Amy and I woke up to sunshine on Tuesday morning! We had both managed to get some sleep and our day started off with the normal routine of early morning x-ray and lab work. The troop of interns and the Dr. came in and we were told that Amy's lungs looked better and that the bronchial blockage was not there. That was the one positive thing, but..... she had failed the breathing test. The way they did this was to decrease the amount of work that the pump was doing to make her breathe and see if she would take breaths on her own. This is done with the tube still going down her throat; it is just the controls on the machine that they change. They would also keep a close watch on how fast or slow she was breathing and the oxygen levels. Sometimes with the machine still doing most of the work, Amy would take a breath on her own. The machine would show us this. But when it was slowed down to the point of Amy doing most of the work, she couldn't do it. So the Doctor said the concern now is to get her off the intubater so she will not have to have a tracheotomy in the future. He plans to wait until the end of the week to see how she is doing.
Every so often over the next couple of days Respiratory would come in and turn the machine a little lower so Amy was taking more breaths on her own. This is how they tried to build up her lung strength so they can remove the tube.
The Wound Department was also in to see Amy as she had a bedsore. It was right on her tail bone. I believe this happened when the cat scan was done and they did not transfer Amy correctly. Once she was on the hard board they just slid her to position her instead of lifting and placing her. I believe the pressure on that board caused this sore. So now they are getting her a special sand/air bed that will simulate her water bed that she has at home and it is also heated.
Yesterday the doctor had ordered her nutrition intake to be doubled. Now today she has diarrhea. They won't let me wear diapers on her and it just goes everywhere. This makes it really hard to keep the bed sore clean at all times. The catheter doesn't seem to be working properly also, so they took it out and tried to reinsert it again. Poor Amy. She became very agitated and had to be given some medicine to calm her down. I'm sure it caused more "discomfort" (PAIN) then they said it did! I think the medical profession has a whole vocabulary of their own for the word pain. The new bed came that evening and Amy slept well. She didn't need any medicines to help her sleep. She really liked her new bed. I think having it heated helped so much. The motor was rather noisy though, but I also think the steady hum helped her sleep better.
Wednesday Day 7
The new catheter still isn't working so it was taken out after the normal 5 a.m. x-ray and lab work. Amy had another new nurse today. Every time someone new came in I always gave them a copy of Amy's story. This had just been printed a few days before Amy went in the hospital and it was our way of spreading the news of Rett Syndrome, what Amy was capable of understanding, our beliefs and the hope that others could have through Jesus. Many people were blessed by her story and would talk more directly to her instead of just me.
We also had a new intern that day. I was informed that he was called a "resident". He was always a part of the team who came in every day, but now he would come in about an hour or so earlier and then he would give the report to the doctor in front of the whole group. For the first few days we had a young woman from China who Amy and I got along with really good. This guy was a jerk! He asked Amy to hold up two fingers if she could hear him. Has he not been listening all week while he was in here?
Amy's bed was changed again ( it would be so much easier if she was allowed to wear diapers) and by 8:30a.m. She was sound asleep again. There was heavy snow overnight and it was snowing again...big wet flakes. I wondered if my girls would be able to come visit that day.
The doctor and team came in around 10:00a.m. and Amy was still sleeping. The young resident gave his report and he must have been nervous because his hands were shaking. The doctor asked him some questions and he stumbled on the answers. (I wonder what that young man is doing now?) As Amy is still not breathing well on her own, the Dr. planed to make a decision to do a trache, or not, the next day and then it would be scheduled for Friday. I asked him what this involved and he said it would be done in the room and then a feeding tube would be inserted again in through her nose. She would be more comfortable without the huge tube in her mouth and she could learn to breathe faster on her own.
Amy slept most of the day. She had another catheter put in around noon. I think it is finally working right. Quiet afternoon. We watched some tv and went to sleep early for the night.
Thursday, Day 8
Amy slept well with an early wake up at 4:30a.m. for an x-ray, labs at 5:30, pulmonary at 6:00 and respiratory at 8:00. Amy was very groggy through all this. She did well on the test, breathing on her own. She was breathing a little faster, but on her own! The settings on the machine were set so she was breathing on her own. Praise God! I was so happy! The doctor wasn't as happy. He said he will be happy when she is completely off the breathing machine.
The nurse and I gave Amy her bath, and placed her on her left side. She soon started struggling to breathe again. She was breathing too fast and her heart rate went up so Respiratory was called again and she was put back on full power of the machine. They said they would try again in a few hours. Amy needed the full power again to be able to rest. She was able to watch some tv and rest well for a few hours. Once again she was put on CPAP (breathing on her own) but after just a few minutes the monitor started beeping, her oxygen had fallen below 80, Her heart rate was above 120 and so they had to stop and put her back on the full machine again. Tess came and after visiting for awhile and explaining the last few days, I headed for home as Tess was going to stay for the night. Three nights in a row with little sleep was very draining on me. I noticed that my emotions were on edge and I didn't have much desire to walk to the cafeteria, so I would just grab something from the snack machines and get by. I knew I needed to stay strong for Amy. I knew I could not do this on my own power. I needed prayers and I started mass emails and posting on facebook. Here was my first posting the last time I was home:
"For my friends who don't know, Amy is in ICU for the fifth day. She has pneumonia and a bladder infection. She is on a respirator and a feeding tube. Last night was her first peaceful night of sleep in a long time. We are taking turns staying the night, so someone is always with her. Please pray for God's almighty healing in whatever way is His will for her life. Thank you.
I posted this when I got home after our 8th day:
I wanted to update you on Amy. She will be spending her 9th day in the ICU, still on a respirator and a feeding tube. Her pneumonia and urine infection are better. The main concern now is getting her off the respirator. She doesn't have enough strength to breathe on her own and they are talking of doing a tracheotomy. The Dr. will make the decision this morning. If he decides on that, it will be done this afternoon. Tess stayed the night with Amy and Emily brought me home for a much needed sleep in my own bed. Bill called last night and he was also able to talk to Amy.
Please PRAY.............Amy will breathe on her own today so that she doesn't have to have a tracheotomy.
I will continue to be strong for her and that my knee pain will go away so I can get more rest while I am there.
That I show Christ to others with my attitude and love for Amy.
Bill will have a safe flight home on Sat. (tomorrow!!!)
Wisdom for the doctors and compassion for the nurses.
Thank you so much for your prayers!
Amy will be celebrating her 31st birthday tomorrow in the ICU.
None of us knew that Amy would never celebrate another birthday here on earth. We asked for God's will in her life, but did we really think that it might lead to death? We say that the ultimate healing is to be with God. Did I really believe this deep in my heart? My faith would be challenged time and again over the next few weeks.