Let there be light

Happy Easter! Today we spent the day as a family gathered around my Dad and enjoying a cafeteria honey ham and prime rib. While I can't say the hospital is where we most wanted to spend our time, I can genuinely say we were happy to be there and be together.

I wish I could adequately describe my Dad's personality right now. Let me first say that I legitimately respect my Dad more than anyone in the world. His opinions and input have always been extremely important to me. So at the risk of sounding belittling: he is very child like. We need to explain things multiple times, correct simple errors and analyze small concepts. We go over the same things multiple times and still cannot seem to satisfy his need for answers. He is forgetful and unamused, yet he seems to be accepting of what has happened to him and can retell the story of his stroke in detail. He recalls the pain and how scared he was that he would not survive when the realization of his reality set in. Then everything went black.

He has been in his dark, sedated and confused place for one month, but he is starting to see the light. Dad's waking has been a beautiful and celebratory miracle for us, yet it has been filled with lots of sadness for him. He spends lots of time deep in thought and has taken to an old habit we watched for countless hours by my Great Grandma Vida. When she lived with us, we would lose her for periods of time. She would block out conversation, her eyes would fill with sadness and she would rub her fingers over her eyebrow. Ironically, my Mom silently pointed to my Dad today and I watched him do this all too familiar action. I know this is sad for him. He has been robbed of his independence and dignity. His self respect is threatened and he is feeling the horrible 'what ifs' for his future.

Today, while we were at dinner he convinced himself he could get to the cafeteria to be with us and fell in the process. I feel so saddened by this, not only because it was physically painful for him, but because I can only imagine the words he was saying to himself when he failed.

Rehab is difficult. It is a process full of hope and recovery, but the road to independence is long and rocky. Dad saw the sun today for the first time in four weeks. I know he was thinking about his farm and his life while sitting in his wheelchair and I hope he knows that that life is not over. It's not gone. It's just a lot of hard work away.

Oscar

Wow. Dad is grumpy today. No matter how grouchy he gets, he is still hilarious. He cannot stop talking about food and today he informed us the first thing he wanted was a blueberry waffle. That's quite possibly the most random thing I have ever heard. I don't know that I have ever seen him eat one in my life.

He went to therapy for four hours today yet he cannot remember one minute of it. He keeps telling everyone he slept through the whole thing which I know is a lie because I came to check on him a few times while I was at work and he was away all morning. His breathing sounds terrible today. His lungs are clearly full of junk so we keep telling him to cough. Despite our badgering, he keeps complaining about the breathing of the person in the next room. He is so annoyed about everything: his feeding tube, his Trach, toileting, us visiting, us leaving... It's so funny because it's so unlike him.

They are still running the anticoagulants for his blood clots but they have not scanned them since we left the ICU so we really have no idea what's going on with them. The team does not seem super worried about them so we are choosing not to worry about them. A very amazing thing happened today though, Dad got his knees back! His legs became so swollen while he was sedated they were nearly as wide as my waist. He had absolutely no sign of a knee cap whatsoever. That being said, his ankles are still looking like he is twenty months pregnant.

It looks like he will have a fairly slow Sunday with only one therapy session. Lets hope he remembers it! Happy Easter (or Valentines- that's what my Dad said earlier today)!

Two weeks awake

I am sharing a photo I never thought I would share because i did not want anyone to ever see my Dad in such a vulnerable position. When this picture was taken, my Dad had suffered an extremely lethal hemorrhagic stroke only hours before. He was in very critical condition and was given a 50% chance of survival. His brain stem and ventricles were enlarged and soaked in irritating blood. The neurologist said to us on this morning, "I have seen really bad bleeds before, and this one is very serious. It is highly likely that he will never wake up." I can never describe to anyone what this day was like and I can only pray that I never experience fear and despair of this magnitude again. My Dad does not look like this anymore. His eyes are bright. His strength is returning and his determination to return home is immense.

Today in therapy he dressed himself (fairly well I am told) and then splashed on his infamous Drakaar Noir. He worked hard walking and making his way up and down stairs. He is no longer receiving ventilation or oxygen through his Trach and the doctors are considering removing it on Monday. This is a huge step in the road to recovery and I cannot wait to see him without any tubes in his face or neck. He is having major problems with his vision and says that he Is constantly seeing double. He closes one eye in order to do simple tasks. This is worrying all of us as we would like him to be able to return to his regular activities at some point (most of which require impeccable eyesight) but the therapists are fairly confident this problem will resolve over time. Sleeping is also a problem. He is having nightmares and has a lot of trouble discerning between truth and fiction. In the evenings he frequently becomes anxious and agitated and needs constant reminding that all is well.

Today was better than yesterday and yesterday was better than the day before. In the rehab unit he is given a schedule in the morning which usually contains five therapy sessions: 2 physical therapies, 2 occupational therapies and one speech therapy for the day. They are all difficult but he continues to struggle most with the fine motor tasks in OT. Speech is working with him on swallowing so that he can eventually return to his diet of roast beef and mashed potatoes, something he begs for every day.

We are looking forward to celebrating Easter as a family this weekend and while we will take part in Egg hunts, baskets and candy comas, we will celebrate our savior and his resurrection. We will be grateful for the immense blessings we have and are receiving on a daily basis but mostly we will be overwhelmingly thankful that the man in this picture is now a terrible memory of the past. We will celebrate it with Dad.

A whole new Dad

This is Cortney tonight. Che' is busy delivering babies, and asked me to fill in. I did not get here until four this afternoon, so I missed most of the day, but I will do my best.
When I left last Thursday I left a Dad who still most of the time did not seem to know who I was, was confused, and seemed very sad. The Dad I saw today was a whole new man. My kids and I came bounding into his room, he said "hi grandkids", and then reached his arm out to each of them calling them by name. It was such a sweet little reunion, as all four of his grandkids sat around his room   fighting for the chance to sit in the chair next to Grandpa.

I was not here for his therapy today, but it sounds pretty intense. Dad's day started at 9:00 am when they started his first therapy session. He has five sessions throughout the day that last 45 minutes each. Today he said that he walked, practiced on stairs, and I heard he even beat Colby at a game of tic tac toe. It sounds like Colby did an excellent job today, and pushed Dad pretty hard. Dad also had an exciting first today, he was able to suck on ice chips and eat some applesauce. I have never seen my dad eat applesauce in my life, but you would have thought he had a steak. He was super excited. I am sure after a month of no food anything is gourmet. I am not sure what the plan is for introducing new foods, but this small start is exciting.

