It is New Year's Eve, but I am not ready for this holiday, like I was not ready for Christmas, but for some reason it was easier for me to slide into Christmas. Perhaps because of all the hope that comes from knowing that God is with us. For that reason, I am reminding myself of that fact and working toward living into God with us and allowing in the changing of the new year without much fanfare. 2016 was not a bad year for us. It was full of hope and dreams for new life. I did not know it would end so tragicly with Doug laying in the hospital paralized from the neck down and only able to swallow tiny pieces of ice chips. Ironically this may be the first night that I am laying down to sleep that I am not afraid he may not make it till morning. For the most part, in this moment, he is stable. Stable is very different than what I would have called stable a month ago.
Starting 2017, with Doug in this condition, is leaving me little room for wanting to set New Year's resolutions. The only real resolution I have right now, is to do whatever I can to keep Doug alive and to give him his life back. And even that is questionable. Each day the doctors talk to me about "our plan".
Still, I got up this morning, did a few chores around the house and started for the hospital. I stopped at Starbucks to pick up coffee to take with me. Yesterday I did the same thing. There was a line of cars yesterday. I became lost in my concerns for Doug as I waited. When I pulled up to the window the woman said, we tried to get your order but you did not respond. That was because I was not really there. I explained to her my husband is in ICU and I apologized for being so distracted. She was very sweet. She said your coffee is on us. I was very touched. Today I pulled in again. This time I ordered and when I got to the window the clerk said the woman two cars ahead just bought your coffee and bought you a $25 gift certificate. I was surprised. The clerk look surprised too. I said "Well, she may be a friend". Again I was not paying any attention to what was happening around me. I told the clerk that perhaps it was someone who knows my husband is in ICU. He said "Oh, what is your husband's name? I will pray for him." I was so touched. Then when I came into Doug's room a nurses aide was with him and talking to him. She was giving him ice chips. We greeted each other when I came in. She said how much better Doug was doing and that she had been praying for him. I thanked her and told he that meant so much to both of us and Doug said "Amen!"
Perhaps God knew that I needed this boost this morning and the experience of God in others this morning. Because all these little things made the day brighter and were only a few of the sweet things that happened today. The SLP was in and she started giving Doug 1/2 tsp of water today and showed me how I could do this, along with positioning his head and prompting a swallow. This was a big step forward. Doug was more talkative this morning. He was able to form sentences and could be understood. Then our friends Ludee and Ted came by with canned, home made, spaggetti sauce. And Ludee being an OT I asked her for a little help with Doug, to give me some recommendations on how to get him moving. Ted talked to Doug about a scripture passage and Doug could recite the passage from memory. Then our friends Lisa and Doug came by and sat and talked with Doug and I. He enjoyed the visits. He was tired them and slept for a while. Then my sister Kate brought over some Chinese food and Fr. Dave showed up. We had a toast for the new year. About 9:00 Doug told us that he wanted to go to bed. He wanted the TV turned off and he wanted the lights out. He was kicking us out. Instead of being offended, we were delighted. He was talking and taking some control over his environment. Overall it was a good day.
Tonight Wayne is working with him again. We chatted many times before we left. Doug is in good hand and so I will sleep.
It is time to pray.
Holy One, this calendar year is coming to a close and a new year is beginning. What is time to you? Do you mark time? Or is this just a human construct? With all our limitations, we wonder when, how long, or how soon? You are not limited by time. Knowing this I still ask, please heal Doug. Give him his body back, so that he can move and control it. Give us courage in the days to come to face the challenges before us with the spirit of hope and trust. And Lord,if it is your will, help us to live in joy and expectation and in anticipation for the year that is to come. Amen.
Saturday, December 31, 2016
Friday, December 30, 2016
December 30, 2016: Day +41
This morning started early with getting Doug's brother Dan and son Dan and kids (and two dogs) off and on the road. Son Dan dropped Brother Dan at the Boise airport on his way to San Diego via highway 93, south of Twin Falls. Dan extended the father-son tradition to his boys of buying donut holes to eat in the car on the way. Doug and Dan always started each adventure with little chocolate donuts. And for me, Dan left lots of left-overs in the freezer for me to eat to get me through for some time. I am very grateful for this. Dan is a wonderful cook. But vacation time is over. The house has been very busy for many days. Now as I write this, the house seems strangely quiet, just me and Stryder.
It took me a while to get to the hospital this morning. After seeing off the family, I did some laundry, made an appointment for my knee and answered some texts. It was nearly 11 before I got to the hospital. Upon arrival I found Fr. Dave reading his good friend Doug the morning newspaper and providing him a commentary on the days news. I was so grateful to see him sitting there keeping Doug company.
Doug made small gains again today. His swallow is a little better and his speech has improved. By the end of the day he was stringing more words together and answering question. He even made some funny comments and laughed. He had us all laughing. It was so pleasurable to see him smile.
Today his kidneys are stable. His heart rate is within a normal range and his blood pressure was only moderately high. He can turn his head slightly and nod up and down. He is now giving facial expressions. The big problem is that he cannot move anything below the neck.
The doctors are very concerned about the lack of movement as we all are. They are exploring reasons for this. The most logical reason is polyneuropathy. They did an MRI today to look for other causes, but found nothing really changed since Doug's last MRI in September.
Lack of movement is terribly concerning. The doctors are very concerned if he will recover movement. Over the next few days I am sure I will be having daily meetings with the doctors presenting options. Sometimes the options seem really dismal. I feel like I am riding a roller-coaster. Every time something good happens, something else is taken away. I keep wanting a crystal ball to see the future, to develop the most appropriate plan. but apparently no one has one. Our nurse Lorraine says you just keep praying and taking the next most logical step.
Lorainne and Shantel were our nurses again today. I love them so much. They feel like family. They are professional, but also kind and caring. They are becoming like family. I feel like I can trust them and rely on them for help and support. I know that they care about us. Sadly, they won't be back until Monday. Wayne was there tonight. He too has become like a friend. He comes in and sits down and chats with us. He catches up on what has been happening and is really supportive. It is easily to leave at night when he is there.
Tomorrow, I will meet with the doctor again and we will see where Doug is at tomorrow. Please pray that he will be moving his body.
Holy and most gracious father. We thank you for friends who care for us and lift us up when we are scared. We thank you for friends and family who are walking this path with us. We ask you to guide us in developing a health plan for Doug. Give us wisdom to use our knowledge to support Doug's medical needs and his quality of life choices. And Lord we ask that you watch over Dan, the kids and the dogs as they drive home. And Lord, give us courage to make difficult decisions and the peace we need to live with these decisions. In your name we ask it. Amen.
It took me a while to get to the hospital this morning. After seeing off the family, I did some laundry, made an appointment for my knee and answered some texts. It was nearly 11 before I got to the hospital. Upon arrival I found Fr. Dave reading his good friend Doug the morning newspaper and providing him a commentary on the days news. I was so grateful to see him sitting there keeping Doug company.
Doug made small gains again today. His swallow is a little better and his speech has improved. By the end of the day he was stringing more words together and answering question. He even made some funny comments and laughed. He had us all laughing. It was so pleasurable to see him smile.
Today his kidneys are stable. His heart rate is within a normal range and his blood pressure was only moderately high. He can turn his head slightly and nod up and down. He is now giving facial expressions. The big problem is that he cannot move anything below the neck.
The doctors are very concerned about the lack of movement as we all are. They are exploring reasons for this. The most logical reason is polyneuropathy. They did an MRI today to look for other causes, but found nothing really changed since Doug's last MRI in September.
Lack of movement is terribly concerning. The doctors are very concerned if he will recover movement. Over the next few days I am sure I will be having daily meetings with the doctors presenting options. Sometimes the options seem really dismal. I feel like I am riding a roller-coaster. Every time something good happens, something else is taken away. I keep wanting a crystal ball to see the future, to develop the most appropriate plan. but apparently no one has one. Our nurse Lorraine says you just keep praying and taking the next most logical step.
Lorainne and Shantel were our nurses again today. I love them so much. They feel like family. They are professional, but also kind and caring. They are becoming like family. I feel like I can trust them and rely on them for help and support. I know that they care about us. Sadly, they won't be back until Monday. Wayne was there tonight. He too has become like a friend. He comes in and sits down and chats with us. He catches up on what has been happening and is really supportive. It is easily to leave at night when he is there.
Tomorrow, I will meet with the doctor again and we will see where Doug is at tomorrow. Please pray that he will be moving his body.
Holy and most gracious father. We thank you for friends who care for us and lift us up when we are scared. We thank you for friends and family who are walking this path with us. We ask you to guide us in developing a health plan for Doug. Give us wisdom to use our knowledge to support Doug's medical needs and his quality of life choices. And Lord we ask that you watch over Dan, the kids and the dogs as they drive home. And Lord, give us courage to make difficult decisions and the peace we need to live with these decisions. In your name we ask it. Amen.
Thursday, December 29, 2016
December 29, 2016: Day +40
Today as I went to the hospital, I had braced myself. The doctors did not seem very hopeful and yesterday Doug was not doing as well as the day before.
When I arrived the Speech and Language Pathologist was working with Doug. She had done the swallow test with Doug the day before and he had not passed it. Today she was working with him on swallowing. She was placing tiny ice chips on his tongue. She was working with him on tongue movement. Doug was much more alert today. He was looking at her and listening to her. Me, forever being the Special Education teacher have worked with lots of students who need swallowing support. I immediately started giving Doug verbal prompts to swallow and to remember to close his lips. Then he did much better. Then of course I was using my teacher voice. :) The best part of the consultation, is that I could see what she was doing and then the rest of the day, I worked with Doug on the same thing.
The next person to arrive was the Occupational Therapist. Today was a different person than we have had in the past. He was very good. Finally I felt we had someone who was more goal oriented. He was happy to teach me the things he is doing so that I could do the same thing with Doug many times throughout the day and not just for the 20 minutes the therapist is with him.
The same happened with the PT. However I don't see that the PT is as goal oriented. It seems he is more interested in just providing 15 minutes of range of motion. I am not as worried about that right now, because the recommendations that the OT gave me will help with Doug's lower body as well.
I have been asking about sensory and motor integration and have not gotten a good response until today with the OT. Doug does not have any movement below his neck. The diagnosis is polyneuropothy. This may happen with people who have been intubated for a long period of time apparently. It is probably also complicated by Doug's weakness from the MS. From my experience, people who appear to lack body awareness and or movement, is that you need to do more sensory exercises with verbal prompts to help the person to experience their body and to help them know where their body is in space. You verbally cue while performing the exercise on the person so that the brain is connecting to the movement. I was reassured to find that the OT knew exactly what I was talking about and taught me some things that I can to.
All morning, Doug responded to the therapists; meaning that he tried to communicate. This is much better that the day before. In the afternoon, Fr. David, our son Dan and Doug's brother Dan stayed with Doug so that I could go to the bank and get my hair cut and colored. This is the first real break I have had for 3 weeks. Dan texted me a few times while I was gone trying to figure out what his dad was saying. Once he told Dan he wanted a beer and then laughed. This was amazing that he said something funny!
Today they restarted the Clinimix that will provide Doug with nutrition until we can find out if he can develop the swallow and avoid a feeding tube. The nurses are continuing to work with Doug, changing his positions frequently to avoid bed sores, keeping his mouth moist and monitoring his vital signs along with his breathing. His heart rate was down today. His blood pressure is still a little high, but his respiration and oxygenation level is looking better.
Today is more hopeful. But we are a little sad as well. Dan and his two kids are leaving in the morning and so is his brother Dan. I will miss having them here and all the support they have provided.
Some news about me. I got the MRI for my knee yesterday and picked up the report today. It is a little more serious that I thought. I have a torn meniscus, edema, sprain and some thinning of the cartilage. I have an appointment to follow up with the Orthopedic doctor.
Today we pray:
Holy Lord, we watch for the light. Look with favor on your servant Doug. Continue to provide him strength and courage to face each new day. Support all that care for him, so that they may have the tools and skills they need to heal him. And Lord, we pray that you will heal his body so that he might feel and move his limbs. We pray that you will heal the muscles in his throat so that he can swallow and speak clearly. All this we ask in Christ's name. Amen.
When I arrived the Speech and Language Pathologist was working with Doug. She had done the swallow test with Doug the day before and he had not passed it. Today she was working with him on swallowing. She was placing tiny ice chips on his tongue. She was working with him on tongue movement. Doug was much more alert today. He was looking at her and listening to her. Me, forever being the Special Education teacher have worked with lots of students who need swallowing support. I immediately started giving Doug verbal prompts to swallow and to remember to close his lips. Then he did much better. Then of course I was using my teacher voice. :) The best part of the consultation, is that I could see what she was doing and then the rest of the day, I worked with Doug on the same thing.
The next person to arrive was the Occupational Therapist. Today was a different person than we have had in the past. He was very good. Finally I felt we had someone who was more goal oriented. He was happy to teach me the things he is doing so that I could do the same thing with Doug many times throughout the day and not just for the 20 minutes the therapist is with him.
