Sunday, December 15, 2013


I was hoping to post more about Amy's last month and I was even hoping to get her whole last month posted before Christmas, but that isn't going to happen. It was harder than I realized to remember her last month and this is not an easy time of year as it is, let alone bringing back memories of the worst time in my life. I guess I just thought if I could tell you all about it, maybe I wouldn't have to think about it again. 

Well the busyness of the Christmas season has occupied much of my time and I actually try not to think about years past and traditions that we are not doing this year. I have even avoided listening to Christmas songs, when I have a choice, as it is just too hard. 

But there were some highlights of the past two weeks that brought joy (and a few tears).... going to a cookie exchange and getting to hold a little baby for awhile. I showed him the lights on the Christmas tree and I shed some tears as I remembered Amy staring at our tree and the special lights I would  put up in her room.....attending a ladies Christmas party and getting to hold another wee little one, but this time there were no tears and I enjoyed singing some carols and visiting with my friends.....short visits by two doctor friends that knew Amy (but didn't treat her) and each gave me words of comfort........hugs from 5 special children that my oldest used to babysit. They are so grown up now, but each still gave me a hug.....Showing my daughter-in-law how to make our family's special "Jesus Birthday Cake.....Christmas greetings in the mail.....working on a special surprise for my husband for Christmas. We already agreed to not get each other any gifts. but I'm making this, so it doesn't count!

This morning in church we were singing carols and this memory flashed through my head. Every night in the month of December Amy and I, and whoever else might be here, would sing through the Christmas section in the hymnal.  We would sing at least one song, sometimes two or three if Amy wasn't really tired. So as I thought of those special times the tears started. Then our song leader said that all the angels in heaven are singing with us right now even though we can't hear them. Wow! I could hardly keep the sobs inside. 

We said our "Merry Christmas' and goodbyes" to  our friends as we are leaving for my childhood home about 1000 miles away on Wednesday. We don't plan on coming back for about 3 weeks. We are visiting some friends and celebrating Christmas with my 83 year old parents. It is just too hard to be in this house where we have celebrated every Christmas of Amy's life. I am glad that our family and friends are willing to let us spend some time with them.

I have finished my study of Romans. In Chapter 15 these verses really meant a lot to me:

Verse 4 "For whatever was written in earlier times was written for our instruction, so that through perseverance and the encouragement of the Scriptures we might have hope. 
Verse 13 "Now may the God of hope fill you with all joy and peace in believing, so that you will abound in hope by the power of the Holy Spirit."

That's what I'm praying for in the next couple of weeks.... that I will be able to have hope and joy and peace. 

I won't be blogging while I am gone, but I do plan on finishing the story of Amy's last month of life on this earth when we get back in January.

I found this poem and wanted to share it with you. I don't know who wrote it.

Christmas With the King
I see the countless Christmas trees, around the world below
With tiny lights, like Heaven’s stars, reflecting in the snow.
The sight is so spectacular; please wipe away your tears,
For I’m spending Christmas with Jesus Christ this year.
I hear the Christmas songs that people hold so dear,
But the sound of music can’t compare with the Christmas choir up here.
For I have no word to tell you, the joy their voices bring,
For it is beyond description to hear an angel sing.
I can’t tell you the splendor or the peace here in this place.
Can you imagine Christmas with our Savior, face to face?
I’ll ask Him to light your spirit, as I tell Him of your love,
So then pray for one another as you lift your eyes above.
Please let your hearts be joyful, and let your spirit sing,
For I’m spending Christmas in Heaven
And walking with the King.

Monday, December 9, 2013

Eight Months

Yesterday was the eight month anniversary of Amy's passing. My husband and I went to church, then went to the cemetery to put a wreath, some greens, and Amy's Tinkerbell ornament (I had  bought for her last year) on her grave. It was snowy so softly and if a cemetery can be beautiful, it was. Gone were the dead grass and the dead leaves and the sticks that had blown off the trees. It was all covered in white. Some of the tombstones were covered too. Amy's was, as it slants a little up toward the sky. We had planted a few daffodils in front of her stone a few months ago and as our weather has been very strange, a couple of them had started to grow and one right in the middle had even formed a bud....A reminder to me that Amy is still alive, just not here where we can see her.
I sometimes talk to her while I am there. It seems like a safe place where people won't think I am crazy. I told her I loved her and missed her, that I wanted her to be able to see the special ornament I had gotten for her this year. Of course I cried, but not in agony like I had the night before........... 