Dad is still a little confused at times, is struggling with his short term memory, and the double vision continues to bother him. He also gets a little anxious at night and is having a hard time sleeping. It will be nice when he can get home to his own bed, and his own routine. Today, he was telling me he has to get home because it is going to be time to drill soon. He is a true farmer, and a little stroke can not keep him from worrying about his crops. I feel as if Dad is improving a little bit everyday. I was in awe this evening as I watched my Dad get up, and with assistance walk himself to the restroom. I can not believe that the man I saw in his bed today is the same man I kissed goodbye a week ago. He amazes me, he is a fighter, he has a positive attitude, and he will overcome this.

Day 24. Walking

Dad's first day in rehab was very colorful. He was awake bright and early and ready to work! They let him have his speaking valve most of the day which was so nice, especially since half of the things that come out of his mouth are absolutely hilarious. Conn and Whitney came to visit and they helped Dad talk on the phone to some family members. It was so fun to watch their reactions when they realized who was on the other line. His voice sounds different with his tracheostomy in place, more nasally somehow, yet his familiar drawl and pronunciations are the same and can't get enough of listening to him talk. I didn't realize how afraid I was that I would never hear his voice again. It's such an amazing feeling to let go of the gripping fear that has consumed me for so many weeks. Dad will live. He will recover.

In physical therapy they took him to the gym and assisted him in walking around the entire room. He did surprisingly well with their assistance and it became clear that physical therapy would not be our biggest hurdle, occupational therapy was next. They asked Dad to put together a puzzle and he struggled with the task. He has been complaining today that he has double vision and it seems to be interfering with his completion of fine motor tasks. I first noticed the problem yesterday when he struggled to touch the doctor's outstretched index finger. The doctor thought Dad might be suffering from a condition in which the mind takes an extended period of time to tell the body what to do.

Whatever Dad's limitations at this point, we continue to be so grateful as a family for the progress he has made. His memory is remarkable (today he offhandedly told Colby how many miles are on his work truck). As I said earlier, he still makes comments occasionally that make no sense. I saw his neurologist on my way into work today and I mentioned this to him. He assured me that this is totally normal and would hopefully fade with time. Because of his lucidity in most situations, I'm confident that this is right.

I was thinking earlier today how many times I have used the word grateful, miracles, prayer or hope when writing this blog. I think I would be embarassed by the exact count but this experience, although one of the most painful things I have ever gone through, (aside from the death of my Aunt Linda) has truly been an amazing experience of faith and growth for my family. I just went to check on my dad (it is no 11:30), he was laying in bed with his eyes open. I told him to stop worrying about everything, to close his eyes, sleep and focus on his healing. When I went to leave he held out his arms. I laid on his chest and realized that my Dad really is back. What an amazing gift.

No longer critical!

Today we made the big move from critical care to rehab! To me this move represents many things, the largest of all being the fact that my Dad is medically stable enough to transfer from a high acuity unit!

Dad had a rough night last night. He became really agitated and they had to restrain his arms. That, of course increased the agitation and he ended up with no sleep. He did well with rehab today. They are still just having him stand at the edge of the bed and attempt to take a few steps.

Once in rehab, I requested that the nurse call someone who could apply his speaking valve to his Trach. It is so difficult to watch Dad mouth words and make hand gestures without having any way to decipher what he needs. The respiratory therapist eventually came and we were able to have another colorful conversation with him. For the most part Dad is very lucid, he remembers who everyone is, what he does, where he lives, and the date. He was extremely annoyed when the doctor asked him who the president is. As most of you know, my dad is about as right winged as they come and he did not appreciate having to talk about Barack Obama. He does, however, still have quite a bit of confusion happening. For instance, he told Colby he needs to check the temperature of the rocks and reminded us repeatedly that he is going home tomorrow. At one point the doctor asked him to touch his nose and then touch the doctor's outstretched index finger. Dad did both and then grabbed onto his finger. The doctor then asked him to touch his nose again. For some reason my Dad became convinced that the doctor's index finger was his own and tried repeatedly to pull his hand toward his nose. He kept saying 'well I would if you would let me!' Colby and I tried so hard not to laugh but he is just so funny right now. He has made some amazing progress but he is definitely caught somewhere between reality and Strokeville.

We are so excited to watch his progress over the next couple of weeks. He is very motivated to work hard and continue his path to recovery and we all have no doubt he will get there. Welcome to the rehab chapter!

God Made a Farmer

Carlie here again,
Today has been an absolutely amazing day for our family. I have been away from Dad for about two days because of work. Let me tell you, that man is a completely different person from the last time I saw him! When I left before the weekend he was still struggling with moving his extremities fully, and he was just barely starting to mouth a few words. When I walked into his room, I couldn't stop beaming! They were just getting ready to put a speaking valve over his trach, and I cannot even express how incredible it was to hear my Dad's voice again. It brought tears of pure joy to my eyes. The monstrous uncertainty that has plagued our family for three weeks is finally starting to recede. Dad is awake, he can move, and he can speak! The speech pathologist asked my Dad if he could identify me, and he pointed to me and said "this is my youngest, Carlie." I thought my little heart might burst. He is allowed to keep the speaking valve on for about thirty minutes at a time. They want to give him plenty of rest so that he doesn't weaken his voice too much. Mom and I enjoyed a nice little chat with him during that time. We also called Colby, Che', and Cortney so that they could hear him speak. I got all of the phone calls on video, and they are really touching. We are all just so relieved and grateful to hear that man on the other end of the phone. It's truly incredible. The plan for tomorrow is for Dad to head to the rehab unit here at the U of U. We are all very anxious for him to begin rehabilitation. However, I don't think that anyone is more anxious than Dad himself. He kept telling us that he was going to be heading home tomorrow. Not quite Dad...we told him not tomorrow, but soon enough. :) While there have been amazing strides, there is also a lot of frustration that goes along with this process. Dad wants to get moving. He is struggling with not eating or drinking anything. He broke my heart tonight when he kept asking me for a drink. I wanted to sneak him a Diet Pepsi so bad, it was killing me. Because of his trach, and the uncertainty of his swallowing ability he will likely be unable to eat or drink anything by mouth for a bit longer. I believe that this will be one of the many hurdles Dad will have to deal with. He is also very eager and anxious about all of the things going on at home. He kept saying that he can't wait to get back to work. One of the first things out of his mouth to my Mom and I was to ask how his trucks were running. I guess you don't work as hard as my Dad has his whole life to just give it up for one little stroke. I must say that I am somewhat relieved by this. I had a lot of concern about what the future may hold for him. I know that he would never be satisfied if he isn't doing what he loves. I hope that this will motivate him even more to work as hard as he can in rehab. It also comforts me that my Dad will not be a completely different person because of his injuries. He is still Judd. He can't wait to get back to the farm, and his sense of humor is still very much intact. Oh, and he can still roll his eyes with the very best of them. ;) Che'Lyn and I went back to the hospital tonight, and Dad had his speaking valve on again. We had another thirty minute conversation with him. As we were talking with Dad he was telling us about what he remembers about the night of his stroke. I was surprised to find that he remembers most everything up until he blacked out. He told Che'Lyn and I how scared he was. He said that he knew that he was probably having a stroke, and he knew that something was very wrong with him. He told us that he was very scared at the idea of what may happen to him. He didn't know what would happen to his family if he didn't make it. As I was driving home tonight it really hit me what would happen if we didn't have my Dad. He is such a key influence in my life and the lives of so many others. He has been the Knight in shining armor for as long as I can remember. I think that the mood for our family right now is one of incredible gratitude. Our journey has been long, and it is not over yet. But Dad is better every single day. We have high hopes for his future progress. Stay tuned for tomorrow. If everything goes as planned, Dad is off to conquer rehab. Wish him luck. They are going to whip him into shape!

