I was at Wal-Mart yesterday and found a beautiful solar butterfly, about 8 -10 inches long. I purchased it and took it to the cemetery on my way home. As I was approaching Amy's grave I saw the space in front was filled with about a dozen robins. A glorious reminder that spring is here and many days of sunshine will soon follow. I continue Amy's story..........
March 26, Tuesday, Our 27th day.
Amy and I slept well that night. I do believe the pain meds they gave her helped her sleep. I checked on her 3 times during the night and she was sleeping sound each time. That day was a busy day. The wound care people were in and said the bed sores had healed nicely and encouraged me to do whatever I had been doing at home because Amy's skin looked so good. (I wish they had listened to me more at the hospital!)
The nurse manager was in and we discussed Amy's expensive bed that she had used while she was in there. That was the only reason her skin healed and she didn't get more bed sores! She had a script for it, so why complain to me about the cost. Anytime I had an issue with something she was always in my face. I would have appreciated it if I felt true compassion and concern from the woman, but I did not. I was glad that I soon wouldn't be dealing with her anymore.
Respiratory was in and Amy had pulled the oxygen off her trache and she was still at 99%. We were encouraged. We had visitors from church and then James and Laura came.
The dietician was in. A sweet young girl who was the nicest of all the specialists we worked with. She told me how to change the tubes for Amy's feedings, and then walked me through it. I was able to do it, although my hands were shaking most of the time. Amy was to get continuous feedings for 3 weeks and then we were to change to overnight feedings. This was the plan....... but not God's plan.
Tess came in and I went home with James and Laura around 7p.m. Tess painted Amy's nails and they watched some tv together. Amy was very happy and smiled a big, big smile when "Little House on the Prairie" came on. (They both grew up watching the series together.) Amy only woke up twice that night coughing and needed suctioned.
The next morning I sent out another email before I left for the hospital
Good news! Good news!
The treatments on Amy's lungs worked and she did not have to have surgery. Her x-rays now show her lungs clear!
Sunday we had quite a scare as she had an arterial bleed from the trache. Contessa was with her and God gave her the strength to be able to witness that with the room full of Drs. working on Amy to get the bleeding stopped. The trache Dr. was called in and he talked to me on the phone as I was here at the house preparing for another two day stay and Bill was at church. He informed us about the bleed and told us that Amy could possibly die before we were able to get to the hospital. That was not God's plan! The bleeding did not start up again and Amy was able to have the stomach tube put in on Monday. They took the scope down the esophagus to see where to put the stomach tube and the Dr. said that her esophagus looks good. This is a good sign as hopefully we can wean her off the PEG feedings and get her back to eating real food again. She was so happy Monday to see Laura and James! They flew home on Sunday to be with us. Yesterday was also a good day as Amy is now getting nutrition and she was even able to sit up in her wheelchair for 3 hours!
The very best news is they plan on discharging her on Thursday! Please pray for Amy to continue to gain strength. Pray for the transition from 29 days in the hospital to our home will be a smooth one as we have home health coming in and setting up all the equipment we will need to care for her trache and PEG tube. Pray that we will understand how to do all the stuff required to take care of Amy at home. Long term prayers for removing the trache and the stomach tube. Thanks for everything that you all have done. Especially for the prayers and verses shared with me. God has given us so much strength to endure this trial. I know He will continue to give us strength in our daily care for Amy. I will continue to update.
In His amazing love,
By 9a.m. Amy was in her wheelchair and Tess washed and braided her hair. How Amy loved Tess to do her hair for her. They listened to some more of "Narnia" and watched "The Princess Diaries." Tess read her get-well cards to her and the PA was in and said plans were for Amy to go home the next day. Amy was excited! She stayed in her wheelchair for 3 1/2 hours before laying down again. Bill and I came around 1:00 and soon after a pastor came and wanted to pray with Amy as he had been given the gift of healing. We agreed and he anointed Amy with oil and prayed over her. I had enough courage to speak up and tell him that God allows sickness to strengthen our faith. That sickness is not a sin. He left soon after that. A social worker came in and we discussed Amy's home care. They have set up with a local agency to have all the supplies that we need at our home when we arrive. Bill and Tess left about 6 and around 7 a large family came and sang in the hall of our floor. They stood very close to our door and Amy had a big smile on her face the whole time. They sang 4 hymns and I was able to give them one of Amy's Story brochures before they left and thanked them for their ministry. Amy listened to me read a story to her and then we listened to music as we prepared for bed. She would doze and then wake, always with a smile. I think she was excited and happy to be going home! The beeper went off twice overnight and I suctioned her. I worried about how I would know this at home without a beeper to let me know when her oxygen was low. I wrote in the journal, " I worry about not waking up for Amy's needs. But I know God will provide and I need to rest in Him and leave the worries to Him."
We came to the hospital on the 28th of Feb. and we left on the 28th of March. What a journey it had been. I had no idea that we had more of a journey ahead of us and that Amy would be going on a different journey than the rest of us. Bill came to load up all of Amy's stuff, her wheelchair, balloons, flowers, cards and all the supplies they gave us to take home. So many people came in that day to tell Amy good-bye. She had touched so many lives of the nurses, support staff, and drs. And her story was given to so many people. The ICU Dr.'s PA was in and we had a frank talk about the trache. From my journal: "It isn't in there to help her breathe, but it is in there for lung care. If Amy can go a week without suctioning then they will try to get a speech therapist to put a valve on it. That helps strengthen her muscles by letting her breathe in but it wont let her breathe out. She will have to use her muscles of her nose, mouth and chest for that. Then they will plan on capping the trache and then removal of it. She will have to be hospitalized to have it capped and then removed so she can be watched closely. We didn't even talk about getting the PEG tube removed. I can only handle so much at one time. I won't be able to send her to school or take her out at all until the weather is nicer and she is on nighttime feedings. Then I can take her out with a portable oxygen tank."
Amy had some visitors, our Pastor and his wife, and a good friend whose husband was on the same floor as Amy. The ICU Dr. was in and gave Amy a final checking over. Bill left about 4:30 and the ambulance finally came for Amy and I around 6:30. We were home by 8:00. Home!..............
Tess had spent the afternoon getting Amy's room rearranged to accommodate the equipment. We now had an oxygen machine, a suctioning machine, her feeding machine and all the supplies that went with those things. Amy needed to be propped up so her double sized waterbed was transformed by putting rolled up blankets and lots of pillows on the top 1/4 of her bed. A home health nurse came and we went over everything and signed papers. I was so exhausted it was hard to get through it. Tess agreed to stay up that night and promised to get Emily or myself if she got tired. Amy slept most of the night. She was awake from about 3-5 but then slept until 11 a.m. the next day. She didn't need suctioned all night long.
Friday, March 29th.
We stopped counting the days in the journal, but wrote down dates instead. Another nurse came that morning and went over more paperwork and then watched us do all the stuff with Amy. She was finally ready for her day at 1p.m. It was a great day for us all. We just enjoyed being home again. Amy was only suctioned once after she woke up and then once before bed. "Things" seemed to be going very well. I posted on facebook and in a mass email:
Amy's home! More news to follow when I get time!