Hi everyone!
Whew! Other than the first day with the huge shock, today has probably been the toughest day to date. Just transition issues. We are Scott's advocates. He is unable to advocate for himself. We want the best for him. No excuses. We were so excited to progress to the next level, knowing that meant he was improving and we love seeing new growth each day. We know that we have a mercurial course ahead of us. We have been forewarned many times to expect ups and downs from day to day. We know that as he improves, he will receive less attentive care. His nurses will be responsible for more people and we will need to more involved in setting expectations and details of his plan of care. The realities were a bit starker than we anticipated, though. There is a bigger difference in the level of professionalism, communication, and POC (plan of care) awareness than we anticipated. In ICU, they were always one step ahead of our concerns. We felt they were on top of things. They communicated their plans and expectations. They prepared us for possibilities to come. Each person instilled confidence in us. Here, we feel that we have to be extra watchful and are going to need to be the ones assuring they don't miss something. We do not feel like we can leave him unattended for now. In addition, we are not confident with their infection control procedures to date and have had to devise a plan to address the issues we felt were lacking. The last thing he needs is an infection. And... communication-wise...when they come in, they rush and do what they need to do, but fail to talk to Scottie while they are doing it. In ICU, we noticed that he really calmed down and stopped fighting them when they talked to him as if he were awake. We know he can hear us. He can follow commands. We can imagine he is confused. It seems like such a simple thing to do to be able to give him some peace of mind. It seems like the professional thing to be aware of and do. They have responded promptly and appropriately to our concerns, but it feels disheartening. It gives us extra reason to hope he passes through this stage quickly. We do have confidence in the physical therapist and the wound gal, at least. We are anxious for him to get to Barrows anyway. These issues just add fuel to that desire.
There is no progress today to report. We were warned that he would be worn out from the transition and likely backtrack for a day or two. He slept most of the day today and only occasionally followed commands. He did open his eyes a few times, but no indication of recognition. He didn't participate much with physical therapy/occupational therapy today. They are co-treating him for now, since he requires two people to help move him. The PT re-iterated that he would likely decline for a day or two due to fatigue/exhaustion from the move. So... we focused on giving Scott a "quiet" day to day, allowing him to rest and recover. It seemed a successful day in that way. He did rest well and had more opportunity for rest today. Since there are longer breaks in between nursing visits, he can get more rest in. That is one perk!
We were successful in scheduling a case conference for Scott tomorrow with all of his disciplines in order to address the lacking communication. We are hoping to have a better understanding of his plan of care, progression expectations, and discharge criteria/goals. I want everyone on the same page. I know I will feel much better after that. I also want to be assured that there is a plan for his post-op follow-ups, since we are no longer in the same city as his surgeons. They did request an orthopedic consult for his right shoulder at my urging. The shoulder (AC seperation) was not diagnosed until right before we left ICU due to swelling issues. He left before the orthopedist could examine him. He has a very unusual contour to his scapular spine, not anywhere near the AC joint, so I just want to make sure that someone is thoroughly examining it, so we are not overlooking something. ..especially since he almost never raises that right arm. He will move the fingers and elbow on occasion, but not his shoulder. Anyway, I am pleased that the consult has been ordered.
If there is no additional fracture, PT will apply kinesiotape to the right shoulder to help stabilize the AC joint. Scott does not tolerate the sling in his current state of confusion. He constantly tries to pull it off. He won't have the cognitive ability to be stabilize it with a pillow or opposite hand when he is upright, so the kinesiotape seems the best option... better than nothing, least invasive... one less strap/tube/etc to have to deal with.
His PR and BP have been elevated quite high today, we think due to pain. Tylenol seems to settle him quite well and bring his numbers down to an acceptable range. It will be nice when he can talk.
They tried to put a speaking valve on his trach today, but his current trach is too large. They have to wait another week before they can put a smaller trach in.... It is probably looking like 2 more weeks before his trach is removed. Probably the same with his PEG tube. They increased his calories today since he has lost some weight.
We are unable and not allowed to use our cell phones in the room or on the floor. We have to go to a common area to use them... We do think we have the Wi-Fi issues figured out, so I should still be able to get the daily blog done. Yeah! No functional progress today, but some logistical progress made today.
Other than that.... we expect tomorrow to be a better day.... we are hopeful....
We love you all!
Patti
Thursday, March 22, 2012
Wednesday, March 21, 2012
Day 8: The Helicopter Ride #2, Day 8, March 21, 2012
Okay, we are in Phoenix now. The Wi-Fi here is very sketchy and unpredictable, so I will do the best I can staying up with the blog. It may only be once a day, just a head's up.
First "matter of business", we are still on hold for visitors. We are hoping that in 2 weeks, we will be able to accept visitors. Just guessing...hoping.... Here's the deal.... head injuries are a difficult thing, as you might imagine. We will need to progressively stimulate Scott's brain, but also need to avoid overstimulating and exhausting him. Especially, during this early phase, rest is so critical to his progress, so visitors are limited. We obviously, don't want to slow his progress in any way, shape or form. In addition, he is not alert enough to interact, recognize people, etc. The real support value for Scott and Ashley is likely going to be a bit down the road. When he is awake, and he is going through his rehab, it will likely buoy him up to feel even a portion of the love and support that has been shown him this week. (We are so very humbled and thankful for the out-pouring of love!) In addition, there will likely be times when Ashley needs a break to go to the grocery store, etc.... It will be important for her to re-fuel herself, so she has the strength, stamina and patience that will be needed to endure this long recovery road ahead and to manage all of the physical, emotional, and behavioral challenges ahead. We know it has to be hard to want to show your support right now while everything is so new and fresh, but his needs will likely be greatest as they progress through the ensuing stages. We hate to ask you to be patient, and we hate to have to be patient, too, but... that is what is best for Scott.
When he is able to accept visitors, we will need to develop a schedule so we don't have too many visitors at once. Again, we are counseled to avoid overstimulating and exhausting him. We look forward to the day, but we know we need to be smart about it so it helps Scott rather than exhausting him. As we are adjusting to a new place and new needs, and are closer to Scott and Ashley's home, friends, and support systems, we may find some needs periodically. For instance, we may want someone to come and sit with him while we go shower periodically. We are grateful to know that we have so much help available to us. As we figure out our needs, we will let you know. Right now, honestly, we are simply just trying to adjust to the new surroundings and methods. Big day today, change-wise. We knew he was given stellar attention and care in Flagstaff, but we are especially appreciative of the level of care and level of competence we experienced there. ICU nurses only attend to 2 patients at a time, so it got us spoiled! Plus, we really loved how they interacted with Scott, always talking to him as if he were fully conscious. They were purposely stimulating his brain, calming his fears/confusion, and treating him with respect with one simple task. Anyway,... it's an adjustment. We feel that someone needs to be with him constantly now. Before, we just wanted to be with him constantly. We'll adjust with time. I am liking the night crew better than the day crew. Almost every person on the ICU staff instilled us with immediate confidence and took great effort in educating us. I know this is day 1 here, but... I was in ICU in day 1, too.... and had a different experience..... We know it is a top notch facility, just adjusting....
Ashley was able to ride with Scott on the helicopter ride here. This is 2 helicopter rides in 1 week, and sadly Scott won't remember either of them. He would have loved the ride! Ashley said the scenery was beautiful! He tolerated the ride much better than we anticipated. We wondered how he would tolerate the noise (we are asked to talk in hushed tones/and they are not able to place ear plugs in ears following a had injury.) and the bouncing/vibration ( rib fractures, etc.) But.. Ashley said his behavior was not any different on the ride. So .... yeah!
