Spinning plates, Contingency plans and reassurance.

What a day! It actually started quite well. I had managed to sleep between Eve's two hourly turns. Aware enough to thank the staff who saved me getting up and turned her for me but dozy enough to turn over and go back to sleep once sure she was ok. Then at 6 I got up and washed found a clean top and felt ready to see what the day had in store.
Yesterday I had made an appointment with the hairdresser downstairs in the foyer to have my hair cut. She was coming in at 8am to do me before the other customers arrived. So I was pleased Aeve was settled and comfortable. She had her Clobozam at six and previously it had given her 6 hours seizure free. So hopefully she would be fine. The alarms were turned up full volume so staff would know if she had a problem and off I went at 7.45. It was nice to escape and be pampered for half an hour. Eve was still asleep when I got back and our wonderful carer Lucia had arrived not long after I left.
Once Eve had had her regular medicines and we had a drink we decided Eve needed a good bath and hair wash. We got a baby bath of bubbly water and gave her a really good bed bath and then changed the water to wash her hair. Eve loved it and we had lots of precious smiles. Then Lucia sat to have cuddles whilst me and Eve's nurse changed the bed and got rid of all the wet linen.
Then it started. Subtle twitches, eye flicking and facial twitches. We set the timer running whilst nurse went to seek a Dr for advice.
18 minutes on Eve was fitting consistently and Midazolam was given. I felt very deflated. Things looked so much better till that moment. Although we had had to call an engineer to the ventilators humidifier which was having vast temperature swings. A very nice man spent ages checking it out and comparing its results with one that was working fine. He couldn't find a fault but once reassembled it has worked fine ever since.
So Eve was back in bed but not looking right. Her eyes weren't closed but weren't focussing her face was not relaxed in slumber and her hands were posturing oddly. Two hours after the Midazolam we were sure things were not right. Nurse, Lucia and Mum all testing her tone, trying to get a response and each coming to the same conclusion. Eve was still fitting. Nurse went for a thermometer. Eve had spiked a spectacular temperature. 38.7. Why?
Soon after that the fitting became more obvious and advice was taken from Eve's consultant who thankfully was still around. IV lorazepam. Unfortunately although the response was almost instant it was very short lived and Eve was showing signs of seizure again before 6pm. At this point it was decided to give her next dose of Clobozam slightly early. This has appeared to keep Seizures at bay so far. Alongside her 8 0'clock regular drugs it is now 11pm and the sleep appears to be natural.
In the midst of the evening I was able to speak to the Hospice and ask the questions currently weighing heavily on my heart.
If this situation becomes end of life care can the hospice meet the needs of the whole family?
I left the conversation feeling fully assured that the hospice would meet our needs in those circumstances. I can now put that thought to bed until it needs awakening.
Meanwhile we have difficult complex overlapping needs going on.
I am virtually confined to Eve's hospital room. Because she is totally dependent on her ventilator via her Tracheostomy the children's ward at our local hospital has to have me or a fully trained carer present with Eve at all times. So other than an occasional couple of hours where David or a carer sits with her the loo opposite her room is as far as I go. This means the rest of family life is left to David. I have managed to shop for easy cook foods and plan meals. Yesterday I went home whilst Lucia was here and put a casserole in the slow cooker, had a quick check for urgent paperwork and managed to do an abbreviated payroll that has resulted in wage slips for the carers. Cheques are now written and the carers will get paid.
I also managed some correspondence and phone calls from my phone, resolving some issues that were becoming pressing, talked to Guide Dogs to arrange an aftercare visit for Jishua and Norris after Christmas to extend their walks around the school vicinity into Worcester City Centre. I managed to resolve an issue with Eve's supplies and hopefully organised a nappy delivery for tomorrow. Put off the oxygen delivery and written shopping lists so those at home can eat over the weekend.
One thing I can't resolve until after tomorrow's Neurology appointment is what we do about Monday and Tuesday next week. The risk of dropping some of those spinning plates is huge.
Monday 10.45 we have an ENT appointment at Sheffield Childrens Hospital to review Eve's Tracheostomy. She has a leaky stoma and we wonder if the tube needs upsizing. Our plan was to go from SCH to Worcester. Staying at a Premier Inn overnight to be there for Joshua's parent teacher consultations Tuesday Morning. Followed by the Christmas Concert and then bringing Joshua home. This now is all at risk. If Eve isn't well enough to travel then the ENT will need to be cancelled. As will Premier Inn. However I do need to be at New College by 9.40 am on Tuesday. There are a couple if possible scenarios. If Eve gets transferred to Sheffield then I can get a train from Sheffield to Worcester. If she is still here then it will be juggling carers to have full cover here and allow David and I to drive to Worcester. We cannot make firm plans until we know the plan.

I know the plans I have for you saith The Lord. Plans to prosper you and not to harm you. Plans to give you hope and a future.
Jeremiah 29v11