Friday, March 28, 2014

Days 27-30

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. 

Day 28
The next morning I sent out another email before I left for the hospital
March 27
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."

Day 29 
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:
March 29
Amy's home! More news to follow when I get time!

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.

Wednesday, March 19, 2014

Days 20 and 21

I relive each day as it goes by. Will I every year? Or by retelling this, can I put this month behind me and just remember certain things,  not a day by day memory of each event? I certainly hope so. This month has been hard. I couldn't sleep this morning, knowing what the next few days were to bring me....last year at this time. So I will continue my journey in retelling Amy's story and how God used her in the last few weeks of her life.

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. 

Day 21
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.
An angiocath is used to puncture the abdominal wall through a small incision, and a soft guidewire is inserted through this and pulled out of the mouth. The feeding tube is attached to the guidewire and pulled through the mouth, esophagus, stomach, and out of the incision.[2] 

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.............

Sunday, March 16, 2014

Days 17, 18, and 19

Time has now caught up to where I am in my posts. A year has passed.

Day 17, March 16, 2013 Saturday
Tess had stayed with Amy that night. She slept well, but at 6:15 three vials of  blood were taken and at 6:30 a surgical doctor came in and pushed all around her stomach and kidneys. 8:00 x-rays were taken of her stomach/kidneys and her chest. The nurses were in to check and flushed her feeding tube and hooked up a new one. Then her ventilator was removed from the room!  It was not needed anymore! Success!
The Dr. from ICU came in at 10:30 and told Tess that everything looked good. Amy's trache would be downsized, a speech valve would be put in, and her oxygen would be decreased. (To my understanding, even though a person has no speech, a speech valve can be used to be able to control the amount of oxygen a person is using.)
Amy managed to sleep on and off through that whole morning. Around noon she was bathed and gotten into her chair. Bill and I came and Tess left. Amy's floor doctor came in and said that everything looked good. Respiratory techs were in and told me that it would be many days even weeks until she was off the trache! Later the floor nurse told me that Amy would be able to go home without the trache and feeding tube if her swallowing test went well on Monday.  The rest of the day was good but toward evening, Amy seemed flushed and sweaty and her heart rate was still high. About an hour and a half later a nurse finally came in and checked her vitals and all seemed fine.  She just thought that her body was working extra hard because of being off the ventilator. Then Amy woke up and started smiling! All she had been through and she could still smile. Bless her! We had a good evening, read some chapters in her book, watched some Veggie Tales, called Daddy for bedtime prayers and listened to music as she fell asleep. 

Day 18
3 a.m. Amy's bed was wet again, so I changed and repositioned her and we were able to go back to sleep. 
8 a.m. Again the bed was wet and cold, I didn't understand why I couldn't just put diapers on her. The catheter was always leaking.
At 11:00 her i.v. port was taken out. Another good sign. The Dr. was in and said her catheter could be removed and her trache would be downsized. When? That was what he told me before! I guess because it was a Sunday, the proper drs. weren't there. The catheter was removed and Amy was set up in her wheelchair. We had some visitors and then Tess came so I could go home. While I was gone the floor doctor came in and said he would be gone for a few days so someone new would be in for him.  Even though Tess read to Amy, watched t.v. and listened to music, they both didn't sleep well. 

6:30 a.m.
Amy seemed agitated, wanting to scratch her nose and bite on her hands. Her oxygen rate went down and her respiratory rate went up. Blood was taken, she was still congested and upset. Tess tried to calm her and finally she calmed and started watching "I Love Lucy"
8:00 For the swallowing test Amy was transferred to a small bed and wheeled downstairs and then transferred to another bed. She was all set up for the test in the chair and was given one bite of applesauce. She aspirated right away, so they stopped the test and brought her back upstairs. They suctioned as much out of her lungs as they could. It was mostly the applesauce.
The PA came in and talked about a PEG tube. This is a tube going into her side right into her stomach. She could still go home with that in and have periodic swallowing tests to see if she could swallow her food instead of aspirating it. 
The trache Dr. was in and he needed to consult about a smaller tube first before he did it.
It would just take more time!
Another PA was in and talked about working with the equipment at home for the trache and PEG tube.
Skin specialists were in and said that Amy's sore on her tailbone was healing nicely. 
Bill, Emily and I came around noon and Tess left. It had been a stressful morning.   
Amy's ICU Dr. was in and he downsized her trache to a 4, the smallest.  
Amy saw so many different doctors while she was in the hospital.  But her first Dr., the ICU Dr., did more for us than all the rest combined. He also had compassion and was truly trying to help us get Amy home. He was too optimistic, though. I wish, just once, he would have told us the worst that could happen...... that Amy might die. 
We consulted with Home Health services and found out that we could care for a trache and a PEG tube at home. 
Amy was up in her wheelchair for about 2 hours that afternoon. She did great. Emily and Bill left for home and Amy soon went to sleep. She had had a long, trying day.

