After 14 days in the hospital, Áine Clare returned home on the 16th with a PEG (percutaneous endoscopic gastrostomy) tube in her tummy to get her medications more easily in her. Yay! The medication regimen for Mom and Áine is off to a slow but steady start as we re-learn how to put meds in the g-tube and prep meds for the g-tube and keep the wound clean and shower instead of bathe. A little more time consuming, but we'll adjust, and with an assistant like Ciara it should be smooth sailing!
Thanks to Mary for the leotard suggestion! Nana is going to put snaps or velcro in the crotch to assist with changing and to keep Áine's hands away from the tube. (Crotch... such a yucksville word!)
Miss Áine Clare the night before the procedure in our very own room for the first time ever at UCLA!
The morning of the procedure.
Waiting to go to surgery. This was very interesting. I put "Sesame Street" on the telly which was at the foot of the bed. The speaker was at the head of her bed. And being the visually impaired child she is, she turned her body around toward the sound and "watched" the various monitors in her room. I thought it was an interesting display of her visual impairment, given that she can so often appear completely sighted.
A few hours after the procedure!
2 comments:
She is an amazing child for sure! I love that the smile is back and you now have some progress in the battle to get her back to the Aine of old. I am sure Ciara will be a helpful blessing to you during this transition period. Praying for you all my friend! And thrilled beyond measure that SHE IS HOME!:o)
Oh, so happy to read the update and know our girl is home where she belongs. And the smile made my day-as always.
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