The same happened with the PT. However I don't see that the PT is as goal oriented. It seems he is more interested in just providing 15 minutes of range of motion. I am not as worried about that right now, because the recommendations that the OT gave me will help with Doug's lower body as well.
I have been asking about sensory and motor integration and have not gotten a good response until today with the OT. Doug does not have any movement below his neck. The diagnosis is polyneuropothy. This may happen with people who have been intubated for a long period of time apparently. It is probably also complicated by Doug's weakness from the MS. From my experience, people who appear to lack body awareness and or movement, is that you need to do more sensory exercises with verbal prompts to help the person to experience their body and to help them know where their body is in space. You verbally cue while performing the exercise on the person so that the brain is connecting to the movement. I was reassured to find that the OT knew exactly what I was talking about and taught me some things that I can to.
All morning, Doug responded to the therapists; meaning that he tried to communicate. This is much better that the day before. In the afternoon, Fr. David, our son Dan and Doug's brother Dan stayed with Doug so that I could go to the bank and get my hair cut and colored. This is the first real break I have had for 3 weeks. Dan texted me a few times while I was gone trying to figure out what his dad was saying. Once he told Dan he wanted a beer and then laughed. This was amazing that he said something funny!
Today they restarted the Clinimix that will provide Doug with nutrition until we can find out if he can develop the swallow and avoid a feeding tube. The nurses are continuing to work with Doug, changing his positions frequently to avoid bed sores, keeping his mouth moist and monitoring his vital signs along with his breathing. His heart rate was down today. His blood pressure is still a little high, but his respiration and oxygenation level is looking better.
Today is more hopeful. But we are a little sad as well. Dan and his two kids are leaving in the morning and so is his brother Dan. I will miss having them here and all the support they have provided.
Some news about me. I got the MRI for my knee yesterday and picked up the report today. It is a little more serious that I thought. I have a torn meniscus, edema, sprain and some thinning of the cartilage. I have an appointment to follow up with the Orthopedic doctor.
Today we pray:
Holy Lord, we watch for the light. Look with favor on your servant Doug. Continue to provide him strength and courage to face each new day. Support all that care for him, so that they may have the tools and skills they need to heal him. And Lord, we pray that you will heal his body so that he might feel and move his limbs. We pray that you will heal the muscles in his throat so that he can swallow and speak clearly. All this we ask in Christ's name. Amen.
Wednesday, December 28, 2016
December 28, 2016: Day +39
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| Doug with his brother Dan |
Doug slept most of the day today. He would wake up when I called to him however he is having a hard time focusing and his speech is very difficult to understand. He still cannot move anything below the neck and has a very difficult time moving his his. He did seem to be tracking people with his eyes a little better today. They did a swallow study this morning, that I was unable to attend.
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| Angie and Dan with grandson's and foster grandson Trey |
I spent most of the day at the hospital, along with long visits from our son Dan and Doug's brother Dan. My daughter Angie brought the little grandson's over for a visit with Grampa. She took care of the boys most of the afternoon. My sister came over this evening. Fr. David stayed with Doug, while my family had dinner together. That was so thoughtful. And Dan made a wonderful dinner for all of us.
The doctors warn me that Doug is still very ill and he is at-risk for other infections or other problems. This is difficult to hear, but I know they are trying to protect me and help me to prepare for the future. Doug needs lots of prayers.
Heavenly Father, you know what it is like to loose a son. Doug has worked so hard to heal and to be made new after this devastating disease. Please look on him, your servant and bless him. Heal him from all illness and give him confidence to face the days to come. In your name we ask it.
Tuesday, December 27, 2016
December 27, 2016: Day +38
It is the 3rd Day of Christmas.
This morning I called the hospital to see if the pulmonary intensivist doctor had evaluated Doug yet and determined if he would be taking the tube out today. It is day 10 since the intubation. Our nurse Lorraine said that he had seen him and that they would be removing the tube and that it would happen sometime between 9 and 10. I quickly finished getting ready and notified the rest of the family so that we had people to take care of the kids and also to allow anyone who wanted to be at the hospital enough time to get there. Corinne and I left for the hospital. She was also ready to leave for the airport because her flight was leaving at noon.
When we arrived at the hospital, Doug was still minimally responsive. He could not squeeze my hand or follow me very well. I explained to him what was going to happen and then after anointing his head we all prayed for him. Minutes later the team that was going to remove the tube arrived. It took only a few minutes to remove the tube and then suction some of the mucus from his mouth.
He was so happy to have the tube out. For 10 days he has had the tube down his throat. He has been paralyzed, sedated and given pain medication. He has been unable to control anything that has happened to him. They regularly give him injections, draw blood, listen to his vitals, and move him. They shine lights in his eyes to check his pupils and swab out his mouth. He has had absolutely no control When you think about it, it is really like torture.
His first words over and over that were garbled were "Help Me, Help Me". For the first few hours he said this time and time again. It is somewhat heartbreaking to me to realize how afraid he was. The doctor had warned me that many people experience PTSD after such treatment. I now understand more fully what he was saying.
Everyone in the family, the staff and Fr. David were all really glad that he was breathing on his own. That was most important and our biggest concern. He is getting oxygen through his nose, but he is breathing unsupported with his own lungs.
He has not been able to move his body at all yet. He could turn his head somewhat and move his fingers a little bit. But he is not moving anything else. His speech is very garbled, but he tried to talk all morning and into the early afternoon when he became very tired. I am sure his throat and tongue are all very swollen and sore. It will take a little time for him to speak clearly. Also he is still very swollen with edema all over his body. He even has blisters on some areas of his body, because the fluid is trying to escape his body any way it can. On the other hand as his kidneys have improved over the past couple of days, they have been able to take more of the fluids off his body.
He is still very sick and he has a long way to come back to where he was. He must be very overwhelmed not being able to move his body at all. But I know he feels better being able to talk a little. He very clearly told the nurse that he did not want a bath! :) I think he is sick of having people do things to him.
More good news is that his heart rate is down to below 100 and was often in the 70's today. His oxygen levels have been good. His brother Dan arrived today and will be able to stay with us until Friday. Doug was glad to see him.
We were sorry to have Corinne leave. She has been such great help. However she has her own job to get back to. Nikki and Taylor are leaving in the morning. We wish they too could stay longer too.
The days ahead are uncertain, however the fact that he could breath on his own after the extubation is amazing and a wonderful relief.
Please pray that he now will get back the use of his muscles and will be able to control his muscles. His doctors say it could take several months. Please pray that it will take a much shorter time. He really wants to come home.
And so we pray:
Gracious most giving Lord, hear the words of your servants. Heal our fears and give us hope and light in the darkness. Heal Doug's tired body and make it new. Give him confidence in his healing. And Lord we thank you with being with us today. We thank you for listening to our prayer and saving Doug's life. Give his doctors the tools, knowledge and skills they need to support his continued healing. And most of all dear Lord, thank you for listening to prayers of your people! Amen
This morning I called the hospital to see if the pulmonary intensivist doctor had evaluated Doug yet and determined if he would be taking the tube out today. It is day 10 since the intubation. Our nurse Lorraine said that he had seen him and that they would be removing the tube and that it would happen sometime between 9 and 10. I quickly finished getting ready and notified the rest of the family so that we had people to take care of the kids and also to allow anyone who wanted to be at the hospital enough time to get there. Corinne and I left for the hospital. She was also ready to leave for the airport because her flight was leaving at noon.
When we arrived at the hospital, Doug was still minimally responsive. He could not squeeze my hand or follow me very well. I explained to him what was going to happen and then after anointing his head we all prayed for him. Minutes later the team that was going to remove the tube arrived. It took only a few minutes to remove the tube and then suction some of the mucus from his mouth.
He was so happy to have the tube out. For 10 days he has had the tube down his throat. He has been paralyzed, sedated and given pain medication. He has been unable to control anything that has happened to him. They regularly give him injections, draw blood, listen to his vitals, and move him. They shine lights in his eyes to check his pupils and swab out his mouth. He has had absolutely no control When you think about it, it is really like torture.
His first words over and over that were garbled were "Help Me, Help Me". For the first few hours he said this time and time again. It is somewhat heartbreaking to me to realize how afraid he was. The doctor had warned me that many people experience PTSD after such treatment. I now understand more fully what he was saying.
Everyone in the family, the staff and Fr. David were all really glad that he was breathing on his own. That was most important and our biggest concern. He is getting oxygen through his nose, but he is breathing unsupported with his own lungs.
He has not been able to move his body at all yet. He could turn his head somewhat and move his fingers a little bit. But he is not moving anything else. His speech is very garbled, but he tried to talk all morning and into the early afternoon when he became very tired. I am sure his throat and tongue are all very swollen and sore. It will take a little time for him to speak clearly. Also he is still very swollen with edema all over his body. He even has blisters on some areas of his body, because the fluid is trying to escape his body any way it can. On the other hand as his kidneys have improved over the past couple of days, they have been able to take more of the fluids off his body.
He is still very sick and he has a long way to come back to where he was. He must be very overwhelmed not being able to move his body at all. But I know he feels better being able to talk a little. He very clearly told the nurse that he did not want a bath! :) I think he is sick of having people do things to him.
More good news is that his heart rate is down to below 100 and was often in the 70's today. His oxygen levels have been good. His brother Dan arrived today and will be able to stay with us until Friday. Doug was glad to see him.
We were sorry to have Corinne leave. She has been such great help. However she has her own job to get back to. Nikki and Taylor are leaving in the morning. We wish they too could stay longer too.
The days ahead are uncertain, however the fact that he could breath on his own after the extubation is amazing and a wonderful relief.
Please pray that he now will get back the use of his muscles and will be able to control his muscles. His doctors say it could take several months. Please pray that it will take a much shorter time. He really wants to come home.
And so we pray:
Gracious most giving Lord, hear the words of your servants. Heal our fears and give us hope and light in the darkness. Heal Doug's tired body and make it new. Give him confidence in his healing. And Lord we thank you with being with us today. We thank you for listening to our prayer and saving Doug's life. Give his doctors the tools, knowledge and skills they need to support his continued healing. And most of all dear Lord, thank you for listening to prayers of your people! Amen
Monday, December 26, 2016
December 26, 2016: Day +37
This morning I arrived at the hospital and Doug was more alert than any day in the past 10 days. He had his eyes open more today. He did not respond to a request to squeeze my hand or move a finger, but he did seem to see me. His urine output is normal. His kidneys are not working as well as we would hope: he is retaining a lot of fluids however his urine output with Lasix (Corinne told me how to spell it. :) is good. He has blisters forming on his body from to much water in his system which cannot be comfortable. His blood pressure was better again today and his heart rate is down. He is initiating breaths on his own. The doctors have taken him off all the sedation medication. When he is awake enough they will remove the breathing tube. They need to be sure he is awake enough to swallow and breath.
We had visits from our friends Norm, Fr. David, and Fr. Bill, and my sister Kate. It is really nice to have so much support and to be able to share this journey. We are so appreciative of all the prayers from our visitors and from people reading the blog. It makes the journey lighter
I left the hospital to go to my sister's house around 5:30 for a family gathering and dinner. We talked, ate dinner and then had a rousing game of spoons with the whole family including the grand kids. Everyone had fun laughing and playing together.
Then Dan and I went back to the hospital to see Doug and spend a couple more hours with him before returning home to go to bed.
Tomorrow may be a big day if they are able to remove the tube. We won''t know if that will happen until morning. I hope he can get it removed tomorrow. He looks so sad and it can't feel good.
It is time to pray:
Holy and Life Giving God, be with Doug this night. Help him to feel safe and secure as he comes out of this sedation. Give him your peace and confidence that he is being healed. Hold him tight and comfort him as he waits in expectation for new life and comfort. Give me and his care providers direction as we continue to attend to his healing. And thank you Lord for the many angels you sent to us this day in the way of friends, hospital staff and family. For all this we give you thanks and praise. Amen
We had visits from our friends Norm, Fr. David, and Fr. Bill, and my sister Kate. It is really nice to have so much support and to be able to share this journey. We are so appreciative of all the prayers from our visitors and from people reading the blog. It makes the journey lighter
I left the hospital to go to my sister's house around 5:30 for a family gathering and dinner. We talked, ate dinner and then had a rousing game of spoons with the whole family including the grand kids. Everyone had fun laughing and playing together.
Then Dan and I went back to the hospital to see Doug and spend a couple more hours with him before returning home to go to bed.
Tomorrow may be a big day if they are able to remove the tube. We won''t know if that will happen until morning. I hope he can get it removed tomorrow. He looks so sad and it can't feel good.
It is time to pray:
Holy and Life Giving God, be with Doug this night. Help him to feel safe and secure as he comes out of this sedation. Give him your peace and confidence that he is being healed. Hold him tight and comfort him as he waits in expectation for new life and comfort. Give me and his care providers direction as we continue to attend to his healing. And thank you Lord for the many angels you sent to us this day in the way of friends, hospital staff and family. For all this we give you thanks and praise. Amen
Sunday, December 25, 2016
December 25, 2016: Day+36
Christmas Day
The day began with two sweet whispering voices telling me that Santa had come and that we needed to get up. Is there anything sweeter than that? I treasure these moments more than anything. I feel so blessed to have the most darling grandsons here this week. Graham is 8 and Eddie is 6. I quickly got out of bed, grabbed my robe and slippers and joined them at the Christmas tree. They were so excited but in a quiet ah struck way.