One final thought:
As I was driving home tonight I was reminded of the Paul harvey speech "So God Made a Farmer." Many people saw the commercial featuring this speech that aired during the Superbowl halftime. Dad was particularly fond of this commercial, and I just wanted to quote this one part because I think it so perfectly sums up my feeling on this amazing man.

God said, "I need somebody strong enough to clear trees and heave bails, yet gentle enough to tame lambs and wean pigs and tend the pink-combed pullets, who will stop his mower for an hour to splint the broken leg of a meadow lark. It had to be somebody who'd plow deep and straight and not cut corners. Somebody to seed, weed, feed, breed and rake and disc and plow and plant and tie the fleece and strain the milk and replenish the self-feeder and finish a hard week's work with a five-mile drive to church.

"Somebody who'd bale a family together with the soft strong bonds of sharing, who would laugh and then sigh, and then reply, with smiling eyes, when his son says he wants to spend his life 'doing what dad does.'" So God made a farmer

I'm so grateful God made this particular farmer, and that he has been so carefully watched over in this life. Have a great week everyone. Thank you all for your continued support.

Hugs

Today has been another great day for my Dad. He is the most alert I have seen him and was very congenial and communicative. He stood with physical therapy and was able to shuffle his feet back and forth a few times. He is making great strides and will be a great candidate for rehab soon.

I was technically working today (I am a clinical nurse in labor and delivery one floor below my Dad), but it was a slow day so I ran up and down the stairs as many times as I could without getting fired, which it turns out... is a lot. This morning they took him for another CT scan of his head since he has been very lethargic in the afternoons. The results were all positive. He still has some swelling in his lateral ventricles, but the hemorrhage has decreased a little bit more. He is making positive steps to recover from this horrible tragedy and I am so grateful for the miraculous nature of the human body.

I did not share this story earlier because I was so broken hearted initially, but a few days ago my Dad had not responded to me whatsoever during my three hour visit.When I was leaving, I took his face in my hands and said, "Dad, I want you to let me know that you know me. I'm going to hug you and I just want you to move your hand a little to hug me back. I will help you." I laid my head against his chest and watched for any sign of effort, any small urge to prove he knew me, and that he loved me. He didn't even move a finger. For those of you who know him, this is so out of his character. My dad is a hugger and he frequently shows affection for his children in this manner. I reminded myself repeatedly that this process was not about me and that it is NOT his job to make ME feel better. The hurt was there nonetheless.This morning, I asked him again. I cautiously laid my head down on his shoulder and my Dad brought both arms around my back and squeezed with as much energy as he could muster. I could feel the warmth of his body and the familiar beating of his heart and that hug meant more to me than any other ever has.

The rest of the day has been spent with his family members. Both Ryan and Melissa are down in Salt Lake today and I know that makes him so happy. He loves all of his siblings so much and I know they will be such a huge part of his recovery. This afternoon Grandma and Grandpa were looking at him via Skype and we were discussing his need to learn sign language as he is still not able to communicate verbally. My Dad showed his extensive sign language abilities by raising both hands in a very offensive gesture (think middle fingers). We all laughed and I was so happy to see my Dad's personality is still very much alive.

Today an elderly couple came by the nurse's station to pass the sacrament. I happily obliged. In the room, the wife passed me a piece of paper that brought me to tears and I would like to share it here:

"It isn't as bad as you sometimes think it is. It all works out. Don't worry. I say that to myself every morning. It will all work out. If you do your best, it will all work out. Put your trust in God, and move forward with faith and confidence in the future. The Lord will not forsake us. He will not forsake us... if we put our trust in Him, if we pray to Him, if we will live worthy of His blessings, He will hear our prayers". - Gordon B. Hinckley 

This statement is true. It has been three weeks since the vessel in my Dad's brain leaked blood through his brain stem and stole away our world. Three weeks. I have had moments of faith and moments of doubt. But I know that God is aware of me, and that he is so aware of my Dad. I will never know why this happened, I don't need to. I just need to continue to have faith that miracles happen and that he can heal. My Dad will stand to hug me again someday. I know I will feel the strength in his arms around me many more times throughout my life, that he will again comfort me in times of need and that knowledge brings me so much peace and comfort. 

Conversations with Dad

I wanted to title this 'conversations with the Mad Hatter' but Landon forbade it. My Dad had such a great day yesterday and must have really worn himself out because today he was very tired and lethargic. In fact this afternoon he slipped back into a very deep sleep and resumed his all too familiar shaking. We haven't seen him do this for weeks and it was concerning for us to watch as we are constantly afraid he may suffer from a rebleed due to the high administration of blood thinners. The medical director came to the room and while he was also not able to rouse Dad, he reassured us that he is still recovering and still has blood in the part of his brain that controls consciousness. While He was in his coma like state the speech therapist came to practice speaking with him by placing a speaking valve on his Trach. For days now my Dad has been mouthing words and becoming more frustrated that he is not able to effectively communicate so I was super anxious for him to wake up and participate.