He almost looks like himself already (well, himself with a row of staples along the right side of his head)! His jaw swelling finally starting decreasing yesterday, but we awoke this morning to an almost normal looking jaw line. Wow! What an amazing transformation in such a short period of time. The swelling in his right hand is also nearing normal...no more sausage fingers.
Yesterday, he went the full day without pain meds. That is amazing to me, regarding all of his fractures, surgeries, and head injuries. When they took him off of IV pain meds, they put him on prn (as needed) pain meds. My question was, "Prn? He is unconscious, how do yo know when he is in pain?" The answer was "grimacing". But.. I have also seen one nurse, place his fingers in Scott's hand and ask him to squeeze if he was experiencing pain. Then ask him to squeeze hard if the pain is high, light if the pain is low, and medium if the pain is medium. He responded with squeezing medium. He does rub his head a lot, but otherwise, I do not see a lot of non-verbal behaviors that would indicate that he is in a lot of pain. I could just only imagine that he must be...or at a minimum have a horrible headache.
So... today has been all about getting him settled in and new assessments. We do see him moving more and more. His left side moves A LOT! He is able to move is right side, but we do not see him do it very often....only to command typically. He is very consistent at following commands now, except eyes and face. He is opening his eyes more often, but it is still only occasional through the day. And... he doesn't really show any recognition or visual tracking. He has a very vacant stare. his eyes look straight forward. If we stand right in front of him, he shows no recognition that he can see us or knows us. But... this am, Ashley placed her hand in front of his face when his eyes were open, and told Scott that he could hold her hand if he wanted. He reached his left hand directly to her outstretched hand and held it. This evening, she placed her hand in front of his face without verbally cueing him and he still reached for her hand and held it. He is being very tactile right now. He seems to really want to touch things and he is figuring out his environment via touching. His touch is a very light, gentle touch. It's quite sweet!...and very interesting to watch him investigate his surroundings.
One thing here that I think is a good fall risk prevention strategy is that they changed his bed out for a bed that lowers really low, and they have placed mats on either side of his bed. They say to expect that he will become even more active as he awakens more.
Well,... gotta' go do some planning for tomorrow.... "Talk" to ya' then!
We love you all!
Patti
First "matter of business", we are still on hold for visitors. We are hoping that in 2 weeks, we will be able to accept visitors. Just guessing...hoping.... Here's the deal.... head injuries are a difficult thing, as you might imagine. We will need to progressively stimulate Scott's brain, but also need to avoid overstimulating and exhausting him. Especially, during this early phase, rest is so critical to his progress, so visitors are limited. We obviously, don't want to slow his progress in any way, shape or form. In addition, he is not alert enough to interact, recognize people, etc. The real support value for Scott and Ashley is likely going to be a bit down the road. When he is awake, and he is going through his rehab, it will likely buoy him up to feel even a portion of the love and support that has been shown him this week. (We are so very humbled and thankful for the out-pouring of love!) In addition, there will likely be times when Ashley needs a break to go to the grocery store, etc.... It will be important for her to re-fuel herself, so she has the strength, stamina and patience that will be needed to endure this long recovery road ahead and to manage all of the physical, emotional, and behavioral challenges ahead. We know it has to be hard to want to show your support right now while everything is so new and fresh, but his needs will likely be greatest as they progress through the ensuing stages. We hate to ask you to be patient, and we hate to have to be patient, too, but... that is what is best for Scott.
When he is able to accept visitors, we will need to develop a schedule so we don't have too many visitors at once. Again, we are counseled to avoid overstimulating and exhausting him. We look forward to the day, but we know we need to be smart about it so it helps Scott rather than exhausting him. As we are adjusting to a new place and new needs, and are closer to Scott and Ashley's home, friends, and support systems, we may find some needs periodically. For instance, we may want someone to come and sit with him while we go shower periodically. We are grateful to know that we have so much help available to us. As we figure out our needs, we will let you know. Right now, honestly, we are simply just trying to adjust to the new surroundings and methods. Big day today, change-wise. We knew he was given stellar attention and care in Flagstaff, but we are especially appreciative of the level of care and level of competence we experienced there. ICU nurses only attend to 2 patients at a time, so it got us spoiled! Plus, we really loved how they interacted with Scott, always talking to him as if he were fully conscious. They were purposely stimulating his brain, calming his fears/confusion, and treating him with respect with one simple task. Anyway,... it's an adjustment. We feel that someone needs to be with him constantly now. Before, we just wanted to be with him constantly. We'll adjust with time. I am liking the night crew better than the day crew. Almost every person on the ICU staff instilled us with immediate confidence and took great effort in educating us. I know this is day 1 here, but... I was in ICU in day 1, too.... and had a different experience..... We know it is a top notch facility, just adjusting....
Ashley was able to ride with Scott on the helicopter ride here. This is 2 helicopter rides in 1 week, and sadly Scott won't remember either of them. He would have loved the ride! Ashley said the scenery was beautiful! He tolerated the ride much better than we anticipated. We wondered how he would tolerate the noise (we are asked to talk in hushed tones/and they are not able to place ear plugs in ears following a had injury.) and the bouncing/vibration ( rib fractures, etc.) But.. Ashley said his behavior was not any different on the ride. So .... yeah!
He almost looks like himself already (well, himself with a row of staples along the right side of his head)! His jaw swelling finally starting decreasing yesterday, but we awoke this morning to an almost normal looking jaw line. Wow! What an amazing transformation in such a short period of time. The swelling in his right hand is also nearing normal...no more sausage fingers.
Yesterday, he went the full day without pain meds. That is amazing to me, regarding all of his fractures, surgeries, and head injuries. When they took him off of IV pain meds, they put him on prn (as needed) pain meds. My question was, "Prn? He is unconscious, how do yo know when he is in pain?" The answer was "grimacing". But.. I have also seen one nurse, place his fingers in Scott's hand and ask him to squeeze if he was experiencing pain. Then ask him to squeeze hard if the pain is high, light if the pain is low, and medium if the pain is medium. He responded with squeezing medium. He does rub his head a lot, but otherwise, I do not see a lot of non-verbal behaviors that would indicate that he is in a lot of pain. I could just only imagine that he must be...or at a minimum have a horrible headache.
So... today has been all about getting him settled in and new assessments. We do see him moving more and more. His left side moves A LOT! He is able to move is right side, but we do not see him do it very often....only to command typically. He is very consistent at following commands now, except eyes and face. He is opening his eyes more often, but it is still only occasional through the day. And... he doesn't really show any recognition or visual tracking. He has a very vacant stare. his eyes look straight forward. If we stand right in front of him, he shows no recognition that he can see us or knows us. But... this am, Ashley placed her hand in front of his face when his eyes were open, and told Scott that he could hold her hand if he wanted. He reached his left hand directly to her outstretched hand and held it. This evening, she placed her hand in front of his face without verbally cueing him and he still reached for her hand and held it. He is being very tactile right now. He seems to really want to touch things and he is figuring out his environment via touching. His touch is a very light, gentle touch. It's quite sweet!...and very interesting to watch him investigate his surroundings.
One thing here that I think is a good fall risk prevention strategy is that they changed his bed out for a bed that lowers really low, and they have placed mats on either side of his bed. They say to expect that he will become even more active as he awakens more.
Well,... gotta' go do some planning for tomorrow.... "Talk" to ya' then!
We love you all!
Patti
Tuesday, March 20, 2012
Day 7: Afternoon Post, March 20, 2012
WARNING: We have posted some photos of Scott at the end of this post. The nature of the photos are somewhat graphic.
I want to scream "He's awake" to the world. I can't really give that animated and vigorous a response to today's events, but I can say he slightly opened his eyes and is following more complex commands today. Again, another very significant step. We continue to have daily victories in our progress forward! I am more in love with therapists than ever because they got him moving today, which stimulated him to "wake him up" enough that he opened his eyes. It wasn't a vigorous motion, it was much more with his left eye than his right (his right eye has sustained so much damage, it's no surprise.), and there was no real indication of recognition/no facial expression/etc. But... he did open his eyes and that is super awesome!
