Tuesday, March 25, 2014

Days 22-26

My back went out on Thursday, so I haven't been able to sit at the computer very long. (I don't have a laptop.) I'm sorry that I have been delayed in getting the last few days of Amy's story on here. I will try to catch up now.

 Days 22, 23 and 24 Thursday, Friday, and Saturday,passed  with little difference in each day.
This is what my e-mail and facebook post said on Thursday: 
 March 22
As many of you know, Amy failed the swallow test on Monday. We decided to have a PEG tube ( a feeding tube in her side) put in. So Tuesday night her tube feedings were stopped so her stomach could be empty for the procedure on Wed. The Dr wasn't able to do the procedure because he saw what he thought was a blockage in her esophagus. So Amy had a Cat Scan and it showed that her esophagus was contracted and also that her right lung in full of fluid with a mucus plug at the top. I'm sorry for those who heard that her lung and esophagus were collapsed; that is what the doctor had initially told us. Since then Amy has been having breathing treatments (like for those with asthma) and lung physical therapy (a small repetitive pounding on the back to loosen the stuff in her lungs). Then she is suctioned well to get rid of the stuff that has loosened. The Dr. was going to decide today whether to do surgery or not on her lung, but this morning decided to give it one more day yet with this treatment. When her lung has cleared, then the PEG tube will be tried again. Please pray for Amy to have strength. I can see her daily getting thinner and weaker. Again, continue praying for wisdom for the doctors and compassion for the nurses. Strength for myself, Bill, and the girls as we take turns staying with her. Continue praying that we can shine God's light to others. I have printed off a few verses that I'm going to put on the wall so that I can see them and be reminded of God's love for us and especially for Amy. If you want to share any verses with me, that would be great!
Also thanks for your comments, words of love, and most of all your continued prayers. God is so good to us and He is blessing us and Amy daily with His love. Cheryl

So those three days passed with respiratory therapy, pulmonary therapy,x-rays, blood drawn, and lots of suctioning. Amy had not had anything to eat since Tuesday night, but the drs. assured us that she was getting hydration and she was ok. The drs. still continued to talk about doing another bronchial scope before the PEG tube would be put in. We had noticed after the attempt on Wed. to put in the PEG tube that Amy's lip was cut and bleeding. Then we noticed she actually had a gouge in her lower gums under her teeth that was bleeding quite a lot. It was finally looked at on Friday and we were told an oral surgeon needed to check on it. Amy continued to have a lot of blood suctioned out and I just knew that her throat or esophagus must have been damaged when they tried to do the PEG tube, but they said this was from her lungs and also being suctioned so much causes more irritation. It was finally decided on Friday to retry the PEG tube on Monday. On Saturday the dr. who was to do the procedure came and spoke to me. This is a direct quote from my journal: 
"The dr. thinks the most important thing right now is to get food into Amy. I told him about the tooth and he wants me in there with her until she is out of it. He said that there were "complications" with her breathing last time and they were worried and just stopped the procedure. (Meaning more than just a blockage in her esophagus as was told us before.)  He is having an anesthetist come in to put her to sleep this time."
I was relieved that I would get to be with Amy until she was asleep  and that a different dr. was doing the procedure this time. 
I was told the oral surgeon would not be in until Monday but silver nitrate was ordered to stop the bleeding on her gums. Also there was talk of putting Amy back on a ventilator to give her lungs a rest.
Tess came and stayed with Amy that night. They had some visitors and Amy enjoyed visiting with them. She was awake again most of that night and somehow managed to dislodge the IV as it was leaking. 

Sunday, March 24, Day 25  was to be the hardest day for all of us especially for Tess. 
 Amy's oxygen was still low, but after a treatment she seemed to do better and her oxygen was turned down to 50%. She actually slept for a few hours. Here is Tessa's words from the journal:
"10a.m. Amy was getting washed up. Her trache collar was changed and she was fine until she let out a hard  cough and blood just started pouring out under the trache. It wouldn't stop and was a lot of blood. The ICU Dr. came in  and about 6 others to stop the bleeding. He paged Dr. M (the trache dr.)  as he was concerned that because the blood wasn't dark it may be an artery. 
1. Artery in thyroid.  
2.  Major artery that would not stop bleeding would be fatal.  
3. Or her windpipe was torn and bleeding a little. 
Option 3 was not given till later on the phone with Mom and Dad.  He talked to Mom on the phone and Mom, Dad and Emily came right away, got here about 11:30. I read to Amy until they arrived and she dozed on and off."
I can't imagine what Tess was going through to have to witness that and to think that Amy could die in a few minutes. I got the call at home and was told by the dr. that she could die before we got there. I called for Bill to get home immediately and we raced over there as fast as we could. Tess had already talked to Emily.  I called my son and his wife (they were 2000 miles away) and told them what was happening. I will never forget them telling me that they had booked a flight already and were soon leaving to come  home. I just cried and cried.  I remember praying in the van for God to just keep her alive until we could be there with her and if it be His will to keep Amy with us until James and Laura could be with her, too.
I don't think we ever drove so fast over the mountain to the hospital, but it seemed like it was the longest trip we ever made. 
When we arrived the trache dr. talked to us. He still didn't know what caused her to bleed, but since it was under control he didn't think surgery was necessary and wanted to keep her still and not to move her so she could heal.
Amy continued to get her breathing treatments but not the pulmonary therapy.  She slept and we all tried to calm down after the scare that she gave us.  Bill, and Emily left for the night and Tess, Amy and I listened to Beethoven's 9th and tried to sleep. Amy was awake a lot again. She's getting her days and nights mixed up. She finally slept around 5a.m.  Tess and I stayed the night as they were doing the surgery for the PEG tube that day.

March 25, Our 26th day in the hospital, Monday
X-rays and blood work as usual. An oral surgeon was in and looked at her tooth. He said it looked ok. We were called at 7:30 to go down to get the PEG tube done.  They let me stay in with her for the beginning. Even though some of the nurses didn't like it and told me to stay back and out of the way. They tried to put a round hard plastic piece ( like a PVC pipe) in Amy's mouth to hold it open to put what they needed down her throat. She hated stuff going in her mouth so of course she fought against it. I insisted they give her something to calm her down first and they didn't want to do that because she would clamp her mouth shut and they would not be able to open it. They finally agreed and gave her something. Then I suggested a smaller tube???? They were able to find a pediatric size and that fit in her mouth perfectly. Amy was starting to calm down and get sleepy and the dr. came in then and wanted to get started, so he asked me to leave.  ( I finally understood why Amy had damage to her mouth and why she got so upset last time as I imagine they tried to insert that thing in her mouth and she struggled against it.)  Only 15 minutes later, they called me back and they were all done. Amy was so brave. She only had one sad face and I cheered her up and we stayed in the recovery room for awhile and then were allowed to go back to her room.  Soon after we got to the room, James and Laura, Bill and Emily came! Amy was so happy to see her brother and sister-in-law. Even though she was so sleepy, we had a great time visiting. Amy was finally getting nourishment again. The Dr. said I could take her home soon! All seemed to finally be going well. After everyone left that evening, we started listening to the audio book of "The Lion, The Witch, and the Wardrobe." Amy had all the books of the Chronicles of Narnia on CD and she loved the stories. I knew we would be listening to them for the next few weeks.  I just didn't know that Amy wouldn't have enough time left to finish listening to all the books. 

Views of the Atlantic Ocean from Ocean City, MD
I was able to feed the seagulls from our balcony last week.

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