After opening presents here we went to my daughter Angie and her husband Tom's house. My sister Kate, and her daughter Taylor were already there. Angie and Tom had brunch ready for everyone. We spend the day opening the rest of the presents and playing games. It was fun to have all the grand kids together and to enjoy them.
Around 4:00 Dan, Nikki and I got ready to go to the hospital for a couple of hours. This is the first day in 17 days that I did not spent the day and the evening at the hospital. I have had very little time with my grandchildren and I felt that today it was important to celebrate Christmas with our family. I felt it was important to find some normalcy in our day. It was a hard choice to make.
On the way to the hospital I had a text from Fr. David. He had spent a good part of the early afternoon with Doug and he said that a couple of women from Grace Episcopal in Nampa had come by to wish Doug a Merry Christmas. One of our favorite nurses, Shantel, who was there the first day Doug came into the hospital was his nurse today. I felt very confident that Doug would be well cared for emotionally and professionally.
Upon arrival Shantel told me that Doug had a good day. His blood pressure, heart rate and temperature were all stable. His blood pressure is still running high, however they are keeping it from becoming dangerously high with medication. His kidneys are doing better. They were able to give him more Lasiks to help take the additional fluid off of him. His lungs are getting stronger. They are even talking about potentially being able to do a breathing trial. They would have considered taking the tube out with typical patients, however they are being more careful with Doug, because of his MS and know that his lungs may be more weak. They want to be sure that he can maintain his own breathing without the ventilator before removing it. This is all very good news. This may not be a Christmas miracle, however it is better news than what we have had for a long time and dear reader please remember there are 12 days of Christmas and so we still have time for that Christmas miracle.
Thank you everyone who sent us warm Christmas wishes and your prayers. I appreciate them so much. Emotionally, today was tricky. I am bouncing the miracle of celebrating Christmas, with love come into the world, and having my family and grand kids here to celebrate with and having Doug so sick in the hospital. My little grandson was concerned for me and his Grampa. He asked about Grampa and I told him that I have a sad part in my heart about Grampa and the fact that he cannot be with us and at the same time I am so happy to be celebrating Christmas. It is a tight rope we are walking.
I pray that all who are reading this blog, had a wonderful Christmas celebration, full of love and hope for the future.
I pray:
Jesus, Light of the world. You came to us in the simplest of stables, born of a young innocent girl. The angels told young Mary to "Fear Not". Help us to rest in our vulnerability. Teach us not to fear even when circumstances seem overwhelming and difficult. Help us to continue to believe in the unseen, to wait with radical expectation of the life that is to come. And Jesus, Light of the World, shine on Doug and help him to see the path before him clearly and dear Jesus please heal Doug so that he might share the light you have given him with others. Amen
The day began with two sweet whispering voices telling me that Santa had come and that we needed to get up. Is there anything sweeter than that? I treasure these moments more than anything. I feel so blessed to have the most darling grandsons here this week. Graham is 8 and Eddie is 6. I quickly got out of bed, grabbed my robe and slippers and joined them at the Christmas tree. They were so excited but in a quiet ah struck way.
After opening presents here we went to my daughter Angie and her husband Tom's house. My sister Kate, and her daughter Taylor were already there. Angie and Tom had brunch ready for everyone. We spend the day opening the rest of the presents and playing games. It was fun to have all the grand kids together and to enjoy them.
Around 4:00 Dan, Nikki and I got ready to go to the hospital for a couple of hours. This is the first day in 17 days that I did not spent the day and the evening at the hospital. I have had very little time with my grandchildren and I felt that today it was important to celebrate Christmas with our family. I felt it was important to find some normalcy in our day. It was a hard choice to make.
On the way to the hospital I had a text from Fr. David. He had spent a good part of the early afternoon with Doug and he said that a couple of women from Grace Episcopal in Nampa had come by to wish Doug a Merry Christmas. One of our favorite nurses, Shantel, who was there the first day Doug came into the hospital was his nurse today. I felt very confident that Doug would be well cared for emotionally and professionally.
Upon arrival Shantel told me that Doug had a good day. His blood pressure, heart rate and temperature were all stable. His blood pressure is still running high, however they are keeping it from becoming dangerously high with medication. His kidneys are doing better. They were able to give him more Lasiks to help take the additional fluid off of him. His lungs are getting stronger. They are even talking about potentially being able to do a breathing trial. They would have considered taking the tube out with typical patients, however they are being more careful with Doug, because of his MS and know that his lungs may be more weak. They want to be sure that he can maintain his own breathing without the ventilator before removing it. This is all very good news. This may not be a Christmas miracle, however it is better news than what we have had for a long time and dear reader please remember there are 12 days of Christmas and so we still have time for that Christmas miracle.
Thank you everyone who sent us warm Christmas wishes and your prayers. I appreciate them so much. Emotionally, today was tricky. I am bouncing the miracle of celebrating Christmas, with love come into the world, and having my family and grand kids here to celebrate with and having Doug so sick in the hospital. My little grandson was concerned for me and his Grampa. He asked about Grampa and I told him that I have a sad part in my heart about Grampa and the fact that he cannot be with us and at the same time I am so happy to be celebrating Christmas. It is a tight rope we are walking.
I pray that all who are reading this blog, had a wonderful Christmas celebration, full of love and hope for the future.
I pray:
Jesus, Light of the world. You came to us in the simplest of stables, born of a young innocent girl. The angels told young Mary to "Fear Not". Help us to rest in our vulnerability. Teach us not to fear even when circumstances seem overwhelming and difficult. Help us to continue to believe in the unseen, to wait with radical expectation of the life that is to come. And Jesus, Light of the World, shine on Doug and help him to see the path before him clearly and dear Jesus please heal Doug so that he might share the light you have given him with others. Amen
December 24, 2016: Day +35
It is Christmas Eve, the last day of Advent. This year I did some shopping on-line before leaving Mexico for Christmas and I had one snowy day before Doug got sick to decorate the house. Since December 8, I have done nothing really except go to the hospital and come home to take care of our fish and dog and sleep. It certainly has been an Advent of waiting.....
Today, Dan and my niece Nikki stayed with me at the hospital until almost 4. Corinne came with us first thing in the morning to briefly examine Doug and review what had happened overnight. Then Corinne, Dan and I met with the hospital doctor and the pulmonary doctor. Initially the hospital doctor wanted to talk again about having a plan once Doug can no longer be on the ventilator which is a very difficult conversation to have. Then the pulmonary doctor joined us and said that Doug's lungs were actually doing better today. He said that we had a full week before we would need to make any decisions and that Doug could improve over the next week.
In fact today, was the best day we have had in a week. They changed the settings on the ventilator. Doug can now initiate the breath himself and the machine supports rather than the machine doing all the breathing for him. Doug did much better with this and seemed to rest more deeply today.
Later the kidney doctor came in and said that Doug's kidneys looked better today. Doug has been retaining a large amount of fluid. He said that Doug would again be able to take Lasiks to help with the fluid retention and that should make Doug more comfortable and take the pressure off his lungs and heart. For several days now he has not been able to take Lasiks because his kidneys have not been strong enough.
Then Dan and Nikki left. Dan went to prepare our traditional Christmas Eve tamales. I stayed with Doug. I quietly played Christmas music and worked on Christmas cards I have not been able to do until now.
At 7:00, Fr. David Wettstein came and the family soon joined us. We had a lovely Christmas Eve service in Doug's room. It was really very sweet and meaningful. We are praying for a Christmas miracle and hopeful in our expectation of the Light coming into the world.
Then I went home and enjoyed some time with my grandsons. We read "The Night before Christmas" and left a note and cookies for Santa. They are so precious.
And so the night has come and we celebebrate Emmanuel, Christ with Us. We are not alone. The light has come. Amen
Today, Dan and my niece Nikki stayed with me at the hospital until almost 4. Corinne came with us first thing in the morning to briefly examine Doug and review what had happened overnight. Then Corinne, Dan and I met with the hospital doctor and the pulmonary doctor. Initially the hospital doctor wanted to talk again about having a plan once Doug can no longer be on the ventilator which is a very difficult conversation to have. Then the pulmonary doctor joined us and said that Doug's lungs were actually doing better today. He said that we had a full week before we would need to make any decisions and that Doug could improve over the next week.
In fact today, was the best day we have had in a week. They changed the settings on the ventilator. Doug can now initiate the breath himself and the machine supports rather than the machine doing all the breathing for him. Doug did much better with this and seemed to rest more deeply today.
Later the kidney doctor came in and said that Doug's kidneys looked better today. Doug has been retaining a large amount of fluid. He said that Doug would again be able to take Lasiks to help with the fluid retention and that should make Doug more comfortable and take the pressure off his lungs and heart. For several days now he has not been able to take Lasiks because his kidneys have not been strong enough.
Then Dan and Nikki left. Dan went to prepare our traditional Christmas Eve tamales. I stayed with Doug. I quietly played Christmas music and worked on Christmas cards I have not been able to do until now.
At 7:00, Fr. David Wettstein came and the family soon joined us. We had a lovely Christmas Eve service in Doug's room. It was really very sweet and meaningful. We are praying for a Christmas miracle and hopeful in our expectation of the Light coming into the world.
Then I went home and enjoyed some time with my grandsons. We read "The Night before Christmas" and left a note and cookies for Santa. They are so precious.
And so the night has come and we celebebrate Emmanuel, Christ with Us. We are not alone. The light has come. Amen
Friday, December 23, 2016
December 23, 2016: Day + 34
Today had some bright spots and some very difficult spots.
The best parts of the day were having Dan and our two grandsons arrive about 2:00 p.m. and Angie and Tom and the grand kids not long after. We now have most of our family. We are only short Doug's brother who should be arriving on the 27th. Unfortunately Cory has to leave us in the morning to go home to Petuluma, California. We will miss him.
For a good part of the day we were seeing some improvements in Doug. His color looked better and he was requiring less oxygen. The problems he is having with his kidneys looks stable. He was opening his eyes more.
It was great to have the whole family gathered. It was enjoyable vising together and it was wonderful having so much support. It is nice also to have the grand children here and Taylor my great niece. I just wish Doug could appreciate having everyone for Christmas.
Tonight was difficult. About 7:00 when Brandi our day nurse was re-positioning Doug and changing his sheets, he appeared to get very uncomfortable. His oxygen level went way down and his heart rate and blood pressure went way up. His heart rate was above 130 and his blood pressure was above 200. It was very frightening. They had so call in the doctor and it took over two hours to get him stabilized. They are now giving him more medication to sedate him, more oxygen and more medication for his blood pressure. We are all a little frazzled from that experience. Maybe most of all Doug. It is so difficult to watch him go through these things.
I came home around 10:30. It is so wonderful to have Dan, Corinne, and the kids here. Angie and Cole are also spending the night. Right now I am laying in bed with Angie and have Graham and Cole sleeping on the floor with Stryder in my bedroom. It is wonderful to be surrounded by people I love. I am only sad Doug is not here.
I am very tired and so I will close for now.
Emmanuel, God with Us, thank you for the comfort of family and friends. Thank you for nurses and doctors who genuinely care for us. We pray that you will quickly come, bring healing and peace to Doug. We pray that you will bring his suffering to an end. Come, Holy Spirit, Come. Amen
The best parts of the day were having Dan and our two grandsons arrive about 2:00 p.m. and Angie and Tom and the grand kids not long after. We now have most of our family. We are only short Doug's brother who should be arriving on the 27th. Unfortunately Cory has to leave us in the morning to go home to Petuluma, California. We will miss him.
For a good part of the day we were seeing some improvements in Doug. His color looked better and he was requiring less oxygen. The problems he is having with his kidneys looks stable. He was opening his eyes more.
It was great to have the whole family gathered. It was enjoyable vising together and it was wonderful having so much support. It is nice also to have the grand children here and Taylor my great niece. I just wish Doug could appreciate having everyone for Christmas.
Tonight was difficult. About 7:00 when Brandi our day nurse was re-positioning Doug and changing his sheets, he appeared to get very uncomfortable. His oxygen level went way down and his heart rate and blood pressure went way up. His heart rate was above 130 and his blood pressure was above 200. It was very frightening. They had so call in the doctor and it took over two hours to get him stabilized. They are now giving him more medication to sedate him, more oxygen and more medication for his blood pressure. We are all a little frazzled from that experience. Maybe most of all Doug. It is so difficult to watch him go through these things.
I came home around 10:30. It is so wonderful to have Dan, Corinne, and the kids here. Angie and Cole are also spending the night. Right now I am laying in bed with Angie and have Graham and Cole sleeping on the floor with Stryder in my bedroom. It is wonderful to be surrounded by people I love. I am only sad Doug is not here.
I am very tired and so I will close for now.
