What an incredible day for my dad and all of us. When we arrived in the morning the sedation of Versed was on a drip of 10. By 9:30/10:00 a.m. the drip was at 5. By 12:00 p.m. the drip was off. Throughout the morning, dad would mumble things like, "I want to stay alive." "Good morning." "I love you." and "I have to go to the bathroom." As the sedation wore off dad's agitation only made an appearance when he had to go to the bathroom. He absolutely hates his catheter (who can blame him?)
Within 10 minutes of the Versed being turned off, dad's eyes popped open and he started talking more clearly. We met with Dr. A. he said his goal was to do everything possible to prep dad for Chelsea Acute Rehab. This included 1.) Doing Physical Therapy; 2.) Consulting with the Cardiologist; 3.) getting Physical Therapy and Occupational Therapy working with dad to see if we could get dad standing up; and 4.) get the trach out of dad's throat. He even mentioned the possibility of dad getting to drink water to see how he did. Everyone was SO incredibly excited about this news.
Around 1:30 the physical therapists came in to work with dad. Unfortunately, the nurse had given dad some morphine 10 minutes prior, so he was pretty groggy. He did a good job, followed all of their commands, however he did not talk or look at them too much. They had the PT person holding dad up, and the OT person worked with dad to grip things and move his hands and arms. Dad was able to pinch, grip, and move his arms over his head. Because the PT was holding dad back, he pinched her hand and winked at the OT who was working with him. She asked if dad has a sense of humor, we explained that dad is a very sarcastic and funny. They thought he was trying to joke with them because he wanted her to let go so he could get up and walk. Next, the PT person moved in front of dad to work with him on his legs. He did a good job moving his feet and legs. He tried pinching her with his feet...again he thought he was being funny. It is good to see some of dad's personality come out. When dad had to be laid back in the bed Nathan had to hold him down as they put the restraints back on. Dad went to in an angry temper tantrum. He told Nathan, "You're not my buddy. Not my friend. I'm mad at you."
The PT wore dad out pretty good and soon he was sleeping on his own (without medication). When dad woke up he felt VERY bad for being mean to Nathan. He looked at Nathan and started saying, "you're my buddy. You're my best buddy." Nathan asked dad if he remembered what he said to Nathan before his nap. Dad instantly said "yes" and started crying. He repeatedly said, "I love you. You're my best friend." I asked dad if he remembered my name. He called me Aubraille. I told him I was his daughter and he instantly started crying and saying, "My daughter, Aubraille. My daughter Aubraille." I corrected dad and told him I was his favorite daughter, to which he responded with lots of laughter. Glad to see glimmers of my dad return. Today has been a great day (and it's only 4:00 p.m.)
UPDATE BY CHANTEL: All of us kids were able to stop by for a bit in the evening. Dad was so much better than I had seen him when he was awake on Saturday. When I first walked in he got emotional and kept saying "I want to live, I want to live." We assured him that each day he is getting better and better. He did not have to be restrained and was able to sit in the bed without trying to get out all of the time. The trach was out of his throat. He had no oxygen or other respiratory help and still had really good O2 saturation.
As the night wore on he got a little more frustrated and upset as I think he starts realizing his situation more. He really wants to be more independent, have the ability to get out of the bed and tae care of some things himself. When we tell him he can't he gets really frustrated asking "Why?!? Is it really so hard to let me get out of bed?!?" At that point in the night, Nathan was able to explain to him that he couldn't today because he was still hooked up to some lines and that we didn't want him to do any damage to himself, but that tomorrow in the morning they would let him get out of the bed. He would sigh loudly and lean back and say "Fine! Tomorrow...10am!" and we would be okay for a little while. It was nice to see that we could rationalize with him a little bit. We were also able to redirect him when he would get upset as well, which we couldn't do earlier. At one point I suggested that we talk about Maylin (his granddaughter), and reminded him that she is such a cutie-pie and got her picture for him to see. He took her picture out of my hands and turned over and said "Yeah, Maylin, she is a cutie pie....a real cutie pie." I suggested that we should take her to the beach in South Haven this summer and he liked that idea. I suggested he could build her a big sand castle, that she would really like that and he said "Yeah - A HUGE ONE!" Then we talked about watching the sailboats and sitting on Uncle Tim's porch. He thought all of those things sounded good.
After I left, it sounds like he may have proceeded to get a little worse, and take out his anger on the people around him. I hear that he got a few good knocks in on Nate, and tried to with Aubrey, Uncle Tim, and the nurses as well. Based on what I have read in the last few weeks, all of these are normal stages and emotions that these patients work through...both being sentimental and agitated/aggressive.
We have started this blog to document the daily progress for Clarence McEldowney's recovery from cardiac arrest and anoxic brain injury.
Monday, January 7, 2013
Sunday, January 6, 2013
Day 16 - January 6, 2013
Sedated....all day long....
