Tomorrow we are off to Devon. So I suppose it is only to be expected that Mog has been awake and miserable all night. This morning quiet, floppy, withdrawn, unhappy and uncomfortable. Doctor's appointment this evening. My guess - urine infection. Doctor's assessment - chest infection. Here we go again...
So, off to Devon.
My packing - swimming things, clean clothes, a pile of books to read, food.
Little Fish's packing - swimming things, clean clothes, pads, two wheelchairs, one ventilator, big box of toys, feeding supplies, small pack of medications.
Mog's packing - swimming things (or possibly not now), clean clothes, pads, spare wheelchair covers, one wheelchair, one bath chair, nebulizer, suction machine, SATs monitor, feed pump, formula, syringes, spare bedding, body brace for sleeping in, wedge to sleep on, box of medications larger than the bag of clothing.
I drive a seven seater minibus for the three of us. I think I need a bigger vehicle!
Last time Mog had a chest infection we ended up being transferred from one hospital to another in the wee small hours. This is not an experience I wish to repeat. Last time we went to the Devon holiday cottage we ended up landing in hospital in the wee small hours of January 1st. This is also not an experience I wish to repeat. Perhaps it would be wiser simply to stay home. We won't be doing that. Whilst I have cancelled holidays for illness related reasons - Mog, Little Fish and I were due to be taking a boat trip the week Goldy died, I have made tentative and firm plans to visit friends and then had to cancel - I will only do this if the ill child is in hospital or at the point of admission.
My girls both have life limiting conditions. This does not mean, as some think, that they have conditions which limit what they can do with their lives; this means instead they have conditions which are extremely likely to limit the length of their life span. Neither girl is expected to live long into adulthood. One of these days, one of the many infections Mog catches, or one of her seizures, or something as yet unknown to us, will snatch her from this life and lead her into the next. She is unlikely to outlive me.
Living with that knowledge is something which different families do in different ways. We each deal with it in different ways, in the way which best meets our needs and the needs of our children. By explaining how we live, I don't mean to be criticising any family who makes different choices.
We could extend Mog's life by never allowing her to take risks. I could keep her home from school, keep her away from other children, take her into hospital at the first hint of an illness. For some children that is the right thing to do; for some children that is the only thing to do. For Mog it is an option, but not one we choose to take. Mog loves school. She loves to be a part of everything that happens there. We compromise - when she is having a bad patch, she does not attend full-time. When she is there all day long, the school staff ensure there is somewhere quiet for her to nap if she needs.
Mog's seizures are also dangerous to her. However the only way in which we can keep her from having them is to keep her unconscious. That would potentially extend her life, but at what cost? So we compromise again - she has enough medication to remove the worst of the seizures, emergency medication to deal with some of the more severe seizures which remain, and lives her life through an intermittent hail of other seizures and electrical storms.
Mog's chest infections at the moment are not usually serious enough to require oxygen. We have everything but oxygen available to us at home. We also have a SATs monitor, so I can be sure I will know if oxygen becomes necessary. We could stay at home, where we are close to the hospital, where we could very quickly get help if needed. But we don't yet know how serious this chest infection will be. If we do that, if I cancel this holiday, then this chest infection has suddenly become more serious. Whether or not it develops into a more acute illness, it has had a serious effect on Mog's quality of life. So I won't cancel. We will still go. When I have finished writing this I will look up details of the nearest Dr's surgery and out of hours clinic. I have a map showing all the relevant hospitals between here and Devon; it was drawn up by the medical staff at the general hospital when we left on January 1st last year so that we could get home safely. I'm a GirlGuide; I believe in Being Prepared. But I don't believe in taking unnecessary precautions. I would far rather Mog had a short, rich life than a longer, duller one. One thing which comforts me through the loss of Goldy is the knowledge that she had a good, rich life with us; that whilst she was with us she lived life to the full, to the best of her ability. I'd like to look back on Mog and Little Fish's time with us and know that the same is true for them.
So, unless Mog becomes seriously unwell overnight we will definitely be off to Devon in the morning. No internet access where we are staying, so you can expect silence from me until January 2nd. Enjoy the peace!
Wishing you all a fruitful 2008,