So... here's how therapy went today. It took 4 of them (PT, OT, PT aide, and RN) to orchestrate the effort of sitting him up in bed, standing up, and transferring to a chair beside the bed. One person was required just for "tubes" management. But... I'm impressed they were able to sit, stand and transfer an unconscious patient at all. New research is showing the benefit (faster and better progress) of getting unconscious patients upright and sitting as early as possible, basic reflexes are stimulated and they can often participate more than you would think. That is definitely what we saw today. He participated much more than I could have imagined. He is able to follow commands consistently and vigorously now with his arms and legs. No response to commands to move the mouth, face, head, etc....anything above the neck. When he was lying in bed, they asked him to uncross his legs, which he promptly did. Then they assisted him in sitting on the side of the bed. They were propping him initially, but then they let go and he was able to hold his trunk up. He could do a little head movement, but his head was mostly slumped forward. He then tried to remove his arm sling by grabbing it and pulling it up and over head. Then they instructed him to push up through his legs, push off with his left arm, stand, pivot, and slowly sit down. He was able to participate and assist with the process. He sat in a special chair for over an hour, then they reversed the process. He participated even more with the return trip to his bed. The exertion aroused him so he opened his L>R eyes during the transfer. They allowed Ashley and I to talk to him. We looked directly at him with eyes open. No nystagmus this time, but no indication of recognition, either. He just stared straight forward. But...did I mention, his eyes were open! So...another victory for today.
He is now sleeping soundly. They wore him out. It was a lot of work for him to sit, to follow commands, and to hold himself up.
He is doing a lot more random little movements: rubbing his forehead, picking at his nose, rubbing his incisions, etc. Today when Ashley held his hand, Scott began twirling her ring around her finger. It was so sweet and tender.
We were able to see his right arm incision today for the first time when they changed the bandage. It is the majority of the length of his forearm,...maybe 7 inches (a guess... Todd, I need your estimating skills!) with staples, but the incision looks great. He has one hellacious road rash on the top side of his right forearm! Yikes, I thought all of the many others looked bad. This one is especially bad.
His lungs are doing great. He is breathing on his own today with the trach collar, without a hitch. And they took his mitt off of his left hand today so he could participate better in his transfers. They left it off, and he has been a good boy. He has not tugged or pulled at any tubes yet, so they are going to try to leave it off. Yeah. He had been shaking his hand trying to rid himself of the mitt.
Sounds like it will be tomorrow instead of today that he transfers to Phoenix. He is medically ready, but his insurance company's offices are on the east coast, so they couldn't get the authorization process completed in time. So.. he is all ready to go except the authorization process, so... tomorrow am presumably. He will be going to Select Medical LTAC at St. Joseph's.
Ashley and I have lifted hearts and spirits today. These have been 2 good days back to back. It gives us hope. It gets hard sitting and waiting for him to show a sign...any sign.... that his brain is beginning to recover. The days get long. The emotions get heavy. Hope seems a distant emotion. And it has only been a week..... Imagine what families must feel who are in this stage for months. Egads, I feel for them! We have had many kind people share examples of others who have pulled out of similar and sometimes worse injuries to return to normal lives. That also gives us hope, but... brain injury is so variable and there are no guarantees, so... we don't really know what his final outcome will be. Today and yesterday have given us hope, though, and the professionals are encouraging with their prognoses. They, too, have been excited and giddy at his progress today and yesterday. We know it will be a long haul and we know there will be some tough times, but.... having hope helps to give us stamina and the ability to persevere. Scott's personality will also help the process and prognosis. He has always been able to see the "lesson" in everything in life, so he has a tendency to embrace hardships and challenges and actually gets excited for the opportunity to grow. This experience will really test him, and we don't know how much of his personality will remain in the beginning and end, but... I have confidence that he will meet the challenge head on. It will be a struggle for him to slow down, for sure. He typically runs hard and fast through his day. He will have the opportunity to grow in a direction that he may never have grown had something not forced him to slow down. It will be awesome to see how this awesome man grows even better! (Okay,... yes, I am biased. He is my son. But... I do feel that he is an exceptional being. It's always good to have mom on your side, I'm thinkin'!)
Oh... today at lunch Ashley said, "Ya' know when you hear people say, "Man, this has been quite a week!" Well,.... we now have a new definition for "quite a week".
We finally pulled the pictures off of my camera. We have included one of him sitting today, and one of him on day 1. Hopefully, no one struggles with seeing the pictures. We weren't quite sure if it was best to add them or not, but we decided that this is his journal, as well as our way to keep in touch with our loved ones throughout this ordeal....so we will add some pictures from time to time. His face looks better than I imagined it would knowing that he took the brunt of the force through his face, that he has multiple facial fractures, etc... I expected him to be very mangled and globally bruised. He really doesn't look bad, in my opinion, for what he has gone through. You can see for yourself.
We love you all!
Patti
I want to scream "He's awake" to the world. I can't really give that animated and vigorous a response to today's events, but I can say he slightly opened his eyes and is following more complex commands today. Again, another very significant step. We continue to have daily victories in our progress forward! I am more in love with therapists than ever because they got him moving today, which stimulated him to "wake him up" enough that he opened his eyes. It wasn't a vigorous motion, it was much more with his left eye than his right (his right eye has sustained so much damage, it's no surprise.), and there was no real indication of recognition/no facial expression/etc. But... he did open his eyes and that is super awesome!
So... here's how therapy went today. It took 4 of them (PT, OT, PT aide, and RN) to orchestrate the effort of sitting him up in bed, standing up, and transferring to a chair beside the bed. One person was required just for "tubes" management. But... I'm impressed they were able to sit, stand and transfer an unconscious patient at all. New research is showing the benefit (faster and better progress) of getting unconscious patients upright and sitting as early as possible, basic reflexes are stimulated and they can often participate more than you would think. That is definitely what we saw today. He participated much more than I could have imagined. He is able to follow commands consistently and vigorously now with his arms and legs. No response to commands to move the mouth, face, head, etc....anything above the neck. When he was lying in bed, they asked him to uncross his legs, which he promptly did. Then they assisted him in sitting on the side of the bed. They were propping him initially, but then they let go and he was able to hold his trunk up. He could do a little head movement, but his head was mostly slumped forward. He then tried to remove his arm sling by grabbing it and pulling it up and over head. Then they instructed him to push up through his legs, push off with his left arm, stand, pivot, and slowly sit down. He was able to participate and assist with the process. He sat in a special chair for over an hour, then they reversed the process. He participated even more with the return trip to his bed. The exertion aroused him so he opened his L>R eyes during the transfer. They allowed Ashley and I to talk to him. We looked directly at him with eyes open. No nystagmus this time, but no indication of recognition, either. He just stared straight forward. But...did I mention, his eyes were open! So...another victory for today.
He is now sleeping soundly. They wore him out. It was a lot of work for him to sit, to follow commands, and to hold himself up.
He is doing a lot more random little movements: rubbing his forehead, picking at his nose, rubbing his incisions, etc. Today when Ashley held his hand, Scott began twirling her ring around her finger. It was so sweet and tender.
We were able to see his right arm incision today for the first time when they changed the bandage. It is the majority of the length of his forearm,...maybe 7 inches (a guess... Todd, I need your estimating skills!) with staples, but the incision looks great. He has one hellacious road rash on the top side of his right forearm! Yikes, I thought all of the many others looked bad. This one is especially bad.