Today when the family initially got into the hospital, Dad was still on a relatively high dose of Versed which is being used to sedate him overnight. When we had left last night, we were told to expect that they would start to wean him off again between 6 and 8am and that we could expect another day similar to yesterday with dad off from almost all sedatives. Instead, we were told that plans had changed and that he needed a day to rest.
We were pretty upset and frustrated and confused at the change in plans. It seems pretty convenient that when short staffed, they have a "day to rest" planned for my dad. However, in talking further with them, they talk about keeping him safe, they don't want him to fall out of bed, or stress his body or heart too much. We started to come around and figured that we could just get through the day...just one more day of this....then tomorrow the light at the end of the tunnel. The doctors had decided Friday that he was ready to move to a rehab facility as soon as the weekend is done and the paperwork gets processed. Maybe we could live with a day of rest.
Around noon, Aubrey asked to talk with our case worker just to make sure that everything still looked good for going to the rehab center tomorrow. The case workers said that because dad is back on the IV sedation, so long as he is still on the IV sedation, there is no way that the rehab will accept him into the program. ok....deep breath.... We go talk to the nurse and ask if they will more seriously think about backing off the sedation because we do not want to risk our chance to move dad forward. She agreed to talk with the doctor and VERY SLOWLY, they cut back on the sedation and increased a different medication to help ease his agitation. However, by 6:30pm tonight when we left, he was still sleeping and on a pretty healthy dose of the IV sedation. They had already begun to discuss that he would likely not be ready to move like the original plan had been.
So another day of feeling like we took at step back. We were looking forward to moving dad over to the Rehab Facility in hopes that they have more experience dealing with patients during this agitated phase of recovery and the right resources to help them safely progress. But it seems like that is slipping away. It feels terrible.
And tomorrow we have another new doctor beginning his 7 days in the CCU, so we will work to get familiar with him and his philosophy and see what strategy he develops (hopefully there is a strategy). With Dr. M, it seems like there was always a strategy....each day it was "lets try this" or "lets try that." All of our future plans (like the planned move the CareLink and the planned move to Rehab) were developed by Dr. M, and seem to be dismantled by Dr. P. So tomorrow we will meet Dr. A and just pray that he has some fresh ideas and/or will continue to move forward in a similar fashion to Dr. M.
Specific prayer requests for today:
Today when the family initially got into the hospital, Dad was still on a relatively high dose of Versed which is being used to sedate him overnight. When we had left last night, we were told to expect that they would start to wean him off again between 6 and 8am and that we could expect another day similar to yesterday with dad off from almost all sedatives. Instead, we were told that plans had changed and that he needed a day to rest.
We were pretty upset and frustrated and confused at the change in plans. It seems pretty convenient that when short staffed, they have a "day to rest" planned for my dad. However, in talking further with them, they talk about keeping him safe, they don't want him to fall out of bed, or stress his body or heart too much. We started to come around and figured that we could just get through the day...just one more day of this....then tomorrow the light at the end of the tunnel. The doctors had decided Friday that he was ready to move to a rehab facility as soon as the weekend is done and the paperwork gets processed. Maybe we could live with a day of rest.
Around noon, Aubrey asked to talk with our case worker just to make sure that everything still looked good for going to the rehab center tomorrow. The case workers said that because dad is back on the IV sedation, so long as he is still on the IV sedation, there is no way that the rehab will accept him into the program. ok....deep breath.... We go talk to the nurse and ask if they will more seriously think about backing off the sedation because we do not want to risk our chance to move dad forward. She agreed to talk with the doctor and VERY SLOWLY, they cut back on the sedation and increased a different medication to help ease his agitation. However, by 6:30pm tonight when we left, he was still sleeping and on a pretty healthy dose of the IV sedation. They had already begun to discuss that he would likely not be ready to move like the original plan had been.
So another day of feeling like we took at step back. We were looking forward to moving dad over to the Rehab Facility in hopes that they have more experience dealing with patients during this agitated phase of recovery and the right resources to help them safely progress. But it seems like that is slipping away. It feels terrible.
And tomorrow we have another new doctor beginning his 7 days in the CCU, so we will work to get familiar with him and his philosophy and see what strategy he develops (hopefully there is a strategy). With Dr. M, it seems like there was always a strategy....each day it was "lets try this" or "lets try that." All of our future plans (like the planned move the CareLink and the planned move to Rehab) were developed by Dr. M, and seem to be dismantled by Dr. P. So tomorrow we will meet Dr. A and just pray that he has some fresh ideas and/or will continue to move forward in a similar fashion to Dr. M.
Specific prayer requests for today:
- Pray that my dad can come off from the sedation tomorrow without the same level of agitation that we have seen the past few days.
- Pray that the Rehab Facility will understand his case and that they will be ready, willing, and and able to meet him where he is at and actively work to move him forward.
- Pray for good care and fresh ideas/strategies as we meet and begin to work with Dr. A tomorrow.