Emmanuel, God with Us, thank you for the comfort of family and friends. Thank you for nurses and doctors who genuinely care for us. We pray that you will quickly come, bring healing and peace to Doug. We pray that you will bring his suffering to an end. Come, Holy Spirit, Come. Amen
Thursday, December 22, 2016
December 22, 2016: Day+33
Today I woke up feeling weary and tired. I took a long hot bath, made breakfast and chatted with Corinne about the signs I need to look for if the treatment becomes too much for Doug or is not working. The doctor told me yesterday that I need to be prepared to make some tough decisions. It is hard for me to know when that time might come and I will know it when it arrive. The doctor did mention that the maximum amount of time Doug can be on the ventilator is 7 to 10 days. We are on day 5. The next step could be a tracheotomy. I dread that thought for him.
And so we left for the hosptal, feeling a bit overwhelmed and sad. When we walked into the room, Fr. David was there, with my nephew Cory and Ralph Shultz. They were present and caring for Doug while I was tired and moving slowly this morning. A little later Ron Pirnie showed up. Then John and the Rev. Jennifer Anttonen came by to check on us. Later in the day Ingrid Sitton came to visit with Christmas cards from the Sunday School. Our friend Sherry Barrett called a little later. Having all this support, lightened the load and I felt better.
The nurses lighten the sedation that Doug has been given and this afternoon many times Doug opened his eyes a little bit. He responded to the nurses when they asked him to blink his eyes twice if he was having pain. He did and he slightly nodded his head. This felt hopeful since it was the first time in 5 days that he has been able to communicate in any way.
And then his primary care doctor, Wendy Segersma came by. I called her yesterday, to make sure she knew what was happening to Doug. Apparently the hospital had never called her. It was good to share his journey with her. Doug has been going to her for 20 years. She told Doug she would pray for him.
Later this evening my niece Nikki and her daughter Taylor made it here from Missoula, Montana. It was good to have them arrive. We met my sister Kate, Corinne, Cory, Nikki and Taylor and we all had dinner together. Fr. David graciously agreed to watch over Doug while we were gone.
Angie, Tom and their kids will be back tomorrow along with Dan and his kids. Dan's brother will arrive on the 27th. The family will be gathered.
I give thanks to Fr. David for spending the entire day with us. He has been such a wonderful friend and pastor.
And so we pray:
Holy, most gracious Lord, each time I get discouraged you send someone to uphold me, to speak peace and to encourage me. I give you thanks. I give thanks for all who are holding the image of health for Doug during these difficult times. I give thanks for the safe travel of family members. Holy Lord, these long days of waiting and hoping are difficult. Be with us now and if it is your will grant Doug healing and peace as we await the day of your coming. Amen.
And so we left for the hosptal, feeling a bit overwhelmed and sad. When we walked into the room, Fr. David was there, with my nephew Cory and Ralph Shultz. They were present and caring for Doug while I was tired and moving slowly this morning. A little later Ron Pirnie showed up. Then John and the Rev. Jennifer Anttonen came by to check on us. Later in the day Ingrid Sitton came to visit with Christmas cards from the Sunday School. Our friend Sherry Barrett called a little later. Having all this support, lightened the load and I felt better.
The nurses lighten the sedation that Doug has been given and this afternoon many times Doug opened his eyes a little bit. He responded to the nurses when they asked him to blink his eyes twice if he was having pain. He did and he slightly nodded his head. This felt hopeful since it was the first time in 5 days that he has been able to communicate in any way.
And then his primary care doctor, Wendy Segersma came by. I called her yesterday, to make sure she knew what was happening to Doug. Apparently the hospital had never called her. It was good to share his journey with her. Doug has been going to her for 20 years. She told Doug she would pray for him.
Later this evening my niece Nikki and her daughter Taylor made it here from Missoula, Montana. It was good to have them arrive. We met my sister Kate, Corinne, Cory, Nikki and Taylor and we all had dinner together. Fr. David graciously agreed to watch over Doug while we were gone.
Angie, Tom and their kids will be back tomorrow along with Dan and his kids. Dan's brother will arrive on the 27th. The family will be gathered.
I give thanks to Fr. David for spending the entire day with us. He has been such a wonderful friend and pastor.
And so we pray:
Holy, most gracious Lord, each time I get discouraged you send someone to uphold me, to speak peace and to encourage me. I give you thanks. I give thanks for all who are holding the image of health for Doug during these difficult times. I give thanks for the safe travel of family members. Holy Lord, these long days of waiting and hoping are difficult. Be with us now and if it is your will grant Doug healing and peace as we await the day of your coming. Amen.
Wednesday, December 21, 2016
December 21, 2016: Day +32
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| Day 14 in ICU |
I am so appreciative of all who attended the prayer service last night and today. I have felt more at peace. And I am so grateful for all who have offered prayers who could not be there. Each day I want to respond to all the comments people leave on the blog, but my attention is so fragmented. Doug is often over breathing the ventilator, and I am at his constant side to speak to him, to calm him even though he is heavily sedated. Often I need to talk to the nurses and staff. They are in the room very frequently because of all the medications they are dispensing, monitoring his ventilator, his vitals and drawing blood samples and re-positioning and caring for his body. The doctors too come in regularly to check on him and want to talk to me. The day passes before I know it.
This morning, I woke early with much on my mind. I thought of the last days and wondered more about the cause of Doug's dramatic change in his health. Angie had woken early too with worry and concern for Doug. We talked for a while. As a result of our conversation I called Dr. Ruiz in Mexico. Doug refers to Dr. Ruiz as the living legend. Corinne made me laugh today. When I was telling Doug about calling Dr. Ruiz, I told Doug that I had called his favorite doctor. Suddenly there was a loud clearing of a person's throat behind be. I started laughing, I said oops, your second favorite doctor after Corinne! :)
I got hold of Dr. Ruiz through our driver Angel. Angel and I are Facebook friends. Within an hour of calling Angel, Dr. Ruiz called my back. He said he would be happy to consult with the doctors about Doug's condition. He affirmed that he believed that steroid treatment would be most appropriate right now, but would need to see more records to be more help. He said he was very willing to talk to the doctors and he gave me his personal cell phone number. Later today I got an email from his, affirming his willingness to help.
Today the hospital doctor wanted to meet with me to review how Doug is doing. I have asked that no updates on his condition be talked about in his room. I only want love, peace and hope spoken in his room. And so we went to the conference room. The main update is that Doug's condition has not changed very much. His kidney function was not as good today and his oxygen levels are lower. He is reguiring more support from the ventilator. The doctor wanted to talk to me about my plan if his condition worsens. This was a very hard conversation, not totally unexpected, but still difficult. He has given me much to think about. I asked him if I should ask family members to come. He said I might want to invite them.
I then called Doug's brother Dan. Apparently he was just in a car wreck in Denver. He is okay, but cannot make it until the 27th, Cory, my nephew is here with us now, he has to leave on Saturday. My niece Nikki arrives on Friday or Saturday. Dan and the kids will be here on Friday. Corinne will stay with Dan and the kids until after Christmas. Angie and Tom are here along with my sister Kate. And so we are keeping vigil with Doug. I try to be with him most of the days and nights. I do try to go home to sleep.
I am very tired tonight, and so it is time for rest. Once again thank you for all who attended prayer services and are praying for us. A special thank you to Fr. David Wettstein and Bishop Brian Thom for leading the services. Someday I hope to be able to thank each and everyone of you. God bless you all for your faithfulness and support.
And so we pray:
Holy and gracious Lord, we give you thanks and praise for all who surround us and fill us with your life giving spirit. We give you thanks for the kindness and support of our nurses and doctors. Be with us now dear Lord. As this long night comes to an end, guide us and light our path for the new day to come. Give your servant Doug rest and peace. Help him to rest in your peace and your light. And dear Lord we pray that you will heal him. In your name we ask it. Amen
Tuesday, December 20, 2016
December 20, 2016: Day +31
Upon arriving at the hospital this morning, we learned that Doug had an unstable couple of hours. They had to increase his oxygen to 100%. They try not to do this because it can be damaging to the lungs. Luckily by later in the morning they were able to reduce it down to 70%. Doug is still fighting the ventilator some and is double breathing, meaning he takes breaths in between the ventilator breaths. Today on several occasions he took many short breaths in a row, like he was hyperventilating. They had brought him off of the paralytic but then had to give it again, to get him to allow the breathing machine to do the work. It is dangerous to have the paralytic for too long, because it can interfere with the muscles beginning to work again and can be more concerning with Doug having MS. On the brighter side his blood pressure, heart rate, kidney function and liver function are all good now.
Our nurse Brandi was great. We have had her several times before. She is very competent and enjoyable to be with. Corinne and Brandi had an enjoyable time sharing quilting patterns and looking at each others pictures of their quilts.
Having Corinne with me at the hospital makes me more relaxed. She understands the hospital system and the medical terminology. Having Doug on the ventilator with all the medications they are giving him, and the ventilator going off every time he double breathes requires skills way beyond me. Having her here allows me to focus on Doug and caring for him. She can remain vigilant in monitoring his status and the adjustments they are making in his care.
Tonight my nephew Cory arrived to be with us for a few days. It is wonderful to have him here and to have his support. Dan and his boys are going to drive up from California and arrive on Friday. They are going to stay through Christmas. My niece is arriving on Friday or Christmas Eve with her daughter.
I am so grateful for the Healing Prayer service that David Wettstein and Debbie Greenleaf led tonight. Thank you to all of you that came. It meant so much to us. It was so loving and healing to be surrounded by your care and concern. Thank you too for all who are praying for Doug all over the world who could not be with us. You give me courage and hope and I know that your prayers make a difference. Doug was fairly stable today. Every day Doug is stable, we are closer to healing. Bless you all.
And so we pray:
Prince of Peace, be with Doug this last week of Advent. Calm his fears, and grant him peace. Help him to rest in your goodness. Watch over Dan and the kids, Angie and Tom and their kids, and Taylor and Nikki as they travel to be with us. We give you thanks for the support of our friends and clergy. We give thanks for all who are holding us in prayer. Dear Lord, we beseech you to hear our prayers. And since this is the season of miracles we ask you to heal Doug and make him new. In your name we ask it. Amen
Our nurse Brandi was great. We have had her several times before. She is very competent and enjoyable to be with. Corinne and Brandi had an enjoyable time sharing quilting patterns and looking at each others pictures of their quilts.
Having Corinne with me at the hospital makes me more relaxed. She understands the hospital system and the medical terminology. Having Doug on the ventilator with all the medications they are giving him, and the ventilator going off every time he double breathes requires skills way beyond me. Having her here allows me to focus on Doug and caring for him. She can remain vigilant in monitoring his status and the adjustments they are making in his care.
Tonight my nephew Cory arrived to be with us for a few days. It is wonderful to have him here and to have his support. Dan and his boys are going to drive up from California and arrive on Friday. They are going to stay through Christmas. My niece is arriving on Friday or Christmas Eve with her daughter.
I am so grateful for the Healing Prayer service that David Wettstein and Debbie Greenleaf led tonight. Thank you to all of you that came. It meant so much to us. It was so loving and healing to be surrounded by your care and concern. Thank you too for all who are praying for Doug all over the world who could not be with us. You give me courage and hope and I know that your prayers make a difference. Doug was fairly stable today. Every day Doug is stable, we are closer to healing. Bless you all.
And so we pray:
Prince of Peace, be with Doug this last week of Advent. Calm his fears, and grant him peace. Help him to rest in your goodness. Watch over Dan and the kids, Angie and Tom and their kids, and Taylor and Nikki as they travel to be with us. We give you thanks for the support of our friends and clergy. We give thanks for all who are holding us in prayer. Dear Lord, we beseech you to hear our prayers. And since this is the season of miracles we ask you to heal Doug and make him new. In your name we ask it. Amen
Monday, December 19, 2016
December 19, 2016: Day+30
It is hard to know where to begin the blog. Each day is such a roller coaster. I awoke early this morning. It was a difficult night for sleeping. I went into the kitchen to make myself a latte. In starting the machine, I soon figured out I was out of water. Well, I never fill the water reservoir, Doug always has done this. Followed by this I went to feed Stryder and my grand dog who is here keeping him company while I am gone these long days. I never feed Styder. Doug insists that he wants to feed the dogs, no matter how hard it has been for him to get around. And then, I needed to make my bed. Doug always makes the bed, something else he insists on doing, even though it has been hard for him. I told my daughter-in-law Corinne when she got up, that in some ways it is harder to be at home. Everywhere I look in the house fills me with memories of our life together.
Getting to the hospital, we learn that Doug had a bit of a rough night. However, they were able to bring his temperature down. It was normal all day today. His blood pressure was within a normal range and for the most part his heart rate was below 100. These are all good signs. And then when Corinne was reviewing his file she found that there are indications that Doug had a heart attack. When we asked the doctor, he confirmed that they believe this happened. I said that he had a electrocardiogram in Mexico and when the the cardiologist evaluated him and the tests, his heart looked good. This was a shocker. Then there is concern that his pH levels are low.