The therapist left her pager number and said if we could wake him within the hour she would come back. I know my Dad was probably so annoyed with all of my tactics, but he eventually opened his eyes to my pleading.

When the valve was in place and he was able to speak with us he was extremely confused. He could not remember any of his kid's names and said my mom's name was 'Mary'. He did remember though that Cade is his brother and told my Mom repeatedly that he wanted to go home tonight or tomorrow. He asked me when we got on the ship, counted to four in Spanish instead of English and couldn't believe he had been married for thirty years. We smiled and laughed while he talked, not because we were making fun of him but because it was such a relief that he was able communicate and clearly still has language skills. I think he would have been much more lucid if we had not done the speaking trial right after a deep sleep, but at this point it's really difficult to tell exactly what he understands right now.

I know this blog sometimes comes across as sad, or as if I highlight the bad instead of the good, but this blog is perhaps the most true, raw and honest thing I have ever written. No one can dictate what emotions you should have when going trough an experience like this and I certainly cannot apologize for any feeling I have had throughout this process. My dad has made amazing strides in three weeks, he has done things countless professionals said he may never do and literally grows stronger everyday. That being said, this process continues to be one of uncertainty and grieving for my siblings, mother and I. We are each coming to terms with the reality of our situation and dealing with these difficult emotions in our own way. This blog has been therapeutic for me. I have sat by my Dad in the darkness of his room and written thoughts straight from my crying heart. Its literally as if i am opening my diary to thousands of strangers and it makes me extremely vulnerable. Please understand that in a hemorrhagic stroke as severe as my Dad's, patients do not wake up and return to their daily lives right away. Some days are good. And some days are bad. I am certainly not trying to give more credit to one than the other. Someday I like to think I will read this with him and I know that he will appreciate every emotion that we felt: the joys AND the heartaches.

Progress

Today has been such a progressive day for Dad. He is not able to speak because of the trachea, but this morning he was persistently trying to say something. The nurse eventually covered a piece of his tracheostomy so that air could pass his vocal cords and he said he wanted french fries for supper. Go figure that the first words we would hear him speak in almost three weeks were about potatoes!

While Colby was sitting by his bed earlier today Dad was moving his legs like he wanted out. Colby ran to get the nurse and the pair of them moved him into a chair.

He is doing much better today and does not seem so down. We are so proud of the leaps and bounds he makes every day and know that his determination will go far in his recovery.

Emotions

I feel we are entering a new chapter of The Stroke of Bad Luck. The first chapter was filled with emotional anguish, ugly questions, dismal prognosis and unearthly fear. This chapter is clearly being written by the same morbid author. The language of fear and uncertainty is the same, but a new character has joined the cast: Dad's emotions.

For over two weeks now my family has mourned my Dad and been forced to face this new reality. In fact, whenever a new patient is brought to the NCCU, we say 'Oh my goodness, at least we are not on day one!' Well, my Dad is on day one. He is just becoming alert enough to realize this horrific nightmare is real, and his physical limitations are terrifying. My dad is a kind and compassionate husband and father. He parents with love and affection. Because of this, it has been difficult to watch him in his current state. He is unable to communicate for the most part and is not interested in engaging with visitors. We are not sure how lucid he really is and we have to keep reminding each other that his constant rebuffs are not personal. It is not his job to provide validation for our insecurities and he needs us to be strong and provide reassurance.

Physical therapy is going well. They are going very slowly as he tires easily and needs lots of energy to breathe. They take him off the ventilator and allow him to breathe with supplemental oxygen only. Today his succeeded in this trial for 8 hours before tiring. It is becoming very clear that his right side has been more affected by this ugly monster. He has much more difficulty moving his right arm and his face is noticeably droopy on that side. This is resulting in a very uncharacteristic frown. We know this can all be improved with rehab and we are preparing ourselves for that journey.

They have been running the anticoagulant drip for two days now. A recent conversation with his neurologist clarified that this will most likely not treat the clots he already has, but will prevent the formation of additional ones. The hope is that his body will eventually break up the clots. If this doesn't happen, we will deal with that issue at a later time. His vital signs have been very stable although he does have high blood pressure. He is maintaining his temperature on his own which is an amazing blessing as the heating and cooling process caused him much duress.

While the emotions we are dealing with now have changed, they are not any less real. The overwhelming fear is always present and the uncertainty plagues me. Will this man ever smile like my Dad? Will he love, work, play, and hug me like my Dad? These questions can only be answered with time and hard work. And while I am still praying for physical healing, I am mostly praying for comfort, peace and strength for my Dad as he is forced to accept his new reality and limitations. I miss him. I miss the man he was so much it physically hurts inside. But I know he is still in there somewhere and I know he can overcome these difficult and devastating emotions to come back to me.

Rehab Day 1

Hi folks!
This is Carlie popping in to do a little update for the day. Today has been a bit of a grumpy day for Dad. When I got to the hospital I was forewarned that he had been a little somber. The nurses told us that he didn't sleep well, and he was in a deep sleep when I arrived this afternoon. Unfortunately, being jolted out of a dead slumber by physical therapy didn't do much to improve his already dismal mood. Physical therapists at the U of U sort of have a reputation for being persistent. And these particular characters were no exception. They immediately started pulling pillows out from under him in an effort to rouse him. The therapists really wanted to try and sit Dad up on his own this afternoon. They sat the bed up in order to see if he could support his own weight. As he started to wake up more it was very clear that he was not thrilled with the therapy plan for the day. He reluctantly moved his feet and wiggled his toes. He was able to sit up for just a few seconds on his own without the physical support of the therapists. They worked with him on supporting his own head, and tracking voices and people with his eyes. Throughout the session both his parents, my Mom, and Tim and I were his VERY enthusiastic cheerleading squad. There were many times when he gave us that "please get out of my face" look when we really got excited. ;) I think that a lot of Dad's frustration is related to the fact that he really can't communicate. I don't know how much he is processing or understands, but it seems that he is frustrated by the inability to speak or let us know what he needs. I believe that he knows who different people are, and I think that he recognizes the different family members who come in and out. This has to be a humbling experience for Dad. He has never been the kind of man who stayed down long (I can count his sick days in my entire 21 years on 1 hand). I am sure that it is difficult for him to not be able to respond or acknowledge everyone the way he would like. We are all hoping that he is able to rest well tonight, and that his spirits will be a bit brighter in the morning. He is now completely free of all the tubes in his nose and mouth, and he is really starting to look like my sweet Dad again. He does have a few new holes and tubes, but we will keep them until he is back on his feet. Even though he did not have the best day, I am nothing but grateful for where he is this very minute. I have a feeling this will not be our last stir crazy day around here. Dad has already proved what a fighter he is. I know that this stubborn streak he has will actually work in our favor in the end. He will keep going, and we will keep cheering him on (even though it annoys him!)

