Wednesday, 13 April 2011

On our way to the hospital of doom and gloom


We are on our way to the John Radcliffe. The hospital of doom and gloom; the hospital that told us that Sam had 50% chance of surviving his CDH, then 30%, the hospital that told us that Hope had extra fluid in her ventricles, then that she had a small cerebellum, that she'd most likely never walk or talk, that if this was his baby, he'd........... Without question.

I already have butterflies. Chris decided that this morning was the best time to first mention that he thought these tests were pointless, and aren't going to change anything anyway. this is a battle I've been having in my head for nearly a year now- since we last pulled out. Part of me wants to pull out again, but it's too late... And it does need to be done. I hope in a way, that we don't get any answers... but hope that we can rule out some of the more scary mitochodrial disorders. I hope with all my heart and soul and every cell we don't get a diagnosis that carries a life sentence with it. I don't want to know!!!! I guess I'm also hoping that we may find out some positives, that it's not all doom and gloom, that there may be something that they can try, a new medication, the ketogenic diet perhaps, miracle cure would be nice!!!

We won't find out today. It'll probably be weeks, or months. Most likely, today will be the first of many visits, perhaps trips to Great Ormond Street will follow.

Today she will be sedated for the first time. In a way I'm glad she will be, because the last time she had a lumbar puncture, she was awake, and it was such a traumatic experience for us both. I'm hoping they are just planning to use a short acting sedation like midazolam, and not general anaesthetic , but the fact we've had to fast her since midnight suggests the latter- though hopefully I'm wrong.

Poor lil thing, I've not even been able to give her her epilepsy medicines. I just hope we can get them into her early enough for it not to have negative consequences later on. Ironically, today, she does seem to be pretty much better. Though I suspect later, she won't be such a happy honkey.



Lots of love, luck and prayers needed please!

I'll update again later

Xxx

5 comments:

  1. Love love love, luck luck luck and lots of prayers and positive vibes coming your way. I was thinking of you in the night for some reason, and was going to text three buckets of the L stuff your way. Then your update on here pops up... what a day, and what memories that place must hold for you. I hope that today goes as well as can be, that Hope's not too upset by the tests and that your beautiful girl is smiling that gorgeous smile of hers again before too long xxx Charlotte xxx

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  2. Thinking of you and sending lots of hugs x

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  3. Thinking of you today, I hope you do get some answers, You're a strong mummy and will deal with whatever the answers are. Lisa xx xx

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  4. Thinking of you and little Hope today Caroline. Much love coming to you
    Love Debbie
    mum to Joel
    xxxxxx

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  5. Oh Caroline, I hope it all went as well as it could yesterday and that Hope was comfortable during and after it all. Sending you all so much love and praying that you get some really positive news very soon. xxxxx

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