The doctor met with us and again told us that Doug is in a critical condition. He is very concerned. He shared some of the recent blood work and tests. At this time they still don't know what is causing Doug's problems. He also told us that it is possible that Doug will need to be transferred to St. Al's in Boise. They have more specialists available to help solve the mystery of what is happening to Doug.
In the meantime the manager of ICU asked if she could meet with me. She heard that I am concerned about the care Doug is getting. I spent about an hour with her and shared all my concerns about a few of the nursing staff. I shared with her how difficult it is to have a different nurse, aide and doctor almost everyday. It is especially difficult when Doug is high needs, in critical condition, and I am so worried about him, and I am having to teach and share information about Doug at every shift change, develop a relationship with the new nurse and develop confidence that the nurse will have the skills to work with Doug. When you are a caregiver and your loved one is in ICU it is very stressful and this adds one more stress. I have complained to the doctors and my friend Bev spoke with the nurse supervisor, and now since Friday, Doug's care has been much better. His current nurses have been outstanding.The nurse supervisor apologized and is trying to put the same good nurses with him. It was a long conversation and I spilled it all out.
I had the blessing of Angie, Tom and Cole coming again today. They had lunch with us and spent the afternoon at the hospital. Angie, Tom and Corinne had time together while I had the opportunity to visit with my Kuna friends and colleagues, Wendy Johnson, Kelly Walton, David Reinhardt and Kim Bekedahl. They have all been so good to us.
It has been really nice having Corinne here. She understands all the procedures and tests. She helps me to understand how Doug is really doing and is able to ask the staff clarifying questions for us. As we left tonight Doug seemed much more stable even though he is on the ventilator.
I asked to see the chaplain this afternoon. I asked to schedule a healing prayer service in the chapel at 6:00 at St. Al's on 12th avenue in Nampa. The hospital chaplain gave the OK and about that same time Fr. David Wettstein and Mother Karen Hunter stopped in. They both agreed to lead the service. I hope that all of you who are available will come. Your prayers are greatly appreciated.
And so we pray:
Holy and life giving Lord, this is the week that we prepare for the new life that is offered on Christmas. I know that this new life may take many different forms, but that the most important message of the season is God with us. God, be with us as we pray now and as we pray together tomorrow night. Help us to shine the light of love and healing on Doug as he struggles to breath. Give us hope in our sorrows and strength to believe and hold the faith that you are doing better things for us than we can ask for or imagine. Amen
Getting to the hospital, we learn that Doug had a bit of a rough night. However, they were able to bring his temperature down. It was normal all day today. His blood pressure was within a normal range and for the most part his heart rate was below 100. These are all good signs. And then when Corinne was reviewing his file she found that there are indications that Doug had a heart attack. When we asked the doctor, he confirmed that they believe this happened. I said that he had a electrocardiogram in Mexico and when the the cardiologist evaluated him and the tests, his heart looked good. This was a shocker. Then there is concern that his pH levels are low.
The doctor met with us and again told us that Doug is in a critical condition. He is very concerned. He shared some of the recent blood work and tests. At this time they still don't know what is causing Doug's problems. He also told us that it is possible that Doug will need to be transferred to St. Al's in Boise. They have more specialists available to help solve the mystery of what is happening to Doug.
In the meantime the manager of ICU asked if she could meet with me. She heard that I am concerned about the care Doug is getting. I spent about an hour with her and shared all my concerns about a few of the nursing staff. I shared with her how difficult it is to have a different nurse, aide and doctor almost everyday. It is especially difficult when Doug is high needs, in critical condition, and I am so worried about him, and I am having to teach and share information about Doug at every shift change, develop a relationship with the new nurse and develop confidence that the nurse will have the skills to work with Doug. When you are a caregiver and your loved one is in ICU it is very stressful and this adds one more stress. I have complained to the doctors and my friend Bev spoke with the nurse supervisor, and now since Friday, Doug's care has been much better. His current nurses have been outstanding.The nurse supervisor apologized and is trying to put the same good nurses with him. It was a long conversation and I spilled it all out.
I had the blessing of Angie, Tom and Cole coming again today. They had lunch with us and spent the afternoon at the hospital. Angie, Tom and Corinne had time together while I had the opportunity to visit with my Kuna friends and colleagues, Wendy Johnson, Kelly Walton, David Reinhardt and Kim Bekedahl. They have all been so good to us.
It has been really nice having Corinne here. She understands all the procedures and tests. She helps me to understand how Doug is really doing and is able to ask the staff clarifying questions for us. As we left tonight Doug seemed much more stable even though he is on the ventilator.
I asked to see the chaplain this afternoon. I asked to schedule a healing prayer service in the chapel at 6:00 at St. Al's on 12th avenue in Nampa. The hospital chaplain gave the OK and about that same time Fr. David Wettstein and Mother Karen Hunter stopped in. They both agreed to lead the service. I hope that all of you who are available will come. Your prayers are greatly appreciated.
And so we pray:
Holy and life giving Lord, this is the week that we prepare for the new life that is offered on Christmas. I know that this new life may take many different forms, but that the most important message of the season is God with us. God, be with us as we pray now and as we pray together tomorrow night. Help us to shine the light of love and healing on Doug as he struggles to breath. Give us hope in our sorrows and strength to believe and hold the faith that you are doing better things for us than we can ask for or imagine. Amen
December 18, 2016: Day +29
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| 8 Medications on the IV cart |
Last night was so horrible with the stress of the day of watching the monitors and seeing Doug struggle so much. My heart broke when the doctor decided to intubate him and being told how seriously ill he is and that the doctors don't know if he can pull this. The deep sadness brings tears and sobs. There is nothing I can do but be present.
I am so thankful for the care of all our dear friends. So many of you have offered your help, love and support. Right now there is not much anyone can do but pray. We have to limit visitors because of Doug's compromised immune system and right now each waking hour I don't want to be too far from him. But I read your posts and I read them to Doug. Last night, Kim Bekedahl brought me a box of cards from our friends in the KSD district. The sweet caring notes, warmed by heart. I sat with Doug tonight and read him the notes even though he is in a deep sedation. I don't know how much he can hear me or understand but I want to speak words of love and care to him as I hold his hand.
Today Bishop Brian Thom and his wife Ardele, Fr. David Wettstein and Mother Karen Hunter all came to visit and pray with Doug and I and our family. Having so much pastoral support is life giving to us and helps to hold us both up.
Angie spent the night with me last night and stayed with me until around 5:00. Tom and my grandson Cole came in the afternoon. Cole told his Dad that he needed to see his Gramma because his Gramma is sad and he can always make his Gramma happy. That is so true. So for a little while Cole and I visited and played video games in the waiting room while Angie and Tom stayed with Doug.
Our dear friend Gail Pirnie stopped by and sat with me for a while, while I told her stories of our time in Mexico. I told Doug today, like in Puebla, the city of Angels, here to we are being surrounded by angels. Great throngs of them. I see them in all the notes, texts, messages and love that is shared. I told him to remember the angel outside of our apartment in Mexico and to look for them here too. We are being looked after.
Tonight my daughter-in law -is arriving. Corinne is an internal medicine doctor. I am so thankful that she can be here to help me understand all that is being done and to take over the role of being vigilant about his health care.
We had an excellent day nurse today. His name is Andy. He is from Tanzania. He graduated from ISU, just like my mother did, my sister did, I did and my daughter did. It turns out that he knows Fr. David. He took care of his mother in St. Luke's when she was very ill. We talked about the difference in health care in Mexico, Africa and the US. In Africa you always have a one on one nurse and they stay with you the full time you are in the hospital. The challenge we have felt in American heath care is always having different nurses every 12 hours and always having to retell the story and Doug's needs with his compromised system and his M.S. It makes me tired, worried and concerned. Especially when people think they know more but have no experience with his type of condition. But today his nurse Andy and his nurse tonight Matt, have been wonderful. Even though Doug is sedated they care for him. and talk to him. Tender care makes this easier.
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| Andy and Matt |
The pulmonary doctor called me at home this morning, which gave me a fright. He needed permission for a bronchoscopy . I was very concerned about another procedure, but Doug came through it without any additional problems. They are continuing to look for the source of the problems. We won't know for a few days. I pray we learn something soon. Right now they are giving him everything hoping to hit something. His heart rate has stayed at about 115. His temperature has stayed at 100.7. With the ventilator they are keeping his respiration at about 30 His blood pressure has been pretty stable all day.
Please pray for Doug.
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God of Promise and Hope, you know things we cannot know. Your view of the world is bigger than ours. If it is your will, hear our prayer for healing. Heal Doug's body; allow his new stem cells to make him new . Give him peace as he heals. Surround him with angels and give him hope. And give me peace so that I might speak it to him. Watch over all those who care for him. Help them to make wise caring decisions. Help them to see the needs of their patients and their patients' loved ones. Renew in them the spirit you gave them as they entered into this life giving profession. In your name, God of Promise and Hope, we ask it. Amen
Saturday, December 17, 2016
December 17, 2016: + Day 28
Today is the day that I thought could never happen. Doug continued to deteriorate all day. His respiration was between 40 and 50. His heart rate averaged around 140. His temperature was around 102. He could not catch his breath. He was in distress all day.
In talking to his doctors they confirmed that his condition was very serious. All day it was very frightening. Doug was somewhat coherent during the day. He talked very little. He was struggling just to breath.
Our dear friend, Fr. David Wettstein stayed with him for m while for me to go home to shower and take a short nap. My friend Beveryly Lugo, who is a nurse, came over to support me and help Doug to get the care he needed. My sister Kate brought me dinner.
But the day was one of the hardest in my life. I cried off and on all day. I am so sad. Doug is struggling so much and I don't know if he can pull through this.
At 7:00 p.m. when the night doctor, came on duty she came in and checked on Doug and decided immediately to intubate (put a tube down his throat) to help him breath. I was shocked and overwhelmed and upset. I called my daughter-in-law Corinne for counsel and to ask her to talk to the doctor. She did and she agreed with the doctor and so I agreed. But it was incredibly upsetting for me and I am so scared for Doug's life.
Luckily right after getting this news my friends Kim and Mark Bekedahl were at the door; They were there along with my sister to support me and Doug in this procedure. Mark is a hospital chaplain and familiar with the procedures. It was good to have him explain it again to me. They all stayed with us during the procedure.
Doug will be kept in sedation until his body is ready to breath on it's own and he has begun to heal from the infection in his body. But it is so difficult to see him in this condition.
There is so much more to the story, but I am exhausted and frightened. Angie my daughter drove over to be with me and is staying the night. My daughter in law the doctor is flying in tomorrow.
Please, please pray for Doug.
God of Power and Might, God of the Impossible, be with Doug this night. Give him rest. Heal his body so that he may awake to new life. And be with us who fear for his life. Give us confidence in Your goodness and your loving presence in dark times. In your name we ask it. Amen
In talking to his doctors they confirmed that his condition was very serious. All day it was very frightening. Doug was somewhat coherent during the day. He talked very little. He was struggling just to breath.
Our dear friend, Fr. David Wettstein stayed with him for m while for me to go home to shower and take a short nap. My friend Beveryly Lugo, who is a nurse, came over to support me and help Doug to get the care he needed. My sister Kate brought me dinner.
But the day was one of the hardest in my life. I cried off and on all day. I am so sad. Doug is struggling so much and I don't know if he can pull through this.
At 7:00 p.m. when the night doctor, came on duty she came in and checked on Doug and decided immediately to intubate (put a tube down his throat) to help him breath. I was shocked and overwhelmed and upset. I called my daughter-in-law Corinne for counsel and to ask her to talk to the doctor. She did and she agreed with the doctor and so I agreed. But it was incredibly upsetting for me and I am so scared for Doug's life.
Luckily right after getting this news my friends Kim and Mark Bekedahl were at the door; They were there along with my sister to support me and Doug in this procedure. Mark is a hospital chaplain and familiar with the procedures. It was good to have him explain it again to me. They all stayed with us during the procedure.
Doug will be kept in sedation until his body is ready to breath on it's own and he has begun to heal from the infection in his body. But it is so difficult to see him in this condition.
There is so much more to the story, but I am exhausted and frightened. Angie my daughter drove over to be with me and is staying the night. My daughter in law the doctor is flying in tomorrow.
Please, please pray for Doug.
God of Power and Might, God of the Impossible, be with Doug this night. Give him rest. Heal his body so that he may awake to new life. And be with us who fear for his life. Give us confidence in Your goodness and your loving presence in dark times. In your name we ask it. Amen
Friday, December 16, 2016
December 16, 2016: +:27 and the 21st Anniversary of our Ordination and my mother's birthday
The ups and downs and twists of this journey continue. I have had so many emotional ups and downs over the past couple of days. Yesterday on my way to the hospital I got a call that said they were moving Doug out of ICU to the 3rd floor. While I felt somewhat good about this, I had planned on going to look at some options for facilities to transfer to once he is released. Now I did not know when I could do this because he was going to have less care on the floor and it was even more important for me to be there to help support his needs.