Hope he knows

It's dark in Dad's room and very quiet except for the sound of the air conditioning and the ventilator. He and I are here alone and I have been encouraging him to sleep as I know it has been a very long day full of procedures, visitors and expectations. I can't imagine how exhausted and lonely he must feel. I feel like we are talking AT him all day. With his limited means for communication, he is alone with his thoughts. I have wondered all day what the voice inside his head is saying. He stares at us occasionally but most of the time he gazes at the ceiling with sad eyes.

I wish I could make him understand in some way just how much we love him, just how much we believe in him and mostly how grateful we are to have him back. For the first time in my life I feel like my Dad is in a place that I can't get to. In this moment of silence between us, I would give anything to hear his voice. For two weeks I have been mourning for me, for my siblings and for my Mom. Today I am mourning for him. For what this stroke has taken from him. I am mourning the sparkle in his eyes. I know it will return in time, that its going to take a lot of hard work and encouraging words. I will try not to be impatient and for now I will just enjoy this moment I have with him. Watching him live and breathe, proven by the beautiful sound of the ventilator.

Day 16

My dad is out of surgery and everything went well. They successfully placed a tracheostomy and a feeding tube. His ventricular drain is still in place but will most likely be removed this evening. We are also hoping they will start the anticoagulants soon to begin the breaking up process of his large clots.

Dad is struggling emotionally today. He is still not able to talk but we have noticed tears in his eyes the last few hours. Thankfully Conn and Grandpa were able to give him a blessing for comfort. This is the third blessing he has received since his stroke but the first that he is aware of. I am so glad my Dad has such a close relationship with his father and brothers as I know they will be a very instrumental part of his recovery.

The overwhelming fear of Dad not waking up is gone and has now been replaced by the realization of the work and road blocks ahead. As most of you know this is a very active and hard working 50 year old man and I truly think this process will be very trying and frustrating for him. I am not convinced that he understands what happened to him despite us trying to explain what has taken place the last two weeks and I think he is frightened and confused by the devastation to his mind and body.

I said so many times to so many people the last two weeks that we are a strong, close knit and determined family and that we could support him through rehab. I knew that we could handle whatever challenges that would bring as long as someone would just assure us that he was going to wake up. Well, he did wake up. Our prayers and pleadings with The Lord have been answered and now he needs us more than ever. My Dad needs continued prayers for comfort and strength and I know that they are being sent from so many people. I look forward to the challenges ahead because it means my Dad is alive and there is promise for his future.

Decisions, Decisions

So sorry for the late update today. We have spent many hours at Dad's bedside asking him a million yes or no questions. Not necessarily because we really care that much about the answers, but because it thrills us every time he obliges with a nod of his head (much to his dismay, in face we were rewarded with him rolling his eyes multiple times). Dad has had an extraordinary day yet again today. I hate to say that as if it has become routine, because the small progresses he is making daily take us farther away from my biggest fears and I am grateful for every tiny movement. His temperature was regulated much better today. As a result of this, he was not cooled as much by the machine and his shaking was much less intense. His heart rate was lower and the pressure inside his brain has remained under 10 for two days now (they would like it below 20).

Tomorrow will be a very big day for him. For days we have been discussing the options of placing a tracheostomy to assist in his breathing or allowing him an "extubation trial", in which the breathing tube would be removed and we would see if he could breathe on his own. After carefully discussing the risk factors with his respiratory therapists and neurologists, we have ultimately decided to go ahead with the tracheostomy. Dad has been intubated for 15 days now, which means he is most likely suffering from swelling in his throat, he also has a lung infection and is not fully awake. For these reasons we just do not feel comfortable with the trial. This decision means that along with a new breathing tube, the surgeons will be placing a feeding tube that goes right into his stomach. This will need to be in place for 6 weeks regardless of his progress. Because his intracranial pressure has remained stable without using the drain (it has been clamped for two days now), it will also be removed tomorrow. This means that for the first time in 16 days, my Dad will have absolutely no tubes or drains on his head or face. I for one am so excited to see his handsome face again! In other big news, an ultrasound of his legs today revealed that the clots in his right leg have extended and are now nearly as bad as the left. Because of this, they will begin treating him with anticoagulants once the drain is removed. I am nervous for this as thinning his blood increases his risk for another brain bleed, but I also know that his need for treatment is becoming an emergent situation. I can only pray that we do not cause him more damage.

Today he has been much more awake and alert. While this has brought lots of excitement to the family, it has also brought lots of frustration to my Dad. He is becoming more aware of the difficulty in moving his arms and legs and he seems so desperate to communicate. He kept pointing today and holding up fingers and we were just unable to understand what he is wanting. We are desperately hoping that he is able to talk once the ventilator is removed from his mouth.

Dad's progress has led to many decisions for my Mom. We are all praying that we are doing what is best for him but we know that he has an amazing team of doctors that are attempting to educate and help us along the way. Tomorrow will be a nerve wracking day but I am excited we are making progress toward rehab and recovery.

Miracles

Miracles happen. This Sunday morning I am so humbled and grateful for the many blessings and miracles we have witnessed as a family this week. Today my dad is much more aware of us. He is shaking his head in response to questions, moving his feet and legs and even squeezing our hands occasionally. Tuesday evening I had sorrowfully accepted in my heart that my dad would most likely not survive this horrible nightmare. I wept throughout the night as I relived our precious family memories. I looked at pictures of him, focusing on details like his rugged farmer hands, sun kissed skin and kind eyes as I agonized over how I could ever continue life without him. Today he is reminding me of the qualities I admire the most about him: his strength, determination and focus.

The physical ailments of his body are still there. His blood clots, lung infection and temperature problems remain but his mind is healing. And for that I am eternally grateful. We have a very long way to go and we are not out of the woods, but this sabbath we are all praising our Heavenly Father for giving us back the refreshing feeling of hope.