His lungs are doing great. He is breathing on his own today with the trach collar, without a hitch. And they took his mitt off of his left hand today so he could participate better in his transfers. They left it off, and he has been a good boy. He has not tugged or pulled at any tubes yet, so they are going to try to leave it off. Yeah. He had been shaking his hand trying to rid himself of the mitt.
Sounds like it will be tomorrow instead of today that he transfers to Phoenix. He is medically ready, but his insurance company's offices are on the east coast, so they couldn't get the authorization process completed in time. So.. he is all ready to go except the authorization process, so... tomorrow am presumably. He will be going to Select Medical LTAC at St. Joseph's.
Ashley and I have lifted hearts and spirits today. These have been 2 good days back to back. It gives us hope. It gets hard sitting and waiting for him to show a sign...any sign.... that his brain is beginning to recover. The days get long. The emotions get heavy. Hope seems a distant emotion. And it has only been a week..... Imagine what families must feel who are in this stage for months. Egads, I feel for them! We have had many kind people share examples of others who have pulled out of similar and sometimes worse injuries to return to normal lives. That also gives us hope, but... brain injury is so variable and there are no guarantees, so... we don't really know what his final outcome will be. Today and yesterday have given us hope, though, and the professionals are encouraging with their prognoses. They, too, have been excited and giddy at his progress today and yesterday. We know it will be a long haul and we know there will be some tough times, but.... having hope helps to give us stamina and the ability to persevere. Scott's personality will also help the process and prognosis. He has always been able to see the "lesson" in everything in life, so he has a tendency to embrace hardships and challenges and actually gets excited for the opportunity to grow. This experience will really test him, and we don't know how much of his personality will remain in the beginning and end, but... I have confidence that he will meet the challenge head on. It will be a struggle for him to slow down, for sure. He typically runs hard and fast through his day. He will have the opportunity to grow in a direction that he may never have grown had something not forced him to slow down. It will be awesome to see how this awesome man grows even better! (Okay,... yes, I am biased. He is my son. But... I do feel that he is an exceptional being. It's always good to have mom on your side, I'm thinkin'!)
Oh... today at lunch Ashley said, "Ya' know when you hear people say, "Man, this has been quite a week!" Well,.... we now have a new definition for "quite a week".
We finally pulled the pictures off of my camera. We have included one of him sitting today, and one of him on day 1. Hopefully, no one struggles with seeing the pictures. We weren't quite sure if it was best to add them or not, but we decided that this is his journal, as well as our way to keep in touch with our loved ones throughout this ordeal....so we will add some pictures from time to time. His face looks better than I imagined it would knowing that he took the brunt of the force through his face, that he has multiple facial fractures, etc... I expected him to be very mangled and globally bruised. He really doesn't look bad, in my opinion, for what he has gone through. You can see for yourself.
We love you all!
Patti
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| First photo taken the evening of the accident. March 13, 2012 |
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| Day 2. March 14, 2012 |
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| The snow storm on Sunday March 18, 2012 (there was no snow when we first got here) |
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| One Week after the accident. March 20, 2012 |
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| Sitting in a chair for the first time following the accident. March 20, 2012 First day of slightly opening his eyes as well as having his trach collar on. Holding hands with Ashley. |
Day 7: First post, March 20, 2012
Sorry no post last night.... What a whirlwind. But the bottom line is that they are making every effort to transfer Scott today to an LTAC on Phoenix for aggressive ventilation weaning and consciousness raising. We had a lot of logistics to rush and organize last night, so... this is my first opportunity. I will be impressed if I am able to complete this before the next step of the process.
So... Big day yesterday .... Look at all of the progress he made the day after all of the fasts and elevated prayer efforts!!! He followed commands to move extremities consistently and convincingly with all attempts through the rest of the day. So huge! And... what a great way to boost our energy and spirits. It was definitely getting wearing sitting and wishing and seeing no change on the consciousness aspect. He finally cleared his bowels, which also was a big deal. They removed the chest tube, sedation, and IV pain meds. He has been very very squirmy as a result. We hate to see him in uncomfortable, but we are glad that his consciousness is raised. They are giving him Percocet ground up and placed in his feeding tube, and they gave him some small injections of Morphine yesterday (yikes!) to manage the pain, so they wouldn't have to turn the sedation back on. The effort worked. They were finally able to get him off of the sedation so he could respond to commands. Did I mention how excited we are by this progress?!? We have been counseled that he will be up and down for awhile, likely not consistent, and there is still no telling for sure when he will actually open his eyes and wake up, but... it is still a positive sign and the first step that we have been waiting for. ...Oh... nurse just re-assessed him. Still very consistent and convincing with following commands: able to bring his hand to his nose, move all extremities, able to distinguish right and left without verbal cueing, et. Still not able to open his eyes, follow her finger when his eyes are manually opened, or open his mouth/stick out his tongue. It sure was good to actually see his eyes when she manually opened them. He was not able to focus and there was definite spontaneous Nystagmus bilaterally, but it was nice to see his eyes!
Oh,... I have failed to mention that they have been giving him anti-seizure medication preventatively, since seizures are so common after head injuries. We will also need to be aware of the potential throughout his rehab. He has not shown any seizure activity to date, though, fortunately!
They now are saying that he does not have a respiratory infection. They said that the swab was determined inconclusive by Q score, which basically just means they think they had a contaminated sample. They think it may be due to aspiration artifact. The WBC (white blood cell count) was only a little elevated, etc... so now they are dismissing it. His temperature has remained normal since, so... it looks like his fever was neuro fever after all. The brain is responsible for thermoregulatory control, so fevers are not uncommon with head injury.
They just now put the trach collar on today, which basically is a small oxygen mask placed over the opening in the trach tube through which is humidified oxygen. No pressure. He is breathing on his own and keeping his lungs inflated on his own. HIs measurements are staying normal (SpO2 99 on his own)! His lungs are doing very well. I mentioned that they took the chest tube out yesterday. Yeah! Fewer tubes!
Jaw swelling still remains quite large. I keep expecting that it will decrease as quickly as the rest of his swelling sites have, but.. I guess they all progress at their own rates. Something we haven't thought about until yesterday was his teeth. As much force as he took on his face, and with a broken jaw, we wonder what condition his teeth are in. The nurses aren't able to give us much info on that because there is so much swelling in the area, it's hard to tell. So... it might be interesting to see what they look like when the swelling goes down.
My wonderful sister-in-law is nurse extraordinaire, which is a nice resource. She recommended that we begin talking to Scott telling him what was going on, where he is at, why his left hand has a mitt on it, why he has tubes, it's okay to go to the bathroom, etc. She said that often times unconscious patients feel that they are captives and that the nurses are "the enemy" and... wonder why their family is there, but still "allowing" these captors to torture them. She felt that some of his restlessness may be due to this feeling. So we have begun doing this when he gets extra restless, and it has made a difference. He calms down each and every time. So.. Thanks, Robin! We noticed the nurses doing it, but we didn't know why and what kind of talk we should have with him. We had just been talking about the weather, etc. Knowledge is power!
Last night, Ashley found a 40 page educational brochure on the Barrows website. We will link it later. It also had many recommended reading options that we will pursue. So... I guess I'm going to be dusting off my neuro PT hat and using it again. That hat has been in the closet since PT school 30 years ago. Yikes! This will be a good test for my aging brain.
If he is still here today, PT will try to sit him up, which as a non-neuro PT seems crazy to me that they would attempt to sit an unconscious patient, but... sounds like there are current studies showing the benefit of sitting unconscious patients and stimulating trunk reflexes. I can also tell you that Ashley and I were getting a little "beep" crazy. There are so many "attachments" (tubes, IVs, monitors, etc.) to Scott and they all have alarms. They are quite sensitive, which is both good and bad. The beeping wasn't completely constant, but it sure seemed like it.