- Pray that as a family we can continue to be with my dad and advocate for him, and balance our lives outside of the hospital as all of us have to return to work this coming week.
Saturday, January 5, 2013
Day 15 - January 5, 2013
Wow - its hard to believe that we are at day 15....it feels like we have been at the hospital FOREVER. And then in other moments, we feel so happy with the progress made in what is actually a relatively short period of time.
Today was the second day of having my dad completely off from all sedation during the day. As Aubrey mentioned yesterday, dad also has a voicebox in this trach now which allows him to talk. Today seemed a little better than yesterday, but only in subtle ways.
Yesterday, dad seemed to repeat a cycle every 2-3 minutes. He would (i) rest back, (ii) open his eyes really wide, try to sit bolt upright, then get agitated and fight when we pushed him back down in the bed, and (iii) then would stay aware and focused for 30-45 seconds before closing his eyes and "dozing off" for a another 30-45 seconds...then repeat....then repeat...then repeat. Today, I would say that he seemed a just slightly less cyclical and the time between trying to sit up seemed a little further apart.
Yesterday, dad really wanted to get out of bed, and that still has not changed in the slightest. He is so focused on getting out of the bed, it is really hard to distract him towards anything else. However, today he has tried new strategies for trying to get out of bed, including gaining leverage with his legs whenever possible and/or getting someone to come in close for a hug and then leveraging their body to pull himself up out of the bed. If we could trust that he wouldn't bolt for the door, we could maybe try to get him up....but honestly I think there is no guarantee that he wouldn't really wind up hurt if we tried to early because he is very strong and he is VERY determined to get out.
Today was actually the first time that I got some extended time back in his room with him. He swung through a full range of emotions in the hour or two I had with him. He started by feeling really upset that I would not take the restraints off from him (I heard "Chantel - I am really mad at you" several times), to "I love you" and "I have a good life", to some funny requests like "I want to see my file", to just in general being frustrated and wanting to be out of his current situation entirely. Based on our discussions with the neurologist and with several others in the medical field, it seems this response is very typical of someone waking up in the hospital after this type of event.
One other problem that we have encountered is that he seem very frightened to sleep and fights it with his whole being. This is just me stretching and filling in what I imagine could be going through his mind. But he wakes up and is told gently about his accident and that he has missed the last 12-13 days of his life. HOW TERRIFYING. So now, we try to convince him that it is safe to go to sleep. We tell him "We will wake you up tomorrow and everything will be fine" and there is fear and distrust. He tells us he trusts us, but in his mind, how can he be sure he isn't going to sleep through another week or two (or ever)? So the doctors and nurses use some sedation to try to force him to relax and sleep at nighttime and he fights. Tonight, it took 2 times the amount of sedation that it took last night to get him to sleep and was still a 3+ hour long process. As soon as he starts to feel the foggy/relaxing effects of the sedation, he seems to push all the harder to stay awake.
So overall, another positive day. Its nice to see my dad coming back around, even if it is slow.
As far as specific prayer requests for today:
Today was the second day of having my dad completely off from all sedation during the day. As Aubrey mentioned yesterday, dad also has a voicebox in this trach now which allows him to talk. Today seemed a little better than yesterday, but only in subtle ways.
Yesterday, dad seemed to repeat a cycle every 2-3 minutes. He would (i) rest back, (ii) open his eyes really wide, try to sit bolt upright, then get agitated and fight when we pushed him back down in the bed, and (iii) then would stay aware and focused for 30-45 seconds before closing his eyes and "dozing off" for a another 30-45 seconds...then repeat....then repeat...then repeat. Today, I would say that he seemed a just slightly less cyclical and the time between trying to sit up seemed a little further apart.
Yesterday, dad really wanted to get out of bed, and that still has not changed in the slightest. He is so focused on getting out of the bed, it is really hard to distract him towards anything else. However, today he has tried new strategies for trying to get out of bed, including gaining leverage with his legs whenever possible and/or getting someone to come in close for a hug and then leveraging their body to pull himself up out of the bed. If we could trust that he wouldn't bolt for the door, we could maybe try to get him up....but honestly I think there is no guarantee that he wouldn't really wind up hurt if we tried to early because he is very strong and he is VERY determined to get out.
Today was actually the first time that I got some extended time back in his room with him. He swung through a full range of emotions in the hour or two I had with him. He started by feeling really upset that I would not take the restraints off from him (I heard "Chantel - I am really mad at you" several times), to "I love you" and "I have a good life", to some funny requests like "I want to see my file", to just in general being frustrated and wanting to be out of his current situation entirely. Based on our discussions with the neurologist and with several others in the medical field, it seems this response is very typical of someone waking up in the hospital after this type of event.
