A Run for Our Money.

Little Celia-Boo has pulled out her bag of tricks and has played a few cards.

We started her on her pulse-ox as soon as we got back from vacation.

Oh, did I mention we spent a week in the VA mountains with family?!?

Oops.

It was a great trip!

We got home and the first night, while she was completely at rest, her alarm went off because her heart rate was in the mid 140's.

As she was falling asleep.

At first, I wasn't too worried because the alarms have not gone off during the night, so I assumed it was a fluke.

Can I just stop here and say that I LOVE TOE GLOW??

It tells me if my daughter is breathing or not.

Cross off another worry from my list.

My Christmas list may or may not include Toe Glow for all of my other children.
Breathing is good.
Very good.


Anyhoo, today while she was in school with her teacher and therapists, her lips turned blue.

I got the pulse ox and she was in the low 80's ( above 90 is considered in the normal range) but quickly brought herself back up although her heart rate stayed high.

Just sitting in her wheelchair with her eye gaze computer. Nothing strenuous.

Her respiratory therapist also stopped by and thought we should get her pulmonary Doc on board.

I spoke to her Dr. this afternoon and she thinks:

A) Celia may be getting sick (no signs though) and her heart rate is up due to that.

B) Celia is dehydrated which can elevate heart rate. (Plenty of wet diapers, but upped her ml's of water just to be sure)

C) This is her new base line. (not good) If it is her new base line it means that her heart is working hard to deliver red blood cells to her body because her lungs aren't producing enough oxygen. If this is true, her pulse ox can say 100% saturation but it is a false reading because her heart is compensating for her lungs.

Our plan is to watch her and record her de-sats and heart rate spikes and what she is doing when it happens. So far, she has had 9 de-sats in the 80's that she brings herself out of and 8 high heart rates that trigger the alarms. All since 11:30 AM.

On Friday we will re-group and see if she needs oxygen, a visit to her cardiologist or what the heck we are going to do.

Oxygen can have the opposite effect on mito kids. It can be too much for their bodies to process and therefore they become toxic. So we have to proceed carefully.

In the meantime, she will wear pulse ox 24/7 because we just LOVE to have cords hanging from every orifice of her body.

Annndddd, there shall be NO COMMENTS on how exhausted we look. Or that I need to color my hair.

I am EARNING these gray hairs people. I may just decide to wear them proudly.

Comments

  1. AmyNovember 29, 2012 at 8:00 PM

    Give her a hug and kiss for us and know that all of you are in our prayers.

    ReplyDelete
  2. KNovember 30, 2012 at 3:08 AM

    Ah, the things our special needs kiddos throw at us!

    ReplyDelete
  3. Lee AnnNovember 30, 2012 at 9:22 AM

    Wow! Goodness gracious don't really know what to say except that I think about you often and pray for all of you!

    ReplyDelete
  4. NavhelowifeNovember 30, 2012 at 9:44 AM

    Oh goodness. Sending love and prayers your way.

    ReplyDelete

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