathan's cardiology appointment where I was hoping for some explanation of the CT scan results, This I got....but I didnt want to hear what he was saying. The clinic was running two hours late, so our 10.50 appointment ran on to almost 1 pm. I had to go back to the bus and change Eve's oxygen, and fetch the charger for the suction as it isnt holding its charge, I was running out of suction catheters by the time we left as Eve was in fine secretion producing mode.
So on to the explanation. There is Ischeamic damage suggestive of TIA, mini strokes. There are two likely explanations of this, either the arteries supplying his brain are blocked/narrowed or there are blood clots being thrown off from his heart. Hopefully the MRI will give us some more information of where and how much damage, thn he will probably need Angiograms to pinpoint narrowing etc.
So not great news but at least an answer to why he has been having problems.

Tomorrow I have to take Eve in to school to start the training of school staff on ventolation 9.30 am. Then Next Tuesday we have the mamoth Children in Need meeting coupled with Eve and Rosies Statement reviews.
I reallly am tired, can someone stop the rollercoaster please!