Monday 21st September was not a date I was lookiong forward to and several reasons for that. Probably a close run thing between Bethan leaving for Austria and trying to organise transport issues for the kids taking the second place. 1st Place firmly belonged to the reason for the transport issues. Eve had her follow up with the Spinal Surgeon. We knew this was going to be a day for difficult discussions and hard decisions.
Of Course Eve is still in hospital and the appointment with the Spinal Surgeon had to be cancelled...it was a phone call I had no difficulty making.
Bethan however did get her flight and is safely arrived and hopefully settling into her Hostel. Huge prayer request here. For her happiness and safety of paramount concern but also for permanent accomodation for her for the time she is there. I have mentioned before how precious Bethan is to us and we are going to miss her so much. She has been with us so much over the holidays and it is going to seem a long 3 months till Christmas. Of course our other prayer request must be for her real family who must feel this so much more even than we do. Prayer for her family to know perfect peace whilst Bethan is away. I am sure this is going to be an amazing experience for Bethan and an opportunity she will grasp with her whole being, I am sure, for her, the year will pass by far too quickly.
So instead of worrying about organising the transport for everyone else, we were sorting them all off to various schools and College and then I headed off to the hospital. At the weekend I was able to negotiate the journey between home and hospital in under half an hour, now with school and work back on the roads it took me so much longer, anxious to make it to the ward before the doctors round I was not the most patient driver on the road. Thankfully I made it to the hospital without incident and parked easily arriving on the ward in plenty of time to organise us into a comfy scrunchy cuddle on the spare bed. Eve was already up dressed and watching tv when I arrived and it was pleasant to realise the noise of her breathing was much much less.
Her fluid balance is still much more in the positive than would be normal, Her heart rate is still raised although nothing like it was when we brought her in, but above 140 for most of the time.
Her temperature was around 37 and she was just about awake, certainly managed a big smiley greeting before snuggling into my arms and closing her eyes.
The Doctors arrived and were pleased to see the improvement. Wanting to claim this confirmed it must have been an infection that was responding well to the antibiotics....glad as I am to see some improvement I am not convinced. However, I really dont know what they could say that would make me feel more confident. They are so wanting to give me the impression they are the doctors so must know what is going on and what they need to do....I would feel so much more confidence in them if they would openly admit she is a conundrum and they are working on gut feeling and wishful thinking rather than a knowledge of what is wrong and what will put it right.
The most senior Dr amongst the four said he felt it would be right now to change her to oral antibiotics as she is improving. I told him I was not challenging his clinical decision but I felt it would be right to consult Sheffield before making that decision, it took a lot of discussion and reiterating the fact I agreed in principle with his thinking but that as Sheffield wanted the IVs it would only be right to converse over stopping them. It took a while for him to agree to contact them and I was left feeling I ws being confrontational again.
Once the Drs had finished I went to do up Eve's dress only to see a pinprick rash appearing on her chest further investigation showed up some on her neck...The Nurse looked and agreed it was not blanching under pressure and went to call the Drs back....a few more minutes of looking her over and trying to blanch it and the Dr just said they would keep an eye on it.
So the day pressed on and I spent time talking with the Family Liason Officer trying to explain my emotional confusion over Eve's condition.
The Rsh was spreading down Eve's back but the nurse did not seem to concerned, I didnt know whether to be concerned or not. I dont kow if platelet problems are related to Mitochondrial disorders or not. I know they can be a complication of viral illness which seemed to be a glimpse of possibiliity of being proved wrong and this was maybe a virus that had caused the problem....hopefully!
Later a consultant came to see us, one I knew and liked and had confidence in. He immediately scored points with me by admitting first off that Eve's condition was a difficult one to follow and that noone would ever really know whether or not her condition this week had been improved by antibiotics or not. He went on to say that with her underlying mitochondrial issues the possibility of progression of disease playing a part was huge, and that we could not know whether or not she would make a full recovery to where she was before or not. This seemed to be the first bit of straightforward honesty from the Drs since admission. I immediately felt more confidence in him than anyone before. He felt it was probably wise to seek advice from Sheffield before changing anything, he aslo felt the rash was possibly part of the jigsaw that was showing the problem to be partly a viral infection. He would only become concerned more if they became larger spots!
The staff promised to phone me when they heard from Shefield and so I came home in time to meet with Rosie's bus.
The evening progressed, Rosie was happy but not eating, Iris was here till time for Girls Brigade and then Iris and Christina left, dinner was cooking, Joshua had prepared the veg to go with Roast Chicken and very nice it all was too. Rosie in bed and medicines done.
A chance to offload with a friend, a wake up call to the fact our fantastic care is ending, and another offloading chat and soon it is time for Christina and Iris to return.
No call from the hospital and no news from Sheffield. It's time to go to bed and yet my head still spins on...
Monday loomed! Monday Dawned! Nothing much happened as planned!
Too much happened that wasnt!
Tonight I want to end with a reminder to pray for Bethan and her family. All very precious to me!
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