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June 30, 2007 Jerrall- As of today, Debbie is blind in both eyes. Debbie’s good right eye looks like all of the blood vessels have busted and it will be Monday before we can see a doctor. Also today Debbie’s pulse/ox is hard to get a signal because Debbie’s hands and feet are so cold. I still have socks on Debbie’s feet and hands to try to keep her warm. I never dreamed what it would be like to be with someone until the end. Debbie is still getting better treatment than in a facility. It feels wrong to love someone so much. By talking to the nurses, it might be over by Tuesday. The new meds are stopping the tremors, but suppressing the lungs. Today Debbie seemed like she was in a coma in her wheelchair. She only opened her eye one or two times. Also Debbie’s limbs are so cold. Now being blind in both eyes, there is no more pleasure in life for Debbie. So I laid Debbie down early at about 8:30 pm. And I got in bed with her. I rubbed all of her limbs and wrapped my body around her to warm Debbie up. I talked to Debbie about our life and all that we had done. At some point, we both fell asleep. At least Debbie knew she was with me and never alone. With Debbie’s harder to breath pattern, we are down to a matter of days. And it important to me to be Debbie’s eyes. God if you take Debbie to night please show me my next step. Every minute for over 4 years I had cared for Debbie and I am going to be so lost. I sure need your help now than ever before. Amen!
June 29, 2007 Jerrall- Debbie has not really been awake for several days now. Debbie has been asleep even during the night and I still keep giving her the new meds. Debbie does not have oxygen drops any more and she is still on extra oxygen 24 /7. Debbie’s kidneys are starting to shut down. I can tell because of the amount of urine output. Debbie had a catheter put in on Monday, so I could measure level of output. The output decreases every day and Debbie good eye is full of slime all of the time. To look at Debbie, you would think she was asleep, but Debbie is just resting. After this week, Debbie can barely hold her head up on her own. Debbie is at peace and went to sleep last night with her head resting on my arm on the big black mat. Debbie knew I was there and she felt safe. Krystal spent the night and we all slept in the den with Debbie. In all it was a great night. Debbie only needed help 3 times last night. Krystal stayed asleep the whole time. This morning Debbie had great stats at a one litter flow and I turned her over to the 7 am nurse, I went to sleep for three hours. When I got up Debbie was still asleep and I asked the nurse to give her a bath to try to wake her up. Debbie’s arms and leg are still freezing and Debbie was wearing my thermal suit to bed and felt super warm. I love spending nights with Debbie because I know what she has gone through the night. I pray Debbie knows how hard I try and she is never alone. With organ failure, I have no system to expect. This is in God’s hands now. I know I can keep Debbie calm and at peace until that time comes.
June 26, 2007 Jerrall- Well, I finally got what I wanted. Debbie no longer jumps and has stopped panting when she breaths. Debbie went to sleep in her wheelchair yesterday and has not woken up as of this afternoon. I still work with Debbie as I did when Debbie was in a coma. No one would want to be my wife because awake or asleep you cannot stay in the bed all the time. Debbie has been shutting down for several weeks now; we just did not understand what was going on. The first thing someone will do on this final journey is to have very cold feet and hands, so I have double socks on them which makes me feel better and Debbie’s feet warmer. Soon they will start turning blue and that will be hard to take. Nurses leave at 11 pm and Debbie and myself are alone. I put Debbie in her bed and lay next to her. Debbie never moves, maybe because she knows she is not alone. I do oral care 3 times a day and the last two days deep nasal suctioning. Last night, I got 3 six foot long suction canisters hoses full from Debbie’s lungs. To me, this is comfort care and I am about fed up with all of the rules with all of the people that or just trying to help. Even Forest Gump knows how hard it is to find best friends. Debbie’s oxygen stats in 2 weeks have went from 98% on room air down to the 80’s on room air. Now Debbie wears extra oxygen all the time. The lack of oxygen may be why Debbie sleeps so much. At night, I always hold on to Debbie to make sure she is breathing. Just looking at her, she looks at peace as if she had passed. We have had great fun since the accident. The first 3 and ½ years there was no suction or oxygen issues. We went to the Outer Banks 5 times and that is where Debbie always felt closest to God. I remember that poem “Foot Prints”, when I looked back I saw only one set of foot prints because I was carrying you. Debbie loves sunrises and sunsets and the beach more than anything in the world. I know when I take Debbie back to the Outer Banks, she will be in my heart and not in her body. It will be the same at the mountains.
