February 1, 2016
Everything is different. It's such a simple sentence, but it encompasses so much. No matter how hard you try to keep things positive, and I assure you that we all do, it's still hard to deal with how much has changed. Those changes ripple out, affecting us all. Sometimes it's just little things, like trying to stop yourself from asking inadvertently tactless questions about having seen something. Jay has, on occasion, taken those moments to conspiratorially reveal that he can't see. He does it not to be mean, but to ease the momentary awkwardness with laughter. Sometimes it's just looking into the eyes of those who love him and seeing a secret sadness reflected there. I'll never fully know whether this trait to dig in and push forward is born of our family, of an attitude of people who decided to settle in a land with a harsh winter, or if it's more likely part of the human spirit that we all possess.
The healing process occurs simultaneously with the grieving process. We must mourn what has been lost and not deny that there is sadness. This sadness does not erase the joys we find, for both must be experienced. It does not diminish the triumph of Jay's walking improving, or his joy in exercise as he works to rebuild. The sadness honors what we have lost in the same way that happiness celebrates what we have and what is gained. We look forward to all of the new breakthroughs that may await us, and we take comfort and pride in what has already been accomplished.
January 1, 2016
A new year is upon us, and 2015 dissipates into memory. That is the way it works with time, the present is so fleeting that by the moment you realize it's happening it's already gone. Some people choose to personify each year, giving praise or heaping blame on it for what has happened to them. In reality, it always boils down to our own perceptions. How we choose to react is what defines us in a world where we truly have control over so little. This new year has the potential for so many advances for our family, but it may also simply hold the course. Regardless of what happens, we have proven time and time again how we will respond.
Jay continues pushing to try and regain more. He often walks with two of his siblings, Conrad and Jeri (sometimes accompanied by his nieces Amy and Melinda). He has found a certain reprieve in these walks in that he can blend in. When his hands take hold of a shopping cart, he is suddenly just another person in the market. Any indication that he can not see is removed from the equation, and as his siblings guide the cart he can walk independently. It's a taste of freedom that was stolen, something so easily taken for granted. Regaining that mobility and ease of traversing the terrain is a skill that must be developed with his new limitations, and it is one he is literally making great strides in. And so we step into this new year, our hearts filled with hope.
December 1, 2015
As time passes and the family settles into their routines, the kids find a certain point of pride in being chosen to help their father, the others scrambling to do something sweet in their youthful exuberance to curry his favor while the "chosen one" tackles the specially appointed task at hand. Jay often finds himself the recipient of "help" that no doubt makes whatever he is doing more difficult, but he takes it in stride as any doting father would. In other words, things truly are moving towards a new normal.
Jay continues his therapy, and has begun supplementing it with additional walks at the mall. As winter has settled its frosty mantle across the land, indoor options are a necessity. He's tired of not working; for a man who put in long hours before, the waiting is beyond dull. We continue to hold out hope that he will have sudden drastic improvements and begin regaining his eyesight, but so far things have remained static.
November is a time to remember why we are thankful, although to be honest we've been feeling thankful for a lot longer than that. We surround ourselves with family, lay out a feast, and enjoy that simple togetherness that comes from it. Thanksgiving isn't just a day, its a state of being able to be celebrated and invoked any time of the year. We hope that you've had a wonderful month, and that you too find things within your life to be thankful for.
November 15, 2015
In the days that followed the interview, Jay was able to regain more of his memories. He had been talking with Fayth and voicing his concern about how much she was caring for him, fretting over all that she had to do now. She lovingly admonished him and reminded him of the fact that he had taken such good care of her for all three of their difficult pregnancies. Those words triggered something, and not only did he remember what she had suffered through, but he also recalled a conversation with a doctor telling him that he would soon be a father. Not remembering things like that have weighed heavily on him, and this provided so much hope. It was one of those moments that felt like a breakthrough.
This past Monday, my phone rang. When I answered, I was surprised to hear my uncle on the other end of the line. He had just remembered their phone number and address and wanted me to be the first to know. "To some people that may not be much, but to me it's a lot!" he said. I was incredibly touched, and I enthusiastically shared in his joy! We never know exactly what will help a memory surface, but watching them return is nothing short of miraculous.