Throughout this experience I have watched my Mom struggle in silent agony. She and my Dad have been together for 35 years and have roughed this rugged terrain of life together for better or worse. He responds to her voice more than any other, squeezed her finger and no one else's and nodded his head first when she begged him to fight and told him she needs him. Love is a beautiful thing and I am so blessed to have been raised by such unique and inspiring people. This picture was taken by my sister when my Dad first opened his eyes and I'm sharing it with my Mom's permission. It is such a beautiful snapshot into their marriage. Happy Sunday everyone, God is great.

Patience

“Patience is tied very closely to faith in our Heavenly Father. Actually, when we are unduly impatient, we are suggesting that we know what is best—better than does God. Or, at least, we are asserting that our timetable is better than His” (“Patience,” Ensign, Oct. 1980, 28).

Patience. A virtue I lack possibly more than any other. Trusting in God and his plan for my Dad has been the most difficult thing I have ever done. Because I
NEED my Dad. This experience is teaching me that patience and faith are so important for my own sanity. Today my Dad's eyes have been open for a large part of the day. He is tracking us when we speak and has nodded his head ever so slightly to communicate with us.

My Dad has made great strides in the last few days but has been unable to move his body at all (except occasionally when responding to pain). This afternoon when Carlie, my Mom and I begged him along with his nurse to wiggle his toes, he did it. Right there ever so slightly he moved his right foot, and then his left. We were downright joyful and told him repeatedly how proud we are of him and how strong he is. He seemed a little frustrated that he is still unable to move his upper extremities, but we know there is still much healing to be had and we are relishing in the baby steps.

He has a persistent infection in his lungs and today the doctors explained at length that the time is swiftly approaching when he will need to have a tracheostomy placed, as it is unsafe to ventilate a patient through the mouth for over two weeks. We are sad he will have to have another procedure but realize this will be a necessary part of the process.

As for the four letter word: the clot. It is still there threatening his very life at every second of every day. The team is very well aware of it and still unable to safely treat it. So just like in so many situations throughout this ordeal, we will wait. And we will continue to pray that it does not completely impede blood flow from his leg or travel to a major organ. We are thanking our father in heaven for the little miracles we are experiencing each day. And we are thanking each and every one of you along with him. Your thoughts and prayers are not unnoticed and we have felt the comfort and strength from all of you. So thank you.

A Familiar Gaze

For 12 days I now I have been praying for my Dad to open his eyes. And today, he did. He is opening his eyes (although lazily) periodically throughout the day and is blinking normally. His gaze is still very glassy and unfocused and he is not responding to commands, but it seems he is more with us somehow with his eyes open. That being said, my comments from yesterday are still valid today and it is sometimes more difficult to see him with his eyes open. Especially when he is shaking, which happens a lot.

I haven't talked a lot about my Dad's temperature, but it is one of the biggest problems we are dealing with right now. He cannot maintain his own temperature. The doctors are not sure if it is because of a thermoregulation problem in his brain, a side effect of his blood clot, or if he is dealing with an unknown infection. I'm thinking it's probably the combination platter. To deal with the issue, they have applied pads around his back and chest and around his legs and arms that circulate very cold water against his skin. While it is very effective in controlling his fever, it seems super uncomfortable for him and he shivers and shakes so much while it is cooling him. It is agonizing to watch.

During rounds the team informed me that the brain/muscle scan from yesterday is unreliable as the shaking created too much artifact to get a true reading. They are going to send it to a specialist to see if they could discern any useful information. If not, they may consider redoing the test tomorrow. The day is only half over, but things are status quo. Another ultrasound of his leg revealed the clot has not extended, the bleeding in his brain remains stable and he is slowly but surely attempting to crawl out of this coma. Little miracles at a time, right?

Day 11

Day 11? Day 111? It's all relative at this point. The best words I can find to describe this situation are fear and exhaustion! I mean that in a physical and emotional sense. My family has lost loved ones, too many loved ones in my opinion. But in most of the circumstances (save one), the passing was quick and the realization of grief was swift. I have described this situation to others as being dragged behind a truck for two weeks, and that analogy is feeling more and more real everyday.

We came to the hospital this morning anticipating the administration of a medication to reverse the effects of Ativan, only to learn it had too many side effects and they were not comfortable giving it. I walked past my Dad to place my purse on the couch and my Mom said, "Judd! Are you going to open your eyes?!" I ran to the bedside, and sure enough. My Dad was attempting to open his right eye. I kissed his cheek and noticed him blink, a protective reflex when something comes at your face unexpectedly. We cried and called nearly everyone we know. Disclaimer: Don't feel bad if we didn't call you. I'm greatly exaggerating.

We were thrilled at this change, but the doctors and nurses seemed to be less interested, as he is still unresponsive in most every other sense. In rounds, the doctors ordered multiple new tests. A continuous EEG to watch for seizure activity, an EKG to check the quality and function of his heart (as he has had an extremely high heart rate for a few days now and they are concerned the clot in his leg may have worked its way to his lung), and a test to check the connection between his brain and muscles.

The afternoon brought a slightly disheartening meeting with the doctors in which the same old lectures were reiterated, "It's too soon to tell. We don't want to sugar coat things. You need to prepare for the worst. If this test comes back negative there is nothing we can do. But, try to remain hopeful." That sort of feels like someone saying, "I hate every single thing about you. But no offense." They informed us that the EEG and the EKG both came back normal (phew). But that the results of the brain/muscle scan would not be back until evening. They reinforced multiple times that this test is extremely important and would be highly sensitive in anticipating his ultimate prognosis.

We were sick as we awaited the results. We had dinner and then made our way back to the hospital. On our way we stopped in labor and delivery to see if my friends could tell what gender little Baby Fullmer  or "Squishy" as we affectionately refer to it had decided to become. Did I ever mention I am pregnant? Not exactly how I wanted my little one to make its debut. But alas, that's the least of my problems. Gender result? Undecided, but preliminarily a girl (I will certainly not be rushing to Babies R Us any time soon). When we entered the NCCU we were immediately informed that the results of the test would not be available until tomorrow morning.

When I entered my Dad's room this evening, he had both eyes half open. I know what you are thinking, because so did I. Hooray! He is waking up! And while I still feel this way, I was not expecting how hard it would be to see him with his eyes open. Those eyes have smiled with me, cried with me and have filled with compassion, love and concern countless times throughout my life. Tonight, they were glassy, unfocused and sad. And while he has had shaking since the beginning of this ordeal, it is more tortuous when he is attempting to open his eyes because I am afraid that he is struggling and that he is aware of it. I have no idea if this is true, as countless people have recounted that patients rarely remember anything when they survive something like this. But like I said before, fear is a very real emotion in this. And I am constantly afraid for his well being.

