Yesterday a camera was put down Amber's lungs. Isn't that amazing? The doctor was extremely impressed with what he saw and said everything looks good and better than he expected. Tomorrow they will try removing the ventilator again.
For those of you that don't know, Amber has Rett Syndrome. She was born with it, but we were not aware something was wrong until she was about a year old. By 18 months old she was diagnosed. Amber was a perfectly healthy full term baby. She started regressing around six months old, but we didn't totally realize it until months later. (This is what happens w/Rett Syndrome). Amber received a g-tube at 4 years old because she couldn't chew and/or drink enough to sustain her. Amber had the back surgery last week because she was having trouble breathing. Her organs were being crushed and moved around. She could no longer sit up on her own. Many girls with Rett Syndrome have this surgery.
We knew this wasn't going to be an easy surgery. But the surgery itself hasn't been the problem. Her breathing on her own is the problem. When we hear "ventilator" we think the worst. But it isn't. This isn't the end for Amber, it's just the beginning. She's going to pull through this, it's just taking time. I am happy with her care and with all the doctors and nurses. We couldn't be in a better place. We have no guarantees what will happen tomorrow. I am just praying and believing. By far, the day they took her off the ventilator was the worst. I am extremely fearful and anxious of this again. I have to take control of my thoughts constantly.
Amber has started expressing emotion as of yesterday. She is starting to cry, but not for long. The more we talk to her, the more she cries!! Poor girl. I know she is extremely mad at me. They are being generous with the medication again and I am happy for that. But tomorrow she can't be drugged up and taken off the ventilator at the same time. It's a love/hate thing for me right now.
Thank you again for your kind words and prayers.
feeling hopeful.
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