One other problem that we have encountered is that he seem very frightened to sleep and fights it with his whole being. This is just me stretching and filling in what I imagine could be going through his mind. But he wakes up and is told gently about his accident and that he has missed the last 12-13 days of his life. HOW TERRIFYING. So now, we try to convince him that it is safe to go to sleep. We tell him "We will wake you up tomorrow and everything will be fine" and there is fear and distrust. He tells us he trusts us, but in his mind, how can he be sure he isn't going to sleep through another week or two (or ever)? So the doctors and nurses use some sedation to try to force him to relax and sleep at nighttime and he fights. Tonight, it took 2 times the amount of sedation that it took last night to get him to sleep and was still a 3+ hour long process. As soon as he starts to feel the foggy/relaxing effects of the sedation, he seems to push all the harder to stay awake.
So overall, another positive day. Its nice to see my dad coming back around, even if it is slow.
As far as specific prayer requests for today:
- Pray that my dad will get a good restful night of sleep tonight and that going forward he will feel at peace about going to sleep both for naps during the day and for sleeping at night.
- Pray that he will not be as agitated, and will start to understand the reasons/logic behind why he cannot get out of bed and be safe at this point in his recovery. That he needs to build a trust and follow the instructions of the nurses.
- Pray for a smooth transition from the critical care unit to the inpatient rehab facility Ilikely Monday). Also pray that my dad will be able to actively participate in the therapies that they plan for him so that he can continue to qualify and benefit from their care.
- Pray that in the coming days/weeks/months that we all will approach each day, as a wonderful gift of another day which none of us have been guaranteed. Understandably, this road could be incredibly frustrating, but I trust that God is greater and can make his burden light and bring him peace.
Friday, January 4, 2013
Day 14 - January 4, 2013
(Brought to you by Aubrey)
What a crazy exciting day.
I walked into the waiting room, a Volunteer approached me and said, "are you with the McEldowney family? The doctor needs to see you immediately." I ran back to my dads room and he was sitting up in a chair. He wasn't in the bed. He was not hooked up to any machines. He was not sedated. I was in shock. I was SO happy! Dr. M explained that he was going for a radical approach today. He was keeping dad off from all sedation for the entire day to see what would happen.
It has been exciting to see dads progress. He is following more complex commands. While in the chair he could follow directions from the doctor ("Clarence, readjust yourself using the arm rests.") dad would do just that. He would plant his feet, grab the arms of the chair, and lift himself up. As dad became more aware he become more agitated and more aggressive. The plan was to keep dad from being too stimulated to see if this would help with the aggression. This meant that the doctor restricted who was allowed to see dad and how many of us were allowed to go back.
Around 12:30 p.m. we met as a family with the doctor, supervising RN, and a representative of patient services to address our concerns for my dad (about constantly being sedated, nursing care, etc). The meeting went well. Dr. M was very excited to see what today would hold for my dad.
As the day progressed so did my dad. He continued to try and talk and communicate with us. He has a trach in still which means he can't talk. We believed that this was adding to his agitation. At the meeting we asked about doing a voice box in the trach. The doctor agreed. At around 1:30 p.m. Dr. M ran out to the lounge and told me to come quick. When I walked back to his room, he was surrounded by two doctors, two techs, three nurses, someone I didn't know and myself. Thats when I heard it. I heard my dad speak for the first time in 14 days!! Dad lifted his legs, pointed at his feet and said, "get these off" (they had his legs restrained because dad tried jumping out of the bed). They agreed to do this. As soon as they took the restraints off dad made a run for it! He immediately threw his legs off the bed and tried pushing himself off, thankfully there were 5 or 6 people there to stop him. He was not happy. When asked why he was aggravated he said, "too much. Too much, too much extra." There were too many people in the room. We have a very wonderful Tech, ML, who sat and worked with dad all day, sat him back and told him he was not allowed to get out of bed. Dad looked at her and said very forcefully, "I dont want you! I don't want you!" despite my dad's sudden dislike of her, he listened very well to her and did lay down and did relax. We all exited the room and ML was able to get my dad to sleep (without any medication).
Throughout the day, we continued to see improvement in my dad. He understood he was in a hospital (he thought he was at U of M), he recognized all of us. (Calling Tom: Tommy). When Nathan went back ML asked dad, "do you know who this is? Dad responded by saying, "yup, he's my best friend." Dad rested a minute and looked up at Nathan and said, "I love you." What a joyous moment!
Earlier in the day dad kept saying that he wanted to die, he would occasional swear at the nurses, but as the day went on his attitude started to change. He started saying that he didn't want to die and kept saying, "it's a good life." He stopped telling the nurses to go away and instead started kissing their hands and telling them, "I love you."
The goal for tonight is to allow dad to get a good nights sleep (he needs REM sleep). Tomorrow he will be awake, unmedicated and we will see what progress he makes after getting a good nights sleep.
Oh - and due to so much progress, Dr. M and the neurologist (Dr. R) agreed that he should be transferred to an acute rehabilitation center for assessment and occupational, physical and other therapies as required to get him as far as possible towards coming home. Since this paperwork was started late in the day and because it was a Friday, this move will probably not happen until Monday....but it feels so good to have a plan.
What a crazy exciting day.
