Monday, May 30, 2011
Saturday, May 28, 2011
Dennis was starting to do better at cuff deflation. He went 18 minutes without stopping. He also had the speaking valve in so they ask him to say something and he said, “I want a quarter pounder with cheese.” Haley and I had found a McDonalds in the basement of the hospital next door to us. I had lost about 20 pounds and finding McDonalds was one sure way of not keeping those 20 pounds off! Dennis thought nothing had ever tasted so good!
Friday, May 27, 2011
Haley took Jan and I to the Houston Galleria to get our haircut. It is amazing what little things you take for granted and a good haircut is one of those little things! Our new roommate was very young and his friends would get to his room about 10:00 and stay till about 2:00. Remember our sessions on how important it is to be careful pushing people around in a wheelchair. Well James, Dennis’s roommate, had a pass to go out and his mom didn’t seat belt him in and when they went over a curb he fell out of his chair and had to have ten stitches in his head. He had to go to the E.R and didn’t get back to the room till around 5:00. I was getting more and more discouraged and every night after Dennis and I had devotion, I would go out to the courtyard and call my mom. I would sob and sob and she would say the exact right things to get me going again. I missed my mom and my daughter so much and they kept me going. My mom told me to take one day at a time and to not look down the road to what ifs. My dad was starting to fail in health and they put their house up for sale and the great people of Fairview headed by Larry Boyer and Kaiser Webb were still building on my garage for them to live in. That was such a huge relief for me to have my mom and dad with me while I had to learn to do things I never thought I would have to.
Thursday, May 26, 2011
Max, Debbie and Haley Carlisle came to visit. We all decided that we would make Dennis tough out this cuff deflation. We all agreed it’s going to be tough love. Well, Debbie starting caving minutes in so her and I went out to eat. Max stayed with Dennis cause I knew I would wimp out. We also went to Target and I picked out some bedspreads. While we were in Houston the amazing people of my hometown were fixing up my house. When I say fixing up, I mean renovating! My mom sent me pictures and I couldn’t believe it. Every time I would get a photo, I would just sit and cry. One, because I knew my house would never be the same as it was and two because of the outpouring of love I knew was going in to doing what changes needed to be done. When Debbie and I got back to the hospital Dennis had gone 7 hours. He was not talking any sense and we all got in big time trouble by Dr. Donovan! When he finally came around Debbie ask Dennis if he knew who she was and he answered “Martha Stewart”. We then knew he was OK!
Wednesday, May 25, 2011
We got a new roommate and his name was James Marshall. He crashed in the San Diego Super cross race. He is 21 and his girlfriend is named Sheree. We continued cuff deflation but it is still very disconcerting for Dennis. Cuff Deflation is hard to explain but it’s like this. There are two little balloons on each side of the trachea. They are fully deflated and you get all the oxygen going to the lungs. When you deflate the pressure of air comes upon each side of the trach through the nose and mouth. It feels like you are struggling to breathe. His stats would stay up but he struggled all the time. It is very hard to watch and even more hard when he asks you to please take him off. It’s a tough process.
Tuesday, May 24, 2011
Dennis started eating better and so was off the insulin but he needed a lot of protein so he had to drink ensure. Not the best stuff but it does the trick. I think the biggest obstacle was undoing everything that the last place we were at had done. We were still working at the cuff deflation and he went about 20 minutes. It is so disconcerting because you want to go a certain amount of time but the whole time he is begging you to inflate the cuff. Dennis also got a very young roommate that stayed up all night long and he also had a very colorful mouth. He didn’t stay long and we weren’t sad to see him go! Dennis started to handle the cuff deflations at about an hour a time. We had visitors from home! Randy and Robin Cofer had come to MD Anderson for Robin’s check up. It made us so happy but we also realized how much we missed home. When they left Dennis cried and cried. Of course, I was crying before they left. I wanted to hop in their suitcase and come home with them. The next day was pretty boring. Haley Carlisle came to see us and we walked to MD Anderson and ate dinner. Then day 101 and day 14 at our daughter Whitney and her friend got to come visit us! She got to be trained in sling transfers and ramp pushing. Yes, there is a training sessions on how not to throw your patient out of a chair. We had to go up a steep ramp and come down. I thought this was kind of funny until later on when I tell a story of Dennis’s roommate. They came and told us that they were not real optimistic about Dennis getting off the vent. Alan, Don and Dennis’s Dad Larry came for a visit. It was very hard on Dennis because he was so homesick and he couldn’t talk. I felt very bad for him. Then as quick as everyone got there, everyone left. Of course the tears started!