I will always have doubts. What if I had stayed Sunday night and was there for the test Monday morning? Could I have calmed her down? Did the applesauce taste gross and she tried to spit it out? Was she sitting properly and not uncomfortable? Those are questions I asked myself then and still ask myself now. But it wouldn't have changed God's plan for her life. Our days are numbered. I really believe that. And it was her time to leave this earth. 

Emily updated our friends that night.
"This is Emily, updating for Mom: Amy failed her food test. Please pray for the decisions that need to be made in the upcoming days. She did get a smaller trache put in today and is still breathing well. Thank you all for the continued prayers."

My sister sent this to me last Sunday on Amy's birthday. It sums up exactly what I feel.

“Do not judge the bereaved mother. 
She comes in many forms. 
She is breathing, but she is dying. 
She may look young, but inside she has become ancient. 
She smiles, but her heart sobs. 
She walks, she talks, she cooks, she cleans, she works, 
she IS, but she IS NOT, all at once. 
She is here, but part of her is elsewhere for eternity.”

Sunday, March 9, 2014

Amy's first birthday in heaven

As I posted yesterday, it was the eleventh month anniversary of Amy's going home to heaven.  Today would have been her 32nd birthday here on earth and it is her first birthday in heaven.

Quite a few years ago Emily and I and some close friends from Michigan visited a beautiful cemetery that was almost like a park. It had hills and was set on the edge of a large pond or river with winding roads and little houses for the mausoleums. We saw a grave of a child that was all decorated for his/her birthday. (I don't remember if it was a boy or girl.)  I thought how strange this was.  Didn't the relatives realize that the child is no longer there, but in heaven with Jesus?
I also remember a televised news report of a mother who was accused of killing her child and the reporters showed her at the cemetery and she had balloons and was having a party.  I was appalled at that! I knew right away she must be guilty to be doing such a awful thing! I think it turned out later that she was guilty.

I never thought I would be one of those people who put importance on the grave site. Then Amy died........
and my views on a lot of things in life changed.

On Thursday, Bill and I went to the cemetery and he helped me dig out the wreath from under the snow and cut the wires that were holding it on. There is only 5 or 6 inches of snow left, but it is very hard snow. I had never seen the little sweater that my sister knitted for Tinkerbell, as it snowed right after Tess put it on her and she has been covered ever since! 

The Tinkerbell ornament that hung on the wreath on Amy's grave.

We also uncovered the solar panel to make her angel light up, as we had driven by after dark and it wasn't lit. We realized that it was just under the snow!

I wrapped the vine of flowers and butterflies that Tess used in her wedding around the tombstone. Bill helped me wire it on so it wouldn't blow away.

Tess put an ornament on for Christmas that says "Sisters Forever" on it.

I cried so hard, like I haven't for quite awhile. It was so difficult, to know that we weren't going to have a party with cake and candles, that Amy loved so much! I know that she is partying with Jesus. If He knows the very number of hairs on our head, then I do believe that He thinks we are important enough that there will be some kind of celebration in heaven on the day we were born. People tell me to try to think how happy she is, and I do. It is just so very hard on certain days to not miss her here in my life. 

Bill left for Andros Island on Friday. He is going to be gone 9 days this time. Last Sunday, in church, a video was presented that showed photos of what the men did last year.  Amy was is the hospital the whole time they were there. The video was dedicated to Amy and this is the picture I chose to give them to post at the end.