The interview will be aired at 5:00 tomorrow (Nov. 16) pm on channel 10/13. It is important to Jay that people know that you can recover from tragedy. He knows that without rehab, and the support of his family, he wouldn't be where he is today. It is because of these things that he wanted to do the interview, wanted people who have suffered things unimaginable to know that they too could push forward and not only survive but flourish. It serves as a lesson to us all, no matter what we're going through in life: there is always hope and things can get better. In other words, we can't always choose what happens to us, but we can choose how we respond.
November 1, 2015
Being home is, without a doubt, restorative. There is a healing process going on in the shadows, and it's one that the entire family is influenced by. There is readjustment, and learning, as everyone starts to really live with a new set of circumstances. Some of it is straightforward, like modifications to the house to make life easier, while other parts are more tricky. Navigating the delicate world of parenting without vision is a challenge, especially when you can hear a commotion but can't see exactly what is happening, or who is involved in making it. Even with these complications, things are starting to fall back into the rhythm of life as everyone adapts.
Several major home renovations are complete now. The sidewalk has been widened to accommodate both walker and wheelchair, a set of front stairs with a gentler height difference between steps has been added, the bathroom has had a major overhaul but is still in progress, and the living room has been rearranged with furniture suited to the family's needs. Every alteration has been done to better accommodate Jay, while still providing a warm atmosphere for the kids to flourish in. These changes already have had significant impact, and in some cases have simply made things much safer (like handrails in the bathing area). These much needed improvements could not have happened without the generosity of so many people. Between funds raised at the benefit, and the hard work and expertise donated by some amazing individuals, the house is able to be a safe place for the family to grow and heal together. To say that we are grateful is an understatement. There are not enough words nor ways to properly thank everyone, but we try to make sure that everyone knows how incredibly appreciative we are.
Jay continues to go to rehab, and still wishes it was an every day event. While he was receiving rehab daily (excluding Sundays) at Miller Dwan, he much prefers therapy in his home town. Ava summed it up best while trick-or-treating, when she spontaneously said "I am glad my dad is home because Duluth is far away." The kids continue adjusting to the change, which is a lot to process for anyone but somehow seems even bigger when being dealt with by people so small. That said, they're doing remarkably well.
Today, the family gathered together and talked with Renee Passal in a news interview about how life has changed and what things are like now. The interview will air sometime this November, and we will post the time and date on this site as well as on Facebook when we know.
The kids were in and out of Jay's lap throughout the interview, and Fayth kept to the sidelines preferring to let the focus be on him and the family. They complement each other in that line of thought, as Jay repeated the sentiment that it was really all about his family. In the end, those words truly capture the essence of the ordeal we have gone through and the new life we approach. The lightning may have struck Ava and Jay alone, but it hit us all where it counts.
October 8, 2015
The 28th of June was a day that changed our lives. We found ourselves living with trauma that "only happens to other people;" it was an event that you hear about on the news and talk about with your friends over coffee, except that it actually happened to us and we didn't have the luxury of discussing it with the emotional detachment afforded to strangers. We lived every terrifying and heartbreaking moment, and we fought against so many things while wishing that somehow our sheer force of will could carry us all through. Over three months have passed, and we have shared this journey (that none of us wanted to be on) with you: our neighbors, friends, and family. You've walked with us, reading about what has happened, coming out to support us, and you've helped lift our spirits throughout this difficult time.
Therefore, I am incredibly pleased to be able to inform you that Jay is home at last. Snuggled close, much like on that fateful day, father and daughter have come through this ordeal together. Although many things have changed, some things remain the same. He may not be able to see, and his memory may have gaps, but the love for his family shines undeniably through it all. The journey towards recovery is a long one, but there is a certain delicious sweetness to coming home. Jay will continue rehab and will keep working towards regaining even more of what was lost. There will always be new challenges to face but we will face them like we have faced everything that has already happened. We will face whatever comes, together.