Every night when we get in the car we play the "Positive or negative day" game. Today? Positive. Dad is progressing. He is showing us that he is still in there. He wants to come forward. But the realization of what the means is setting in for me and for my family. Waking up will not be painless. He will most likely be scared, worried, confused and in excruciating pain. And it's something he has to do alone. But rest assured, we will be holding his hands and reminding him how strong he is and just how much we love him. Which as it turns out, is a lot.

Hope

Hope is a transient thing in a situation like this. The ups and downs of the last few days have taken us all on an unwelcome roller coaster ride of emotions. We have faith in healing and hope for recovery. But we also have a constant fear that the outcome will not be what we are so earnestly praying for. While this journey is terribly unpredictable, today brought with it some positive news.

Dad's MRI did not look as devastating as the doctors originally feared. While there is still blood present in his brain, it is not in his brainstem and most of the hemorrhage appears to have resolved. There is, however, some swelling still visible in his brain stem. While this is all promising news, it has raised lots of questions for the doctors. The picture on the screen does not match the man in the bed. Dad's neurological exam is still largely unresponsive. He is making no attempt to wake and the pathology behind his sedation is questionable. He did have a slight response to pain in his legs today, a reaction we have not seen in weeks.They are planning to give him a medication in the morning to reverse the effects of the large doses of Ativan he received in Idaho Falls as they are questioning rather it is still playing a part in his sedation level.

The clot in his leg is still a major problem. They are still unable to treat it but there is always a risk it may migrate to a vital organ. He does have an ivc filter in place, which is a device that prevents peripheral clots from entering the lungs, heart or brain. We are constantly praying it does its job. The neurologist said they are hoping to treat the clot with anticoagulants when the ventricular drain has been removed from his brain (again, an unknown time frame).

I am still hopeful. I know my dad needs us to have faith in him, in his body, in his mind and in his will to live. While today did not bring promises for the future or answer many questions, there is always tomorrow.

Rough

Yesterday was a very hard day. My dad is breathing pretty much on his own now (he does still have the ventilator to keep his airway open) but in the afternoon his breathing became much more labored and the shaking got worse. He is still not maintaining his own temperature and if they don't keep him cool, he gets very hot.

It is very difficult to watch Dad when he looks like he is struggling or in pain and this continued into the evening. By 9:00 he was struggling with a high heart rate, high BP, high respirations and unfortunately, a high pressure in his brain. I left early last night as the emotions and heartache are definitely starting to take their toll.

They also discovered that the blood clot in his left leg is very large. Vascular surgery came to see him and have decided to leave it alone at this point, as they cannot treat it with anticoagulants due to the brain bleed.

Dad had an MRI last night which should give us a lot more information about what has happened in his brain and what we can expect from him. We are very nervous for the results of this, but ready to hear the news either way.

It's looking like today could be a very trying and emotional day for my family. I have begged you all before, but please keep us all in your prayers. Especially my Mom, who is the strongest woman I know but could definitely use the comfort and love that can only come from our Father in Heaven.

Day 9

We are settled in here at the University of Utah now and a new team of neurologists, pharmacists, therapists, internists and nurses are nose deep in my Dad's case. When we arrived here last night we were greeted by a resident who walked us through a new CT scan of my Dad's brain. There was definitely less blood than before but still a large amount in his lateral ventricles. They immediately weaned his sedation and removed his art line, IJ and cooling probe (from his femoral artery). They are very concerned about Dad's risk for infection with so many invasive lines.

Last night seemed difficult for my Dad. With the sedation lowered (and eventually turned off), he did not wake, but resumed the familiar shaking. His temperature continued to rise, eventually reaching 100.4, so a large blanket called, "The Artic Sun" was placed around him to reduce the fever. He also became tachycardic, with a heart rate of 140. Landon and I stayed with him until very late and it was so hard for me to leave him. After reassurances from the nurse that she would call me with any changes, and a sure knowledge that my Dad would want all of us to be taking care of ourselves, we turned in for the night.

This morning my Mom and I were greeted by the ICU doctor, Dr. Marshall. He changed the ventilator settings from "Assist/Control", where the ventilator is doing most of the work, to "Self", a setting in which my Dad controls the rate and depth of his breathing. He assured us that this was a good sign but he is still unclear about my Dad's prognosis as they are starting over at square 1 here. The sedation is still off and my Dad's shaking has improved greatly. They have lowered his temperature (and subsequently his heart rate) and are now performing an EEG to watch for signs of seizure activity.

My Dad's extremities (mainly his feet) have been cold for days with weak pulses in his feet. A vascular technician is here now performing an ultrasound of his legs and has verified that he does have a DVT (a blood clot in the leg) in both legs. This is not uncommon for a patient who is immobile and is just one more issue we will need to do with.

Saying we are overwhelmed is an understatement. They want to perform an MRI today and we are hopeful this will give us more information about what caused this, and what damage has been done. The team here is great, they seem to be very proactive about taking care of him and addressing his current problems. I know we are where we need to be and am praying for some answers in the near future.

Moving day

When we arrived at EIRMC this morning, the nurses told us that Dad's neurologist had already called the accepting physician in Salt Lake and that Dad could transfer to the University of Utah today. We were all very anxious about our decision to move him while so critically ill, but we feel very confident this is what he would have wanted. After thousands of forms, interviews and questions we were told a bed was ready for him and it was time to go. My mom and siblings and I all felt very nervous at this point, but prayed at his bedside that he would arrive safely.

As an employee of the university, I feel so confident in their ability to care for my Dad. I feel relieved he will be on a unit that specializes in critically ill neuro patients, and I know every attempt will be made to assist him in a full recovery. At the same time, I am so grateful for the staff in Idaho Falls who got him to a place where he
would be stable enough to transport. We had some fantastic nurses and the ICU doctor, Dr. O'Mara, provided my family with so much compassion and support.

Dad's condition remains unchanged today. I just got word that he and my mom landed safely but I have yet to lay my eyes on him for confirmation.

