Sunday, April 15, 2012

Second Easter in Hospital

Queen Teen has had two Easter baskets from Lucille Packard Children's Hospital, which is two baskets too many. The first Easter we spent there was after her feet surgery when she was 11. The second was this past Easter.

We finally heard from the neurologist who wanted her admitted to the hospital immediately for tests, so we dashed down to Stanford and spent three days there. Queen Teen was low on glucose and electrolytes, but a couple days of IV fluids brought the color back to her cheeks. Our new neurologist is excellent and I have a lot of faith that he'll be able to help us sort out the mystery of Queen Teen's disorder.

Disorder. Syndrome. Why can't I call it a disease?

We're home now, waiting for the results of all those tests, including an EEG to check for possible seizures. Her strength is poor and stamina worse, but she's slowly feeling better (I can tell she's feeling better because she's getting bossy again). Eating is still tricky and some days she has trouble swallowing juice. Other days she can eat Mac and Cheese with gusto. Just like everything about her neurology, her symptoms come and go. She's still not strong enough to go to school a full day, but maybe in another few weeks? Time will tell.

That's always the answer: time will tell. What will happen next? Time will tell. What does she have? Time will tell. What can we expect? Time will tell...

I found this great site that explains what Queen Teen has: What is Mitochondrial Disease? The United Mitochondrial Disease Foundations is an advocacy and resource organization which also raises funds for research. With a long list of possible Mito diseases, why is Queen Teen such a mystery? Why can't we discover her disease's label?

And why do I need to know so badly now?

I could lose my daughter; I know that now. Am I strong enough to go through this with her, to be there for her no matter what may come?


Cybele Baker said...

You will find the strength and we will all be there to hold you up when you need it! XOXOXXO

dlefler said...

Oh, so tough. I want to reach through the computer screen to give you a hug. To HELP somehow - I wondered if mito had been considered for QT. I've actually had parents ask me if we've considered that for Nolan since he has more than 3 systems affected - but I've always felt he wasn't "sick enough" to meet the diagnostic criteria. Now I'm finding people who have a vast array of symptoms and severity - have you seen Laura's Medical Journey? She's an adult with mito, and her symptoms began when she was a child. There's also the parent-to-parent board, and there is a wonderful forum for kids with undiagnosed disorders and an entire forum for mitochondrial disorders. I'm on that forum because they're the only parents who have the wide range of experience with things ranging from g-tubes to hearing loss. They've been rather helpful in more than one way of late.

I hope you get some answers, at the very least. Maybe some way to work with the symptoms and manage things better with clearer knowledge of what is going on. Hugs to you.

Shannon Drury said...

I am thinking of you and of Queen Teen daily. I so wish I were a neurological Nancy Drew and could solve this mystery with her calm & panache, but alas, I am only a wound-up mom at a keyboard clicking your links and muttering "What the fuck is mito? Why can't these doctors fix it??? This is the 21st century goddammit!"

I will be turning off the computer soon to do my morning meditation--expect much lovingkindness coming your way.

Barbara said...

What Cybele Baker said. Verbatim.

RobinH said...

I have been thinking of you often, wishing only the best for Queen Teen's health and that you are surrounded with love and support during this difficult time.

Anonymous said...

Thinking of you and Queen Teen today. Not knowing the status, but hoping you are getting answers and seeing improvement.