It took quite a while for the transition to occur. Finally by 1:00 we were in his room and met his nurse and the charge nurse. I liked them both very much. Erin his nurse was very attentive and helpful. Finally after getting Doug to eat I felt comfortable leaving for Boise to look at facilities.
I looked at Vibra, the step-down hospital that can provide for longer term needs and provide PT and OT. I like the facility and the people. Then I went to Aspen Rehab and found that our insurance is not a part of their network. Then I called Riverview Rehab and they thought that they could provide for Doug's neutropenic food and assure a fairly safe environment. I called Doug on the way back to Nampa and he answered the phone. This was a big step.
He did well with dinner. He was getting pretty tired by 9, however the nurses were busy and did not finish rounds to get him ready for bed until about 10:30. After that I left for the night feeling he was in good hands.
When I got to the hospital this morning the doctor met us and said he was ready to discharge Doug. I was shocked. He did not seem ready for discharge to me. I asked the nurse if he thought Doug was ready, and he said he did not think so. However the doctor said I would need to continue to work on Doug's discharge and that it may not happen until Monday because of insurance approval for the next facility. I am getting tired of disagreeing with them and so I went along even though my gut said no.. Then the woman from Vibra came to meet with us. Later I found out that our insurance will not cover Vibra or any of the places I looked at yesterday. I would need to start again. I decided to call our insurance myself to see who they would cover. It was limited. They will cover Southwest Health in Boise if the doctor recommends it and they, the insurance, agree. So now we are waiting on that approval. If Southwest does not work out, I will bring him home, with Home Health. My son-in-law Tom has agreed to help me and we can look at hiring someone else if we need to.
In the meantime, by late afternoon Doug started saying his stomach hurt and then he thought he had a migraine coming on. And then he was looking feverish and I asked the nurse to check him and he had a fever of 99. He has not had a fever for a couple of days. I was concerned. His breathing became more rapid and shallow. The nurse assured me that the temperature is not abnormal and that things go up and down. Doug then fell asleep. Angie came over and we went and got some dinner. When I got back, Doug was still sleeping. He looked very flushed. and his breathing was very rapid. I asked that his new shift nurse check his vitals. His heart rate was 130, respiration very rapid and blood pressure was about 30 points higher. His temperature was 101. The nurse tried to tell me that everything was still in a normal range. I said, when he has not been this way for few days and the doctor wanted to discharge him today???? I demanded to see the doctor when he would not consider my concerns.
In the meantime I called my daughter-in-law doctor, with the information I had and what I was observing. She agreed with me and told me some things I needed to find out and ask the doctor. Luckily even before I saw the doctor she started blood draws and want more information. When she arrived she had the same concerns I had and more specifically many of the concerns Corinne had. She responded very aggressively.
They now have ice packs on Doug and giving him medication to bring his fever down. They have started fluid IVs again and antibiotics. They are monitoring him closely an may need to send him back to ICU. Needless to say, I am spending the night at the hospital praying that the medical staff will find out the underlying problem and know how to treat him.
Dear Lord, this is such a rough ride. We are worried and concerned for Doug. I am weary of arguing with nurses and doctors. Please be with us and watch over us this night. When morning comes, give us new life and new hope. Clear the path so that Doug will get the care he needs. Help the doctors to discern the exact cause of this illness. In your name we ask it. Amen
It took quite a while for the transition to occur. Finally by 1:00 we were in his room and met his nurse and the charge nurse. I liked them both very much. Erin his nurse was very attentive and helpful. Finally after getting Doug to eat I felt comfortable leaving for Boise to look at facilities.
I looked at Vibra, the step-down hospital that can provide for longer term needs and provide PT and OT. I like the facility and the people. Then I went to Aspen Rehab and found that our insurance is not a part of their network. Then I called Riverview Rehab and they thought that they could provide for Doug's neutropenic food and assure a fairly safe environment. I called Doug on the way back to Nampa and he answered the phone. This was a big step.
He did well with dinner. He was getting pretty tired by 9, however the nurses were busy and did not finish rounds to get him ready for bed until about 10:30. After that I left for the night feeling he was in good hands.
When I got to the hospital this morning the doctor met us and said he was ready to discharge Doug. I was shocked. He did not seem ready for discharge to me. I asked the nurse if he thought Doug was ready, and he said he did not think so. However the doctor said I would need to continue to work on Doug's discharge and that it may not happen until Monday because of insurance approval for the next facility. I am getting tired of disagreeing with them and so I went along even though my gut said no.. Then the woman from Vibra came to meet with us. Later I found out that our insurance will not cover Vibra or any of the places I looked at yesterday. I would need to start again. I decided to call our insurance myself to see who they would cover. It was limited. They will cover Southwest Health in Boise if the doctor recommends it and they, the insurance, agree. So now we are waiting on that approval. If Southwest does not work out, I will bring him home, with Home Health. My son-in-law Tom has agreed to help me and we can look at hiring someone else if we need to.
In the meantime, by late afternoon Doug started saying his stomach hurt and then he thought he had a migraine coming on. And then he was looking feverish and I asked the nurse to check him and he had a fever of 99. He has not had a fever for a couple of days. I was concerned. His breathing became more rapid and shallow. The nurse assured me that the temperature is not abnormal and that things go up and down. Doug then fell asleep. Angie came over and we went and got some dinner. When I got back, Doug was still sleeping. He looked very flushed. and his breathing was very rapid. I asked that his new shift nurse check his vitals. His heart rate was 130, respiration very rapid and blood pressure was about 30 points higher. His temperature was 101. The nurse tried to tell me that everything was still in a normal range. I said, when he has not been this way for few days and the doctor wanted to discharge him today???? I demanded to see the doctor when he would not consider my concerns.
In the meantime I called my daughter-in-law doctor, with the information I had and what I was observing. She agreed with me and told me some things I needed to find out and ask the doctor. Luckily even before I saw the doctor she started blood draws and want more information. When she arrived she had the same concerns I had and more specifically many of the concerns Corinne had. She responded very aggressively.
They now have ice packs on Doug and giving him medication to bring his fever down. They have started fluid IVs again and antibiotics. They are monitoring him closely an may need to send him back to ICU. Needless to say, I am spending the night at the hospital praying that the medical staff will find out the underlying problem and know how to treat him.
Dear Lord, this is such a rough ride. We are worried and concerned for Doug. I am weary of arguing with nurses and doctors. Please be with us and watch over us this night. When morning comes, give us new life and new hope. Clear the path so that Doug will get the care he needs. Help the doctors to discern the exact cause of this illness. In your name we ask it. Amen
Wednesday, December 14, 2016
December 14, 2016: Day+ 25
Today when I got to the hospital at 9:00 they had already gotten Doug up and put him in his chair and fed him, what little breakfast he would eat. He was back in his bed with fresh sheets. They were prompt when Doug's IV ran out to change it, without me having to call them. They actively checked on Doug's personal needs. It was amazing. The doctor came to see me. He was very nice and very thoughtful. It was a different day. Obviously my complaints worked because there was a huge difference in his nursing care today. I am so grateful.
They decided to put a PIC line in so that they can deliver nutrients to Doug. Doug is eating a little however the doctor is still concerned that he is not eating enough. He is seriously low on nutrients since he went 6 days without really eating. He is very weak and sleeping most of the day. Hopefully, with the medication, lower temperature and some nutrients he will begin to perk up some more.
We had a bit of a scare, when trying to the PIC line in they thought they felt a blood clot. They then needed to do an ultrasound. I got the radiology report a little while ago and good news, no clots.
I talked to the hospital transition person again today. I told her the concerns we had of going to a skilled nursing facility. I also called a Home Health company. I learned that Home Health will only come in 2 to 3 times a week for a couple hours each time. The transition person then said there might be another facility that Doug might qualify for that is for people who need a little longer term care. It is a hospital with skilled staff. There are 2 facilities in Boise. One is Southwest Idaho Advanced Care Hospital and the other is Vibra. I thought I would check these two hospitals out tomorrow. I am concerned about bringing Doug home as weak as he is with so little services available. If the hospitals don't work out I am thinking about hiring someone to come and help us. Thank you everyone, who provided me feedback and ideas about resources for getting services for Doug and of the consideration you helped me to think through.
Doug is more alert tonight. He is watching a little TV and talking a little bit. Baby steps but we are moving in the right direction. His doctor says that he will be here in the hospital through the end of the week and maybe through the weekend.
As for me, I went to the orthopedic doctor, Myers Johnson today. He occassionally went to Grace while we were there. It was nice to see him. He ordered an MRI for my knee. We are now waiting for the insurance approval. I do feel like it is doing better. The brace has helped a lot. So we shall see.
It is time to pray.
God of all Faithfulness, bolster our faith in the midst of challenges. Sustain our vision of all that is possible. Remind us of your healing power, when we become fearful or discouraged. And dear Lord help us to remember the joy we felt at the time of transplant, strengthen our hope and vision to return to wellness and new life. Amen
They decided to put a PIC line in so that they can deliver nutrients to Doug. Doug is eating a little however the doctor is still concerned that he is not eating enough. He is seriously low on nutrients since he went 6 days without really eating. He is very weak and sleeping most of the day. Hopefully, with the medication, lower temperature and some nutrients he will begin to perk up some more.
We had a bit of a scare, when trying to the PIC line in they thought they felt a blood clot. They then needed to do an ultrasound. I got the radiology report a little while ago and good news, no clots.
I talked to the hospital transition person again today. I told her the concerns we had of going to a skilled nursing facility. I also called a Home Health company. I learned that Home Health will only come in 2 to 3 times a week for a couple hours each time. The transition person then said there might be another facility that Doug might qualify for that is for people who need a little longer term care. It is a hospital with skilled staff. There are 2 facilities in Boise. One is Southwest Idaho Advanced Care Hospital and the other is Vibra. I thought I would check these two hospitals out tomorrow. I am concerned about bringing Doug home as weak as he is with so little services available. If the hospitals don't work out I am thinking about hiring someone to come and help us. Thank you everyone, who provided me feedback and ideas about resources for getting services for Doug and of the consideration you helped me to think through.
Doug is more alert tonight. He is watching a little TV and talking a little bit. Baby steps but we are moving in the right direction. His doctor says that he will be here in the hospital through the end of the week and maybe through the weekend.
As for me, I went to the orthopedic doctor, Myers Johnson today. He occassionally went to Grace while we were there. It was nice to see him. He ordered an MRI for my knee. We are now waiting for the insurance approval. I do feel like it is doing better. The brace has helped a lot. So we shall see.
It is time to pray.
God of all Faithfulness, bolster our faith in the midst of challenges. Sustain our vision of all that is possible. Remind us of your healing power, when we become fearful or discouraged. And dear Lord help us to remember the joy we felt at the time of transplant, strengthen our hope and vision to return to wellness and new life. Amen
Tuesday, December 13, 2016
December 13, 2016: Day 24
I was pretty frustrated today though. The nurse had left him in a chair for an hour an half by himself with his food sitting in front of him. No one had helped him, even though he has not eaten anything since last Thursday and he is too weak to eat on his own. Then he was not going to give him the humidified oxygen. He had left it off of him and Doug had begun coughing again. This followed by him refusing to retake his blood pressure when I asked him to. Doug's blood pressure was down to 71/56. The OT wanted to work with him and get him into a stand. He is so weak he cannot stand on his own let alone with that blood pressure. I ended up having to demand he call the doctor and letting the doctor know what I was not pleased with and also letting the head nurse know. I let them know my expectations for his care in no uncertain terms. Low and behold I did get the humidified air, the blood pressure taken and OT and PT for Doug. But whew.....frustrating. He is in ICU!
A couple more delightful things happened today. I learned that Dick Halsey at our church is selling handmade wooden pens, for Christmas gifts and donating all the proceeds to Doug's medical care. This was an amazing and delightful surprise. Then my good friend Jacquie Prather came by the hospital to see us and brought an envelope. Inside was a Christmas card and money from some dear Parkridge staff that have continued to get together over many years. These dear ladies donated to Doug's care, instead of giving each other Christmas gifts. And then my friends Carl and Linda Goodwin came to Nampa to see Doug and took me out for dinner at the Brick. It was so wonderful to have a couple of hours with these dear friends.
The other thing that happened today is that the doctor and a transition person at the hospital met with me to talk about Doug going to a skilled nursing facility for rehabilitation after he is released from the hospital. Doug is really not keen on this idea but agreed to it. I am concerned about which facility to choose. I would love to hear peoples recommendations based on recent experience.. This is another big hurdle facing us.
God of Mercy, thank you for the goodwill and care of good friends who lighten our burdens and sustain our hope. Thank you for our dear friends who pray for us daily and journey with us. They remind us of your goodness and continual presence with us. Be with Doug as he continues to heal. Strengthen his body, so that he may walk again. Give him confidence that he will be restored to health. Fill us with joy at all the small blessings that we receive each day.In your name we ask it, Amen
Monday, December 12, 2016
December 12, 2016: Day 23
These past 5 days have been pretty tough. We came back from Mexico, thinking we would have a quiet, restful couple of weeks. We thought both of us would have time to rest and get ready for Christmas. It was not meant to be. I thought we had taken every precaution we could take to avoid Doug getting sick. We had the carpets cleaned and house sterilized before returning home. We had the car cleaned to be sure it would be safe for Doug. We bought new dog beds for Stryder. We sanitized the seat belt, seat and trays on the plane. Doug wore a mask all the way home from Mexico. But alas, somehow he picked-up something. The doctors think that he has a virus with a sinus infection. His body was somewhat septic. He has been very, very sick with this new immune system.
