Monday, May 6, 2013

2 month stroke-iversary

I finally had the opportunity to come home this weekend to visit Dad and I was so thrilled with all of his progress. He is doing so amazingly well and it's hard to believe we celebrated his two month stroke-iversary this week! It seems like it has been ten months and I am constantly reminded of our first meeting with the neurologist where it was clearly reiterated that Dad would most likely be unconscious and hospitalized for months. What a blessed family we have been.

Mom and Dad have settled into their new home routine smoothly and are working together towards complete health. Dad is independent for the most part, although we do accompany him outside of the house. He is able to shower by himself, makes his own meals, and wanders around the house without help. I was shocked at how much stability he has gained in his walking since rehab but balance still remains an issue. Dad is convinced this is mostly due to his vision.

After returning home he went to the ophthalmologist who fitted him with a contact to help with the double vision. That contact has been a constant issue ever since. It does not seem like it is helping him see much better and he insists my sister (who used to work for the eye doctor) take it in and out three times a day 'just to see if it is better without'. We are really praying he will have continued healing with his eyes as this is his most debilitating problem. He will go see the neuro ophthalmologist in Salt Lake City on the 13th and hopefully we can get some more answers about his prognosis.

He is getting much more lucid everyday but still gets confused at times. This is much worse when he is tired but we just remind him to think through things and he is usually pretty reasonable.

Last week when my Mom went to flush his feeding tube it was not connected correctly and looked very infected. A doctor in the emergency room finally took it out for him and he is now taking antibiotics to curb the infection. The site is looking much better now and it should heal up without any problems. He does still have the IVC filter in place for the blood clots and will return for further evaluation in a few months. The ultimate goal is to take it out but the doctors are not sure if it is safe due to the extent of clotting in his lower legs.

Physically Dad is healing better than expected and I am absolutely amazed and so grateful for his recovery. I fully expect him to continue progressing as his mind continues to heal and the residual blood on his brain is absorbed. Mentally he is staying upbeat for the most part but is really struggling with his inability to return to work. He feels that he is not carrying his weight around the farm despite our constant reassurances that everything is taken care of and his brothers and uncles just want him to get better. Yesterday after some serious negotiations we let him drive the Razr around the farm with Landon. Landon said he did really well and drove down the center of the road the whole time. But don't worry, you certainly wont see him on the roads any time soon! Friday he went to turn some water on at the farm and fell, hitting his head on some cement. We lectured him for hours in the importance of taking it slow and allowing his body the necessary time to recover. If you see him out and about, give him a hug and then tell him to go home and take a nap! Thank you for your continued prayers and kind words. We all feel so blessed not only to have our Dad back, but to have such amazing and supportive people in our lives. My Mom and Dad have received so much service since returning home and I'm beyond grateful to the whole town of St. Anthony for your thoughtfulness.













Tuesday, April 16, 2013

The last day

There was some confusion today about rather or not Dad would be released tomorrow. Dr. Duncan came in after therapy and told Dad that he wanted his IVC filter taken out before he goes home and that he would need to be monitored for 24 hours after removal. The filter was placed in Idaho Falls as a precautionary measure to prevent the traveling of any blood clots to a vital organ. When it was initially placed we had no idea just how badly it would be needed in Dad's case. Both of my parents were very disappointed that they would not be going home tomorrow as we have been looking forward to this day for a very long time now. Around five o'clock the doctor returned and said that the vascular team had reviewed Dad's most recent ultrasound and did not think it would be safe to remove the filter at this point. He will be following up in 2-3 months with vascular surgery to check the status of his remaining clots. We are praying that his body begins to dissolve those clots as an IVC filter can only be removed within the first six months and keeping it in your body comes with a host of problems of its own. That being said, we certainly do not want to remove it before it is safe to do so and Dad feels more comfortable returning home with it in place.

The short of it... Dad is returning home tomorrow. Our journey as an inpatient hemorrhagic stroke survivor has come to an end. It's surreal to be honest. We have been looking forward to and praying for this day for such a long time and it is suddenly upon us. He is so ready to return home but told me this morning that he is very nervous about people's expectations for him. I think that going back to his life the way he is right now is scary and he is showing some apprehension about his ability to perform his old routine. He is so lucky to have my Mom. Today she learned how to clean and flush his feeding tube. He is no longer using it for nutrients but it needs to be in place for six weeks for healing purposes. Hopefully it will come out within the next few weeks. He is looking forward to going to the eye doctor and while we constantly remind him that he does not necessarily have a problem with his eyes, but the connection between his brain and his eyes, he is hoping they can help in some way. We are just looking forward to losing the press 'n seal glasses.