I walked into the waiting room, a Volunteer approached me and said, "are you with the McEldowney family? The doctor needs to see you immediately." I ran back to my dads room and he was sitting up in a chair. He wasn't in the bed. He was not hooked up to any machines. He was not sedated. I was in shock. I was SO happy! Dr. M explained that he was going for a radical approach today. He was keeping dad off from all sedation for the entire day to see what would happen.
It has been exciting to see dads progress. He is following more complex commands. While in the chair he could follow directions from the doctor ("Clarence, readjust yourself using the arm rests.") dad would do just that. He would plant his feet, grab the arms of the chair, and lift himself up. As dad became more aware he become more agitated and more aggressive. The plan was to keep dad from being too stimulated to see if this would help with the aggression. This meant that the doctor restricted who was allowed to see dad and how many of us were allowed to go back.
Around 12:30 p.m. we met as a family with the doctor, supervising RN, and a representative of patient services to address our concerns for my dad (about constantly being sedated, nursing care, etc). The meeting went well. Dr. M was very excited to see what today would hold for my dad.
As the day progressed so did my dad. He continued to try and talk and communicate with us. He has a trach in still which means he can't talk. We believed that this was adding to his agitation. At the meeting we asked about doing a voice box in the trach. The doctor agreed. At around 1:30 p.m. Dr. M ran out to the lounge and told me to come quick. When I walked back to his room, he was surrounded by two doctors, two techs, three nurses, someone I didn't know and myself. Thats when I heard it. I heard my dad speak for the first time in 14 days!! Dad lifted his legs, pointed at his feet and said, "get these off" (they had his legs restrained because dad tried jumping out of the bed). They agreed to do this. As soon as they took the restraints off dad made a run for it! He immediately threw his legs off the bed and tried pushing himself off, thankfully there were 5 or 6 people there to stop him. He was not happy. When asked why he was aggravated he said, "too much. Too much, too much extra." There were too many people in the room. We have a very wonderful Tech, ML, who sat and worked with dad all day, sat him back and told him he was not allowed to get out of bed. Dad looked at her and said very forcefully, "I dont want you! I don't want you!" despite my dad's sudden dislike of her, he listened very well to her and did lay down and did relax. We all exited the room and ML was able to get my dad to sleep (without any medication).
Throughout the day, we continued to see improvement in my dad. He understood he was in a hospital (he thought he was at U of M), he recognized all of us. (Calling Tom: Tommy). When Nathan went back ML asked dad, "do you know who this is? Dad responded by saying, "yup, he's my best friend." Dad rested a minute and looked up at Nathan and said, "I love you." What a joyous moment!
Earlier in the day dad kept saying that he wanted to die, he would occasional swear at the nurses, but as the day went on his attitude started to change. He started saying that he didn't want to die and kept saying, "it's a good life." He stopped telling the nurses to go away and instead started kissing their hands and telling them, "I love you."
The goal for tonight is to allow dad to get a good nights sleep (he needs REM sleep). Tomorrow he will be awake, unmedicated and we will see what progress he makes after getting a good nights sleep.
Oh - and due to so much progress, Dr. M and the neurologist (Dr. R) agreed that he should be transferred to an acute rehabilitation center for assessment and occupational, physical and other therapies as required to get him as far as possible towards coming home. Since this paperwork was started late in the day and because it was a Friday, this move will probably not happen until Monday....but it feels so good to have a plan.
Day 13 - January 3, 2013
(Today is brought to you by Aubrey)
Today has been a very difficult day. We came in this morning with the expectation that dad would be awake when we got here. When we left last night the plan with the doctor was that dad was going to be put on a day/night schedule. (off the sedatives during the day and on them at night to help him sleep).
Not only was dad not awake he was completely knocked out by sedatives. When asked why, the nurse said that she did not think that taking dad off sedatives was in dads best interest. She said that he was too active and she was concerned about his safety. I disagreed. I felt like she did not want to deal with a difficult patient so she decided to chemically restrain my dad. This led to a very aggressive conversation with the nurse and the doctor. Initially they agreed to decrease sedation, and they did. However the second my dad started to move they would increase the sedation again. Around 2:00 p.m. Dad was almost weaned off the sedative completely. They had to clean his trach then they were going to take him off all sedation. When I went back to see my dad not only had hey not taken him off the sedation, the had quadrupled his dose. When asked why, the nurse replied that he got agitated and that she was concerned for his safety. I struggled with trusting her decision to sedate my dad so much. She would not budge and would not answer my questions.
At that point we got the supervising RN and the patient services manager in to discuss my dad's care. The discussion did not go well. I was mad, i dont feel that they really listened, and they talked to me like I was a child. The meeting ended with the agreement to meet with the head of the nurses, doctors, and family tomorrow. In the mean time the plan was to keep my dad snowed with drugs. I was so mad I walked up and down stairs in the stairwell. I ended up walking up and down about 21 floors. I am sure that my legs will be very sore tomorrow.