Monday, May 23, 2011
Jan and I started learning about transfers and how to put the sling on the lift and how to use the lift. We had classes about skin and oh my goodness they were scary. We had classes about all things that are associated with Spinal Cord Injuries. Dennis still could not deflate the cuff in his trach so we could put the speaking valve in and he could talk. He told us it felt like he was drowning. The speech therapists told us some people take right to it and some don’t, we were obviously in the latter category. Jan and I learned how to suction Dennis by using a dummy. Dennis cannot cough up phlegm so if he needs to cough we have to suction him and once again it’s scary! You have 11 seconds to put a suctioning tube down his throat and NOT hit the lung, and then suction the phlegm out. I felt like we were do the “How to become a nurse and respiratory therapists in 30 days or less class.” In the afternoon we practiced on Dennis. Dennis also got off oxygen at this time which was really good because when we went outside we didn’t have to haul the vent and the oxygen bottle. When we did go outside it was a lovely 100 degrees with 100 % humidity. Jan and I got signed off on doing lift transfers so we didn’t have to go get a nurse every time we did something with Dennis. I was really getting impatient with things that were happening and I was trying to stay upbeat. It is very hard when you see someone you love trying so hard to overcome very difficult circumstances. Your heart literally breaks every single day. I read a passage that really struck home with me. Patience is a spiritual force which undergirds your faith and causes you to be constant through the trail. It holds it up like a pier under a long span of a bridge.
Sunday, May 22, 2011
Day 91- 4th day at TIRR
We got into a routine. Jan would go to the apartment in the evening and do our laundry and I would stay all night with Dennis. When Jan got there in the morning I would go to the apartment and sleep a little then take a shower and come back. Dennis was up every day and this day he was fitted for a chair. This event took me back a little. Although I was coming along, I still lived in the land of denial just a little. I’m not sure it was denial as much as just not wanting to admit this was going to happen. I didn’t want him to be fitted for a chair, I didn’t want to be there, and I didn’t want to help in any way. Thank goodness for Jan because she could step in when I just couldn’t handle things. Back home the Relay for Life was going on and I remember thinking, why is the world still turning, why isn’t everyone as devastated as I am? But the world does keep turning and people do go on living their day to day lives. I was just so homesick and I know Dennis was also.
Friday, May 20, 2011
The first night was so very scary. Jan and I drove to our apartment and took the shuttle back to TIRR for a trial run. It was very hot, humid and sticky in Houston. They got Dennis up and dressed, we couldn’t believe it, they didn’t mess around there. The first time in 89 days he had been up and around. His medications were all messed up and the vent settings were all wrong. They asked us where his cloths were and we didn’t have any. Jan had to go to Target to get him some clothes and socks and shoes. He got tired fast but that was OK, he was actually sitting up in a chair! He passed his swallow test so he had some crackers, then he had some OT. We hadn't got to hear him talk (normally) in a very long time. When we were at OU, Debbie had made a ring of phrases and words that he could look at and nod. He got what is called a speaking valve the helps tha air flow over the vocal cords to speak. He hadn't mastered the speaking valve yet but we had it. The first night his air hose got unconnected from the vent and the alarm went off. I had no idea what was wrong and it took forever for the nurses to get down there. I told Dr Donovan the next morning and we were moved to the room across from the nurses’ station the next day.
Thursday, May 19, 2011
Day 88- Leaving Select! Yes, I will miss some people that were here, like the respiratory therapists and some of the nurses, but this place almost killed Dennis and I couldn’t wait to get out of here. I had to say goodbye to my daughter. I felt like we had abandoned her for these last months and now we were going to be so far away. My mom had said goodbye the night before, she couldn’t bear to watch us leave. We were now going someplace that we wouldn’t have visitors popping in on us anymore, we were alone. The thought of living in Houston petrified me, but you dig deep and knowing that God was right beside me somehow helps you manage to plow through. The plane ride was scary, very scary. It was a 6 passenger plane with no co-pilot. But nothing was scarier than walking into T.I.R.R. in the medical district of Houston, Texas. We met Dr. Donovan the head of the spinal unit and then went to the room. It was too sterile and very old. I kept thinking that it needed a rug. I just wanted my mom and my dogs and I wanted my daughter. But most of all I wanted my husband, my soul mate, my best friend, to wake up and tell me everything was going to be OK. Unfortunately, you don’t always get what you want but, but somehow God gives you the strength to go on.
Wednesday, May 18, 2011
Day 85- Dennis got a staph infection from the pic line and infection in his spittle. I didn’t know if things could get much worse and I didn’t want to find out. It seems like we are under attack, spiritually and physically. In spite of it all, Jan and Alan headed to Houston in my car.
