Today we met with a new dr. He's from Oxford. I tend to use abbreviations on here for doctors names, as I feel maybe it's not my place to say their full names. Especially if I'm gonna slate them. Anyway this new dr, who I will refer to as dr p, is gonna take a slating, but he has such a funny name, I can't help but try to share it with you; his first name is the shortened version of Micheal. His second name rhymes with his first name, and is also the name of a kind of fish! ( beggining with a P) lol . Guesses to my inbox lol
Mad Auntie Mary and Jamie came along with us today to take us and for moral support . I needed it today. I was hoping for no more bad news, but suspecting we may recieve the PDCD diagnosis. I also suspected that they may want to do muscle biopsies.
So far, all the results are inconclusive. What we do know, is that Hope has a mitochondrial disease :0(
They have still not yet ruled out PDCD :0(
They still do not have all the results from the previous lumbar puncture. But they, suspect the results will be inconclusive.
So, what next? Dr P wants to admit Hope to Oxford, to have more blood tests and ANOTHER lumbar puncture. As if that's not bad enough, he wants to anaesthetise her and do muscle and skin biopsies.
I questioned the increased risks of anaesthesia associated with those with mitochondrial diseases. He admitted there is an increase risk, but there are more risks due to a) her being a baby, b) her brain abnormalities, c) her being eplileptic. As far as I'm concerned, that's a lot of risk factors. He, felt the risks were still small. He said if it were his baby, he'd take the risk. Yeah right!
And the point to all this?
Will they have definitive answers? Not necessarily.
Will they be able to make her better? No.
Will this change her treatment? No. All they can do, is treat the symptoms ( which is already being done).
What it MAY do; is give us a name (of a mitochondrial disease).
And if we know that, we MAY have a better picture of what the future may hold... Tell us how long we might have her for.
2 years? 5? 10? 14? It's never ever going to be enough. Whichever one of these diseases it is, it's not going to be long enough. But, I don't want to know. For weeks I have had in my head 2/3 years. With PDCD that's about it. In some cases longer. But really, it's awful to think that's all. If it's that , I don't want to know. It spoils the tiMe we have. Also, by not knowing, I am not decieving Dolly and Moo. Anyway, who really wants to know?I mean... None of us know how long we have....but if someone were able to tell you, would you want to know? I wouldn't. So, I guess the moral to this blog is; live each day as if it could be the last! Enjoy!
I'm certainly enjoying each day we are blessed with Hope's presence, as I am all of my kids.
I have ( and Chris agrees) decided to refuse these tests. They seem pointless. They serve to purpose or benefit to Hope or I. They only carry risks and more pain.
So that's it, dr p. Enough is enough. Leave my baby alone. She's my baby, not your guinea pig. It's quite empowering! No more tests!
I may change my mind along the road. Maybe if Hope starts getting sick. If, along the road we decided we need to know more. If, at some point it seems as though there may be some good come from knowing. I will discuss this decision with dr ch of course, but i think he'll understand, Even if he doesn't agree.
1 week ago