I am feeling so many emotions about saying goodbye tomorrow. I am over the moon ecstatic about him getting to go home. But I will miss he and my mom so much it makes my heart physically ache. Not seeing his progress and helping where I can will be difficult, but I know my siblings in Idaho will pick up where we have left off.

These last six weeks have been filled with more emotions than I have ever felt in my life. I cannot explain the depths of despair we have reached nor the level of elation. We have witnessed a miracle. I am grateful for the gospel and for the prayers that got us through. I am grateful for the blessings my Dad received from his father and brothers and I am so grateful for a loving Heavenly Father that spared my Dad. I am in awe at my Mom who displayed more faith than anyone throughout this ordeal and always said 'when he wakes up' even in his bleakest hour. She is a true example of strength and love through trials and I hope I can be half as strong as her someday. I have said it before and will surely say it again but thank YOU. Thanks for the prayers, the calls, the texts, the gifts, the visits, the fasting and the thoughts. They have been received with so much gratitude. People are good and we have felt so much love and support. Lastly, thanks for supporting this blog and the kind words you have shared. Expressing true emotions to people without faces has been difficult for my sisters and I but we have felt such appreciation and love in return. For those of you in Idaho anticipating my Dad's return... Take care of him for me. Please remind him to take it slow and encourage him in his progress. He is so lucky and blessed to have such amazing people in his life. He will recover and he will prevail. After all, we did say from the beginning that this was just a 'stroke of bad luck'.







Monday, April 15, 2013

Another Step in the Journey

(Carlie)
Well as many of you may know, today has been one big day for Dad. He started with his therapies as usual. I only caught the tail end of his morning sessions, but I got the scoop later. Apparently dad has "graduated" out of occupational therapy, if you will. They did this exercise with him today where they had him hide some bean bags around the therapy gym. They told him that he would have to remember where he had placed them, because he would have to retrieve them later. Apparently he did not find this little activity worthy of his time. :) he griped the ENTiRE time about how stupid it was. As it turned out, it was a little stupid. He picked those bean bags back up no problem, one by one. This is great news though, even though Dad thought it was silly. It lets us know that the short term memory issues are getting better, and gives assurance that the progress will continue! After therapy in the afternoon Mom, Dad and I got all geared up for a highly anticipated outing! This was dad's first time outside the hospital in about a month and a half. It is truly hard to believe it has been that long. The U therapy team likes for patients to leave and integrate into the community at least once before discharging. It is good to see how dad will react in crowds, and if his basic skills are still intact. I'm happy to say that he did so wonderful. He got all dressed in his typical uniform (wranglers, button down shirt, and cowboy belt), and I couldn't believe how normal it all seemed. This whole scene brought about some interesting emotion in me. I admit, I cried like a baby when I saw my Dad standing there in his usual attire. I was so relieved, grateful, joyous, and maybe even a little sad all at once. It was so interesting because there was truly a time where I wasn't sure that I would ever see my dad the way I remembered him, again. But even though he looks the same, and sounds the same, I have to remind myself that things will probably never be the same. Let me preface this by saying that I am truly so humbled and grateful by the fact that dad is alive. I would have taken him in absolutely any state. He is doing so amazing and I would never dream of taking that for granted. However, there is a part of me today that realized that life for our family, particularly my Mom and Dad, is probably going to be very different. It is becoming very real because dad is heading home in a mere 48 hours. I worry so much about the adjustment to life once they return home. There is a very selfish part of me that will miss both my parents so deeply. I know that they want to go home, and I am so grateful they are returning to Idaho the way things are, but today I couldn't help but reflect on the past month. I wonder often about what the future will hold. I worry often about my dad and how he is coping with all of these changes in his life. As I was watching him today I couldn't help but feel a little sad that he is dealing with this. I am so aware of the way that things could have gone, but any injury of this magnitude comes with multiple layers of feelings. I am so proud of this man. I am amazed every single day by his attitude and spirit. How was I blessed with 2 of the strongest people I've ever known to raise me? I couldn't hold back a tear as I watched my mother guide dad through the huge dizzying sports store today. It was very indicative of their relationship to me. For so many years he guided her through the storms that life has held. Now I know that she will do the same for him. She will be there to hold him up when he needs just a little extra boost. I can't think of any other person in this world that is better suited to care for my dad and help him continue healing in the comfort of the place he loves most. I am sorry that this post was a little rambling. My parents have been heavy on my mind tonight, and I know that someday I will be so grateful that this blog exists to show us just how far we have all come.





