Also, he is doing well enough to travel by land ambulance now, so that is how he will travel to Phoenix. So... we will see if we go to Phoenix today or tomorrow. Rounds are over about now, so we expect people to start filing in and progressing toward that direction.
We love you all!
Patti
So... Big day yesterday .... Look at all of the progress he made the day after all of the fasts and elevated prayer efforts!!! He followed commands to move extremities consistently and convincingly with all attempts through the rest of the day. So huge! And... what a great way to boost our energy and spirits. It was definitely getting wearing sitting and wishing and seeing no change on the consciousness aspect. He finally cleared his bowels, which also was a big deal. They removed the chest tube, sedation, and IV pain meds. He has been very very squirmy as a result. We hate to see him in uncomfortable, but we are glad that his consciousness is raised. They are giving him Percocet ground up and placed in his feeding tube, and they gave him some small injections of Morphine yesterday (yikes!) to manage the pain, so they wouldn't have to turn the sedation back on. The effort worked. They were finally able to get him off of the sedation so he could respond to commands. Did I mention how excited we are by this progress?!? We have been counseled that he will be up and down for awhile, likely not consistent, and there is still no telling for sure when he will actually open his eyes and wake up, but... it is still a positive sign and the first step that we have been waiting for. ...Oh... nurse just re-assessed him. Still very consistent and convincing with following commands: able to bring his hand to his nose, move all extremities, able to distinguish right and left without verbal cueing, et. Still not able to open his eyes, follow her finger when his eyes are manually opened, or open his mouth/stick out his tongue. It sure was good to actually see his eyes when she manually opened them. He was not able to focus and there was definite spontaneous Nystagmus bilaterally, but it was nice to see his eyes!
Oh,... I have failed to mention that they have been giving him anti-seizure medication preventatively, since seizures are so common after head injuries. We will also need to be aware of the potential throughout his rehab. He has not shown any seizure activity to date, though, fortunately!
They now are saying that he does not have a respiratory infection. They said that the swab was determined inconclusive by Q score, which basically just means they think they had a contaminated sample. They think it may be due to aspiration artifact. The WBC (white blood cell count) was only a little elevated, etc... so now they are dismissing it. His temperature has remained normal since, so... it looks like his fever was neuro fever after all. The brain is responsible for thermoregulatory control, so fevers are not uncommon with head injury.
They just now put the trach collar on today, which basically is a small oxygen mask placed over the opening in the trach tube through which is humidified oxygen. No pressure. He is breathing on his own and keeping his lungs inflated on his own. HIs measurements are staying normal (SpO2 99 on his own)! His lungs are doing very well. I mentioned that they took the chest tube out yesterday. Yeah! Fewer tubes!
Jaw swelling still remains quite large. I keep expecting that it will decrease as quickly as the rest of his swelling sites have, but.. I guess they all progress at their own rates. Something we haven't thought about until yesterday was his teeth. As much force as he took on his face, and with a broken jaw, we wonder what condition his teeth are in. The nurses aren't able to give us much info on that because there is so much swelling in the area, it's hard to tell. So... it might be interesting to see what they look like when the swelling goes down.
My wonderful sister-in-law is nurse extraordinaire, which is a nice resource. She recommended that we begin talking to Scott telling him what was going on, where he is at, why his left hand has a mitt on it, why he has tubes, it's okay to go to the bathroom, etc. She said that often times unconscious patients feel that they are captives and that the nurses are "the enemy" and... wonder why their family is there, but still "allowing" these captors to torture them. She felt that some of his restlessness may be due to this feeling. So we have begun doing this when he gets extra restless, and it has made a difference. He calms down each and every time. So.. Thanks, Robin! We noticed the nurses doing it, but we didn't know why and what kind of talk we should have with him. We had just been talking about the weather, etc. Knowledge is power!
Last night, Ashley found a 40 page educational brochure on the Barrows website. We will link it later. It also had many recommended reading options that we will pursue. So... I guess I'm going to be dusting off my neuro PT hat and using it again. That hat has been in the closet since PT school 30 years ago. Yikes! This will be a good test for my aging brain.
If he is still here today, PT will try to sit him up, which as a non-neuro PT seems crazy to me that they would attempt to sit an unconscious patient, but... sounds like there are current studies showing the benefit of sitting unconscious patients and stimulating trunk reflexes. I can also tell you that Ashley and I were getting a little "beep" crazy. There are so many "attachments" (tubes, IVs, monitors, etc.) to Scott and they all have alarms. They are quite sensitive, which is both good and bad. The beeping wasn't completely constant, but it sure seemed like it.
Also, he is doing well enough to travel by land ambulance now, so that is how he will travel to Phoenix. So... we will see if we go to Phoenix today or tomorrow. Rounds are over about now, so we expect people to start filing in and progressing toward that direction.
We love you all!
Patti
Monday, March 19, 2012
Day 6: Good news!!!!
He convincingly followed commands!!! He wouldn't open his eyes or his mouth, but he was able to move all 4 extremities briskly, immediately after the command, and in succession 6 times. So... he can at least hear us! So... he isn't fully awake yet, and no guarantees how long that will be, but he is moving in the right direction! This is our first brain injury (DAI) good news, soooo Yeah! Day 6, so before 1 week!
LOTSA' big smiles, happy hearts, and sighs of relief in ICU north right now!...and an immediate prayer of thanks!
They fully removed the sedative today for the first time, he became very very very restless, but they kept him safe and let him squirm rather than putting him back on the sedative. They have been giving him Percocet and Morphine today for the pain, so I wondered if that would slow him from waking up. And.. he hasn't woken up completely, but.... it is great progress toward that goal/a first step....the first step we have been waiting for!
The prayers are working! Thank you Thank you Thank you! We're still not completely out of the woods yet, so keep them up, but your voices have been heard! We are seeing the results and our Heavenly Father has let us know that he is with Scott and us.
I will post the daily victories later...he has made progress in a number of areas today! But... I had to get this out as soon as I could. Happy day!
We love you all!
Patti
LOTSA' big smiles, happy hearts, and sighs of relief in ICU north right now!...and an immediate prayer of thanks!
They fully removed the sedative today for the first time, he became very very very restless, but they kept him safe and let him squirm rather than putting him back on the sedative. They have been giving him Percocet and Morphine today for the pain, so I wondered if that would slow him from waking up. And.. he hasn't woken up completely, but.... it is great progress toward that goal/a first step....the first step we have been waiting for!
The prayers are working! Thank you Thank you Thank you! We're still not completely out of the woods yet, so keep them up, but your voices have been heard! We are seeing the results and our Heavenly Father has let us know that he is with Scott and us.
I will post the daily victories later...he has made progress in a number of areas today! But... I had to get this out as soon as I could. Happy day!
We love you all!
Patti
Day 6: Spiritual Update Monday 19th 2012
Hello again everyone it's Ashley.
Patti has been doing such a wonderful job at remembering and relaying the medical side of this journey. I wanted to relay some of the spiritual side of what I have been feeling. We have had so many people from different locations and religions offer prayers on our behalf. I know that we are all God's children and that he loves us. We are so thankful for every prayer that has been said on our behalf.
I want to share some of the tender mercies I have noticed both leading up to the accident as well as after it. Some of you may or may not know that Scott and I are very active in our religion. We belong to the church of Jesus Christ of Latter Day Saints. We believe that God loves us and is aware of us. Scott and I have daily prayers together, study the Bible and the Book of Mormon together. We strive to make Christ the center of our lives.
A few weeks ago we had a church meeting discussing the importance of daily study of the Book of Mormon. We recently finished the New Testament and decided to start the Book of Mormon again. We decided that this time we would read the chapters on our own and then discuss what we had studied when we had dinner together at night. We enjoyed these conversations together and learned new insights to current questions and struggles we have had. In the past we have tried to memorize specific scriptures that stuck out to us. The night before Scott left for his 3rd week in Cottonwood (he would spend the week there and then come home on the weekends) we swapped favorite scripture quotes.