At the beginning of this journey the doctors repeated time and time again, 'This will be a long time, perhaps weeks or months before he wakes' and in my mind I thought, 'you don't know my dad'. However, today marks the eighth day of my nightmare and I am realizing they are right. This is not a sprint, but an excruciating marathon. I look forward to a fresh perspective on my Dad's situation, and while I'm not expecting a lot answers as to his prognosis, I am confident every resource will be available to him for a full recovery.

An indifferent kind of day

Well our seventh day has passed without much incident. We did have an angiogram of my Dad's brain that showed he is not having vasospasms (which apparently happens around day 7-10 after brain injury). So... Hooray! One less complication and we will take it without complaint. They also lowered the Propofol a little today and the tremors were noticeably less. So... Hooray again! He did start to tremble when it went too low so we are not pushing it for now. All in all, hanging in there. One more day.

One week

Hard to believe today marks the seventh day since my Dad suffered his stroke. This room has become a sanctuary and a prison all at once. A place where we have celebrated small victories and sobbed over setbacks. Nevertheless, my Dad continues to fight for his life. His handlebar mustache and head of "brown" hair was shaved last night, making him appear more sterile and fragile somehow. I have been sitting here for a very long time wondering if I have ever seen him with a freshly shaven face. I'm thinking no. As many of you know, that handlebar was his trademark. That being said, I am actually relieved to see it go as it was becoming overgrown and out of place with his tubes, tape and ventilator. He wouldn't have stood for that anyway.

He is on less sedation than he was yesterday. Still on Propofol and Ativan yet unlike yesterday, I have seen no signs of tremors. I stare at his right shoulder constantly waiting for the familiar shiver, but nothing yet. Overall, he is stable. The pressures in his brain remain below 20 (although he is still dependent on the drain) and all of his vitals look promising. It's strange really, this man is healthy as a horse. Except he can't or won't wake up. Brain injury is cruel. It's one question after another, and just like days 1-6 we continue to pray for a miracle. Join us.

Day 6

Today has been rather uneventful. Dad continues to have tremors when the sedation is lowered so as a result they have kept him on both Propofol and Ativan for the majority of the day. He has rested peacefully without any significant changes. Both Conn and Jill flew in today and were able to spend some time with him, which I know he would have loved.

We talked with some doctors today about moving him to Salt Lake. We feel he is receiving great care here but want to make sure we have every resource available to him. The ICU doctor thinks it is out of the question at this point, yet his neurologist said he would be willing to sign him over. We have prayed about it as a family and have decided to wait a few days and revisit the issue on Monday. We really do not want to cause more harm by transporting him. When he is bothered too much in the ICU, his ICP (intracranial pressure) tends to rise so the extra stimulations seems unnecessary at this point.

Today has been a stressful day. Making big decisions that could impact Dad's life in a major way is very scary. We want to be sure we are making them for the right reasons and are not basing them on fear. The tremors continue to be our main issue as we cannot lower the sedation until they stop. The doctors think they are indicative of the brain damage and irritation from the bleed, so we are praying his brain will continue to heal.

Tomorrow is our one week mark. As you can imagine, we are becoming very emotionally drained and more afraid as the days go by. That being said, our family has continued to cling to one another for support and stability. If there is one thing I have learned from my Dad it is that family is the most important thing in the world. He has shown each of us so much love and we are pleading nightly for his recovery.

Day 5

For lack of emotional longevity and clarity of details, I am going to start this blog from today: Day 5. While I don't feel the motivation or strength to re-write days 1-4 today, the story would make no sense without a recap. So here's the horrible, awful and life changing beginning. On Saturday night, March 2, 2013, my parents went to bed around 10:30. The day was spent in sweat pants, watching TV, snowmobiling on the farm and generally enjoying each other's company. Nothing pointed to the stress in my Dad's brain, the vessel that would ultimately give, or the blood that would spread through his brain stem and ventricles, shattering our here and now and filling us with dread that we have never previously experienced. Ultimately, he awoke my Mom stating this headache was different from any other and they needed to get the hospital immediately. For my Dad, this is big. On the way to the hospital he vomited and eventually lost consciousness. She called 911 and alerted them they would be arriving and begged for someone to meet them at the door.

Upon arriving to Madison Memorial Hospital my Dad was conscious enough to assist himself to the gurney. As they wheeled him to the back, my mom waited for news: the hospital report stated he was unable to protect his airway, was not breathing sufficiently and was ultimately intubated and in a coma. Transport to Eastern Idaho Regional Medical Center was needed, and quickly.

The rest is a shuffle of tears, unexplainable fear, family members, hugs, doctors, art lines, foley catheters, brain pressure monitors, temperature probes, ventilators and heavy sedation medications. The neurologist, Dr. Cash met the family with sobering news. This is a very fatal stroke, hemorrhagic, bleeding on his brain, 40% mortality rate, may never wake up, could have severe deficits, medications needed for the clot, risks, benefits.... devastation.

Day 1-5 is a blur of hope and prayer. My dad has battled and failed, battled and won. The bleeding on his brain has been largely resolved due to the TPA medication that has been directly deposited in his brain. His CT scan yesterday revealed that most of the blood has drained from the ventricles although the damage that has taken place from the initial bleed is still unknown. He is attempting to breath with the ventilator, and has reactive pupils. He is unable to maintain his own temperature, is not waking when the sedation medication is turned off and is having tremors that are thought to be benign to his overall prognosis but are heartbreaking to watch as a family. 

Day 5 is shaping up to be largely the same as days 1-4. Upon arrival to the hospital this morning it was noted that more blood was present in his brain drain (although the scan yesterday revealed most of the bleeding was resolved). After a quick CT scan and a visit from his neurologist, it was revealed that there may be more blood present than we thought yesterday (although the radiologist read the scan as "unchanged"). His tremors are less intense than yesterday. He remains on Propofol and Ativan for sedation and Nicardipine for blood pressure. He is breathing with the ventilator a little, but is unresponsive to verbal or physical cues at this point.

We are hopeful. The neurologist and the rest of the team remind us daily that this takes time. My big, strong, healthy Dad has suffered a debilitating hemorrhagic stroke and healing and answers will only come with time. For a controlling person like myself, this is the most difficult part. We want to fix this, I wish someone would look at us huddling in the corner of this room and say, "He is going to wake up". But today, that's not going to happen. Tomorrow, it's not looking good either. But the good news is: this man is a fighter. He is stubborn, strong and has so much to live for. We are hoping this is just a stroke of bad luck.