June 25, 2007 Krystal- God always has a plan for all of his earth angels. He is the one that decides when it is time for the earth angels to become “his” angels. My mother has always told me since I was a child to try my best and that was all I could do. Everyone grieves in different ways. Some are sadden by Mom’s final journey, and others believe it is time for her to become a real angel. I just want everyone to know that Debbie will always be remembered for who she really was. She was a friend, wife, and mother. My mother’s spirit will live on forever because of all the lives she has touched. All I ask is for people to stop and think at least one time a day. Think about what you are truly grateful for. It is then that it will not matter how much money you have, but that you can walk, talk, or even think. True happiness comes from within, and I believe that my mother would be happy for me, my sister, and my father. I know she will always be looking down on me from heaven, and I cannot wait until we can meet again.
Be Thankful For Everyday and Live Life to the Fullest!
June 24, 2007 Jerrall- Last night was the first time for us to sleep in the den and everything worked out well. The first part of the night went good, and then at 3 am the pulse/ ox went off even with a 2 liter of oxygen. The drop went down to the mid 80’s and it took a ½ hour to get Debbie above 90 %. I did not give Debbie any Morphine all night long. Morphine is not the miracle drug I wanted it to be. Everyone that thinks their loved ones will be on muscle relaxers for more than 3 years need have that love one blow out a candle every day. Having a person blow out a candle is a great way of testing lung strength. Stay on top of the atrophy. Debbie’s decline was more from being smashed and the lost of half of a lung. The lungs can deteriorate in weeks or months. With Debbie not able to blow a candle out and MRI does not show everything. How the lung doctor can tell is by the rate of decline of stats. Debbie has gone from 98% on room air to the upper 80’s in 4 months. Debbie is on extra oxygen ¾ of the day and all night. They tell me at one point no matter how much oxygen I give it will not raise Debbie’s stats. No one knows how they will react to each issue. I feel like I wish this could be over today, but that is not the right way to think. I am so lucky to have the last four plus years with Debbie. In the last week Debbie has dropped to the upper 80 % oxygen level and that tells me Debbie’s lungs are all most gone. Again the lung doctor told me last week that comfort is the goal not how low the stats are. Just give Debbie extra oxygen and what every meds it takes to keep Debbie comfortable. This is not the way it will be for most people but with three different injuries Debbie has a bad prognosis. The last three days Debbie’s stats dropped more every day. I will continue to be with Deb, but her body is changing. Deb’s face and shoulders are starting to turn red. I do not know what this means, but some new things are happening. The nurses say when I am with Debbie her pulse drops by 20 points. It is 12:30 pm, and we’re watching Twister and Debbie is holding my hand and even gave me a kiss. If Debbie only knew what was happening. The nurse got here at one pm and I went straight to bed. I slept most of the day. I do not know why, but it could be the stress, or the reality of it all, or just plain tired. Every time I got up, the nurse said go back to bed because my face looked like I had been hit wit a 2x4. After reading the book, The Final Journey, I realized Debbie had been on this journey for several weeks. The nurse told me to day the first thing that will happen is the feet and hands will stay cold all the time. Tonight I put two pair of socks on Debbie and two extra blankets also I noticed Debbie’s eyes are starting to sink in a bet. But Debbie has been calm all day on tremor or jumping. Even to night Debbie is at the most peace since the accident. Tomorrow I will meet a new Hospice that will evaluate Debbie and I can find out what to expect or what to look for until I see her on Thursday. The nurse will be putting a urine catheter in so they can measure out put. This has been the longest day yet.
