I will try to continue her story.
Amy's 14th day in ICU was to be her last day there. Tess had stayed the night and said Amy slept well once she got to sleep. She was groggy through x-ray at 5:30 a.m. and respiratory at 7 a.m., but woke up soon after. She said Amy seemed sad. I wonder if she knew her time was short.
Amy had her bath which required another pain shot as she was agitated. Then Tess let her choose some nail polish and painted Amy's nails. She always loved getting her nails painted! The Dr. came in around 9:30 and said they were going to try an ATM (Aerosol Trache Mask) to breathe on her own instead of using the ventilator. Even though she had a trache she was still on the ventilator to help her breathe. He also said another Dr., his cousin, would be seeing her in her new room. Tess put a big question mark in our journal as no one had told us she would be moved.
I came around noon and Amy was still so sleepy. She had a restless afternoon. Slept when she could but woke up often. She was given more pain meds around 5:30 and then more again around 7:00. We were watching some tv and Amy just seemed so sad. She just stared a lot, which was unusual for her. A nurse came in around 8:00 and said they had a room for us and to get ready to move all her stuff. I questioned this and she said it was a good thing, meaning that Amy was ready to leave the ICU. I know she had been there 14 days, but they just cut her open the day before! She was still on the ventilator and I didn't really see how she was "better." Did it have anything to do with money? She had a medical card, which I'm sure the state didn't pay very much. But I chose to believe that she was doing "better" and that it was a good thing to go to a regular floor.
The heater in her room had issues (it was about 95) and so a tech was in working on it until 11p.m. Amy started crying around 10 p.m. and was given another pain shot. We didn't have as much space because of all her machines, but at least we had a private room, with a bathroom, so I didn't have to use the public one (down the hall) and could actually shower here if I wanted to. We were both up until 1 a.m. and no one bothered Amy until 5 a.m. when lab came in for more blood work. So began our..........
15th day,Thursday March 14th.
Amy was put on the ATM that morning and was breathing well on her own. Amy slept a lot during the day, catching up on the sleep missed the last couple of days. People were in and out, of course, Amy even had more blood drawn and she slept through it all.
The Dr.s PA came in and told me that if she can't be weaned off the trache within two days that she will have to be moved to a nursing care facility for 3-4 weeks. Another PA came in and told me the same thing. After she left I fell apart. I went in the bathroom and cried. The thought of another 3-4 weeks and moving her to a nursing facility just unnerved me. I felt like I had been lied to about the trache. But maybe I just didn't ask enough questions. I called Bill and cried. I'm sure the nurses could hear me. I'm sure they also heard me say that I felt like I had been lied to. They never told me it would be weeks and weeks until they could take the trache out. Amy woke up and so I had to be happy for her. The new Dr. came in and introduced himself to me but didn't talk to Amy. I didn't want to talk to him right then, so I don't think I was very polite. After about an hour the nurse manager came in all concerned about me and how I was doing. I could see right through her "concern." But, of course, I was pleasant and smiled and told her I was ok. About 4:00 Bill and Emily finally came. They weren't planning on coming that day, but decided to since I was so upset. Emily was going to stay the night for me, her first time, and I agreed as I was so emotionally exhausted. After I left someone came in and wanted to give Amy a pneumonia vaccination as she never had one and thankfully Emily told them to wait until they talked to me.
Do you really give some one a vaccination when they presently have the illness?
Amy was taken off the ATM. She had been on it for 13 hours, breathing on her own!
Amy slept well that night, even sleeping through the drawing of blood again the next morning at 6 a.m. and so another day begins.......
X-ray was in at 7:30 and that was not a pleasant way to wake up.
Amy had her usual morning routine and Emily said that Amy cried. Just tears, not scrunching her face in pain, but just tears. She was sad. Again, I wonder how much Amy knew that we did not and I was to blind to see how sad she was.
Emily said that when they took the respirator off her that morning, Amy smiled. It was the first smile she had seen in quite a while. Emily told her it was St Patrick's Day (but it wasn't yet!) and Amy smiled again. Amy loved holidays and parties!
The PA came in and said there was still fluid in Amy's lungs and they were going to treat that. Amy would be allowed to get in her wheelchair today for a little while! I came about 11am and got another smile from Amy.
The Dr. came in and I told him what I thought about his PA. I was polite, he was polite. He assured me that Amy would not go anywhere else, except to our home. I did feel better, but I also found out from the nurse that the nursing facility wouldn't take Amy's medical card, so she couldn't have gone there anyway. Does everything always come back to money?
Emily went to the cafeteria and this is what I wrote in the journal:
"Emily left for a break and I need to think.... Amy will be in here at least through the weekend. It is very important that we try to get her off the ventilator and then off the trache so she will be able to eat real food and so she can get back to normal."
Wow, I really believed this.
Tess came and said she planned on staying the night, so I would have two nights of rest at home!
The speech therapists came in and did a swallowing test with Amy. She did really well. So on Monday she will get a test with an x-ray as she swallows to see where the food goes down her.
Tessa had a good evening with Amy. They watched some tv, read some more chapters in her book and she fell asleep listening to Chris Thomlin. She slept from 7:30p.m. to 6:30 am.
I sent out my next mass email and facebook update before I left for the hospital that next morning.
Another update on Amy----
A lot has happened since I posted last. Tuesday, Amy got the trache and Wed night they moved her to a regular room. I was a little upset thinking they were moving too soon, but it has turned out ok. Amy slept almost the entire day on Thurs.with just the oxygen mask on the trache and not hooked up to the ventilator. One of the PA's came in and told me that if she wasn't off the vent and breathing on her own by Friday, they wanted to move her to a long term care facility because of money! Insurance doesn't usually pay for more than 14 days. All of but one of those days she was in ICU. Also, I felt I was deceived in being told that the trache would be in for 4 or 5 days and then they would take it out. It is not that easy. It is a process over time to remove a trache. Well, that has been my lowest point of this whole stay. I didn't have much to eat that day. Didn't sleep well as we had moved to a new room. It was more than I could handle and called Bill and Emily to come up. After talking to more people, her drs. and nurses, they assured me that she would not be moved until she was ready to come HOME. They are doing all they can to get her ready to come home and not to another place. Dear Emily stayed the night so I could come home and it helped so much for me to get my rest. The Lord returned my strength to me and my acceptance of the situation and gratitude for all those taking care of her. Yesterday (Friday) was a great day for Amy. She was awake a lot, was not put on the ventilator and even sat in her wheel chair for an hour and a half and while in her chair, Contessa washed her hair!
Contessa stayed last night and this morning she said that they took the ventilator out of her room because she has been off it for more than 24 hours. Bill and I are leaving soon and I will be staying tonight.
Here are some more things to pray for:
Amy will continue to grow stronger with her breathing, to the point they can cap the vent and she can just breathe room air.
Monday, Amy will have a food test. It involves moving her to a room where she will sit in a chair and eat bites of different textures of food coated with barium fluid and then x-rayed to see where the food goes and how she tolerates it. It is the next step to getting the trache out and the feeding tube out of her nose. Pray about this as Amy is very unsteady sitting up unless she is in her own chair. She also clamps her teeth shut if she doesn't want to eat something that she doesn't like and it is very difficult to get it down her.
Please pray that Amy will be able to come home without the trache and a feeding tube.
I will be able to keep my cool with the drs. and PA's. but still be a voice for Amy.
Again, that God's love will shine through me and my girls, even through tears, so that others can see Jesus in us.
Thanks so much for all your prayers.
I have a special post that I am going to send out in the morning for Amy's birthday.