Day 29
Wed. July 16th
1:00 pm
Chase Update:
Chase gave us more miracles today.
Chase gave us more miracles today.
I put his oxygen monitor on his left hand,which he doesn't move much,because he kept pushing it off his right hand. He lifted both his left and right hand and pushed it off with his right hand. I was so excited. It was so deliberate. He then lifted his left hand and started touching the ventilator tube attached to the trach. I quickly removed his hand and told him if he messed it they would tie his hands down. He didn't do it again.
Phil got a full on smile from him tonight while they were watching a comedy show, and when our favorite nurse stopped by he smiled with his face and eyes, and we got a little movement in his lips.
Phil said goodbye to us this morning. He has to go get some work done. Baker Hughes has been amazing to us, but Phil needs to work and be home for a couple of day for his sanity. Chase cried. He can't make sounds or tears yet, but his face broke my heart. I can't imagine how hard it was for Phil to leave after that. He has been our rock, and Chase's champion. Friday can't come soon enough.
I think Chase understands most of what we say,and his ability to respond is improving. He is off the ventilator again, and back to sitting in the chair. He is still not gaining weight. I worry about that a lot.
For those of you who are interested, Here is the scale they use for cognitive brain function. We need to be exhibiting level 5 functions to get into rehab.
We started at a level 1, that is what people usually think of when they hear the word Coma, and why you may wonder why I want to "wake up Chase" when he is obviously awake. Parts of his brain are still in a coma. We have entered level 4 this week, though we only exhibit some of the items. I am only listing the first 5, though there are 10.
We started at a level 1, that is what people usually think of when they hear the word Coma, and why you may wonder why I want to "wake up Chase" when he is obviously awake. Parts of his brain are still in a coma. We have entered level 4 this week, though we only exhibit some of the items. I am only listing the first 5, though there are 10.
Rancho Los Amigos
Levels of Cognitive Functioning
Levels of Cognitive Functioning
Level I - No Response: Total Assistance
Complete absence of observable change in behavior when presented visual, auditory, tactile, proprioceptive, vestibular or painful stimuli
Level II - Generalized Response: Total Assistance
Demonstrates generalized reflex response to painful stimuli
Responds to repeated auditory stimuli with increased or decreased activity
Responds to external stimuli with physiological changes generalized, gross body movement and/or not purposeful vocalization
Responses noted above may be same regardless of type and location of stimulation
Responses may be significantly delayed
Responds to repeated auditory stimuli with increased or decreased activity
Responds to external stimuli with physiological changes generalized, gross body movement and/or not purposeful vocalization
Responses noted above may be same regardless of type and location of stimulation
Responses may be significantly delayed
Level III - Localized Response: Total Assistance
Demonstrates withdrawal or vocalization to painful stimuli
Turns toward or away from auditory stimuli
Blinks when strong light crosses visual field
Follows moving object passed within visual field
Responds to discomfort by pulling tubes or restraints
Responds inconsistently to simple commands
Responses directly related to type of stimulus
May respond to some persons (especially family and friends) but not to others.
Turns toward or away from auditory stimuli
Blinks when strong light crosses visual field
Follows moving object passed within visual field
Responds to discomfort by pulling tubes or restraints
Responds inconsistently to simple commands
Responses directly related to type of stimulus
May respond to some persons (especially family and friends) but not to others.
Level IV - Confused/Agitated: Maximal Assistance
Alert and in heightened state of activity
Purposeful attempts to remove restraints or tubes or crawl out of bed
May perform motor activities such as sitting, reaching and walking but without any apparent purpose or upon another's request
Very brief and usually non-purposeful moments of sustained alternatives and divided attention
Absent short-term memory
May cry out or scream out of proportion to stimulus even after its removal
May exhibit aggressive or flight behavior
Mood may swing from euphoric to hostile with no apparent relationship to environmental events
Unable to cooperate with treatment efforts
Verbalizations are frequently incoherent and/or inappropriate to activity or environment
Purposeful attempts to remove restraints or tubes or crawl out of bed
May perform motor activities such as sitting, reaching and walking but without any apparent purpose or upon another's request
Very brief and usually non-purposeful moments of sustained alternatives and divided attention
Absent short-term memory
May cry out or scream out of proportion to stimulus even after its removal
May exhibit aggressive or flight behavior
Mood may swing from euphoric to hostile with no apparent relationship to environmental events
Unable to cooperate with treatment efforts
Verbalizations are frequently incoherent and/or inappropriate to activity or environment
Level V - Confused, Inappropriate Non-Agitated: Maximal Assistance
Alert, not agitated but may wander randomly or with a vague intention of going home.