I was getting her wreath ready and wiring her little ornament to it and I just started sobbing. I wanted to scream. "No mother should have to give her child a graveyard decoration for a Christmas present." But I just sobbed and sobbed and didn't scream. 
A week before I had driven by the cemetery and it was so cold that I just sat in the car and talked to Amy as I can see her grave from the car. I started to get really shaky thinking about Amy's little body freezing. I felt like I might hyperventilate. I had to firmly get a grip on my emotions and tell myself that she wasn't there before I went crazy. I told myself that she is with Jesus and is warm and happy. Then my mind went to those who have no hope. Who only think that their child is in the ground and there is no life after death. How can a person live like that? I praise God that He has given me assurance that I will someday be with Amy.

I have explained before that my husband is a man of few words. He doesn't show his emotions very often. Yesterday at the cemetery, it was just the two of us.  He had put some Christmas flowers on his parent's grave and then we decorated Amy's grave. I was talking to Amy and then I asked him if he wanted to say something. He struggled and struggled and then finally sobbing said, "You have a merry Christmas Amy."  We both held each other and cried. I then told Amy that Mommy and Daddy would be with her soon.

It is getting easier, but knowing she would have loved seeing the Christmas lights, hearing the carols and the Christmas hymns we sang yesterday in church makes it so hard for us left here. I just have to keep telling myself that the dazzling display of lights in heaven are beyond anything we can imagine on earth. And the music must be glorious! 

Amy loved Christmas. She is celebrating this year with the One Who we sang "Happy Birthday" to on Christmas eve every year of her life. Amy loved birthdays too.

This is going to be the best celebration of all for her!
Someday we will all celebrate Jesus' birth together again. What a wonderful day that will be!


Friday, December 6, 2013

Days 6, 7, 8

(Correction to previous post.  When Amy had the breathing tube in her, she was getting fed through a tube in her nose. I had completely forgotten about that until I read my diary for today.)

 Amy and I woke up to sunshine on Tuesday morning! We had both managed to get some sleep and our day started off with the normal routine of early morning x-ray and lab work. The troop of interns and the Dr. came in and we were told that Amy's lungs looked better and that the bronchial blockage was not there. That was the one positive thing, but..... she had failed the breathing test. The way they did this was to decrease the amount of work that the pump was doing to make her breathe and see if she would take breaths on her own. This is done with the tube still going down her throat; it is just the controls on the machine that they change. They would also keep a close watch on how fast or slow she was breathing and the oxygen levels. Sometimes with the machine still doing most of the work, Amy would take a breath on her own. The machine would show us this. But when it was slowed down to the point of Amy doing most of the work, she couldn't do it. So the Doctor said the concern now is to get her off the intubater so she will not have to have a tracheotomy in the future. He plans to wait until the end of the week to see how she is doing. 

Every so often over the next couple of days Respiratory would come in and turn the machine a little lower so Amy was taking more breaths on her own. This is how they tried to build up her lung strength so they can remove the tube. 

The Wound Department was also in to see Amy as she had a bedsore. It was right on her tail bone. I believe this happened when the cat scan was done and they did not transfer Amy correctly. Once she was on the hard board they just slid her to position her instead of lifting and placing her. I believe the pressure on that board caused this sore. So now they are getting her a special sand/air bed that will simulate her water bed that she has at home and it is also heated. 

Yesterday the doctor had ordered her nutrition intake to be doubled. Now today she has diarrhea. They won't let me wear diapers on her and it just goes everywhere. This makes it really hard to  keep the bed sore clean at all times. The catheter doesn't seem to be working properly also, so they took it out and tried to reinsert it again. Poor Amy. She became very agitated and had to be given some medicine to calm her down. I'm sure it caused more "discomfort" (PAIN) then they said it did! I think the medical profession has a whole vocabulary of their own for the word pain. The new bed came that evening and Amy slept well. She didn't need any medicines to help her sleep. She really liked her new bed. I think having it heated helped so much. The motor was rather noisy though, but I also think the steady hum helped her sleep better.

Wednesday Day 7
The new catheter still isn't working so it was taken out after the normal 5 a.m. x-ray and lab work. Amy had another new nurse today. Every time someone new came in I always gave them a copy of Amy's story. This had just been printed a few days before Amy went in the hospital and it was our way of spreading the news of Rett Syndrome, what Amy was capable of understanding, our beliefs and the hope that others could have through Jesus. Many people were blessed by her story and would talk more directly to her instead of just me.