Dennis was getting worse by the minute. I tried to call Dr. Adler and he wasn’t returning my calls. Finally Dr. Ram cam and he ordered a rectal tube to try and relieve the gas in the stomach. I was a wreck by the end of the day, but finally Larry got there and then Max and Kris and Mike. They all put their gloves on and started in on Dennis. People that came that day like Jana and Randy Dietz, really thought they were not going to see Dennis again. The nurse came by and told us that if Dennis was running a fever he couldn’t get on the plane tomorrow. Max just looked at her and said try and stop us.
Tuesday, May 17, 2011
T.I.R.R called and told me that I would have to have modifications done to my home, but they had accepted us and that was all I was focused on. We got a plane to take us to Houston and I let Larry, Dennis’s dad knows about the modifications that had to be done to the house. Dennis did get his neck collar off and that was a great blessing. Jan, Dennis’s mom had told us she was going to Houston with us and that was such a relief to me because I was petrified to go alone. I was going to live in Houston, Texas! We got an apartment that had a shuttle that went right to the rehab center. It was right across from the Astrodome and it had been newly remodeled after the Hurricane Katrina people had been housed there. My mom came down to Select and sat with Dennis while I went home and packed for Houston. I had the car serviced and I popped in at the bank. I was so homesick all I did was cry, but I knew our journey was half over. My poor dogs were so lonely but people had been coming over to the house every day. When I got back to the hospital Dennis’s stomach looked terrible and he was running a fever and they found two blood clots in his right arm. I was trying to stay focused but people are talking to me about bankruptcy and nursing homes and power of attorneys and I just want to scream. I had a major meltdown and of course I called my mom sobbing, she seemed to be the only one who could get me focused and calm. It seemed to me like Dennis had just given up and I didn’t realize at the time that he had just figured out what had happened and that he wouldn’t be going home or back to work. He was ready to give up. I was reading a book at the time and it said that when you are walking through the valley of the shadow of death, to be sure and keep walking, don’t pitch your tent! So once again I am reminded to take one step in front of the other one.
Monday, May 16, 2011
Day 74- T.I.R.R called us for an interview. They said they would be calling back tomorrow for a conference call. I made sure Max was there with me when they called but I got upset because our insurance only going to allow for 60 days rehab and then “long term” nursing home care. I couldn’t wrap my mind about being a quadriplegic and only having 60 to get your life in order. They called back the next day and said they were hesitant to accept us because they felt we had unrealistic expectations about Dennis being on the vent. At that time I did, because I just knew they could get him off. Cindy, our case worker reassured them and I went to lie down. As I was lying there I felt God tell me to rest and let God be God. I was getting too caught up in the natural circumstances of what was happening around me and I had to rest. I found a scripture that I still stand on to this day. Matthew 6:34, “So do not worry or be anxious about tomorrow, for tomorrow will have worries and anxieties of its own. Sufficient for each day is its own trouble.”
Sunday, May 15, 2011
My mom and dad would come down to visit some but daddy was getting pretty frail and it’s hard for him to come down. He cried and cried in Dennis’s room the night he came and that was about one of the hardest things I had ever witnessed, my big strong daddy crying over Dennis. I haven’t seen my dad cry very often and it broke my heart. Whitney came as often as she could and we would spend some time at the mall or going out to eat. During this time I had met a doctor whose daughter was paralyzed and he told me he had sent his daughter to Craig in Denver and he hated it. Then I met a Dr from Jim Thorpe and he had done his internship at T.I.R.R and he highly recommended it. I felt like God had directed our paths, giving me confirmation, so we applied for T.I.R.R. My mom was retiring and Dennis’s mom was retiring. Mom told me she was retiring so she could come and live wherever we were going to end up. People were making financial decision for me and talking about nursing homes for Dennis. This was the most upsetting time for me. There were only a handful of nursing homes in the state of Oklahoma who would allow vent patients. I was not about to let my 48 year old husband live in a nursing home for the rest of his life and I didn’t want to move away from home. Everything at this point was starting to overwhelm me and I really started to feel sorry for myself. I felt like the walls were closing in and I needed my best friend to talk this thrrough with. Then I would feel guilty because I was not the one that was paralyzed. I was reading a Joyce Meyer book and I read this passage... in this life whatever exists now or will exist in the future is not permanent, but temporary. The good news is no matter how dismal our current situation or outlook, we are assured by God, “this too shall pass”. I felt like God was saying, No matter what you are going through at this moment, sooner or later it will pass. Take one moment at a time, one baby step in front of the other. There is Joy in the Morning!