She looks so happy here and at peace. The wind blowing her hair, making her shut her eyes, but she is enjoying it. I can tell by the smile on her face. 

So Bill left Friday and Saturday I went to buy a helium balloon for Amy's grave. On a whim I bought a flag stand with a flag of a cross and butterflies and flowers on it.

This is the helium balloon I bought. I got one that says "Happy Birthday Princess".  Amy was a princess here in this life and I know that now she is a real princess in heaven. 

The ground is still frozen and the snow is really hard, but I was able to get the flag stand into the snow. When everything thaws, I'll be able to get the items into the ground. I know the balloon won't last very long, but I felt good to be able to "give" Amy something.

So with Bill away, the girls and I decided to not be here for a few days. We are driving five hours to spend four days at the beach. It might be cold and I don't expect to get in the water, but it will be something different for us to do.
I stopped at AAA yesterday to pick up a map. There was a young girl there in a wheelchair. She was all smiles when I said hello and told her that I used to have a daughter in a wheelchair. I showed her my brochure of Amy's Story with Amy's picture on the front and told her that she was my daughter. She smiled some more. I told her dad that he could have the brochure and read her Amy's story. He told me that they were in AAA getting the title for a accessible van for his daughter. I told him that we had had one and it was the great! I noticed that she had her coat on the way I would wear it on Amy sometimes, with her arms stuck in the arm openings, but with the back in the front to cover her up in the chair. I smiled and wished them well. I got my map and then retreated to my car and had a good cry. She was so sweet, it made me miss Amy so much. 




 Amy is celebrating with her Grandma and Grandpa, I know they are loving seeing her talk and run and sing!

Happy Birthday, Sweetheart.
I can't imagine what this first birthday will be like for you, but I will be thinking of you every minute of the day. I'll sit and watch the waves come in and out and remember...........

and dream........... 

of the time we will see each other once more and you will smile at me again, but you will also be able to say, "I love you, Mom."  And we'll sing praises together as God holds us in the palm of His hand. 

Saturday, March 8, 2014

Days 14, 15, and 16

Today is the eleven month anniversary of Amy's going home to heaven.  Tomorrow would have been her 32nd birthday here on earth and it will be her first birthday in heaven. 

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.......
16th day, March 15th.
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.
March 16
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.

Wednesday, March 5, 2014

Days 11, 12, and 13

Day 11, March 10, 2013, Sunday-Tess stayed overnight with Amy and was there for all the morning stuff. It was becoming routine by now. The blood tests, the shots, the suctioning of the tubes, changing the pads, sheets, blankets, bathing,  clean gown, medicine rubbed on her feet, washing her face and brushing teeth,  and then that morning for something special Tess braided Amy's hair. 
The doctor's advice was to continue the trials of the CPAP.
Bill and I came at 10 am. She was so happy to see her Daddy! He took this picture of her. 

It is hard to see the little french braids across the top of Amy's head.

Why couldn't I see then that she was failing? The sunken eyes and the dark circles? Why didn't I know that she was so frail? The doctors were all so optimistic. No one ever told us the worst that could happen.We were all so foolishly optimistic. Deep down I was so very scared, but I didn't let on. I told myself to believe what everyone said. "She was going to get better."
We had a good afternoon and evening. It was wonderful to have Bill back to take care of things.
Day 12-in ICU. Looking back over the notes that I and my daughters kept of the month, I see that today was some kind of turning point although I didn't realize it at the time. I started questioning the doctors and I wasn't so sure they understood all that was going on with Amy. 
They had told me that if she needed to have a trache done, it could be done in the room. Now they were saying that she needed to be in an operating room for that to be done. If she needed one so badly, why were they waiting?  When the doctor came in I questioned him, and he didn't have any answers for me, but he said they would take out the intubation tube that day and see how her breathing was on her own, without anything but an oxygen mask.  But if she didn't breathe well they would have to intubate her again. That's when I lost it and said that if they needed to do the trache she should not  be intubated again. To put her through that pain again was not right. He said he was "sorry but that is how things work. The OR rooms have to be scheduled, the Dr. has to cancel patient visits and chances are she might not need to be trached."
It was a business to them, not personal patient care, just a business. 
Another hour passed and then a young resident (new for that week)came in and said they were taking out the tube. He prepped Amy and watched her numbers as they started to rise. She was getting agitated and I imagine she was scared. The resident left to consult with the doctor and when he came back they had decided to not try to remove the intubation tube, but just scheduled her for the tracheotomy the next afternoon.
Maybe I should have demanded they try to see if she could breathe on her own. Maybe I should have been more firm in getting answers to my questions or maybe I didn't ask the right questions. I don't know and it doesn't matter now anyway. 
Amy cried that evening. It about broke my heart. She was so weak. The nurse gave her some pain meds and I put on Veggie Tales for her. She calmed and then more crying. I read to her, sang with her and then put on some soft music to listen to. She was contented but still wide awake after midnight. I finally crashed. The nurses said she was awake most of the night, but didn't cry any more. 