When I left last night his nurse was very concerned about Doug. He is a nurse that has been with him since he was admitted. I really appreciated having him. He was very honest and very caring. I thought he would be with us one more night but apparently he got rescheduled. I am disappointed he is not here. However our new night nurse comes recommended by our friend Bev. Bev is an instructor in nursing. He was one of her students. She was here visiting tonight when he came in to meet us. Her recommendation makes me feel better. We are also loosing one of his day nurses today. She has been great and we have so appreciated her. She is very attentive and proactive. She will be back on Thursday, but hopefully we won't be here then.
Dan left for home this morning and I had a doctor's appointment and so Angie and Tom came and stayed with Doug. I am not comfortable leaving him alone because he cannot advocate for himself. The staff often ask him questions, that he really can't answer yet.
The good news is that today Doug was more awake and was talking more. He could pay attention to some conversation and he seemed more aware of what was going on around him. His temperature has been down all day. His coughing is much reduced. His blood pressure has been good. His heart rate is still high, however they are giving him medication to lower his heart rate. Hopefully that will start to come down. They got him up and put him in a chair for a while today and he tolerated it pretty well. He has edema now from all the fluids they have been pumping into him and so they are now treating the edema. I got him to eat some lemon meringue pie. This is the first thing he has eaten since Thursday. We have been worried that he is not eating or drinking anything and so this was a big hurdle.
Waking up this morning, I was afraid of the direction this was all going. But coming in today everything looks more hopeful. All the numbers are going in the right direction. Doug is more coherent and he was willing to try to drink and to eat something. I am so glad for these improvements. I know we will both sleep better tonight
Holy and Life Giving Lord, be with us during this time of darkness, Fill us with hope to sustain in these times of distress. Guide our thinking, so that we make choices that lead us to wellness and wholeness. Fill us with joy with each step of recovery. In your name we ask it. Amen
When I left last night his nurse was very concerned about Doug. He is a nurse that has been with him since he was admitted. I really appreciated having him. He was very honest and very caring. I thought he would be with us one more night but apparently he got rescheduled. I am disappointed he is not here. However our new night nurse comes recommended by our friend Bev. Bev is an instructor in nursing. He was one of her students. She was here visiting tonight when he came in to meet us. Her recommendation makes me feel better. We are also loosing one of his day nurses today. She has been great and we have so appreciated her. She is very attentive and proactive. She will be back on Thursday, but hopefully we won't be here then.
Dan left for home this morning and I had a doctor's appointment and so Angie and Tom came and stayed with Doug. I am not comfortable leaving him alone because he cannot advocate for himself. The staff often ask him questions, that he really can't answer yet.
The good news is that today Doug was more awake and was talking more. He could pay attention to some conversation and he seemed more aware of what was going on around him. His temperature has been down all day. His coughing is much reduced. His blood pressure has been good. His heart rate is still high, however they are giving him medication to lower his heart rate. Hopefully that will start to come down. They got him up and put him in a chair for a while today and he tolerated it pretty well. He has edema now from all the fluids they have been pumping into him and so they are now treating the edema. I got him to eat some lemon meringue pie. This is the first thing he has eaten since Thursday. We have been worried that he is not eating or drinking anything and so this was a big hurdle.
Waking up this morning, I was afraid of the direction this was all going. But coming in today everything looks more hopeful. All the numbers are going in the right direction. Doug is more coherent and he was willing to try to drink and to eat something. I am so glad for these improvements. I know we will both sleep better tonight
Holy and Life Giving Lord, be with us during this time of darkness, Fill us with hope to sustain in these times of distress. Guide our thinking, so that we make choices that lead us to wellness and wholeness. Fill us with joy with each step of recovery. In your name we ask it. Amen
Sunday, December 11, 2016
December 11, 2016:Day =+22
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| Doug when he was admitted to the hospital |
He has slept most of the day, which is good. He is still coughing, however it is not continuous. His temperature has been down most of the day. His heart rate is still high. He is refusing to eat or drink. He has started developing some edema and so the doctor took away the IV fluids. When I was able to meet with the doctor I asked him to return the IV because Doug is not drinking. I think his throat is sore and often when he swallows he begins coughing. When I explained to the doctor how dehydrated he had been, he restarted the IV fluids and agreed that it would be best to slowly reduce the amount of fluids he is receiving.
There are lots of concerns and worries. He has been very sick. Things do look a little better, but we are not out of the woods yet. I don't think they really know the source of the infection. They are giving him very strong antibiotics that should kill about anything he has.. It is also a worry that he is not eating or drinking. I pray that tomorrow he will feel better and that his heart rate will be down so that he will feel like eating and drinking again.
Many of you have offered concern for me. So here is a little update on me. Tuesday night I twisted my knee when I was trying to get Doug up and off the floor after a fall. By Friday morning it was really hurting and I decided I needed to walk across the parking lot to Quick Care and get it checked. It was a rough walk with the icy parking lot, but I made it. They did an x-ray and found nothing is broken. And so they braced it, gave me ibuprofen and recommended I see a specialist next week. It feels much better with the brace. I am hoping that it is just a sprain and will be better soon.
Dan leaves tomorrow morning. It has been really nice to have him here. I wish that Doug could have visited more with him, however he has been really too sick to visit. He has been good company for me and helpful in trying to interpret and understand what is going on with his Dad. It is nice too, to have his wife Corinne on the end of the phone when we need her. Corinne is an internal medicine doctor who has been a hospital doctor. Her expertise and Dan's molecular biology and pharmaceutical background are a Godsend.
We have been blessed in many ways over the years. We have done things right and done things wrong. But for some reason we have been blessed with wonderful kids. I thank God that we have adult kids who are smart, caring and intelligent. They are great people to be with and they make our lives better. Corinne sent me an early Christmas present. It is a beautiful Celtic quilt that she and our grandsons made together. It will be a great comfort to me. Especially during this challenging time.
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| Handmade quilt by my daughter-in-law and grandsons |
Tonight we pray:
Holy God, be with us this night. Strengthen our hope and give us peace. We give you thanks and praise for the caring of our family and friends and for the continued care of health professionals. We pray that Doug will be healed, and his body be made strong. Be with all who are caring for him. Help them to find answers to our questions and treatments that will heal Doug's body. Be with Dan as he travels home tomorrow. Amen
Saturday, December 10, 2016
December 10, 2016: Day+21
Friday was a very long and difficult day. Earlier in the day I thought we were making some headway. Early in the morning Doug was talking without a lot of coughing. However by mid morning the cough was back with a vengence and his vitals were all elevated. His heart rate and blood pressure were both high. He was running a temperature over 100 most of the day. The constant coughing was literally wearing him out.
He continues to get IV fluids and antibiotics. He is receiving respiratory treatments every 4 hours. He is also getting cough medicine. Dr. Bowman has been his daytime hospital doctor since Thursday morning. He has been great to work with. Today he was asking me about some of the medications Doug received in Mexico. I told him I had all of his records from Mexico, including all of the test results and a day by day description of the medication and procedures that were done. He asked if I could bring them in and I said of course. I had brought them with me the first night, but no one was interested in seeing them at that time.
Yesterday, my daughter asked me if they were humidifying the air. She found that most helpful for Cole our grandson who was premature and had lots of problems with his lungs. Doug has not had a humidifier. I asked Dr. Bowman about humidifying the air and he thought it was a good idea. He ordered oxygen with moisture. Immediately Doug's cough diminished and now he is getting some rest. It is making a huge difference
Dan, Doug's son flew in from California last night.. He got here around 9:00 p.m. and will stay until Monday morning. It has been good to have him here and of course Doug is glad he is here although he is not feeling well enough to
visit or interact.. Dan has a Ph.D in molecular biology. I appreciate having him here to help me think through the treatments that might be best for Doug. It is just good to have him to share the care and concern as well.
The lung specialists thinks that it may take them a couple more days to figure out exactly what is going on. But I am hoping that we may now have turned the corner for his recovery. Having the coughing slowed, is allowing him to rest, and this is bringing down his blood pressure and heart rate a little. This calming of his system, where he is not gasping for air is allowing his body to heal I think. He really has not slept any substantial amount of time for more that 3 days. So I am praying he can sleep this tonight.
Doug is still in Intensive Care, step-down unit at St. Alphonses in Nampa. He is being monitored constantly. I also continuing to communicate with my daughter-in-law, who is an internal medicine doctor. She has been really helpful in helping to understand the tests he has been given and offering ideas for tests he may need and recommended treatments. Dr. Bowman has appreciated her thoughts.
Doug, is tired and tired of being sick. With struggling to breath he is somewhat anxious. And of course it is hard for me to watch him suffer. It is worrisome and scary since it is taking so long to figure this out. Everyone's prayers make this journey easier. Having Dan here makes it easier. Thank you everyone for your continued concern, prayers and notes. You all help us keep the faith.
And so we continue to watch, and hope for Doug to respond and recover.
Mighty God, as the sun is setting, and the quiet darkness is settling across the valley, be with us. Quiet Doug's cough, reduce his temperature and give his doctors and caregivers guidance in how best to treat his illness. And as the darkness of the night is upon us, allow him to fall into a deep and healing sleep. In your name we ask it. Amen
He continues to get IV fluids and antibiotics. He is receiving respiratory treatments every 4 hours. He is also getting cough medicine. Dr. Bowman has been his daytime hospital doctor since Thursday morning. He has been great to work with. Today he was asking me about some of the medications Doug received in Mexico. I told him I had all of his records from Mexico, including all of the test results and a day by day description of the medication and procedures that were done. He asked if I could bring them in and I said of course. I had brought them with me the first night, but no one was interested in seeing them at that time.
Yesterday, my daughter asked me if they were humidifying the air. She found that most helpful for Cole our grandson who was premature and had lots of problems with his lungs. Doug has not had a humidifier. I asked Dr. Bowman about humidifying the air and he thought it was a good idea. He ordered oxygen with moisture. Immediately Doug's cough diminished and now he is getting some rest. It is making a huge difference
Dan, Doug's son flew in from California last night.. He got here around 9:00 p.m. and will stay until Monday morning. It has been good to have him here and of course Doug is glad he is here although he is not feeling well enough to
visit or interact.. Dan has a Ph.D in molecular biology. I appreciate having him here to help me think through the treatments that might be best for Doug. It is just good to have him to share the care and concern as well.
The lung specialists thinks that it may take them a couple more days to figure out exactly what is going on. But I am hoping that we may now have turned the corner for his recovery. Having the coughing slowed, is allowing him to rest, and this is bringing down his blood pressure and heart rate a little. This calming of his system, where he is not gasping for air is allowing his body to heal I think. He really has not slept any substantial amount of time for more that 3 days. So I am praying he can sleep this tonight.
Doug is still in Intensive Care, step-down unit at St. Alphonses in Nampa. He is being monitored constantly. I also continuing to communicate with my daughter-in-law, who is an internal medicine doctor. She has been really helpful in helping to understand the tests he has been given and offering ideas for tests he may need and recommended treatments. Dr. Bowman has appreciated her thoughts.
Doug, is tired and tired of being sick. With struggling to breath he is somewhat anxious. And of course it is hard for me to watch him suffer. It is worrisome and scary since it is taking so long to figure this out. Everyone's prayers make this journey easier. Having Dan here makes it easier. Thank you everyone for your continued concern, prayers and notes. You all help us keep the faith.
And so we continue to watch, and hope for Doug to respond and recover.
Mighty God, as the sun is setting, and the quiet darkness is settling across the valley, be with us. Quiet Doug's cough, reduce his temperature and give his doctors and caregivers guidance in how best to treat his illness. And as the darkness of the night is upon us, allow him to fall into a deep and healing sleep. In your name we ask it. Amen
Thursday, December 8, 2016
December 8, 2016: Day +19
My plan was to post, once a week on Saturdays after returning home. However, things have taken a turn and I want to be sure to document each step of this journey, for us to remember and to document progress, to share our journey with our friends and family, to provide information on HSCT for MSers and to ask for prayers for healing and wholeness.
On Tuesday night Doug became pretty weak. He fell and it took us over 30 minutes to get him up. He was really tired. I thought it was related to him still recovering from chemotherapy and the transplant, in additional to our long day of travel on Saturday. Many people talk about being more tired after returning home. And when Doug gets tired it interferes substantially with his ability to control his muscles, speech and thinking. Well, with substantial effort I was able to get him into bed after getting him up.
Doug woke up around 5:30 on Wednesday morning and needed to go to the bathroom. I could tell then he was too weak to get up, but he was very resistant to staying in bed and wanted to get up. I ended up calling my son-in-law Tom who lives in Star, to come over and help me. I was really thankful to have him come over because I can't lift Doug by myself and it was good to have some moral support.
