March 30, 2013 to April 5, 2013

Day 31, Saturday, March 30, 2013
After having the nurses come on Thursday night and Friday morning we enjoyed the peace of the weekend without someone interrupting us. The nurse on Friday morning had told us all the worst things that would happen at some point with a trache and a PEG tube. I was a little overwhelmed on Saturday and I wrote in the journal that it was a sad day for me. I don't remember all the details except that I felt so sorry for Amy to be confined to the house for the next few months. Spring had come early for us after all those snowy days in the hospital and I wondered how we all would get by.
Amy slept quite a lot that day. I knew she was so tired from her days in the hospital. She didn't need suctioned, but seemed tight and not able to cough. Tess came in the afternoon and to spend the night. Amy had a lot of gas, so we called the nurse and they planned to order Pepcid for her on Monday.

March 31. Easter Sunday
I don't remember who all went to church that morning, but I know that Tess and I were home. We had planned on possibly letting Amy sit outside for awhile that day just to get some fresh air, but while we were getting her ready that morning she threw up and it came through the trache also. It was around 11am on Sunday morning. I called home nursing, our local hospital, the large hospital we had been at for a month and I was only able to leave messages.  Finally I called 911 and had the ambulance come out. They didn't do anything (didn't even take her vitals) but advised we let her rest and call if she got any worse.  Her heart rate was up and she was breathing faster.  Our Assistant Pastor and his fiance stopped by as she is an RN; they advised us to take her to the ER. By then it was 3:30 and the home health nurse was to come at 4:00. She still wasn't here at 5:00 so we decided to call the ambulance back and took her to the ER of our local hospital. (The home health nurse called from our house at 8:10 wondering where we were!) Diagnosis: possible aspiration, kidney blockage with backed up food. Amy's white count was 3 times the normal and she had fever, a fast heartbeat and respiration. The hospital didn't want to admit her unless we would sign a living will for her saying that we didn't want her resuscitated. As Amy's legal guardians Bill, Tess, and I went to the waiting room (with other people there) and read over the paper and discussed it and finally signed. I felt like I was giving my okay for her to die. I think I hit a new low. Amy was moved to a room and we settled her in. Tess was staying the night with her. We finally arrived home sometime after midnight. In the journal we started counting days again.
 
Day 2, Monday, April 1
When Emily and I got to the hospital that morning, I received a call from my husband saying that Amy's pony had died. She'd had him for 23 years. I cried so hard, that the girls thought it was one of my parents or a person close to us. I just wrote it on a piece of paper and showed them. I didn't want Amy to know. She'd had enough change and sadness in her life right now.  Amy was moved to ICU. She was given antibiotics, fluids, potassium and other stuff in her IV. They took out 1000's of cc's of the food from her stomach tube, by pressure first and then just let it drain. Breathing treatments were started again and percussion on her chest. We met and saw the doctor who would be working with us with her trache. He said it wouldn't  be years, but it would be months until she would be able to get the trache out. He did a bronchial scope and suctioned; Amy didn't like it at all. Amy's white blood count was still high and so was her heart rate, even with the meds to help lower it. Tess stayed the night again.

I posted again before I left for the hospital: 
April 2
We took Amy to the ER on Sunday. She is in the ICU in Bedford, so day #3 is starting. Prayers are still needed.
 
Day 3, Tuesday, April 2
Not much was done that day. Treatments were continued with suctioning. We only live three miles from the hospital so we were able to visit all day, and Amy had some friends visit also.They stopped the percussion on Amy's chest and started to give her potassium to prepare her stomach for food the following day. Emily stayed the night.
 