May become agitated in reponse to external stimulation, and/or lack of environmental structure.
Not oriented to person, place or time.
Frequent brief periods, non-purposeful sustained attention
Severely impaired recent memory, with confusion of past and present in reaction to ongoing activity
Absent goal directed, problem solving, self-monitoring behavior
Often demonstrates inappropriate use of objects without external direction
May be able to perform previously learned tasks when structured and cues provided
Unable to learn new information
Able to respond appropriately to simple commands fairly consistently with external structures and cues
Responses to simple commands without external structure are random and non-purposeful in relation to command
Able to converse on a social, automatic level for brief periods of time when provided external structure and cues
Verbalizations about present events become inappropriate and confabulatory when external structure and cues are not provided.
May become agitated in reponse to external stimulation, and/or lack of environmental structure.
Not oriented to person, place or time.
Frequent brief periods, non-purposeful sustained attention
Severely impaired recent memory, with confusion of past and present in reaction to ongoing activity
Absent goal directed, problem solving, self-monitoring behavior
Often demonstrates inappropriate use of objects without external direction
May be able to perform previously learned tasks when structured and cues provided
Unable to learn new information
Able to respond appropriately to simple commands fairly consistently with external structures and cues
Responses to simple commands without external structure are random and non-purposeful in relation to command
Able to converse on a social, automatic level for brief periods of time when provided external structure and cues
Verbalizations about present events become inappropriate and confabulatory when external structure and cues are not provided.
Today we pray Chase continues to improve so we can get into the rehab center As soon as possible. We pray Chase's impatience will inspire him to accomplish much, but that he can be patient with the Lords timeline. Chase is waking up a little more everyday. He is a miracle! We pray for Erica and Justin, we pray they recognize the hand of the Lord in the miracles he is providing for them, and that Justin will continue to defy the odd with the help of The Lord. We of course pray for you. We pray for you to have your own miracles today, and that the Lords hand is evident in your life. May God bless you and keep you until we meet again. We are legion!
Day 30
Thurs. July 17th
11:00 am
Chase Update:
It's looks like it will be an amazing day.
Mom and I slept all night long, and woke up really rested. The hope was that Chase would sleep or be forced to interact with the nurses so they could see how far he's come. Unfortunately he did neither. He was just mad and restless all night long.
After we came back this morning he started pushing the respiratory therapist away from him. He would grab his arm and push it away. It was awesome. I wish I would have thought to record it. I hope his therapist writes it down for the nurse or the doctor. We practically begged him to. Chase won't do anything when the people who matter are in the room.
He doesn't try to talk with us. This is my biggest worry. I pray he will be able to soon. It's heartbreaking to see him so frustrated, and not know if it's pain, boredom, or sadness. We do our best to figure it out, but it's really hard on all of us. The doctor did say he was going to have he speech/swallow therapist start coming in. It's still early, but it good to start.
Chase white blood cell cound is way down, Hurray!
He is up in weight today, Hurray again! He keeps lifting his left arm up above his head. It awesome to see him get stronger and gain more mobility.
He is up in weight today, Hurray again! He keeps lifting his left arm up above his head. It awesome to see him get stronger and gain more mobility.
The Doctor said his pancreas looks good, and his lungs are free from infection. He is still coughing a ton of crud up, which is a good thing.
Chase is getting fitted for a helmet today. He has to be able to protect the big area that is missing skull. In 3-4 months he will come back to the hospital and have a cap or plate put in once the swelling is all gone.
Today my prayers are full of gratitude for Chase's physical health and for the huge improvements in his mental health. I pray for his continued improvement, and ask The Lord to provide a way for Chase to be able to communicate his needs to us. Thank you for remembering us. For supporting, and loving us. It means so much to know we aren't alone. May God bless you and keep you until we meet again. We are Legion!
Day 31
Friday July 18th
9:30 am
Chase Update:
Today is a big day.
Chase slept 75% of the night. It wasn't solid,but that's huge. He interacted with the nurse, and she got to see how he can respond. Then mom and I walked in after a full night sleep, and he ignored the nurse until shift change. She finally got it! She called it playing possum lol!
The new nurse came in and she got him to squeeze her hand, and blink for her. Wahoo!
Chase is getting his helmet today. I want to make jokes about him wearing a helmet, but seeing that he actually has brain damage and is mentally impaired at the moment it kind of ruins every joke or snarky comment. Once he has the helmet he can begin to get mobile. Yea!
He is also getting a Passy-Muir Speaking Valve today or tomorrow. This valve allows air to escape and pass the vocal chords. He has been screaming and crying a lot the last few days so I have mixed feelings about being able to hear those cries.