Doug seemed to rally during the day, was tired, but not exhausted and pretty rational. By 8:00 last night he again was really tired and not able to control his body. With great effort I was able to get him into bed. He fell asleep around 10:30 p.m. but woke up at 12:30 a.m.coughing. He could not stop coughing. We tried cough drops, hot tea, water, but nothing worked. I then took his temperature and it was 102. He was listless and not communicating very well at all. I called 911, because I could not do anything else and I knew I needed help. Also, our instructions from the stem cell transplant were to seek help for all temperatures over 100. There was no way I could get him to the car to take him to the emergency. The fire engine and ambulance arrived with about 6 men. They agreed he needed to go to the hospital and transported him.
We were in the emergency room from 1:30 a.m. to 9:00 a.m. this morning. They took several blood samples and a urine sample, chest x-ray and CT scan. His heart rate was fast (tachycardia), temperature high (101) he had continuous coughing, and low oxygen levels. He was also dehydrated. They gave him 3 liters of IV solution, antibiotics, respiratory treatments, and Naproxen to bring his temperature down. Finally everything began to work about 7:30 a.m. and he began to rest.
They moved him to "step-down" care, which is a step below ICU. He was doing pretty well, things were stable and so at 11, I went home to feed our dog and to get a couple of hours of sleep. When I got back at 3:00 everything was right back to where it was when I had called the ambulance.
Apparently it had started back up not long after I left. Luckily, he had a great nurse, Lorriane, who took good care of him and watched over him like a mother.
Finally about 6:00 p.m.tonight all the numbers came back into a more normal range and he was able to get a little sleep. His heart rate remains a little elevated. Unfortunately whenever he wakes up, he starts to cough again, but it has not been as bad yet. We are not sure what the night will bring.
The nurses and doctors have been very nice and helpful. They are searching for answers and have been genuinely concerned and caring. You should have seen the looks and expressions when I first told them we had been to Mexico for HSCT. I could just see some judgment crossing their faces. However, I keep explaining the treatment and the fact that several countries have been doing the treatment for many years and doing something is better than the alternative of doing nothing.
Anyhow, here we go again, or here is just another twist in our pilgrimage of healing. One thing I learned when I walked the Camino de Santiago de Compostella, is that every time you go down a mountain, there is another mountain staring you down that you have to climb. Looks like we are climbing another mountain. But each time we climb, we get stronger and more prepared for the next one.
And so we pray,
O come, O come, Emanuel, be with us and our healing team. Be with our doctors as they work to understand the underlying infection that Doug has. Give Doug courage and peace in his present condition. Give him hope in these challenges; to believe that better things are to come. And we give thanks to all who have been with us on this journey and who continue to support and pray for us. We give thanks for having a daughter-in-law who is a doctor who can help us to find answers and family who jump into help. Amen.
On Tuesday night Doug became pretty weak. He fell and it took us over 30 minutes to get him up. He was really tired. I thought it was related to him still recovering from chemotherapy and the transplant, in additional to our long day of travel on Saturday. Many people talk about being more tired after returning home. And when Doug gets tired it interferes substantially with his ability to control his muscles, speech and thinking. Well, with substantial effort I was able to get him into bed after getting him up.
Doug woke up around 5:30 on Wednesday morning and needed to go to the bathroom. I could tell then he was too weak to get up, but he was very resistant to staying in bed and wanted to get up. I ended up calling my son-in-law Tom who lives in Star, to come over and help me. I was really thankful to have him come over because I can't lift Doug by myself and it was good to have some moral support.
Doug seemed to rally during the day, was tired, but not exhausted and pretty rational. By 8:00 last night he again was really tired and not able to control his body. With great effort I was able to get him into bed. He fell asleep around 10:30 p.m. but woke up at 12:30 a.m.coughing. He could not stop coughing. We tried cough drops, hot tea, water, but nothing worked. I then took his temperature and it was 102. He was listless and not communicating very well at all. I called 911, because I could not do anything else and I knew I needed help. Also, our instructions from the stem cell transplant were to seek help for all temperatures over 100. There was no way I could get him to the car to take him to the emergency. The fire engine and ambulance arrived with about 6 men. They agreed he needed to go to the hospital and transported him.
We were in the emergency room from 1:30 a.m. to 9:00 a.m. this morning. They took several blood samples and a urine sample, chest x-ray and CT scan. His heart rate was fast (tachycardia), temperature high (101) he had continuous coughing, and low oxygen levels. He was also dehydrated. They gave him 3 liters of IV solution, antibiotics, respiratory treatments, and Naproxen to bring his temperature down. Finally everything began to work about 7:30 a.m. and he began to rest.
They moved him to "step-down" care, which is a step below ICU. He was doing pretty well, things were stable and so at 11, I went home to feed our dog and to get a couple of hours of sleep. When I got back at 3:00 everything was right back to where it was when I had called the ambulance.
Apparently it had started back up not long after I left. Luckily, he had a great nurse, Lorriane, who took good care of him and watched over him like a mother.
Finally about 6:00 p.m.tonight all the numbers came back into a more normal range and he was able to get a little sleep. His heart rate remains a little elevated. Unfortunately whenever he wakes up, he starts to cough again, but it has not been as bad yet. We are not sure what the night will bring.
The nurses and doctors have been very nice and helpful. They are searching for answers and have been genuinely concerned and caring. You should have seen the looks and expressions when I first told them we had been to Mexico for HSCT. I could just see some judgment crossing their faces. However, I keep explaining the treatment and the fact that several countries have been doing the treatment for many years and doing something is better than the alternative of doing nothing.
Anyhow, here we go again, or here is just another twist in our pilgrimage of healing. One thing I learned when I walked the Camino de Santiago de Compostella, is that every time you go down a mountain, there is another mountain staring you down that you have to climb. Looks like we are climbing another mountain. But each time we climb, we get stronger and more prepared for the next one.
And so we pray,
O come, O come, Emanuel, be with us and our healing team. Be with our doctors as they work to understand the underlying infection that Doug has. Give Doug courage and peace in his present condition. Give him hope in these challenges; to believe that better things are to come. And we give thanks to all who have been with us on this journey and who continue to support and pray for us. We give thanks for having a daughter-in-law who is a doctor who can help us to find answers and family who jump into help. Amen.
Monday, December 5, 2016
December 3, 2016: Day 14
Our day started very early on Saturday as we prepared to come home. The people in the apartment above us decided to party all night long, with loud music and loud voices. When we left the apartment at 6:30 in the morning they were still partying. We heard the other HSCTers talk about loud partying, some had even posted videos on Facebook with the sound of the music from the their neighbors. We had been spared this until the last night. Apparently, parties in Mexico are best when they go all night long. :) Needless to say we did not get much sleep. The alarm was set for 5:15, but at 5:00 I gave up and decided it was time to shower.
Tony, one of the drivers, picked us up for the airport at 6:30 a.m. When we got on the van there were already 4 others on the van from group 3. We had previously had the opportunity to visit a few times over the course of the treatment. Karen and Brad are from Benicia, California. They are about our age. Brad retired from the Forest Service. He spent a lot of his career in Idaho. Karen graduated from Boise High School. The other couple were from New Jersey. They are in their 20's. It took us about 45 minuts to get to the airport. We all had lots of luggage. With the help of Tony and an airport employee we got everything to the ticket counter. Even though there are almost 3 million people who live in the greater Puebla area, the airport is very small. Most people fly in and out of Mexico City. There are only 4 gates at the airport. When we flew in on November 4, it was 9:00 p.m. and it was dark. I was mostly focused on the loss of Doug's wheelchair and trying to figure out how to communicate with limited Spanish. This time at the airport it was much easier. We were early and had no waiting in line. The woman at the counter helped to make sure everything was tagged correctly. We had plenty of time before flights in each of our stop overs and so we decided we would not check the wheelchair and would not need assistance at the airport.
We were on a very small plane with 2 seats on one side and one seat on the opposite side. We had a great flight attendant with a great sense of humor. I asked her about the Houston weather. She said we might not be able to land. We may end up in San Antonio. As we got closer to Houston, the flight got much rougher and the clouds darker. We were all told to stay seated and buckled in. The flight attendant was also belted in. I leaned into the isle and looked at her just as one of the doors to a cupboard she had locked dropped open. She smiled and shrugged her shoulders. I crossed my fingers and we both laughed. We bumped our way down to a smooth landing in Houston. We were all relieved!
We had two and half hours before our flight to Denver. With Doug needing to be very careful to assure he does did eat contaminated or undercooked food it took away the option of having brunch at the airport. We finally decided that we would have a pizza with no vegetables and no meat, at a nice little restaurant. We asked the waitress if the cooks wore gloves and if it could be delivered immediately very hot. It was a bit of a risk, but we thought we would be pretty safe. They took extra care when they learned of our circumstances. After our light lunch we went and sat at our gate. After about 40 minutes, I wondered why no one else was there. I decided I had better check the monitor. The woman at the United counter had written the gate number for us when I had decided to check Doug's walker so that I would not have to carry it all day. And so I had not paid any attention to the monitors until then. Good thing I checked, because the airlines had changed gates and terminals. We took off. We got to the gate just in time for early boarding.
My granddaughter, Anna had given me a book she enjoyed to read while we were gone. The book is "Behind Enemy Lines". It is a true story of a Jewish woman in World War II and her family. I had only read half. I though I would have more time to read while in Puebla, but I ended up with very ad little uninterrupted. So now was my time to settle in and Doug took advantage of the quiet time to nap.
We landed in Denver with 3 hours until our next flight. We wandered around the airport and took the opportunity to do some shopping in a couple of bookstores and specialty item stores. We stopped in a sports bar and I got a bowl of Chile. We bought Doug a banana and he had a snack with the additional items I had brought along. After our long layover we finally left Denver at a few minutes before 7:00.
Doug handled the long day very well. He was able to get some naps in during the flights. We had been concerned about the day with Doug's limited immune system. We had to sanitize the seats, seat belts and tray tables as we got on each flight. He had to wear his mask the full day which was not really fun for him. We sanitized our hands at least a dozen times throughout the day. But in the end it all worked out. I guess we won't know for sure, but hopefully he avoided catching anything.
My daughter Angie and granddaughter Anna met us at the airport along with our dog Stryder. Anna was waiting at the top of the escalators with a big smile and came running with a hug. It is good to be home. Angie and Tom cleaned our car so that it was more germ free then it has been for a long time and Anna sanitized again where Doug was going to sit. We loaded all of our stuff into the van and headed home, arriving about 10:00 p.m. We had been up since 4:00 a.m. MDT with little sleep the night before, interestingly though Doug was not exhausted. He wanted to come in and hear the news while I got things unloaded. Usually, he would be so exhausted that he would be hardly functioning and unable to get ready for bed by himself. This was a sign of some good news in his recovery.
Now as we have come to end of our this first length of the recovery process, I am reflecting back over the 10 years. A whole decade of our lives. Two years ago, I was a spiritual director for a women's camp at Paradise Point located on the beautiful Payette Lake. Sometime in the year of planning before the retreat, I heard the song "Draw the Circle Wide". This particular song resonated with me. For years, our circle of people had gotten smaller and smaller. As Doug changed more and more, he was able to do much less and the disease had effected his physical abilities and his thinking. After all, MS is scarring on the brain and the death of neurons. It can be really hard to explain this to others and often people do not know how to respond to him. Doug and I both have always been extroverted and very active in our community. Being more withdrawn and limited was difficult. It was hard to see the future. We cut down and shut down more and more. We needed to open up. We needed healing one way or another. We needed help and we needed to live more fully. We needed to draw our circle wider. And so "Draw the Circle Wide" became my own theme song.
Here are the lyrics;
“Draw the circle wide, draw the circle wide. No one stands alone, we’ll stand side by side. Draw the circle wide; draw it wider still. Let this be our song! No one stands alone. Standing side by side, draw the circle, draw the circle wide!”
Without drawing the circle wide we would never have made it to Puebla. So many people have supported us and helped us to raise money to help pay for the treatment. The continuous support and prayers we received in Puebla made the experience not just a medical treatment, but a healing. And while in Puebla standing with the others going through HSCT we experienced more love and more healing.
And so in giving thanks and prayers for continued healing we pray:
Holy One, we give thanks for all those in our life who have stood side-by-side with us. We give thanks for those who have held the faith for us when we were discouraged. We give thanks for the people of faith who drew us in and encircled us. We give thanks for all the people who have loved us just the way we are. Be with us now, as Doug begins to heal. Strengthen him when he is discouraged or overwhelmed. Strengthen and support our vision of wholeness and healing. And in this second week of Advent give us peace in accepting your timeline of healing. Give us peace in knowing that you are doing better things for us and this world than we can ask for or imagine. Amen
I will continue to update the blog weekly with news of Doug's continuing treatment and his progress in recovering skills. Thank you all who have read and traveled with us on this journey.
We are home, after a very long day yesterday.
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