The scripture that I quoted was Proverbs 3:5-6.
5. Trust in the Lord with all thine heart; and lean not unto thine own understanding.
Also in my scripture reading lately I have found a constant theme that the servants of God are not spared difficult trials or heart ache. Christ himself suffered all and he was perfect. It hit me... what makes us think we are any better?
1 Nephi 19:9 And the world, because of their iniquity, shall judge him to be a thing of naught; wherefore they scourge him, and he suffereth it; and they smite him, and he suffereth it. Yea, they spit upon him, and he suffereth it, because of his loving kindness and his long-suffering towards the children of men.
So the day of the accident there were a few huge blessings...
#1. I had a talk with one of my best friends here in AZ (Jenn) about the scripture study Scott and I have been doing. We were discussing how hard trials are and how it isn't our place to ask God why. This conversation echoed in my head when I received the call about Scott's accident. All of the scriptures that we had been memorizing filled my mind.
#2. I wasn't alone when I found out the news. I had a busy day planned out but I changed my plans on a split second decision because I needed to return some books to the library. Jenn said she would return the books for me but I decided to join her and her kids for about an hour at the library. We were just about to leave our neighborhood when the phone call came in. She was able to help me get the things I needed from my house as well as drive me 2.5 hours to the hospital. Her husband also drove one of their cars up so I would have a vehicle available to me. They stayed with me until Patti was able to arrive. (Thank you Larson Family)
#3. Moments after I got the phone call about the accident my mom called me out of the blue. I had literally just found out about the accident no more than 3 minutes previous. My mom was at work and just wanted to call me for a minute. I am so thankful she did. I needed to hear my mom's voice she was then able to contact the rest of my family to let them know.
#4. Scott had on his helmet and his road ID. I am sure that his helmet saved his life. Because he had his road ID I was able to be notified of what had happend. Thankfully he wasn't in the hospital as a John Doe with out any family to contact.
#5. Scott was able to receive a priesthood blessing. Because of quick acting on Jenn's part many individual in our church were notified of what was happening. Phone calls were made and we were able to arrange a member of the local Flagstaff bishopric to be around to help Jenn's husband (Nate) give Scott a blessing of healing after he came out of surgery. I was also able to have a blessing of comfort given to me by some of Scott's friends and rotation buddies who helped search for Scott's keys. They also drove an hour out of the way and gave up time with family to bring me comfort. (Thank you Nate, Andy, and Travis)
#6. Most of Scott's belongings were found. In order to correctly name and identify Scott they needed a photo ID. Since I didn't have his wallet I couldn't do so. We still didn't know where many of his things had gone because the police hadn't contacted me yet. Once they did contact me they informed me that his wallet hadn't been found. We were almost going to start the process of canceling all his cards when we found the wallet with some of his other belongings at the house in Cottonwood where he was staying.
#7. Also in his wallet right on top of all his cards was one of the past scriptures we memorized as a couple. It was printed on computer paper and slightly worn but this is what it said.
Words of Mormon 1:7 And I do this for a wise purpose; for thus it whispereth me, according to the workings of the Spirit of the Lord which is in me. And now, I do not know all things; but the Lord knoweth all things which are to come; wherefore, he worketh in me to do according to his will.
#8. The response teams and Doctors were able to react quickly. From all the reports I have heard it sounds like everything happend very quickly and he was able to be placed in the right hands to get him good care.
#9. I believe that one of the ways God speaks to us today is through scripture. Scott and I have such a close relationship, we are very best friends. It just rips my heart out to sit by his side and talk to him without being able to hear his witty jokes or see his big smile. I decided the best way to cope with these events was to write letters to Scott. As I was writing down how thankful I was that we had shared scriptures before he left I went to type out the reference to that scripture I had quoted. I could remember the scripture but not remember where it was found. Instead of Proverbs 3:5-6 I wrote out Psalms 3: 5-6
I wanted to make sure I had the right scripture so I checked it. I soon found out that my mistake of writing Psalms instead of Proverbs was no mistake.
Psalms 3: 5
I laid me down and slept; I awaked; for the Lord sustained me.
To me this is a direct answer to my prayers. Out of all the passages of scripture to find this one is so directly related to our situation. I can't just pass it over as a fluke. I was so thankful that Lord is aware of Scott and that he will sustain him throughout this long journey ahead.
#10. I was shown Barrows and St. Josephs by Scott himself. The next step after Scott is stable is hopefully transfer. There are multiple facilities to choose from (Scott's dad and step-mom have been checking them out) I can't remember exactly but I think his last rotation was at St.Josephs Hospital for internal med. I have never found the need or been asked by Scott to come see the place he rotates at. One Sunday he asked if I wanted to come with him down to St.Josephs while he picked up some paperwork. I didn't go in with him but we did drive around the campus and he did point out Barrows Nuro Center to me. He told me how it's one of the best in the world. I continue to hear wonderful reports about St.Joe's and Barrows and I can't forget that Scott and I shared that moment together. We are praying that things work out for us to make it down there. It's hard to say when though.
#11. Friends that know what we need. Some truly wonderful friends put together a HUGE box of food, water, toiletries, and fuzzy blankets. They brought healthy options as well as some sweets too. So many of these things have come in handy and it has made life a easier. Jenn also went in and did my dishes and put a few things away for me at my house. Others have offered to take care of our house, water our plants, bring meals up, and oh so many other thoughtful things. (Thank you to the Winter, Larson, Robertson, Hunter, and Doctor families for sending these useful things our way.)
#12. Spiritual Sunday messages. Since I wasn't able to attend church yesterday I wanted to fill the room with uplifting music as well as listen to talks and messages from our church leaders. As I was getting on to the web page it brought up what they call a Mormon Message. It was entitled: God Will Lift Us Up. It was based on a talk called Waiting upon the Lord: Thy Will Be Done.
The video touched my heart. I loved some of the quotes that were given in the talk and wanted to read the whole article. As I read it my heart was calmed and the tears fell.
Here are a few of my favorite quotes from it if you don't have time to watch the video or read the talk.
Patti has been doing such a wonderful job at remembering and relaying the medical side of this journey. I wanted to relay some of the spiritual side of what I have been feeling. We have had so many people from different locations and religions offer prayers on our behalf. I know that we are all God's children and that he loves us. We are so thankful for every prayer that has been said on our behalf.
I want to share some of the tender mercies I have noticed both leading up to the accident as well as after it. Some of you may or may not know that Scott and I are very active in our religion. We belong to the church of Jesus Christ of Latter Day Saints. We believe that God loves us and is aware of us. Scott and I have daily prayers together, study the Bible and the Book of Mormon together. We strive to make Christ the center of our lives.
A few weeks ago we had a church meeting discussing the importance of daily study of the Book of Mormon. We recently finished the New Testament and decided to start the Book of Mormon again. We decided that this time we would read the chapters on our own and then discuss what we had studied when we had dinner together at night. We enjoyed these conversations together and learned new insights to current questions and struggles we have had. In the past we have tried to memorize specific scriptures that stuck out to us. The night before Scott left for his 3rd week in Cottonwood (he would spend the week there and then come home on the weekends) we swapped favorite scripture quotes.
The scripture that I quoted was Proverbs 3:5-6.
5. Trust in the Lord with all thine heart; and lean not unto thine own understanding.
6. In all thy ways acknowledge him, and he shall direct thy paths.
When my sweet cousin lost her 7 year old little girl this scripture really stood out to me. I have loved it ever since. (Love you Mandy)Also in my scripture reading lately I have found a constant theme that the servants of God are not spared difficult trials or heart ache. Christ himself suffered all and he was perfect. It hit me... what makes us think we are any better?