June 23, 2007 Jerrall- Last night Debbie slept all night long and until 10:30 am. The only thing different was Debbie’s stats. Oxygen was lower and her pulse was up, and she had a breathing pattern I have never heard. I took 3 naps today while the nurse was here. This morning the first time I woke up, Debbie had a deep rattle, so I had to go down Debbie’s nose with a straw catheter 3 times. It worked great and Debbie could breathe normal again. While the nurse watched Debbie, Krystal and I moved Debbie’s whole bedroom into the den where the “time machine” mat sat in front of the picture window. I am still able at this time to still get Debbie up in her wheelchair. But when the time comes, Debbie will become too weak to get out of bed. I can’t think of a better place to be where Debbie can see the terrace and all of the plants blooming. Tonight when every one was gone, Debbie and I watched a movie before going to bed. Debbie oxygen stats have been in the 80’s all day without extra oxygen.
June 22, 2007 Jerrall- This morning I got Debbie up and ready for the nurse by 7 am. Debbie was awake, but not very happy. After getting Debbie stable, I went back to sleep 2 and ½ hours before the biggest meeting yet with the doctor, nurse, and support staff. We got all of the meds changed and some new ones added. The doctor looked deep into my eyes and said he did not want me to be the nurse or doctor any more, but just Debbie’s husband. I still talk to Debbie about old times and just hold her hand. That is so easy to say, but the nurses still need help. Debbie has the best nurses I have ever worked with. Tonight we started the Morphine, and it did what they said. The Morphine made her breathe easier, have a higher pulse, and lower oxygen stats. Blondene, one of the nurses, was so professional and made me feel or know this was best for Debbie. I am afraid this is the complete opposite. We have done four years and do not know what to expect. I think it is better that Debbie is at peace and not jumping any more. Amber was here for the meeting and both girls gave Debbie probably her last shower. Amber is so upset today, and she could not be around Debbie. Krystal went home about 9 pm to study for a test. No one knows how they will react to this until it happens. And I believe that no one has the right to judge the pain the whole family is going through. The pain is so great; words cannot even begin to explain. Please keep Amber and Krystal as well as Debbie in your prayers. Some people way not want to read any more posts, but I want to record my day to day feelings as Debbie, and our family as well, goes on this final journey.
June 19, 2007 Jerrall- Today there was no happiest in our home. Even the nurses were so quite you did not know they were there. Finally tonight I asked the nurse this is hard enough please let us still have conversation and make the best of this tragedy. Hospice intake came out today and met Debbie there need for care and will start helping today. I will still be alone with Debbie 11 pm until 7 am. I have two choices to keep doing what I am doing with my meds and Debbie’s oxygen stats dropping slowly and jumping all the time which could go on for years, more UTI, pneumonia, ect. Or I could let there doctors take over and get better meds and get control of the extra secretions. Choice two the meds will be so strong Debbie will be bedridden and her o2 stats will drop faster and suppress Debbie’s respiratory vary fast and this will be over in 4 to 6 weeks. Both would be death of natural causes just one Debbie suffers longer and I can not take much more or be fair to Debbie. You would have to be in my shoes to really understand the feeling of someone pulling on your shirt wanting you to make them able to breathe. I save Debbie’s life several times a day for over four years. All of the girls and doctors think this will be the fairest way for Debbie to die in peace. Once the new meds start there will be no more jumping, or pain and that will be the first time in over four years. To night Debbie went right off to bed and everyone is gone until tomorrow. I wanted to make this post before I have to set up with Debbie the rest of the night.
