Day 20, March 19, Tuesday
That was a pretty good day,considering all that was ahead. I was taught how to clean out Amy's trache and how to manage the ties that hold it in and on her. She was bathed and up in her chair when we got a visit from our Pastor and Assistant Pastor. Amy stayed in her chair for two hours throughout the visit. She was in a good mood and smiling.The PA came in and explained some things about the PEG tube. I would do constant feedings with Amy for about three weeks until we could start all night feeding. Then about three weeks after she was used to that we would try a swallow test again. Amy needed to be upright during the feedings.I was a little worried about that, as she loved to lay flat when she was in bed. We hadn't even used a pillow for many years. Then I got her settled and back in bed and she started watching some Disney when we had a visit from some more friends. Soon after they left I was standing at Amy's bedside and twisted my knee instead of rotating it. I believe this was the moment I completely tore through the meniscus. I was is such horrible pain that it brought instant tears to my eyes.
Emily and Bill came soon after that and I decided to just go home early. Emily stayed and reported that Amy was sad on and off and cried a little. She would doze and then startle and wake up. Finally around 2 a.m. Amy fell asleep.
I know now that she was anxious about the surgery the next day as we all should have been. (Drs. have a way of reassuring people that "the procedure is done quite often and there are minimal risks".) Her feeding was stopped around midnight.
I don't know exactly when it was but at some point, when I came home, I just curled up on Amy's bed and cried, like I had never cred before. I just knew that she would never come home, she would never be in her room again. I was losing her. My husband, the eternal optimist, comforted me and let me cry and held me. I was wrong about Amy not ever coming home, but I was right that I was losing her. If I had known at the time, we would have brought her home right away and not prolonged her pain.
Amy was very tired and drowsed through most of the morning, even through two times of blood work and her chest x-rays. Bill and I came around 11a.m.
The journal the girls and kept during that time, was to help each other know what transpired while we were not there. It kept a running account of which nurse was on duty, what drs. came in and what Amy's vitals were. It was just to be informative for the next one who was spending the night with her. It rarely told of our feelings. But on that day I wrote this, "When Bill and I came in Amy was asleep. No tube in her nose! She looks so good, but thin, so very very thin. Maybe the PEG tube will put a bit of weight on her. Maybe this is a start of a different way of life for all of us. God is in control."
They finally came for Amy around 3p.m. She was transferred to a gurney and wheeled down to where they would do the surgery. We signed papers and then waited with her in a little room where an i.v. was put in and the dr. came to see us and a nurse told us the procedure.
I knew Amy had to have this done to live. I either blocked out the specifics, or she didn't tell us in detail what was going to happen. If I had understood all that went on I would never have left her side until I knew she had enough sedation to endure this. See link below. What they told us was that Amy would be given a little bit of sedation through the i.v. and then a local anesthesia around the area on her tummy, an incision made and the tube placed in. A simple procedure and she would be back in the little room in about 1/2 an hour.
It turned out to be not so simple. Amy cried some, and we calmed her down and prayed. Then they wheeled her away.
Soon the dr. was out and said there was something (a hard string like thing) in her esophagus and he wouldn't do surgery until he knew what it was. Amy was so upset when we saw her. They suctioned a lot of bloody stuff out of her trache. (That should have told me something was more involved than what they said.) She was still so upset. We sang with her and she started to calm down. Amy was then taken to get a cat scan and we all went back to her room upstairs to wait for the results. Amy slept. While she was sleeping her ICU Dr. came and said he wants her to regain some strength before putting the speech valve on the trache. Arrangements were being made for her to go home on Friday. Only two days! The nurse brought in IV fluids for Amy and when she woke up, Tess braided her hair.
7:30 p.m. Results were back finally. This thing in her esophagus looked like it had been there for a long time. She had a lung partially collapsed and her esophagus might be partially collapsed also. They called in a cardiothoracic surgeon for consult. He was to come the next day. He makes rounds early, then does surgery and then does the consultations. So they planned to focus on re-inflating the lung but Amy would not be having the PEG tube surgery the next day.
We pretty much all lost it. We were so stressed over the surgery and then to have it canceled and something else go wrong and then waiting for answers, just works on the emotions. Amy's meds started to kick in and she started looking spaced out. We decided it was probably best to leave. Emily stayed again, since nothing would be done early in the morning. After we left another dr. came in and told me (I was on the phone with Emily, so he talked to me) that it was not a collapsed esophagus but it was contracted. This can be fixed by putting a tube in and dilating the esophagus.
Soon after this a nurse came in and informed Emily that Amy's lung was not collapsed either. It was merely full of fluid. Emily was brave enough to voice her frustration with the dr. telling us all the wrong stuff and the nurse tried to assure her by telling her that he was getting other specialist involved to help us.
Amy didn't sleep much that night. They gave her something to help her sleep, but I think it had the opposite effect. Emily was so tired, she set her alarm every 15 minutes to wake up and check on Amy.
If you are as knowledgeable as I am about the medical field, you might be asking why the dr. was looking at her esophagus when he needed to do a "quick and minor" surgery to her stomach.
Wikipedia explains it much better than I can.
The Gauderer-Ponsky technique involves performing a gastroscopy to evaluate the anatomy of the stomach. The anterior stomach wall is identified and techniques are used to ensure that there is no organ between the wall and the skin:
- digital pressure is applied to the abdominal wall, which can be seen indenting the anterior gastric wall by the endoscopist.
- transillumination (diaphanoscopy): the light emitted from the endoscope within the stomach can be seen through the abdominal wall.
- a small (21G, 40mm) needle is passed into the stomach before the larger cannula is passed.
Looking back, I think we should have had her in a childrens hospital if they would have taken her, or at a bigger facility that was better equipped to handle her problems with doctors that were used to working with special needs. I question so much now of the "what ifs." While I was living this a year ago, I believe I had more faith than I do now. I said repeatedly that "God was in control." I know that He still is in control of our lives. But as a mom, I struggle with the thought that there must have been something I could have done..............
My struggles and questions don't change the past. I believe we could have pursued legal action on some of the decisions that were made by the hospital and staff. But what would that have helped?
It was Amy's time to live with Jesus. It is God's will that I remain here without her. I would not want her back with all the tubes and machines keeping her alive. She is whole now and blissfully happy.
I continue to try.............