Thursday, May 31, 2012

Another update.

We had 2 days over the extended weekend that Wyatt was seemingly not seizing multiple times a day. For those days his body was as calm as we've seen for the last 8 weeks. But it only lasted for 2 days. The seizures have returned, though not quite as frequent or forceful as they had been.

His speech is slurred and his breath weaker, it now takes a great deal of effort for him to move and control his body even in the simplest of ways. I've even been able to give him kisses without him wiping them off. And those who know our boy well, know he always wipes them off, whether he wanted a kiss or not. He's been wanting to be held, asking to snuggle and be close. He's sleeping a lot, 19.5 hours within the last 24hrs. His pain is ever present and worsens with increased seizures. At times his heart rate has dropped as low as 34 beats per minute this week. Low heart rates we're not new to, but that low is a worry. 

Since the last update, we've adjusted his clonidine dose in an effort to raise his blood pressure and heart rates. In addition to the antibiotic course that was started Saturday, an IV anti-fungal has also been added to fight back the yeast that is now very thickly coating his mouth and throat (and through out his body.) With all the recent changes made to his meds within the last 1-2 weeks, we're currently running on a very tight med schedule.


Most simply stated...it's been so hard watching him decline further. My heart breaks a little more each time. We just pray for more stable days to come again.

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5 comments:

  1. Praying for you all, Ash. My heart hurts to hear of his struggles.

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  2. Most simply stated...it's been so hard watching him decline further. My heart breaks a little more each time. We just pray for more stable days to come again.

    *****

    Oh, yes. So yes.

    Praying, hurting with you, even from a distance.

    I am just so sorry.

    Praying more,

    Cathy in Missouri

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  3. (((((((Wyatt and family))))))))))!! I truly hate Mito and what it does to the kiddos. HUGS and HOPE for a CURE in 2012!!!

    Praying always

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  4. My thoughts and prayers are with you and your beautiful family.

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