Despite the fact that they heavily sedated by dad, he was still responding. He would still follow some commands, he could still tell the nurse he had to go to the bathroom. Tomorrow is a new day.
I am reminded of Mark chapter 4:27-28 - The Parable of the Growing Seed.
"Night and day, whether he sleeps or gets up, the seed sprouts and grows, though he does not know how. All by itself the soil produces grain—first the stalk, then the head, then the full kernel in the head."
I trust that even though I can't see dads progress, God is working behind the scenes.
Today has been a very difficult day. We came in this morning with the expectation that dad would be awake when we got here. When we left last night the plan with the doctor was that dad was going to be put on a day/night schedule. (off the sedatives during the day and on them at night to help him sleep).
Not only was dad not awake he was completely knocked out by sedatives. When asked why, the nurse said that she did not think that taking dad off sedatives was in dads best interest. She said that he was too active and she was concerned about his safety. I disagreed. I felt like she did not want to deal with a difficult patient so she decided to chemically restrain my dad. This led to a very aggressive conversation with the nurse and the doctor. Initially they agreed to decrease sedation, and they did. However the second my dad started to move they would increase the sedation again. Around 2:00 p.m. Dad was almost weaned off the sedative completely. They had to clean his trach then they were going to take him off all sedation. When I went back to see my dad not only had hey not taken him off the sedation, the had quadrupled his dose. When asked why, the nurse replied that he got agitated and that she was concerned for his safety. I struggled with trusting her decision to sedate my dad so much. She would not budge and would not answer my questions.
At that point we got the supervising RN and the patient services manager in to discuss my dad's care. The discussion did not go well. I was mad, i dont feel that they really listened, and they talked to me like I was a child. The meeting ended with the agreement to meet with the head of the nurses, doctors, and family tomorrow. In the mean time the plan was to keep my dad snowed with drugs. I was so mad I walked up and down stairs in the stairwell. I ended up walking up and down about 21 floors. I am sure that my legs will be very sore tomorrow.
Despite the fact that they heavily sedated by dad, he was still responding. He would still follow some commands, he could still tell the nurse he had to go to the bathroom. Tomorrow is a new day.
I am reminded of Mark chapter 4:27-28 - The Parable of the Growing Seed.
"Night and day, whether he sleeps or gets up, the seed sprouts and grows, though he does not know how. All by itself the soil produces grain—first the stalk, then the head, then the full kernel in the head."
I trust that even though I can't see dads progress, God is working behind the scenes.
Thursday, January 3, 2013
Day 12 - January 2, 2013
(Today is brought to you by Aubrey)
Today was a long day. The family showed up to the hospital around 8:00 a.m. When we showed up dad was still very heavily sedated. They had reduced the sedation by half, which was good, but he was still very out of it. Nathan, Amber and I took turns back in dad's room to help keep him calm as the sedation wears off.
We could tell that dad was less and less sedated and more and more alert by his strength and just by simply watching him. In spending the day by his side we could see the very subtle changes that all pointed to my dad becoming more alert. When we first came in, his mouth would just hang open and he did not really move his facial muscles too much. By lunch time we had noticed that he was starting to move his jaw, his tongue, and his eyebrows. Dad's eyes slowly came back to us as well. When he first opened his eyes they were glassy and just stared off, not focusing on anything. As the afternoon went by, dad started turning his head toward who was talking and he started focusing his eyes around him too.
We took turns talking to dad, telling him that he was in the hospital that he was okay and that he was being taken care of. Dad was starting to lock eyes with us when we talked. Dad did a lot of moving back and forth trying to get comfortable. Our nurse kept telling Nathan and I that dad could not hear us. She kept telling us that we were reading too much into dad's movements (to this I responded by leaning in and whispering into dad's ear: "It's okay dad, I know you can hear me. I know you are in there. Just ignore scrooge over there.")
It was around 4:00 p.m. when Nathan noticed that the neurologist walk by. Nathan ran out into the hall and asked him to come in and look at dad. Dr. R started talking to dad. Dad started by moving his eyes and head toward the doctor. The doctor was amazed. He moved up next to dad and asked him to squeeze his hand...AND HE DID! Dr. R asked dad to squeeze his left hand...AND HE DID! Dr. R looked at my dad and said, "Clarence can you stick out your tongue?" Dad turned his head looked Dr. R in the face and nodded his head yes! I laughed out loud and started crying! Dr. R proceeded to tell dad that he needed him to actually stick his tongue out...AND HE DID! The nurse in the room said that dad was probably not actually following the doctor's commands. So we looked at dad, he looked at us and stuck his tongue out as far as he could. (The nurse froze...and didn't move for a while). Dad proceeded to move his eyes, hands, and legs on command. Next, dad started moving his mouth. Nathan said, "I think Clarence is trying to talk." Dr. R said, "I think he's just moving, I don't think he's talking." Nathan started talking to dad again, telling him he was in the hospital and that he had been here a few days. My dad looked up at Nathan and mouthed, "How long?" we all froze and Nathan asked dad, "Can you say that again?" Again, dad looked up at Nathan and said, "How long?"