The new nurse came in and she got him to squeeze her hand, and blink for her. Wahoo!
Chase is getting his helmet today. I want to make jokes about him wearing a helmet, but seeing that he actually has brain damage and is mentally impaired at the moment it kind of ruins every joke or snarky comment. Once he has the helmet he can begin to get mobile. Yea!
He is also getting a Passy-Muir Speaking Valve today or tomorrow. This valve allows air to escape and pass the vocal chords. He has been screaming and crying a lot the last few days so I have mixed feelings about being able to hear those cries.
Part of being in level 4 (see wed post) is that he overreacts to pain or stimulus even after it is removed. So lots of crying, anger, frustration.
Our neurologist gets back today, hurray! Phil gets back today double hurray! My kids get back today triple hurray!
I told Chase I was leaving to get breakfast, and pulled my hand away. He reached up and grabbed my other hand and squeezed it tight. So breakfast waited until he took a nap He is waking up a little more everyday.
They took him down for a CT scan today with no drugs Bwahahahahaha. His nurse says "that was an adventure" It took arm restraints and two nurses holding him down- they were all worn out afterwards.
His chest X-ray today shows no pneumonia, and his lungs are clearing up more and more everyday.
His chest X-ray today shows no pneumonia, and his lungs are clearing up more and more everyday.
They are taking him off one of the antibiotics today. That means we are on an 1 antibiotic, a seizure medication, occasional pain killers for his broken clavicle (collar bone)
And a medication to keep him from throwing up. You would throw up to if you saw what they give him for food. Yick!
And a medication to keep him from throwing up. You would throw up to if you saw what they give him for food. Yick!
Today my prayers are so full of gratitude. The nurses are finally seeing his capabilities. I am so grateful to the lord for helping Chase to progress at such a rapid rate. I am so grateful he is sleeping, and that things are being put into Motion to get him prepared for rehab. I pray that The Lord continues to guide the Nurses and Doctors in their decisions with Chase's rehab and recovery. We continue to pray that we can go straight to rehab if that is The Lord's plan. And for the ability to recognize that sometimes sometimes the Lord's NO's are the beginning to an amazing YES! Please continue to pray for Justin and Erica to have miracles this week. As always we ask these things according to The Lord's will not ours. We pray for you, for your challenges this week, and we ask for you to have the strength to not just get through them, but to excel and become a more amazing version of yourself. May god bless you and keep you until we meet again. We are legion!
10:20 pm
Chase Update:
Chase got to practice sitting up today, it was amazing and heart wrenching at the same time. One therapist held held his back up and another held his head. Chase complained the whole 7 min. He did hold his head up by himself for a few moments though. It was exciting to see progress, but the severity of his brain injury hit home in that moment.
Chase got to practice sitting up today, it was amazing and heart wrenching at the same time. One therapist held held his back up and another held his head. Chase complained the whole 7 min. He did hold his head up by himself for a few moments though. It was exciting to see progress, but the severity of his brain injury hit home in that moment.
His speech valve sounded better in theory. He made complaining sounds like a dying cow for hours. He can't expel the crud from his lungs very well with it on, so it came out after a few hours. The sounds seem to agitate him more, or maybe it was me it was agitating.
Today chase learned how to grab. He grabbed the suctioning tool, he grabbed and threw his pillow, he grabbed at his oxygen shield, he grabbed his sock. He kicked the doctor, he reached for the bed when they put him in the chair. He reached for Brooklyn. It's amazing!
The Doctor said he wanted to try to hold him until rehab, it will happen if it's the lords will. The doctor thinks he is still at a 3, but even the nurses know better now. Hopefully the doctor sees it as well soon.
It seems like he is always doing something new. It's an overwhelming kind of amazing to go from begging for anything to trying to get him to stop for a minute.
Phil climbed in bed with him tonight. Chase laid his head on Phil's shoulder and put both legs on him. He did not want him going anywhere.
Tonight we give glory and praise to The Lord for endless miracles today. We continue to pray for progress to get into rehab soon. We pray for Chase to be able to speak, and for his communication skills to continue to improve to ease all our frustrations. We pray for Justin & Erica to have miracles each day, and God willing, to wake Justin up. We pray for you. We ask The Lord to bless you in your daily lives. We pray that The Lord will bless you and keep you until we meet again. We are legion!
Day 32
Saturday July 19th
5:15 am
5:15 am
Chase update:
Drum roll please!!!!
The Doctor came in today and said he was going to talk to Craig about going straight there. He thinks he's ready. Wahoo!
It's a great first step, now we just have to get Craig on board, wait for an open bed, have a medical flight available and have the insurance companies okay.