Day 13-Our morning was the usual routine. Amy was happy to see her daddy again that morning.  Tess came about noon and we took turns going to the cafeteria. We visited and Amy dozed.  When it was time to take her to the OR, I assured her everything would be alright. She would go to sleep and we would be here when she woke up. They didn't call us to come back to her room until after she had been cleaned up and was awake. She looked so good! She didn't smile, but she didn't have the mask taped to her face anymore. It was so good to actually see her face again! 
Our Pastor and Assistant Pastor came to visit, but didn't stay long as Amy was starting to cry. She was in pain. Late afternoon a tube was inserted back in her nose to give her some nutrition. I had to leave her room as I was falling apart. I had never left her alone during a procedure in her 31 years of life, until now. Tess and Bill were there, but I couldn't stand to see her in any more pain. 
She was given pain medicine and now she was getting food. No more crying. Tess stayed that night and all went well, but Amy was given two shots to help her sleep.

I really feel that this was the last day that Amy had a chance of a normal life again. Once the trache was done, her little body was just to frail to recover. 
But we didn't know that then. The next morning I sent out a mass email and facebook post before heading off to the hospital again. 

March 13
Amy had a tracheotomy yesterday. She is doing well but experiencing some pain. What this does is help Amy get the oxygen she needs, but through a hole in her neck and not through the tube in her mouth. They are still able to suction out the lungs through this also. She is still fed with a tube that is now going through her nose. She will have the trache in for 4 days and then they will start to wean her off of it by decreasing the amount of oxygen she gets and letting her breathe on her own. Then, if she does well, they will remove it and it will grow back together, just leaving a small scar.
God to give Amy strength to learn to breathe again on her own.
She will not have any more pain.
Strength for the family. Yesterday I hit bottom and had to walk away when they were putting in the tube through her nose. I have never walked away from a procedure done to Amy. Never in 31 years. I just couldn't take anymore of seeing the pain in her eyes and fake a smile and tell her it was going to be okay.
Wisdom for the doctors and compassion for the nurses and others who work with her.

Thank you so very much for all your prayers and sharing Amy's needs with your own churches and prayer chains.
Thanks also to those who have sent cards, gifts, visits, or phone calls.
I could not have done the last 14 days without God's strength and guidance and I know He will continue to give me strength for the next weeks to come also.
Thank you all so very much for the sweet comments you have made. I'm sorry I cannot take the time to respond to them all.

As you can see, I posted what I was told by the doctors. They would start weaning her off the trache in four days. That never happened.

Saturday, March 1, 2014

Continuing--Days 9 and 10

Thursday of this week was a tough one for me. 
I realized that exactly a year ago Amy would have had her last "normal" day at home and my life and her life would never be the same after that. The next time she was home, she had holes cut in her with tubes connecting her to machines to keep her alive. 
Friday was the day that we had taken her to the ER and she was transported to a larger facility an hour away by ambulance. 
So today would have been Amy's first full day in the hospital and we thought she was getting better and going to come home soon. Her Daddy was leaving for a ministry trip the next day and all seemed to be going well.  