The doctor looked at me, shocked. He simply said, "He really is trying to communicate. I would not have believed you if I had not seen it with my own eyes."
Praise the Lord!!
Once dad started to realize what was going on, his blood pressure and heart rate went through the roof. We shut the lights off and only let one or two people back there at a time. They started him on a new sedative to help him sleep through the night.
Sitting with dad was physically exhausting. When he gets agitated we are having to literally hold him down. Those of you who know my dad know how strong he is. Once the sedation wore off, my dad was fighting with all of his might. Nathan was the only one who could restrain my dad. Even the nurses could not hold him down. Nathan ended up wrestling my dad for six or seven hours straight with only one or two breaks for the nurses to care for my dad.
Today was an amazing day. We laughed, cried, danced. Today was a gift from God. The glory of today goes to God. He has healed my father. We still have a long road of recovery a head of us, but we know that dad is there and that he is fighting with all of his might.
Today was a long day. The family showed up to the hospital around 8:00 a.m. When we showed up dad was still very heavily sedated. They had reduced the sedation by half, which was good, but he was still very out of it. Nathan, Amber and I took turns back in dad's room to help keep him calm as the sedation wears off.
We could tell that dad was less and less sedated and more and more alert by his strength and just by simply watching him. In spending the day by his side we could see the very subtle changes that all pointed to my dad becoming more alert. When we first came in, his mouth would just hang open and he did not really move his facial muscles too much. By lunch time we had noticed that he was starting to move his jaw, his tongue, and his eyebrows. Dad's eyes slowly came back to us as well. When he first opened his eyes they were glassy and just stared off, not focusing on anything. As the afternoon went by, dad started turning his head toward who was talking and he started focusing his eyes around him too.
We took turns talking to dad, telling him that he was in the hospital that he was okay and that he was being taken care of. Dad was starting to lock eyes with us when we talked. Dad did a lot of moving back and forth trying to get comfortable. Our nurse kept telling Nathan and I that dad could not hear us. She kept telling us that we were reading too much into dad's movements (to this I responded by leaning in and whispering into dad's ear: "It's okay dad, I know you can hear me. I know you are in there. Just ignore scrooge over there.")
It was around 4:00 p.m. when Nathan noticed that the neurologist walk by. Nathan ran out into the hall and asked him to come in and look at dad. Dr. R started talking to dad. Dad started by moving his eyes and head toward the doctor. The doctor was amazed. He moved up next to dad and asked him to squeeze his hand...AND HE DID! Dr. R asked dad to squeeze his left hand...AND HE DID! Dr. R looked at my dad and said, "Clarence can you stick out your tongue?" Dad turned his head looked Dr. R in the face and nodded his head yes! I laughed out loud and started crying! Dr. R proceeded to tell dad that he needed him to actually stick his tongue out...AND HE DID! The nurse in the room said that dad was probably not actually following the doctor's commands. So we looked at dad, he looked at us and stuck his tongue out as far as he could. (The nurse froze...and didn't move for a while). Dad proceeded to move his eyes, hands, and legs on command. Next, dad started moving his mouth. Nathan said, "I think Clarence is trying to talk." Dr. R said, "I think he's just moving, I don't think he's talking." Nathan started talking to dad again, telling him he was in the hospital and that he had been here a few days. My dad looked up at Nathan and mouthed, "How long?" we all froze and Nathan asked dad, "Can you say that again?" Again, dad looked up at Nathan and said, "How long?"
The doctor looked at me, shocked. He simply said, "He really is trying to communicate. I would not have believed you if I had not seen it with my own eyes."
Praise the Lord!!
Once dad started to realize what was going on, his blood pressure and heart rate went through the roof. We shut the lights off and only let one or two people back there at a time. They started him on a new sedative to help him sleep through the night.
Sitting with dad was physically exhausting. When he gets agitated we are having to literally hold him down. Those of you who know my dad know how strong he is. Once the sedation wore off, my dad was fighting with all of his might. Nathan was the only one who could restrain my dad. Even the nurses could not hold him down. Nathan ended up wrestling my dad for six or seven hours straight with only one or two breaks for the nurses to care for my dad.
Today was an amazing day. We laughed, cried, danced. Today was a gift from God. The glory of today goes to God. He has healed my father. We still have a long road of recovery a head of us, but we know that dad is there and that he is fighting with all of his might.
Wednesday, January 2, 2013
Day 11 - January 1, 2013
(Today is brought to you by Aubrey)
I am writing this a day late, so I hope that I do not leave out any of the exciting details that yesterday brought us. When we arrived in the morning, dad was wide awake. His eyes were open, he was moving all over the place and was fighting to sit up. We were surprised to see dad so active, because he tried pulling his trach out the night before.
