Surgery update

“When you have come to the edge of all light that you know and are about to drop off into the darkness Of the unknown, Faith is knowing One of two things will happen: There will be something solid to stand on or You will be taught to fly.”

This is Zeta pre-surgery.  Her daddy said she looked as if she had magical powers.  He is not always impressed with how I dress her lol.

Zeta went through her cleft repair/ENT procedures like a champ!

BUT...Who would have thought that one of the relatively more simple procedures would cause so much anxiety and exhaustion?

The doctor let us come home Saturday.  By 3AM Saturday morning I was wishing we were still in the hospital.  I'm still not quite sure what happened, but Zeta started making choking/suffocating noises and then she started turning blue - while on  the ventilator.  I tried suctioning her, but nothing seemed to be stuck in her trach.  She continued to fight for air and started turning a deeper shade of blue so I changed her trach and called for Stevie to come help me.  All the while I kept telling myself, "We need to call 911, we need to call 911." - but I couldn't stop what I was doing long enough to pick up the phone. Finally, after resuscitating her with the ambu-bag for several minutes she calmed and started to pink up a bit.  Needless to say I didn't leave her side the rest of the night! I suppose there is a lot of swelling from the surgery and all the injections.

Last night we managed a little better - except for the fact that her trach came out a few times.  She desats (loses her oxygen saturation) almost immediately now if the trach comes out- again I think due to the swelling.....

I've also been convinced that I've been seeing the smaller seizures, but today has been better so hopefully they are beginning to resolve.

I feel like crawling in a hole and sleeping (and not using my brain) for a while right about now......

Zeta has to wear no-no's on her arms for the next 2 weeks. These are braces/restraints they use to keep her from putting her fingers in her mouth.  It could probably go without saying, but she can't stand it! 
She has also figured out how to escape from the braces.  They gave us two different types and she has managed to get out of both - more than once - regardless of who puts them on...

So, today.....her nurse and I have added some socks and leg-warmers to the mix. She isn't too thrilled about this either.  By the way, she just managed to get out of one of those too as I'm writing!

Today, I am praying we have no more blue spells, no more seizures, and a speedy recovery!

Thank you for continued prayers!!