June 18, 2007 Jerrall- Any one reading this post remember every brain injury is different. Just because Debbie may be one way and some one else will be another way. Debbie’s car seat was only 5” wide so first is the crushing of the body and crushing Debbie’s left lung. This has turned out to be a bigger issue than the brain injury. Today at the lung doctors office we were told at this point we need to do all we can to make Debbie comfortable. Debbie’s injury is in the brain stem and the cerebellum. Also deep in the prongs and center or core of her brain. All of Debbie’s teeth and sloping inward because of the fractures from the accident. This means the up pallet in Debbie’s mouth is fractured also. The main issue is through the upper pallet tear drop secretions appear and Debbie can not breathe because of her own secretions. It is so scary when Debbie grabs me and this I can take all of her troubles away. I try and it normally works. But with this issue comfort and chocking is the main issue. With the next week the new Doctors will have taken over Debbie’s and comfort not therapy will be the main goal. We will not take out the peg tube but let nature take its course. Debbie will never see the mountains again or the ocean. They tell me the meds will suppress the respiratory system even more and at one point she will not be strong enough to even get out of the bed. When that day comes I will move her bed to the den so Debbie can see outside and watch TV. I do not know the next move but we have a lot of doctors to see in the next two weeks. Because of atrophy and a brain injury it is hard to say why this has to happen. Debbie is losing about 1% of her oxygen level every week and drop almost every night in the 80’s. In the last week of meeting no one thinks Debbie will see September. I told the girls at the meeting today I would prefer they do not see Debbie like this just remember the good times we have had. I know being a lone at night watching Debbie die of natural causes will be the worst time of my life. But sometimes you have to love some one so much you have to let go no matter my feelings are. Debbie I can promise you I will hold your hand until the end and you will never be alone. “Make every moment count” “Best friends forever”
June 15, 2007 Jerrall- Today was the first morning I fell a sleep and left the door locked and the nurse could not get in. She had to call me on the phone to wake me up. I can tell some thing has to give. While the nurse got meds I got Debbie dressed and up in her chair. It was hard to tell how long she had been awake. I am so lucky some thing did not go wrong. After Debbie was set up with the nurse I got 3 hours of great sleep. I wonder if I will ever get back to a normal sleep pattern. When I got up Debbie was still so tight we could not get her shoes on and that makes about 3 days. All day Debbie was jumping and not happy. To night Debbie did not go to sleep until11:30 pm so may be she will sleep later we are running out of thing to do at 4 am. Today was a day of tears for Krystal and me. Krystal took me out to eat dinner and told me how Debbie had told her 3 different times after her mom was killed and she never wanted to be put on life support. Debbie is getting weaker by the day and getting tighter as well. Today there was a lot of talk about getting a DNR for the heart and keeping the oxygen. Also increasing the types of meds to keep Debbie from jumping. Heather the nurse supervisor used the word happier but I would comfortable. This could give Debbie more time to rest but she can not stand any more atrophy. This would just delay the end. I heard a lot of options today but they do not really count until Monday when we go to the lung Doctor. I am so lost, how could all of this happen so fast. Debbie has always been able to breathe and a strong heart to where we have not been in this position. I will never forget my mother telling me 2 years it might be in Debbie’s best interest not to wake up from the coma and I was pushing Debbie to hard. I am not doctor and just want someone to step up all tell me the next step. I have tried everything and nothing is helping and Debbie is still declining. The days are going so slow waiting until Monday. I know we need a DNR and more or stronger meds to stop the jumping but that is all I know. I also know we can not be the only one in this situation what do other 4 year post TBI‘s do.
June 14, 2007 Jerrall- We got Debbie right off to sleep last night but at 3:30 am Debbie was a wake and jumping again. Debbie’s oxygen levels were great but this time it a spasms issue and with extra meds and I got in bed with her to stretch her out and give Debbie a great massage after an hour it was time to get up and in her wheelchair where Debbie feels best. But at 4: 30 am all there is to do is watch a movie. This morning it was sweet home Alabama and it was great. At the end remember where the man on the beach says my do you want to marry me any way and she says so I can kiss you anytime I want! What a better way to start a day. By the end of the movie Debbie was calm and squeezing my hand I could not ask for any more under this situation. The nurse came at 7 am and I keep Debbie stretched out until she got Debbie’s food and meds. Then I got to take a four hour nap and Debbie was in great hands. Debbie had a great rest of the day. When she does not sleep then that is when Debbie is the most cognitive. All day Debbie smiled and had a great expression on her face. If only Debbie’s body can last as long as her will to survive great thing are possible and her body is my issue or job. The rest of my day I spent with Debbie and getting ready for two meetings tomorrow. The rest of Debbie’s day was good, she fell asleep at 9:30 pm.