We also had a new intern that day. I was informed that he was called a "resident". He was always a part of the team who came in every day, but now he would come in about an hour or so earlier and then he would give the report to the doctor in front of the whole group. For the first few days we had a young woman from China who Amy and I got along with really good. This guy was a jerk! He asked Amy to hold up two fingers if she could hear him. Has he not been listening all week while he was in here?
Amy's bed was changed again ( it would be so much easier if she was allowed to wear diapers) and by 8:30a.m. She was sound asleep again. There was heavy snow overnight and it was snowing again...big wet flakes. I wondered if my girls would be able to come visit that day. 

The doctor and team came in around 10:00a.m. and Amy was still sleeping.  The young resident gave his report and he must have been nervous because his hands were shaking. The doctor asked him some questions and he stumbled on the answers. (I wonder what that young man is doing now?) As Amy is still not breathing well on her own, the Dr. planed to make a decision to do a trache, or not, the next day and then it would be scheduled for Friday.  I asked him what this involved and he said it would be done in the room and then a feeding tube would be inserted again in through her nose. She would be more comfortable without the huge tube in her mouth and she could learn to breathe faster on her own.
Amy slept most of the day. She had another catheter put in around noon. I think it is finally working right. Quiet afternoon.  We watched some tv and went to sleep early for the night.

Thursday, Day 8
Amy slept well with an early wake up at 4:30a.m. for an x-ray, labs at 5:30, pulmonary at 6:00 and respiratory at 8:00. Amy was very groggy through all this. She did well on the test, breathing on her own. She was breathing a little faster, but on her own! The settings on the machine were set so she was breathing on her own. Praise God! I was so happy! The doctor wasn't as happy. He said he will be happy when she is completely off the breathing machine. 

The nurse and I gave Amy her bath, and placed her on her left side. She soon started struggling to breathe again. She was breathing too fast and her heart rate went up so Respiratory was called again and she was put back on full power of the machine. They said they would try again in a few hours. Amy needed the full power again to be able to rest.  She was able to watch some tv and rest well for a few hours. Once again she was put on CPAP (breathing on her own) but after just a few minutes the monitor started beeping, her oxygen had fallen below 80, Her heart rate was above 120 and so they had to stop and put her back on the full machine again. Tess came and after visiting for awhile and explaining the last few days, I headed for home as Tess was going to stay for the night.  Three nights in a row with little sleep was very draining on me. I noticed that my emotions were on edge and I didn't have much desire to walk to the cafeteria, so I would just grab something from the snack machines and get by. I knew I needed to stay strong for Amy. I knew I could not do this on my own power. I needed prayers and I started mass emails and posting on facebook. Here was my first posting the last time I was home:

"For my friends who don't know, Amy is in ICU for the fifth day. She has pneumonia and a bladder infection. She is on a respirator and a feeding tube. Last night was her first peaceful night of sleep in a long time. We are taking turns staying the night, so someone is always with her. Please pray for God's almighty healing in whatever way is His will for her life. Thank you.

I posted this when I got home after our 8th day:
I wanted to update you on Amy. She will be spending her 9th day in the ICU, still on a respirator and a feeding tube. Her pneumonia and urine infection are better. The main concern now is getting her off the respirator. She doesn't have enough strength to breathe on her own and they are talking of doing a tracheotomy. The Dr. will make the decision this morning. If he decides on that, it will be done this afternoon. Tess stayed the night with Amy and Emily brought me home for a much needed sleep in my own bed. Bill called last night and he was also able to talk to Amy.
Please PRAY.............Amy will breathe on her own today so that she doesn't have to have a tracheotomy.
I will continue to be strong for her and that my knee pain will go away so I can get more rest while I am there.
That I show Christ to others with my attitude and love for Amy.
Bill will have a safe flight home on Sat. (tomorrow!!!)
Wisdom for the doctors and compassion for the nurses.
Thank you so much for your prayers!
Amy will be celebrating her 31st birthday tomorrow in the ICU. 

None of us knew that Amy would never celebrate another birthday here on earth.  We asked for God's will in her life, but did we really think that it might lead to death? We say that the ultimate healing is to be with God. Did I really believe this deep in my heart? My faith would be challenged time and again over the next few weeks.