So maybe not tomorrow
It's a great first step, now we just have to get Craig on board, wait for an open bed, have a medical flight available and have the insurance companies okay.
So maybe not tomorrow
He is so close to being what I would consider fully awake. He still has moments where no one is home, and he still reacts more than he acts, but he keeps giving us one miracle after another.
He tried to pull his helmet off today, then tried to rip off his oxygen shield, pulled on his feeding tube, and, threw the little vacuum for his mouth numerous times. Hit, pushed, kicked, yelled, complained. He rolled all the way to his left side when my mom came in because he was mad at her.
The young men from our ward stopped by on the way home from scout camp. Some of them got high fives and some of them got kicked lol!
It's a great day! Thank you for your part in the miracle we are living.
Tonight we thank The Lord for hearing our prayers about going to go straight to Craig. For allowing Chase to progress at such an amazing speed, and for aligning thing in our favor. We pray things continue to move forward with that purpose. We pray fervently for Justin's recovery, and for him to defy odds, and exceed expectations. His kids will be here Monday so we pray for miracles for them. We pray the excellence of your day has matched or exceeded our own, and if not, that The Lord will yet allow you a precious moment tonight.
May Heavenly Father bless you and keep you until we meet again. We are Legion!
May Heavenly Father bless you and keep you until we meet again. We are Legion!
** This is one of my most favorite moments of this whole Journey, its is just above the day Chase told me I was his best friend**
Day 33
Sunday July 20th
4:50 pm
Chase Update:
Not a lot of changes today. Chase is still emotional. They keep poking and prodding him and he is fed up. He HATES his helmet. He tried to pull the actual trach out today, that's scary! The upside is that He is getting better at grabbing with his fingers.
This phase is so frustrating, all I can do is try to calm him down, and then we experience another bought of irrational emotional outburst.
I have hardly spent time with him today, it just seems every-time I come over they are cleaning him or setting something up.
They told me they couldn't calm him down, when I went in his room he was in bed wearing his helmet- Duh! Helmet off - Chase asleep. I never considered myself a genius before, but now........
Tonight I pray for chase to be able to be comforted during this stage. We continue to pray that he will be able to communicate with us. As always we pray The Lord helps us get to Craig in the best time frame for Chase, and for the patience to wait if it's not as soon as we would like. Please continue pray for our ICU friends Justin & Erica they need a few extra prayers today. We pray your Sabbath day is amazing, and blessed.
May God bless you and keep you until we meet again. We are Legion.
May God bless you and keep you until we meet again. We are Legion.
** Video Link **
Day 34
Monday July 21st
8:45 am
Chase Update:
Chase did NOT behave today when his case worker and doctors came in today! Wahoooooo! He hit, kicked, grabbed, and rolled. That makes 2 different doctors and a PA that think he is ready. They are definitely calling Craig today!
We had to put the seizure mats on the rails of his bed to make it harder for him to get out of bed. I spent 2 hours with him this morning before Phil got up and I am worn out. He has to have supervision to keep him from pulling on things like his catheter YIKES!
Today I downloaded an app that has yes & no buttons on the screen. I'm hoping it will be able to help us communicate. So far he has communicated he doesn't want my phone in his face by trying to throw it across the room
Chase has learned to reach across his body now, and joy of joys he can make a fist! Yea! Now I get to dodge knees, elbows and fists. So things are getting back to normal. Chase does things that make me crazy, I tell him to stop and he either ignores me or finds something more annoying to do.
His new favorite things to do is grab my hair and pull me into a hug ( aka smell my armpit) then shove me away - aaaaaand repeat.
A bored Chase is never a good idea so please continue to pray for us to get into the Rehabilitation center ASAP. Please continue to pray for us to be able to communicate with Chase, we would love to be able to ease his frustrations (and ours) please continue to pray for Justin & Erica today. He is fighting an infection.
We pray your day is full of little miracles like ours, and that you are blessed with mini adventures today. Make it happen As always we pray that we accept The Lord's will in all of this, and make it our own.
May God bless you and keep you until we meet again. We are Legion!
We pray your day is full of little miracles like ours, and that you are blessed with mini adventures today. Make it happen As always we pray that we accept The Lord's will in all of this, and make it our own.
May God bless you and keep you until we meet again. We are Legion!
5:10 pm
2nd Chase Update:
Guess who's going to Craig on Thursday! Wahoo! Well as long as the insurance company approves it! So I guess I should say "Guess who's tentatively going to Craig on Thursday. I am so excited!
Today they took the oxygen shield off of his trach. He is staying at 96-99% on his oxygen levels so that's one step closer to capping his Trach.