Nathan and I were in the room with dad trying to keep him calm. Angie, his nurse said that she was surprised at how well he was responding to us (because he had done nothing but fight her all morning). She said that she was seeing some "intentional movements" from dad. When asked to clarify, she said that dad has been putting his hands and arms up and pushing against her when she tries to adjust him or get him to lay down. She said that his movements are not "accidental" but that he really did not want to be bothered by her.
Dad's eyes were very alert. He would look to the door when someone came in, he would move his head and his eyes toward us when we spoke with him. I was on dad's left side holding his hands. He started to squeeze pretty hard. I told him that this made me happy to see him moving so much. Dad turned his head, moved his eyes and looked right me. I smiled and said, "Dad, if you can hear me I would love for you to squeeze my hand." AND HE DID! I was so excited! I asked dad again, "Dad, can you squeeze my hand so that I know that the last squeeze was not an accident?" He looked me square in the face and squeezed again! He did this a total of three or four times!! I cannot express my excitement at this progress!
Nathan grabbed dad's hand and Dad responded by shaking Nathan's hand. Nathan was shocked, "Did Clarence really just shake my hand?" There were many times that dad continued to try to sit up. Nathan had to be forceful with dad and push his shoulder and head down. How did dad respond? He grabbed Nathan's arm and pushed Nathan off of him. Even in dad's semi-sedated state he was too strong for Nathan.
Because he was so active the doctor ordered that my dad be sedated. We were frustrated with this but ultimately we need to make sure that dad is safe. The doctor assured us that this was the only option to keep the trach and dad safe.
Later in the day, Uncle Tim, Aunt Deb, Whitney and Kyle came in to see dad. The sedation had worn off and dad was awake again. Again, dad started following commands "Clarence, squeeze my hand." He did this for several people. When Kyle walked in, I am told that dad looked at him and shook Kyle's hand.
In the midst of the celebration there were some struggles with the nurses and the doctors. We were so excited to see dad awake and we desperately want to see dad make more progress, however the nurses were ordered to keep dad still. Which meant that they had put him on a sedative that we had been fighting to keep him off from. The purpose of this was to keep dad from getting so agitated that he would not hurt himself. We appreciate that they want to keep dad safe BUT at the same time, it felt like we were going backwards in his progress.
I am excited to see dad wake up and I am excited to see what the next day holds.
I am writing this a day late, so I hope that I do not leave out any of the exciting details that yesterday brought us. When we arrived in the morning, dad was wide awake. His eyes were open, he was moving all over the place and was fighting to sit up. We were surprised to see dad so active, because he tried pulling his trach out the night before.
Nathan and I were in the room with dad trying to keep him calm. Angie, his nurse said that she was surprised at how well he was responding to us (because he had done nothing but fight her all morning). She said that she was seeing some "intentional movements" from dad. When asked to clarify, she said that dad has been putting his hands and arms up and pushing against her when she tries to adjust him or get him to lay down. She said that his movements are not "accidental" but that he really did not want to be bothered by her.
Dad's eyes were very alert. He would look to the door when someone came in, he would move his head and his eyes toward us when we spoke with him. I was on dad's left side holding his hands. He started to squeeze pretty hard. I told him that this made me happy to see him moving so much. Dad turned his head, moved his eyes and looked right me. I smiled and said, "Dad, if you can hear me I would love for you to squeeze my hand." AND HE DID! I was so excited! I asked dad again, "Dad, can you squeeze my hand so that I know that the last squeeze was not an accident?" He looked me square in the face and squeezed again! He did this a total of three or four times!! I cannot express my excitement at this progress!
Nathan grabbed dad's hand and Dad responded by shaking Nathan's hand. Nathan was shocked, "Did Clarence really just shake my hand?" There were many times that dad continued to try to sit up. Nathan had to be forceful with dad and push his shoulder and head down. How did dad respond? He grabbed Nathan's arm and pushed Nathan off of him. Even in dad's semi-sedated state he was too strong for Nathan.
Because he was so active the doctor ordered that my dad be sedated. We were frustrated with this but ultimately we need to make sure that dad is safe. The doctor assured us that this was the only option to keep the trach and dad safe.
Later in the day, Uncle Tim, Aunt Deb, Whitney and Kyle came in to see dad. The sedation had worn off and dad was awake again. Again, dad started following commands "Clarence, squeeze my hand." He did this for several people. When Kyle walked in, I am told that dad looked at him and shook Kyle's hand.
In the midst of the celebration there were some struggles with the nurses and the doctors. We were so excited to see dad awake and we desperately want to see dad make more progress, however the nurses were ordered to keep dad still. Which meant that they had put him on a sedative that we had been fighting to keep him off from. The purpose of this was to keep dad from getting so agitated that he would not hurt himself. We appreciate that they want to keep dad safe BUT at the same time, it felt like we were going backwards in his progress.
I am excited to see dad wake up and I am excited to see what the next day holds.
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