Tuesday, December 3, 2013

Part four--Days 4 and 5

I decided in the last post to use my family's given names as it will make our journey easier to tell. Our son, James, and his wife, Laura, were working 2000 miles away for the winter months, that is why they are not mentioned. 

Day four began with snow, and I said goodbye to Bill and then Emily as she had to work.  My daughter's employers were very good to them during all of this to give them as much time off as they needed.  
I was able to make it over the mountain by myself for the first time, in the snow, with lots of praying.  Parking spaces, usually difficult to find, were easy today because of the snow. One small blessing.

I was so happy to see Amy! She had endured a restless night, with a breathing treatment at 11:30 and then her bed needed to be changed at 3:00 a.m. because her catheter wasn't working right.
She ate pureed eggs and drank apple juice and orange juice. Amy had another breathing treatment and then the Dr. came with some bad news. Amy was still very congested, she had a low grade fever and they decided to stop the breathing treatments and start suctioning through her nose. She hated that and would thrash her head back and forth and cry and cry. There was a lot of blood from her nose also and I was afraid they were really hurting her. 
Tess had to leave for work, and so they said their goodbyes. 
Memories.......... Fourteen years earlier, Tess leaving for college for the first time and Amy blinking and blinking, telling her goodbye. They were so close. Amy's best friend for 16 years.
Amy refused to eat any lunch and dinner.

The one area where Amy had control in her life was with her eating. She would clamp her jaws together and no matter how much we would try, when Amy didn't want to eat, she wouldn't eat! She was also very good at holding food in her mouth if it tasted bad and waiting a very long time to spit it out. I would usually get impatient with her and use a spoon (never my finger--I learned the hard way over the years) to get the food out in hopes that I could get her to eat something else. As Amy was always so very thin, I was constantly worried about getting her to eat when she didn't want to. 

I do believe that with all the suctioning of the tube going through her nose and down her throat it was making her nauseous and also very mad. She had just gotten that huge tube out of her throat and now they were causing her more discomfort.
Around 7:00p.m. Amy started having problems breathing again. After repeated attempts and failures with the suctioning by the nurses, respiratory was called in.  Amy's oxygen levels were very low so they started talking about putting the ventilator (breathing tube) back in. 

When Bill and I made the first decision to let the doctors put Amy on the ventilator, we decided at that time to never do it again. Even with a shot to calm Amy down and numbing the area, it caused her a lot of pain to have the tube put down her throat. We decided, if the occasion ever arose again, that she would need a ventilator, that we would not to do it.

We had no idea that occasion would be soon, for this same illness. The doctor had told us she would be doing ok with a few days of treatment.  Bill couldn't be reached as he was out of the country. I was stressing out big time and so I called Tess and cried and cried. I ended up calling the ER doctor from our home hospital (cried again) and talked to him also. Did I pray? I don't remember. I just know I felt very alone in that big hospital. Amy didn't seem to be in distress, but she wasn't taking deep breaths. She wasn't getting enough oxygen with each breath. Was I going to watch her slowly die? If I waited too long, would it be too late?

I finally made the decision to let them intubate Amy again. It was done a little after midnight. Now it was Sunday,  Day 4.

Tess and Emily came around noon. We just relaxed and took turns going to the cafeteria. We didn't want Amy to smell the food. She was getting nourishment through the I.V. but her stomach was empty and she could still smell! She slept off and on. 
Tess stayed the night and Amy slept 9 hours!
Day 5 
At 5:00 a.m. they came in to do another xray, blood work, gas levels, etc. I arrived about 10:00 and Amy was taken for a cat scan. 
Amy was assigned a new doctor for the week. He decided to double her nutrition intake. 
The chaplain visited again. She was an elderly little nun and so cute! She brought Amy a pretty pink crocheted blanket that had been blessed. She would always lay her hand on Amy's forehead and hold my hand while she prayed. She was a jewel. I wonder if she knows that Amy died? She came in everyday for 2 weeks, but then Amy was moved and I never saw her again.
The results of the CT scan: Amy had a lot of fluid in the 3rd lobe of her right lung and a possible blockage in the bronchial tube. 
Amy and I both slept well that night. It helped that we brought in her CD player so she could listen to music and stories. I also think we were both so very tired. It had been 5 days! I had no idea that it would be another 25 days until we were home again and that Amy only had 35 days of life in this world left.