I feel the need to continue Amy's story of the last few weeks of her life.  I started writing about the first days of her hospital stay in posts Nov. 22Nov. 27, Nov, 30, Dec. 3, and  Dec. 6.  
I really didn't realize how hard it would be to recall what we had gone through and so I haven't wanted to think about it for quite a while, but now I am remembering and reliving each day as it happened last year.  

As I previously wrote in the posts above, we had been in the hospital for 8 days now. Amy had been intubated, the tube removed and intubated again. Now they were talking about a tracheotomy if she didn't start breathing more on her own. 

Day 9-Tess had stayed overnight and when the doctor came in that morning, he told Tess that Amy was improving each day and no tracheotomy was needed!  Her i.v. port was changed and so was the catheter tube. She was given the shot in her belly to prevent blood clots and also the one to prevent ventilator pneumonia.  I wonder now, how much that hurt her to have all the tubes taken out and put back in again, to get shot after shot.  Did I show enough compassion? Did I comfort her each time? I don't remember. It just tends to blur together after being there for  so long.
Emily and I didn't come in until around noon.  Amy was doing well. She was breathing on her own quite a lot and that was encouraging.   
Our dear pastor's wife came to visit and she stayed for a few hours talking with us. It was such a comfort to me. 
After she left we washed Amy's hair and a kind nurse washed her blanket for me. Amy had a blanket from the time she was an infant. When hers wore out, Tess gave her the one she had when she was a baby that I had saved. She had that one until just about a year before she died and it was so threadbare that I knitted her a new pretty one. She always slept with it up by her face.  We took it on vacations and anytime she would be away from home overnight. I put it in her casket with her and now it lays with Amy under the frozen ground and snow. 
Emily left early evening and Amy and I had a peaceful evening. Her 31st birthday was the next day, March 9, and her daddy was due to come home that day also.We talked about that and her birthday. I told her we would have a big party for her when she got home. 
I told the nurse not to reposition Amy that night, but to let her sleep if she was sleeping. 

Day 10-She did sleep well and I gave Amy some new lotion and perfume that I had brought for her. I cleaned her up and made her smell real good. Everyone who came in told her happy birthday. I had a pink ribbon on her pillow that said, "It's my birthday!" She was treated like a princess. 
The doctor came in and after looking at her chart and examining her, he kind of threw up his hands and said,"Science is only 15% of treatment and the rest is judgement, and sometimes that is guessing."  She was borderline with her breathing. Even though she was on CPAP a lot of the time, she was still needing the ventilator to help her breathe. He did not want to make a decision as to trache or not. It was a Saturday anyway and nobody does anything in the hospital on the weekends! 
That afternoon Amy got a call from each of her siblings and also my parents to sing, "Happy Birthday."  We had a few visitors come and that evening her sisters came. I told Amy goodbye and that her Daddy would be there the next day to see her! That was probably a mistake because Tess read her a couple of chapters in her book, and then some friends called and sang happy birthday to her again, Tess read some more and she still wasn't sleepy! She put a Veggie Tale on for her to watch (we brought in a portable DVD player) and then finally put on a CD to listen to and told her, "We need to sleep." Tess thinks she went to sleep around 11:00.

I would not have been able to cope with Amy being in the hospital for so long if it had not been for my "girls." My daughters were wonderful in constantly driving for me, so I could unwind, staying every other night or every 3rd night so I could sleep in my own bed. Making sure I walked to the cafeteria to eat warm food and just being there to comfort me. I will never be able to thank them for the support they gave me and the love they always gave to their sister. 

Tess and Emily have grown closer since Amy died. Being 7 years apart, they never really "played" together, but Tess was more of a mother and babysitter to Emily as she grew up. Tess left for college when Emily was 11 and didn't spend a lot of time home after that. 
They have different personalities. Tess takes after her dad, is quiet and reserved,  and Emily takes after me, speaks her mind.

Amy was the glue that held our family together. When there were problems, arguments, divisions, Amy was always there, wanting our love, smiling, loving us in return. She always made us humble, she loved us when we were not loving. She smiled even if we were not smiling and she loved to laugh when someone got yelled at! She was precious. She was Jesus to me. 

Emily and Tess on her wedding day

I will continue to post every few days until I have the story of her hospital stay completed.