1 Nephi 19:9 And the world, because of their iniquity, shall judge him to be a thing of naught; wherefore they scourge him, and he suffereth it; and they smite him, and he suffereth it. Yea, they spit upon him, and he suffereth it, because of his loving kindness and his long-suffering towards the children of men.
So the day of the accident there were a few huge blessings...
#1. I had a talk with one of my best friends here in AZ (Jenn) about the scripture study Scott and I have been doing. We were discussing how hard trials are and how it isn't our place to ask God why. This conversation echoed in my head when I received the call about Scott's accident. All of the scriptures that we had been memorizing filled my mind.
#2. I wasn't alone when I found out the news. I had a busy day planned out but I changed my plans on a split second decision because I needed to return some books to the library. Jenn said she would return the books for me but I decided to join her and her kids for about an hour at the library. We were just about to leave our neighborhood when the phone call came in. She was able to help me get the things I needed from my house as well as drive me 2.5 hours to the hospital. Her husband also drove one of their cars up so I would have a vehicle available to me. They stayed with me until Patti was able to arrive. (Thank you Larson Family)
#3. Moments after I got the phone call about the accident my mom called me out of the blue. I had literally just found out about the accident no more than 3 minutes previous. My mom was at work and just wanted to call me for a minute. I am so thankful she did. I needed to hear my mom's voice she was then able to contact the rest of my family to let them know.
#4. Scott had on his helmet and his road ID. I am sure that his helmet saved his life. Because he had his road ID I was able to be notified of what had happend. Thankfully he wasn't in the hospital as a John Doe with out any family to contact.
#5. Scott was able to receive a priesthood blessing. Because of quick acting on Jenn's part many individual in our church were notified of what was happening. Phone calls were made and we were able to arrange a member of the local Flagstaff bishopric to be around to help Jenn's husband (Nate) give Scott a blessing of healing after he came out of surgery. I was also able to have a blessing of comfort given to me by some of Scott's friends and rotation buddies who helped search for Scott's keys. They also drove an hour out of the way and gave up time with family to bring me comfort. (Thank you Nate, Andy, and Travis)
#6. Most of Scott's belongings were found. In order to correctly name and identify Scott they needed a photo ID. Since I didn't have his wallet I couldn't do so. We still didn't know where many of his things had gone because the police hadn't contacted me yet. Once they did contact me they informed me that his wallet hadn't been found. We were almost going to start the process of canceling all his cards when we found the wallet with some of his other belongings at the house in Cottonwood where he was staying.
#7. Also in his wallet right on top of all his cards was one of the past scriptures we memorized as a couple. It was printed on computer paper and slightly worn but this is what it said.
Words of Mormon 1:7 And I do this for a wise purpose; for thus it whispereth me, according to the workings of the Spirit of the Lord which is in me. And now, I do not know all things; but the Lord knoweth all things which are to come; wherefore, he worketh in me to do according to his will.
#8. The response teams and Doctors were able to react quickly. From all the reports I have heard it sounds like everything happend very quickly and he was able to be placed in the right hands to get him good care.
#9. I believe that one of the ways God speaks to us today is through scripture. Scott and I have such a close relationship, we are very best friends. It just rips my heart out to sit by his side and talk to him without being able to hear his witty jokes or see his big smile. I decided the best way to cope with these events was to write letters to Scott. As I was writing down how thankful I was that we had shared scriptures before he left I went to type out the reference to that scripture I had quoted. I could remember the scripture but not remember where it was found. Instead of Proverbs 3:5-6 I wrote out Psalms 3: 5-6
I wanted to make sure I had the right scripture so I checked it. I soon found out that my mistake of writing Psalms instead of Proverbs was no mistake.
Psalms 3: 5
I laid me down and slept; I awaked; for the Lord sustained me.
To me this is a direct answer to my prayers. Out of all the passages of scripture to find this one is so directly related to our situation. I can't just pass it over as a fluke. I was so thankful that Lord is aware of Scott and that he will sustain him throughout this long journey ahead.
#10. I was shown Barrows and St. Josephs by Scott himself. The next step after Scott is stable is hopefully transfer. There are multiple facilities to choose from (Scott's dad and step-mom have been checking them out) I can't remember exactly but I think his last rotation was at St.Josephs Hospital for internal med. I have never found the need or been asked by Scott to come see the place he rotates at. One Sunday he asked if I wanted to come with him down to St.Josephs while he picked up some paperwork. I didn't go in with him but we did drive around the campus and he did point out Barrows Nuro Center to me. He told me how it's one of the best in the world. I continue to hear wonderful reports about St.Joe's and Barrows and I can't forget that Scott and I shared that moment together. We are praying that things work out for us to make it down there. It's hard to say when though.
#11. Friends that know what we need. Some truly wonderful friends put together a HUGE box of food, water, toiletries, and fuzzy blankets. They brought healthy options as well as some sweets too. So many of these things have come in handy and it has made life a easier. Jenn also went in and did my dishes and put a few things away for me at my house. Others have offered to take care of our house, water our plants, bring meals up, and oh so many other thoughtful things. (Thank you to the Winter, Larson, Robertson, Hunter, and Doctor families for sending these useful things our way.)
#12. Spiritual Sunday messages. Since I wasn't able to attend church yesterday I wanted to fill the room with uplifting music as well as listen to talks and messages from our church leaders. As I was getting on to the web page it brought up what they call a Mormon Message. It was entitled: God Will Lift Us Up. It was based on a talk called Waiting upon the Lord: Thy Will Be Done.
The video touched my heart. I loved some of the quotes that were given in the talk and wanted to read the whole article. As I read it my heart was calmed and the tears fell.
Here are a few of my favorite quotes from it if you don't have time to watch the video or read the talk.
"I have often pondered, Why is it that the Son of God and His holy prophets and all the faithful Saints have trials and tribulations, even when they are trying to do Heavenly Father’s will? Why is it so hard, especially for them?
As we ask these questions, we realize that the purpose of our life on earth is to grow, develop, and be strengthened through our own experiences. How do we do this? The scriptures give us an answer in one simple phrase: we “wait upon the Lord.” Tests and trials are given to all of us. These mortal challenges allow us and our Heavenly Father to see whether we will exercise our agency to follow His Son. He already knows, and we have the opportunity to learn, that no matter how difficult our circumstances, “all these things shall [be for our] experience, and … [our] good.”
Does this mean we will always understand our challenges? Won’t all of us, sometime, have reason to ask, “O God, where art thou?” Yes! When a spouse dies, a companion will wonder. When financial hardship befalls a family, a father will ask. When children wander from the path, a mother and father will cry out in sorrow. Yes, “weeping may endure for a night, but joy cometh in the morning.” Then, in the dawn of our increased faith and understanding, we arise and choose to wait upon the Lord, saying, “Thy will be done.”
What, then, does it mean to wait upon the Lord? In the scriptures, the word wait means to hope, to anticipate, and to trust. To hope and trust in the Lord requires faith, patience, humility, meekness, long-suffering, keeping the commandments, and enduring to the end."
I just wanted a chance to let you know theses things that have been taking place because of your prayers and love. This road is going to be a long one and it is so nice to know that we don't have to travel it alone. We love you all and are so thankful for the support you have shown us and continue to show us. I know I will try my best to continue to have faith that God will do what he sees fit. I am still praying for a miracle to happen.
Love you all,
Ashley
Day 6: Morning Update March 19, 2012
Day 6.... Seems so surreal!