Friday, May 13, 2011
Our hometown Lions Club had a fund raiser for us and Whitney went to accept the check. If I have not emphasized this enough I need to some more. We are so blessed to live in a small town like Fairview. The people here are amazing and we couldn’t have made it through this without them. What the people of Fairview, Ok did for Dennis and I will always be a blessing and we can only hope to repay in kind.
I got to go home and stay all night. One of my best friends had lung cancer at this time and I had wanted to spend time with her. She had got to visit me on occasion, but she wasn’t feeling great and she had to go to Houston to M.D Anderson for visits. Dennis and I were also in the process of deciding which rehab center to go to. I was doing research online and at this point it was between Denver and Houston. I would have rather gone to Denver but the ratings for Houston were better.
I started praying that God would steer us to the right place.
The days were very long at Select. Dennis was getting basically no PT or OT and there were no doctors to regulate his meds or whatever situation came up. His stomach was so distended it looked like he had swallowed a watermelon. He had to have colonoscopies and his sleeping pills were all messed up and he was hallucinating. It was so disheartening and heartbreaking. He finally sat up in a chair for 2 hours one day but he doesn’t even remember it. When Dennis was conscious he was so homesick he broke my heart. This is the man who didn’t care if he ever went anywhere and we were now going on two months away from home. It was July, our favorite month of the year, and I hated it. July 4th is always at the lake with the Carlisle’s and we knew that is where everyone would be. It’s also the month we go to Grand Lake with the Carlisle’s and this would have been our 13th year. I spent the morning crying out by the pond, then that afternoon Ed and Becki Scott came and spent the day with me. It meant so much to me that they cared enough to come and sit with me. Dennis’s heart rate was below 60 all day and that evening it got down to 30. The nursing staff doesn’t really know what to do and the bad thing is you get a new nurse almost every shift because they are contracted out. I called my cousin Vicki and her husband Rodney and they came and prayed over Dennis late that night. Prayer works!
Tuesday, May 10, 2011
The lessons we learned at the facility called Select Specialty Hospital are ones we will forever take with us and not in a good way. It was a glorified nursing home and not even a good one at that. They came around for physical therapy and that was sitting him up in bed for 10 minutes. If Dennis did not want to they could not stay. The next thing I should bring up is that Dennis was drugged out of his mind and the only thing he remembers from Select is cartoon dreams. If it wasn’t for my good friends like Debbie Carlisle and others that came so often to sit with me, I think I may have gone mad. This was the point I began to have some serious conversations with God about His plan. His plan wasn’t making much sense to me and I felt very deserted. I got to finally go home one day and when I walked in my house I broke down. Everything was exactly the same as the day I left just a little dustier. It was surreal to walk into a place you were so happy at the time you left and have your life in so much chaos when you come back. I did some laundry and my daughter and I got our pajamas on and watched one of our favorite movies, “To Sir with Love”. The next day I ran errands and went to the bank to see everyone, which is very hard when all you do is cry. But it was so much harder than I had anticipated. People don’t know what to say and the first sign of sympathy I break down.
Monday, May 9, 2011
We settled in at Select and the first night there Dennis’s ventilator quit. The ventilators are named after Snow White and the Seven Dwarfs. We had no idea what to do, but they came after the alarm sounded, fixed it and we were good to go. My friends from OU Medical Center, Mike and Shearl had an apartment right across the pond where we were staying and they offered to share it with me. It is the firefighter’s apartment and they keep it for families in need. What a God send it was, we could see it from our window as it was only one block away from Select. No coincidence, God was working! We had a good laugh when we went over there and the apartment is decorated in clowns!
Sunday, May 8, 2011
Chapter 3: The nightmare.
I read in Joyce Meyer’s book a passage that said, “Even though we may not see where we are headed or even feel His presence with us, we must keep on taking the steps that are set before us, encouraging and strengthening ourselves with the knowledge that God is working out everything for the best for us as we follow Him in childlike faith and confidence.” That passage took on a special meaning as we entered this new facility that we called Nightmare on 58th street! We came to the ICU unit of Select with great expectations. It was a brand new facility and the rooms were huge with flat screen T.V’s and a chair that laid down into a bed. But, it was so eerily quiet that it was disturbing. My friends Shearl and Mike had brought their son Mickey there about a week ahead of me so I was happy I had someone to talk to. Whitney had to leave and go back to school and I had a meltdown or two or three because I missed her terribly. There were no doctors at this facility but the specialist stopped in to see the patients. We had a lung doctor named Dr Alder who was a little Jewish man and he was A.D.D. We were told he was awesome so I didn’t worry too much. Now I can laugh!
