The doctor's advice was to continue the trials of the CPAP.
Bill and I came at 10 am. She was so happy to see her Daddy! He took this picture of her.
|It is hard to see the little french braids across the top of Amy's head.|
Why couldn't I see then that she was failing? The sunken eyes and the dark circles? Why didn't I know that she was so frail? The doctors were all so optimistic. No one ever told us the worst that could happen.We were all so foolishly optimistic. Deep down I was so very scared, but I didn't let on. I told myself to believe what everyone said. "She was going to get better."
We had a good afternoon and evening. It was wonderful to have Bill back to take care of things.
Day 12-in ICU. Looking back over the notes that I and my daughters kept of the month, I see that today was some kind of turning point although I didn't realize it at the time. I started questioning the doctors and I wasn't so sure they understood all that was going on with Amy.
They had told me that if she needed to have a trache done, it could be done in the room. Now they were saying that she needed to be in an operating room for that to be done. If she needed one so badly, why were they waiting? When the doctor came in I questioned him, and he didn't have any answers for me, but he said they would take out the intubation tube that day and see how her breathing was on her own, without anything but an oxygen mask. But if she didn't breathe well they would have to intubate her again. That's when I lost it and said that if they needed to do the trache she should not be intubated again. To put her through that pain again was not right. He said he was "sorry but that is how things work. The OR rooms have to be scheduled, the Dr. has to cancel patient visits and chances are she might not need to be trached."
It was a business to them, not personal patient care, just a business.
Another hour passed and then a young resident (new for that week)came in and said they were taking out the tube. He prepped Amy and watched her numbers as they started to rise. She was getting agitated and I imagine she was scared. The resident left to consult with the doctor and when he came back they had decided to not try to remove the intubation tube, but just scheduled her for the tracheotomy the next afternoon.
Maybe I should have demanded they try to see if she could breathe on her own. Maybe I should have been more firm in getting answers to my questions or maybe I didn't ask the right questions. I don't know and it doesn't matter now anyway.
Amy cried that evening. It about broke my heart. She was so weak. The nurse gave her some pain meds and I put on Veggie Tales for her. She calmed and then more crying. I read to her, sang with her and then put on some soft music to listen to. She was contented but still wide awake after midnight. I finally crashed. The nurses said she was awake most of the night, but didn't cry any more.
Day 13-Our morning was the usual routine. Amy was happy to see her daddy again that morning. Tess came about noon and we took turns going to the cafeteria. We visited and Amy dozed. When it was time to take her to the OR, I assured her everything would be alright. She would go to sleep and we would be here when she woke up. They didn't call us to come back to her room until after she had been cleaned up and was awake. She looked so good! She didn't smile, but she didn't have the mask taped to her face anymore. It was so good to actually see her face again!
Our Pastor and Assistant Pastor came to visit, but didn't stay long as Amy was starting to cry. She was in pain. Late afternoon a tube was inserted back in her nose to give her some nutrition. I had to leave her room as I was falling apart. I had never left her alone during a procedure in her 31 years of life, until now. Tess and Bill were there, but I couldn't stand to see her in any more pain.
She was given pain medicine and now she was getting food. No more crying. Tess stayed that night and all went well, but Amy was given two shots to help her sleep.
I really feel that this was the last day that Amy had a chance of a normal life again. Once the trache was done, her little body was just to frail to recover.
But we didn't know that then. The next morning I sent out a mass email and facebook post before heading off to the hospital again.
UPDATE ON AMY
Amy had a tracheotomy yesterday. She is doing well but experiencing some pain. What this does is help Amy get the oxygen she needs, but through a hole in her neck and not through the tube in her mouth. They are still able to suction out the lungs through this also. She is still fed with a tube that is now going through her nose. She will have the trache in for 4 days and then they will start to wean her off of it by decreasing the amount of oxygen she gets and letting her breathe on her own. Then, if she does well, they will remove it and it will grow back together, just leaving a small scar.
God to give Amy strength to learn to breathe again on her own.
She will not have any more pain.
Strength for the family. Yesterday I hit bottom and had to walk away when they were putting in the tube through her nose. I have never walked away from a procedure done to Amy. Never in 31 years. I just couldn't take anymore of seeing the pain in her eyes and fake a smile and tell her it was going to be okay.
Wisdom for the doctors and compassion for the nurses and others who work with her.
Thank you so very much for all your prayers and sharing Amy's needs with your own churches and prayer chains.
Thanks also to those who have sent cards, gifts, visits, or phone calls.
I could not have done the last 14 days without God's strength and guidance and I know He will continue to give me strength for the next weeks to come also.
Thank you all so very much for the sweet comments you have made. I'm sorry I cannot take the time to respond to them all.