Sunday, April 14, 2013

Perspective


It is very easy to become frustrated after a major injury. It is so easy to remember the person you loved and wonder if you will ever get them back. It is even easier to think, "Why us"? and, "How can I ever deal with this horrible plate I have been served?" Even now, amidst all of the miracles we have seen and the amazing process we have made... it is easy to lose sight of of our journey. Looking ahead at the challenges of returning home can be daunting. Listening to Dad talk about riding his Harley and returning to work is a little heart breaking. Constantly reminding him to take his time, slow down and allow himself the summer to heal is an extremely tiresome process. This evening, my Mom and I took a jaunt back down the dark path of the last month. I'm ashamed to say that we have already forgotten. The horrible fear, dark prognoses, and excruciating pain have formed new and vulnerable scabs. We have willingly and gladly moved into the Rehab phase with hope for our future and a promise to accept our "new normal". That being said, revisiting the past has renewed our gratitude and wonder. We will get through this. I am absolutely convinced that Dad will eventually return to his old life, even if it is with slight deficits. The last three weeks have brought with it so much progression and strength. I know that the next three will do the same. I have sat and watched the cursor on my computer flash for five minutes wondering how I could possibly describe my feelings about the two videos below. The first was taken by my Uncle Ryan in the Neuro Critical Care Unit. It shows Dad standing for the first time since his stroke. We were so unbelievably proud. That moment showed such determination, but it also showed just how much this brain bleed had taken from him. As you can see, he is quite vacant and still living somewhere between here and "Limbo Land". 

video
video

The second video is Dad in therapy last week. I am so proud of him in this video. His balance is off, yes. He needs support to remain upright, yes. But look at him! He is attempting difficult tasks and remaining determined to complete them. I am happy to report that he is stronger today than he was then. He would still struggle with this particular therapy exercise, but not nearly as much. We have been so unbelievably blessed.

This weekend was great. Dad participated in multiple therapy activities as usual. He even baked a cake, did some dishes and played soccer with my Mom. His diet was upgraded to "general", meaning if you can eat it, so can he. He was moved rooms as he is no longer required to be video monitored. He is going on his first outing to a sports warehouse tomorrow so we can see how he functions in the world and around a crowd of people. He requested that Mom bring his wallet, so he can buy his own lunch. "I don't want to spend any of these people's money". :) Thanks for continuing to follow our journey. It's not over, but we are genuinely SO grateful for where we have been, where we are and where we are going. 

Friday, April 12, 2013

Let's Get Physical!

Dad got some serious cardio in today! Dad is a hard worker, but I've never known him to actually "work out." All of this cardio in physical therapy has got him breaking a mean sweat, especially after being down and out for a month. When I went with him to physical therapy we were able to go outside for a nice little jaunt! It was a beautiful day here in the city, and it was dad's first time walking a distance outside. The therapists really wanted him to get experience walking through different terrains. She intentionally had him moving over bark, rocks, and uneven dirt. This is especially important for dad because of the location of his house, and of course, his occupation. He did really well considering he hasn't been out in 5 weeks. As always, his balance is still a bit of an issue. He still can't walk 100% unassisted consistently. Pretty much the entire issue is balance. He tips to a side very easily, and he just has to be corrected by someone. Also, I am sure that a lot of the balance issue is related to the fact that he sees double! I'd say that would probably throw you off a bit while walking. Dad went really far, clear over to the U of U college of nursing, and school of pharmacy. He walked down and up 2 monstrous hills. I was so proud of him on this unfamiliar terrain! By the time he got up the massive hill, he was sweating and breathing like crazy! I was so pleased to see him working his heart and muscles again. I know it must be doing so much good for his body. Once we got back inside he still wasn't done. (His therapists are really hitting it hard in these last few sessions.) We played this game where the therapist and I stood one in front and one behind dad. He had to throw a big ball to his therapist and then turn around and throw it to me. This is still really tough for him. Going front and backward is very challenging for him balance wise. He was a trooper though, and he pushed himself hard to the very end. He was sweating and downing water like crazy. :) Occupational therapists are still working hard on his logic and problem solving skills. He did so awesome navigating maps today with Michelle. We also did a crossword puzzle that Dad just breezed through. Dad still states that "he doesn't want to go home stupid." This hurts my heart so much. I wish that he knew just how INCREDIBLE his recovery has been, and the limitations most who have had traumatic brain injuries live with forever. The therapist told me that he is doing amazing, and all of the things dad is dealing with are very typical. She says double vision and balance issues are super common. She told me that she sees him improving more and more when he goes home. I think that he is realizing that he may never be like he was. He told me today that he hopes everyone won't expect him to be exactly the same, because some things are harder for him now. I assured him that no one expected him to come back and be 100% the next day. I know that it will be difficult, but I hope that he can embrace his "new normal" and accept that his best is more than enough. A quick funny story about Dad. Che text me the last picture of him and told me that he is now hoarding salt. If you know my Dad, you know that he has always been a REAL salt lover. Because his stroke was hypertensive, he is on a sodium restricting diet. Che said that he opened up his bedside drawer to reveal a bunch of stockpiled salt packages. This guy, he is the limit. :) I got a great laugh out of it. He is the cutest.



