Bad news ... he has an infection. The labs, sputum tests, and gram stain all came back indicative of infection. His white blood cell count is up. His temperature is hanging around 100. Since the sputum sample came back positive, so it is in the respiratory tract,... possibly pneumonia.... but they are still awaiting his daily lung x-ray report. He has been on Clindamyacin for his entire stay here. Based on the gram stain results (Rod negative), they know the category of the germ he has. It will take 2 days to actually culture to know the exact germ. Clindamyacin is effective for the rod negative category of germs, so the may just increase the Clindamyacin dosage, or they may add another antibiotic to it. They are awaiting Pharmacy recommendation.
His systolic blood pressure went up to 177, so they gave him blood pressure medication last night.
They took out his arterial line that measures his blood pressure. It just isn't staying as much as he moves with that arm. So they now have him on a blood pressure cuff.
Pulse rate is staying between 90 and 106, which is super high for Scott, who is typically around 60, but not unexpected with the infection.
They also took the wrist strap off his left arm and put a mitt on, so he can move more freely, and possibly could knock his tubing off, but can't grab at it.
His blood sugar remains normal.
They do still plan to transition him to a trach collar today despite the respiratory infection. They don't want to keep him on the ventilator too long and he is able to breathe on his own. So... they will remove the tubing that Scott keeps pulling at and replace it with the collar. The collar will basically assure an adequate oxygen concentration on the air he breathes....kinda' like having an oxygen mask on... it mists the oxygen in the area, then he actively breathes it in on his own.
They took the Foley catheter out and replaced it with a condom catheter...less infection risk. His urine samples are normal. No infection there.
Still no bowel movement. Adding Miralax and prune juice to his feeding tube today.
He was very fidgety all night, until his bath, so his sedation was increased to 30.
Respiratory therapy just entered .... crackling in the upper lungs, lower lobes sound fine. Although, they sounds cleared out when they suctioned him, so it was just mucus. The mucus was clear...no ugly colors, which is good. His respiratory rate (how fast he is breathing) is high today (26 beats per minute. 14-22 is normal). So they will hold off on transitioning his to the trach collar, thinking that would be too stressful for his system right now. They will try later today. He assures us it is safe to wean him off the ventilator, even is he does have pneumonia.
And... they are expecting to discharge Scott later this week to a LTAC facility. We have made a final decision. We will transfer him to St. Joseph's in Phoenix. The other LTACs are free-standing buildings. They are new and beautiful and would be more comfortable for the family, But... not so good reviews online and not such good feedback from professionals here. St. Joseph's is attached to a hospital and is in the same medical complex as Barrows. We know he will have ongoing medical needs, not to mention all of the surgical follow-ups. At the other facilities, he would have to be transported by ambulance for every MD consult. At St. Jo's, the MD can just walk over, making consults faster, easier, and cheaper. Also, St. Jo's will allow us to choose his attending physician, so we can choose a Barrows MD, which would allow for better continuity of care. St. Jo's is an old hospital with small rooms, so the environment won't be as uplifting and comfortable, but these are secondary to us. St. Jo's would be best for Scott. Also.... Scott did a clinical rotation there a few months ago, so he will know people there. and... out of all of his clinical rotations, Scott has only taken Ashley to 2 of them to show her (although, I suspect he would have taken her to Cottonwood, if it was closer. He LOVED it there, too. He really was so excited about this last rotation/was loving anesthesiology/was so excited to get up and go each day.): Luke AFB and St Jo's and Barrows. So... we feel that Scott would choose these facilities given the opportunity to make the choice himself.
Sounds like I had a typo in an earlier post. When I was talking to Ryan (Scott's brother) he said I mentioned the left arm not moving much. His left arm moves a ton! His right arm has not moved much. We have seen it move, but not lately. There could be possible nerve damage in that arm, but it is harder to check when he is not conscious, so we will "wait and see" for now.
Okay... that's what happened over night.... I'll "talk" with you later and update you on how the rest of today goes.
We love you all!
Patti
Bad news ... he has an infection. The labs, sputum tests, and gram stain all came back indicative of infection. His white blood cell count is up. His temperature is hanging around 100. Since the sputum sample came back positive, so it is in the respiratory tract,... possibly pneumonia.... but they are still awaiting his daily lung x-ray report. He has been on Clindamyacin for his entire stay here. Based on the gram stain results (Rod negative), they know the category of the germ he has. It will take 2 days to actually culture to know the exact germ. Clindamyacin is effective for the rod negative category of germs, so the may just increase the Clindamyacin dosage, or they may add another antibiotic to it. They are awaiting Pharmacy recommendation.
His systolic blood pressure went up to 177, so they gave him blood pressure medication last night.
They took out his arterial line that measures his blood pressure. It just isn't staying as much as he moves with that arm. So they now have him on a blood pressure cuff.
Pulse rate is staying between 90 and 106, which is super high for Scott, who is typically around 60, but not unexpected with the infection.
They also took the wrist strap off his left arm and put a mitt on, so he can move more freely, and possibly could knock his tubing off, but can't grab at it.
His blood sugar remains normal.
They do still plan to transition him to a trach collar today despite the respiratory infection. They don't want to keep him on the ventilator too long and he is able to breathe on his own. So... they will remove the tubing that Scott keeps pulling at and replace it with the collar. The collar will basically assure an adequate oxygen concentration on the air he breathes....kinda' like having an oxygen mask on... it mists the oxygen in the area, then he actively breathes it in on his own.
They took the Foley catheter out and replaced it with a condom catheter...less infection risk. His urine samples are normal. No infection there.
Still no bowel movement. Adding Miralax and prune juice to his feeding tube today.
He was very fidgety all night, until his bath, so his sedation was increased to 30.
Respiratory therapy just entered .... crackling in the upper lungs, lower lobes sound fine. Although, they sounds cleared out when they suctioned him, so it was just mucus. The mucus was clear...no ugly colors, which is good. His respiratory rate (how fast he is breathing) is high today (26 beats per minute. 14-22 is normal). So they will hold off on transitioning his to the trach collar, thinking that would be too stressful for his system right now. They will try later today. He assures us it is safe to wean him off the ventilator, even is he does have pneumonia.
And... they are expecting to discharge Scott later this week to a LTAC facility. We have made a final decision. We will transfer him to St. Joseph's in Phoenix. The other LTACs are free-standing buildings. They are new and beautiful and would be more comfortable for the family, But... not so good reviews online and not such good feedback from professionals here. St. Joseph's is attached to a hospital and is in the same medical complex as Barrows. We know he will have ongoing medical needs, not to mention all of the surgical follow-ups. At the other facilities, he would have to be transported by ambulance for every MD consult. At St. Jo's, the MD can just walk over, making consults faster, easier, and cheaper. Also, St. Jo's will allow us to choose his attending physician, so we can choose a Barrows MD, which would allow for better continuity of care. St. Jo's is an old hospital with small rooms, so the environment won't be as uplifting and comfortable, but these are secondary to us. St. Jo's would be best for Scott. Also.... Scott did a clinical rotation there a few months ago, so he will know people there. and... out of all of his clinical rotations, Scott has only taken Ashley to 2 of them to show her (although, I suspect he would have taken her to Cottonwood, if it was closer. He LOVED it there, too. He really was so excited about this last rotation/was loving anesthesiology/was so excited to get up and go each day.): Luke AFB and St Jo's and Barrows. So... we feel that Scott would choose these facilities given the opportunity to make the choice himself.
Sounds like I had a typo in an earlier post. When I was talking to Ryan (Scott's brother) he said I mentioned the left arm not moving much. His left arm moves a ton! His right arm has not moved much. We have seen it move, but not lately. There could be possible nerve damage in that arm, but it is harder to check when he is not conscious, so we will "wait and see" for now.
Okay... that's what happened over night.... I'll "talk" with you later and update you on how the rest of today goes.
We love you all!
Patti
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