They said she will have her first casting done on her left club foot next Tuesday. I called the orthopedic doctor and she's set for 7:45am. We have to have a new cast put on each week for 5-6 weeks. But it appears we can go to Willoughby instead of Main Campus. Dr. Gurd is out there on Wednesdays. It's about 20 minutes closer to home.
The doctors said she's stable and weaned her off her heart meds today. She is and possibly will be the rest of her life still on calcium. They were able to give her some through her feeding tube and some through the IV. They kept mentioning the DiGeorge Syndrome this morning. The smaller test of the 2 the genetic doctor ran on the DiGeorge came back negative. The other, more detailed one takes a week to get back which I believe is Friday. Dr. Stewart did say that even if the blood work comes back negative, he believes Dr. Moran, the geneticist, will still give her a clinical diagnoses of DiGeorge Syndrome. It is covering even her heart defect besides the club foot, spine, anus, ribs, calcium deficiency, weak immune system, and whatever else I'm currently forgetting. It all fits together with the missing thymus gland. We'll see.
The nurse practioner from the cardiac step-down unit said that Cayla doesn't need to be in either ICU anymore since she is doing so well. It's just her feeding. The lactation nurse said she's going to have Cayla try to nurse just to learn how, not for full feeding purposes. So when the time comes she'll be a little more ready.
I almost got to wash her hair today, but there was so much going on in the PICU that our nurse was called to other patients. No big deal when there's others needing so much help. We'll try tomorrow to get a good hair wash... but I will be glad to be off this floor. It is a little intense and hard to see. Children crying uncontrollably, nurses and doctors running by your room to get someone into emergency surgery, parents looking lost, confused and hurting for their child, and just not a very peaceful place... today especially. Our room was exceptionally peaceful, but not so for others. Dr. Stewart ran by most of the day.
Looking forward to see what tomorrow holds for our family! My verse from today.
"As for God, his way is perfect: the word of the LORD is tried:
he is a buckler to all those that trust in him."
|Cayla on Tuesday with her big sock glove to help her behave and you can see part of her bruise on her arm.|
|Cayla on Tuesday closing her eyes everytime I tried to take the picture. They were actually open... You can see her nice central IV there that Dr. Stewart put in.|
|Today, with her eyes open but with the furrowed brow. She had that look every time her eyes opened... She was trying to focus too.|