Thursday, April 11, 2013

Day 39!

I was about to write some snarky comment about how LOnG these 39 days have been, but I was immediately reminded of the family meeting with the neurologist on the heaven forsaken 'day 1' in which we were told it could be weeks or months before dad woke up (if ever). And look at us now! 39 days and headed home next Wednesday. Perspective, it's a beautiful thing. Rehab was status quo today. They are working him so hard lately. His days start at 7:30 and end around 4:00. After therapy today my Mom helped him to take a shower and shave his face. She is worried his hygiene will be lacking after this as he never wants to shower (but would you if some stranger followed you in every time?) He had a great attitude about it today though and I can see he is regaining some pride in his independence. Somehow I was even convinced to help cut his toenails, which is really saying something because 1) i hate feet more than anything and 2) my dad's feet are among the grossest I have ever seen. Mom has been so amazing through this process. She literally sits with him for 10-11 hours a day, cheers him through therapy, takes him to the bathroom, helps him shower and provides him with constant reassurance and love.

The doctors found a new infection starting around his feeding tube so they will be adding an antibiotic and running blood cultures to ensure this is not a big problem. Although eating entirely by mouth now (hooray for mechanical soft foods!) the feeding tube must be in place for 6 weeks for proper healing. By my calculations, this means we are at least three weeks away from removal. Tomorrow they want to take him for a walk outside. I am excited for him to see the sunshine again and breathe some fresh air.

We are all looking forward to next week. Dad is far less critical and much more independent. We are providing extra supports to ensure his safety at home (railings and such) but I know his healing will continue for months and even years.





Tuesday, April 9, 2013

Balance and blood clots

Today's main focus in therapy was Dad's balance. In his hurry to complete tasks, he tends to lose his center and often tips one way or the other. Luckily, someone is always by his side but we are very aware this will not always be the case. They are doing many exercises with him including making him walk sideways on a board while stepping over cones. Dad exclaimed many times throughout the routine 'I couldn't do this before the stroke!' It was clear once he got started though that it was beneficial to him. He struggled a lot with standing upright but improved each time they made him do it. Dad got a little frustrated after that and said he didn't want the therapists to tell the doctors that he wasn't doing a good job. His therapist assured him repeatedly that the routines are getting much harder for a reason and that if they continued to do the things that he is already good at he would plateau and stop making progress. That seems to appease him for a little while at least.

They came to scan his blood clots again today and found that they are largely the same. He has developed some new clotting in his right leg but the clots are aging and becoming more adhered to the vessel wall. This greatly decreases the chance of them dislodging and becoming a life threatening situation. We are grateful for this and hope that his body will start to degrade them over time. If not, we will deal with those as needed.

The double vision continues to be of great concern for Dad and he is convinced his balance would be greatly improved if he could see ( which I'm sure is true ). The doctors made him an appointment with a neuroopthomolgist to assess what can be done about the problem and to give us a better idea of the prognosis for his long term eye sight.

Dad is doing so amazing. Of course we are dealing with some discouraging deficits, but we are so aware of the many different ways this could have ended and we know there is much healing to be had in time. Dad and I discussed the last month at length today and I think he is just starting to understanding the grave nature of his brain bleed. He is so grateful to be alive and is so determined to return to his normal function. He is very aware of this blog and the support we have received through it. We have read some comments together and he is so appreciative of the support that has been shown not only to him but to his family. Thank you, genuinely. Our family will be forever grateful to everyone who has prayed, fasted, called, texted, sent treats or even positive thoughts our way. It has made a world of difference.