June 13, 2007 Jerrall- Debbie went right to sleep last night about 11 pm. The nurse Comfort helped me put Debbie to bed. Debbie is still taking 2 mg diazepam before bed to prevent panting and keep stats up and one liter flow of oxygen in her mouth while she sleeps. Nursing leaves at 11 pm and I stay up and watch Debbie all night which is great. If we have 24 hour nursing after Monday I will still stay in Debbie’s bedroom and the nurse’s desk will be in the hall. The last thing Debbie needs to see when she goes to sleep is me and the first thing when Debbie wakes up she needs to see me. During the night if Debbie has an issue my club hand seam to calm her. Still when it comes to the end I will be there but hopefully not alone. But hopefully with a trained nurse. Last night Debbie woke up at 3:30 am and her heart rate dropped to 57 for a minute and scared me to death. Debbie was ok just wet. It took me 45 minutes to take her apart and back together again. Debbie’ s oxygen level stays at 100% usually with the extra one liter flow and if it drops Debbie needs suction to clear her air way. I gave Deb extra meds and got in bed with her and I think we both feel asleep for about and hour. Then we got up early and were ready for nursing before 7 am. In all it was a good night when I removed the oxygen lead and Debbie only dropped to 94% which is ok. I heard today old people have a circulation problem and fall asleep often because of blood circulation to the brain, is that not interesting. Just one more lead to follow up on. Krystal called me tonight to make sure I was ok. Krystal told me maybe god is using Debbie now to make a difference in other life and when it is time he will take her home and she could even become an angle that helps look over all of us. Krystal is 19 years old and was in the car with Debbie and really surprised me with this view. I just have to keep remembering God is just giving me this second chance to have extra time to say good bye to Debbie that not just every one get and have to make every moment count. I do not know what else to say.
June 12, 2007 Jerrall- Today has been one of the hardest days yet. You only get the answer to the questions you ask. So most often there is a lot of questions you do not think of and some you are afraid to think of since no one knows everything. Mainly you have to follow your heart. Today my heart took me to where I had to be but did not want to be. Knowing is always better than guessing but the truth is too much to bear sometimes. Debbie is getting weaker every day and is having oxygen drops almost every day. I called yesterday if a doctor had got back some blood work to be able to increase some oral muscle relaxers so I could get Debbie standing again. Then later that day a stranger in the medical field made a couple of comments that clicked in my head and made me think of Debbie’s issues in a different way. This stranger had nothing to do with Debbie or even knew of Debbie. I am always talking medicine with any one who will listen. I called several of doctors in Debbie’s care group and ask different question, different ways more than one time to a doctor. After several hours on the phone to many same answers started to point to the same issue. Debbie has a respiratory issue, then a closed head injury, and last a pelvis issue. I am so worried about getting Debbie standing again; excessive new tone and loss of cognitive function that I did not even think of the lungs are one big muscle. How could I have been so close to the trees? Tomorrow is the first meeting, then one Friday and last of all two on Monday. For one time all of the doctors are going to know what every one is doing and together we are going to come up with a care plan to keep Debbie as comfortable as possible or even improve her quality of life. Over the 4 years I think the Baclofen and oral muscles relaxers have weakened Debbie’s lungs to the point of the cause of the oxygen drops. The lung doctor is the main doctor in this new look at Debbie’s life. We have had orders for out patient evils for months and not been able to breathe enough to keep oxygen stats up and so weak to even hold Debbie’s head up. I will keep all the posts up to date for the next week a computer crash caused me to lose all of the notes for the first of June. If this is right then will the lung doctor want all of the Baclofen stopped and Debbie drawn up into a ball in pain to extend the time of the lungs and then other doctors deal with the pain with meds and all therapy end and recovery. I said I did not want to be at this point. It all comes down to what I want for Debbie. I will tell any one we have tried for over 4 years at recovery and at first with luck but Debbie also had been crushed on one lube of her left lung and you have to be able to breathe to function in other ways. I want Debbie to be able to have some quality of life but at this point I have to hold on to her many times a day and night because she is gasping to breathe and at the same time I am doing respiratory work to make that possible and it is getting worse and more often. At this point if Debbie’s time is limited to 2 to 3 months then I want Debbie to stop therapy, stop jumping, start breathing and be allowed to pass in peace and with some dignity. I may lose my best friend but not my faith. I have not cried for a long time but just the thoughts of the meeting on Monday had made me not be able to even function the rest of the day. I will never give up and hopefully medicine can save Debbie but as of tonight every one can see the decline and how tired Debbie is from this 4 year fight. Right now Debbie is too weak for any surgery and I refuse to kill her. All of this is in GOD’S hands. The next six days Debbie need everyone possible praying for a solution.