Day 4, Wednesday, April 3
I came in early and brought Amy's wheelchair. Emily left for work around 10:00  and the nurse and I got Amy washed and up in her chair and I washed her hair and fixed it. Our Assistant Pastor visited. Amy received a breathing treatment and started watching "Charlotte's Web."  The Doctor, A Hospitalist, came in. He told us that "things" looked good. He thinks it was bronchitis or the beginning of pneumonia and not a bladder infection.  Amy was given a feeding and after the feeding started she began to get shaky and her respiratory and heart rate went really high. So the nurse and I moved her back into bed and she was so stiff and shaking, almost like a seizure. I just started trying to calm her down. She was given  a bit of morphine but it didn't help much so about 15 minutes later they gave her a full dose of morphine. A few minutes later they checked her stomach and none of the food had passed into it yet. So they stopped the feeding and an x-ray was ordered of her stomach. I had no idea what the problem might be.......Laura came to visit and the x-ray was taken.  The Dr. wanted to talk to me about Amy and I wanted Bill to be there so Laura called Bill and when he came in we talked to the Dr. This is what I wrote in the journal:  We talked to the Dr. together and we both decided to wait 48 hours to see if Amy gets better. So the next day we will be waiting and healing and Friday afternoon we they will try to give Amy some more food and see what happens. 
Emily came in to stay the night again.
I never stayed any of the nights while Amy was in our local hospital. Being that it was so close I felt that if I slept in my own bed, I would be more rested to spend my days at the hospital with Amy. Emily reported in the journal that Amy had another breathing treatment before bed and then about 1:30 a.m. started crying. Emily thought that Amy's tummy might be hurting her. The nurse gave her some Tylenol  and Amy fell asleep a little after 2 a.m.
 
Day 5,  Thursday, April 4
Amy slept through the blood work and through the breathing treatment. Bill and I came in but she never saw her Daddy because she was still sleeping. Emily and Bill left for work. Amy was to get two doses of the penicillin that day instead of just one. We had some visitors and around noon Amy had a respiratory treatment again. I started getting her cleaned up and then the nurse came in to help me. We got her in her chair and I was doing her hair when we had another visitor. Soon after that the Dr. came in to talk to me about moving her to a larger hospital. He didn't want to wait another day. And with that the journal entries stop..............
There is some confusion in my mind as to what happened the rest of the day. I know that the Doctor found out that the larger hospital (similar to the one she was in before) wouldn't take her. Amy would only be able to go to Johns Hopkins in Baltimore or to a hospital in Pittsburgh, both 2 1/2 to 3 hours away. I called Bill and Tess. We all talked to the Dr. 
As I understood it, Amy's small intestines weren't  working properly and they would have to do surgery and bypass them permanently. There was no guarantee that she would even survive the surgery, let alone have any quality to her life after the surgery. 
We decided that we didn't want her to die in a hospital so far away from home. We wanted her days to be peaceful and not full of more pain from surgeries. We decided to bring her home......
 
I wanted to just bring her home right then, but it was already evening and the hospital has procedures and they needed to contact hospice. Tess volunteered to stay the night with her. I don't know how she did it, knowing that Amy only had a week or so left.  But I think it was a special time for them, just the two of them together.
 
That evening we called family and the next morning I posted one more time:
April 5
UPDATE ON AMY,
This will be a shock to some of you. We are bringing Amy home today from the hospital and in a few days or a week, she will be home with Jesus. He will hold out His arms to her and she will dance into them and they will dance together with smiles and laughter.
She will see her beloved grandparents, her Aunt Erin, and her pony Cocoa, who just died on Sunday. She will be able to jump on his back and race around heaven, laughing and singing.
Amy loves parties, and since she was in the hospital for her birthday, we are celebrating her birthday on Saturday with a party for her. The rest of her days will be full of singing, stories, her beloved Veggie Tales and her family and friends with her. She would love to have visitors. Please come, just one or two at a time, and make your visits short. These next few days are only about Amy, not us, so I will only have her interests in my mind. If I am rude, I don't mean to be, I want to have happiness for Amy for her last days here on earth.
Please pray for Amy to not have any pain, strength and comfort for our family, for us to show Amy joy and not tears.
This is not what we would have wanted; her 31 years flew by so fast. This is God's plan and He is writing her story and ours. We only want His will for our lives. Amy has touched so many lives and she will continue in the days ahead.
Thank you all for lifting us up to Jesus. He is the answer to all of our needs. Love, Bill and Cheryl