Saturday, May 7, 2011
Thursday, May 5, 2011
On day 38 we were going to transport Dennis to Select. I had such mixed emotions I couldn’t even concentrate. I had grown to love the staff at OU and the fast pace kept me from really thinking about what was down the road. But as we were putting him on the gurney he crashed. Whitney, his mom Jan and I were all standing there watching as Liz jumped on him and grabbed the paddles. At this point, I turned and walked to the end of the ICU hall and sat down. Whitney stayed there to watch and I looked up and Jan was coming down the hall sobbing. I just knew he was dead, but I asked, “ is he gone?” and she shook her head no. So on day 40, (we said we had traveled the desert for 40 days but little did we know we were going around the desert again) we said goodbye to OU medical center and their wonderful staff and headed to the next step at Select.
Wednesday, May 4, 2011
They were getting ready to kick us out of OU Medical so we had to look at a long term facility until Dennis was ready to go to rehab. We decided to go and visit and fairly new clinic called Select Specialty. We went and toured the next facility, and I had this eerie feeling. It was too quiet and where was the drama and activity? But it was a very nice looking place and the rooms were huge with flat screens in every room. Then, of course, there was insurance trouble. Select was not on our insurance’s policy so I got my prayer partners to start praying. After the social worker at OU and our insurance had long talks, and God intervened, the insurance agreed to let us go there. We were only going to Select Specialty Hospital until Dennis was strong enough to go to T.I.R.R or Craig rehab centers. Also that week, Dennis also passed his swallow test which is huge for people with trachs and vents. So now he could now eat solid foods. He also got to the point where I could go to my cousin Vicki’s and stay all night, so I would leave about 10:00 and be back by 8:00. There is an alarm the ICU trauma makes if someone crashed or needs the nurses and I could hear it in my sleep. To this day that alarm haunts me.
Tuesday, May 3, 2011
We celebrated, and I use that term lightly, Dennis’s 48th birthday in the OU Medical Center and was I was slowly starting to realize that our great life was never going to be the same. I was digging deeper into the scriptures than I ever had and I knew God’s Word was true, but when you are staring at the kind of cirmcumstances I was staring at it was hard to keep uplifted. I would always make sure that only positive came out of my mouth, but in my heart I was dying. People who came and were so down and depressed and they annoyed me, some even cried and I wanted to scream at them, but I did the exact same thing when no one was around. I grew to hate people saying to me that God will never give you more than you can handle and I vowed to never say it to anyone. I, better than anyone, know that scripture is true, but it just doesn’t feel like it at the time. I was starting to get homesick, I missed my dogs, I missed my mom and dad, I missed my things, I even missed my work. Then I would feel guilty because I had these feelings when my husband was suffering so much. But the one constant in my life was God, who was always there, even when I did not feel his presence, I knew He was there.
Monday, May 2, 2011
One day my friend Beth Beeby came to visit and we went in to see Dennis. We were praying over him and all of a sudden there was commotion our in the hall. The nurses pulled up in with the crash cart and I was thinking, oh boy, somebody is crashing. Little did I know that it was Dennis and he had crashed right before my eyes and I didn’t even know it. They dragged Beth and me out of the room and she held on to me while they worked on him. All I saw was a big needle and people all around him. It was one of the scariest moments of my life and little did I know I would have to go through that again before this was over. The next day they told me that Dennis needed a temporary pace maker put in His heart rate was to low and he needed help. I was all alone at the time they told me this and I tried to get someone on the phone. I couldn’t get through to anyone and it seemed like I couldn’t make one more decision. That was the point poor Elton Regier decided to visit. Breakdown time for Cheri! They assured me the pacemaker was temporary and everything was fine. I would try to sleep at night but it never failed, a nurse would come in the waiting room and wake me saying Dennis wanted me right now. He still had his days and nights turned around and he was making it very hard for me to get any rest.
Sunday, May 1, 2011
Our respiratory therapists and nurses were awesome. When you have to make a journey like ours, it always helps when God puts people there for you that bring you calm. We had a RT who was a great man of God . He was from India and his name was Sajie. He just radiated joy when he walked in. He would spread the love of God wherever he went and he had a very calming effect on me. The nursing staff there was so generous and friendly. They were not allowed to talk about their faith but somehow the message came through. Dennis’s lungs got bad and he developed pneumonia but they told me that was to be expected. He was hallucinating from all the pain medication and he would tell me to get the dogs off of him. I hated seeing him like this; I wanted my level headed Dennis back. He had to have a bronchostomy and he didn’t wake up for a day and a half.