June 10, 2007 Jerrall- I want to start this post a little different. Today we had a wedding reception dinner at our house for Amber and Yusimi. Debbie was not able to attend Amber’s wedding last weekend but this weekend Amber wanted to include Debbie as much as possible. I was with Krystal when the dinner started she needed some help and as a single parent and caregiver I am only one person I try to do everything. When Krystal and I got there the nurse gave me report and Debbie was in the den lying on the mat in the den with an oxygen line in her mouth and a high pulse and low oxygen level. I set on the mat and did percussion work on Debbie’s lungs. Debbie could tell my big club hands. It took about an hour for me to get Debbie stable and up in her chair. Amber new this could be the issue and knew with me there were no worries. Debbie was able to be up in her chair until the end of the dinner. I know how important this was for Amber and the nurse Sharon on duty. Erin a special girl that went to school with Amber and helped me when Debbie first came home was even here. Erin you have made such a difference in my life you will never know. When everyone left Debbie set in the living room and watched a new DVD. Debbie went to sleep in her wheelchair right a way and I just held her hand. Every now and then she would squeeze my hand back. To night I feel like the luckiest man in the world. Even with Debbie a sleep, an oxygen line in her mouth I feel like one of the luckiest men in the world. Every now and then I have to suction Debbie’s airway but still thank you God for this time to be with Debbie. The over stimulation from to day must have made Debbie so tired. Still today has been a special day in my life. It is hard to ever know how many people ones life can touch. I know I can keep Debbie breathing but if her heart would stop at any time I know that would be the end of Debbie’s life. This is a hard reality to live with every day. A special friend was here tonight and told me I was in a hard spot Debbie’s body after 4 plus years was just getting tired. This may be true but I will never give up on Debbie and will keep Debbie breathing as long as it takes. I will say it is not my hands that make this work every day but some one lead them to this day. There is a God and this is not his doing just some times bad things happen to good people and we may never know why but I am thankful for this time with Debbie that no one else could have given me. It is 11 pm and time for me to get Debbie to bed and she is still a sleep but it is not everyday your oldest daughter gets married. I am so thankful for too many things to list. It is all in how you look at things. “Best friends forever”
June 2007 Jerrall- This site is more of a personal daily journal of Debbie’s life after a brain injury. The injury or damage was cause by a man dropping a cell phone and bending over to pick it up. He ran across the median and hit Debbie head on. If in any way the information found on this site will help any one, then Debbie’s life was not a waste. I keep up with a lot of people on different journeys and I learn something new every day. I also learn new things about myself. I still wonder after 4 plus years if other caregivers do not get tired any more, or hungry, or do not have dreams when they do get that three hours of sleep. Also, I wonder if caregivers do not get mad any more or happy any more and cannot see past today. I know this does not mean anything good and no one will talk about it. I wish others would pass on the secret of how they deal with these issues day to day. The first year went so fast and we were so busy with as much therapy as possible. The second year all of the therapy ended and I was told Debbie needs time. We had a great year traveling to places we used to go, but things were different then before. The third year therapy started again, but respiratory issues also started. I believe it is from atrophy of the lungs drugs and the damage from a crushed left lobe. During the start of the fourth year, therapy stopped and home nursing started because of several trips to the hospital from low oxygen stats. During the fourth year, Debbie has oxygen drops almost every night and sleeps with a 1 liter flow nasal cannula all through the night. Debbie’s cognitive function is still declining. Both girls moved out to there own houses. I wonder what the rest of the year will be like. “Make every moment count.”
I new when this happened I could have gone to a funeral or accept what happened and send this time letting go slow to where this would not take me down all so. April 4, 03 my life ended and we both got the chance to get a second chance at life. Now I spend every day keeping Debbie’s air way clear and from dieing of suffocation as the way her mom did in 02. If Debbie’s heart would stop today I would have to let her go because of the anoxic injury that would farther occur. I will never give up on Debbie but will never cause any more injury to occur. No one would ever want to live like this but it was a trauma and there is nothing I would not do for Debbie even trade my life for Debbie’s. But I would never make this trauma any worse and am lucky to have all of this time to say good bye. “Debbie Best Friends Always “
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