Thank you to everyone who has been praying we would go straight to rehab instead of the long term hospital. Today we give thanks to The Lord for hearing our prayers, and we ask him to allow Chase to continue his accelerated healing to give him the best rehab experience possible. We pray for the insurance company's approval to come swiftly, and we also pray for Erica and Justin. We would love to see him wake up before we leave. We love you, we pray for you, and never doubt we still need you. Thank you for being a part of our legion thus far. Our miracles have only begun, and we are excited to share this next step in our journey wih you!
I am going to go ahead and say Chase has officially been woken up! We have a long way to go, but with Our Heavenly Father at the helm we will reach a full recovery. We know Chase will never be exactly the same, and we definitely know we will never be the same. We thank the lord for the changes he has brought about in us, and we hope that you have changed and grown with us. May The Lord bless you and keep you until we meet again. We are legion!
Day 35
Tuesday July 22nd
9:30 am
Kami Update:
Chase is exhausting. He is either Hitting me, hitting himself, hitting or kicking the bed, or he is trying to climb out of bed. I mean holding onto the side rails- lifting his body- and throwing his legs over the side of the bed- trying to get out of bed. I was literally trying to hold him in bed while dodging flying limbs. Did I mentioning was in bed with him at the time. Yeesh. Thank goodness I am strong.
I am yet again in a situation where I am surrounded by people who tell me what I believe will happen - won't happen. Every time I tell a new nurse we are leaving Thursday - pending insurance approval they look at me with pity. I get that the insurance companies take forever normally, but when have we experienced a normal process in the last 34 days. He needs to go to rehab, and if this is The Lord's will, then we WILL leave Thursday! If The Lord doesn't think Chase is ready, then we will get the approval when he is. I don't know about you, but Chase and I will be packed and ready to go Wed. night.
I miss Chase. He is just reactive and active, but not interactive. I really want my son to look at me with recognition again. His eyes are dilated, and he is in fight or flight mode most of the time.
So today we still pray for the insurance company to be swift and answer in favor of rehab in Denver. Craig is where we feel we need to be. We pray for Chase to swiftly move to a more cognitive state. We need to be able to reason, and communicate with him ASAP so that we can get the most out of our 60 days in rehab. We pray for Justin & Erica, and for their family. We pray for you. We pray you recognize your own miracles today, and while your struggles may not be as physically exhausting as ours today, we pray you will be strong enough to conquer them.
May The Lord God bless you and keep you until we meet again. We are Legion!
May The Lord God bless you and keep you until we meet again. We are Legion!
2:00 pm
Chase Update: Day 35
Great news & terrible news!
Great news first! We are flying out of Minot ND to Denver CO at 9:00 am Thursday morning! Wahooooo! Insurance approved our Rehabilitation at Craig hospital.
The terrible news is that they won't pay for the air ambulance because there are closer rehab centers. I feel very strongly that we are supposed to be at Craig so we are going anyway. It's frustrating to once again feel so strongly about something and have the odds stacked against you. God is great and he will provide. We figure it will be between $20,000 - $35,000. That's a hard number to swallow.
The air ambulance is still going to bill my insurance company, so today we are praying that The Lord will provide a way for it to be covered. I am really hoping there isn't a limit on miracles or we are probably about there.
Today- no more catheter so chase gets to wear pants! Wahoo! No more antibiotics! We are getting rid of leashes left and right Thank you for your help in getting us this far. Seriously - Thank you!
Step 1- Survive - done
Step 2- Heal- done
Step 3- Get to Rehab- we are here!!!!!
Step 4- prepare house and equipment in a new room for Chase
Step 5- Bring Chase Home
Step 6- Surgery to place Chases Skull cap over the hole in his skull
Step 7- Begin re-entry into everyday life.- one day at a time.
We have a long way to go!
May God bless you and keep you until we meet again. We are Legion!
Step 1- Survive - done
Step 2- Heal- done
Step 3- Get to Rehab- we are here!!!!!
Step 4- prepare house and equipment in a new room for Chase
Step 5- Bring Chase Home
Step 6- Surgery to place Chases Skull cap over the hole in his skull
Step 7- Begin re-entry into everyday life.- one day at a time.
We have a long way to go!
May God bless you and keep you until we meet again. We are Legion!
9:00 pm
2nd Chase Update:
Chase got to stand up today. He loved it! By stand up I mean it took 3 people to hold him upright, but he really loved it. He did way better at sitting up as well.
I went shopping for soft easy to wear clothes for Chase today. I bought whatever I liked. He has brain damage so I will just tell him that they're his favorite. Lol ........ too soon?
We love you all and pray that God will bless you and keep you until we meet again. We are Legion!
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