Thank you for caring, for reading, for donating (right now parts of the house are being retrofitted and redone to accommodate Jay's wheelchair), and for being with us throughout everything. If you want to visit, contact Fayth to arrange a good time. Don't be upset if he doesn't remember you; old memories have been trickling to the surface as he becomes reacquainted with his world. The best advice is simply to enjoy the time together, reminisce, chat, and visit with him.
On a personal note, I appreciate everyone that has come here to read this site, which was created hastily in the hospital while the crisis unfolded around us. I did my best to share as much information as possible while still respecting the dignity of my family, and I hope that it has helped keep everyone who was unable to be here well informed. As my uncle has returned home, the frequency of updates is going to slow dramatically (again). I will post an update on the first of the month, with the potential for random updates in between (and as has become standard practice, I'll update the original two Facebook posts so anyone who has subscribed or commented should receive a timely notice). I would also like to ask everyone to do what I have been doing: Be kind. Attend benefits (we have been; you have no idea how much it meant to us to see such a turnout and we want others to know how much they matter too). Hug those that you love. Life happens unexpectedly, so live yours well.
September 28, 2015
It's been said before, but it bears repeating, every week he seems more and more himself. Simple things like the turn of a phrase or a sentiment spoken, small things that would be easy to miss but hold so much promise and hope for more things to regain. It's a strange thing, having to learn a past you've lived but don't remember, and yet that is exactly what he must do. Huge life events, the passing of friends and family, and all the minutiae that make up the very essences of our lives compromise a great deal of what he's rediscovering. It's an ongoing process, and ultimately its been a near miraculous journey. There is much we still hope, wish, and pray for, but we stand amazed everyday when we look back at all that's happened.
September 21, 2015
Another week has come to pass, and perhaps the biggest change this time is attitude. When Conrad and Amy visited him in the morning, they were able to take him around the campus with the aid of a wheelchair. He went outside and felt the sun warming his skin while a breeze lazily made its way around the trio.
Jay is at a place in his therapy where he personally sees the value in what is happening. It's one thing to want and hope, it's another thing entirely to ascribe value and share those thoughts. When Jeri and Melinda visited, they asked how his therapy was going. He talked about walking, using the stairs, and sorting items by size, but he also expressed that "Sunday is bad because it's done. [I'm the] Only idiot who misses them yelling at you." Jeri asked him if he was enjoying it, and he replied with a grin "I don't know that I'm enjoying it, but I miss it." If he had his way, the therapy would be a nonstop activity as he knows it's the best way to regain much of what he's lost as well as make the transition to being home with his family easier. He was always a dedicated workaholic, and nothing about that has changed.
Rene, Jeff (her partner), her son Ben (Jay's nephew), Alan (Ben's father), and Conrad have been helping Fayth with some home renovation. They're tackling a big project: flooring. There is a lot to get done to prepare for Jay to come home, and Fayth wants as much done beforehand as possible so that when he does get to be there with them, they can just savor the time together without worry.
September 14, 2015
Time marches on, and we go plodding along with it. Therapies advance and alter, an ever adapting environment always pushing for just a little more. Sometimes those pushes are blatant and sometimes they no doubt are subtle, casual requests dropped into an activity in the form of a favor. However they're being done, they are working. The change in Jay from his first days there to now are phenomenal. There's always more to recover of course, but it's comforting to see the headway.
Jay was treated to homemade split pea soup made by his sister, Jeri. He polished off the entire bowl, all while joking around with her and Melinda. Sundays are good days for relaxing and reconnecting, and this last Sunday was no exception. In fact, he got an extra treat when his next visitors arrived, as Michelle had brought Maddie along for the visit. While Butch, Michelle, Amy, and Donna were there, it was clear that little Maddie stole the show. She sat next to him and he held her hand (obviously, it was an act that stole his heart). He kidded about the fact that they could all leave, but Maddie could stay there with him.
Fayth and the kids visit him every chance they can get which is quite a feat, especially with school being back in session. It's worthwhile, no matter the hassle or schedule juggling it might require. The time spent together is medicine in its own right, and that togetherness is something that they all need.
September 6, 2015
Being fortunate enough to be in a good rehab program doesn't equate into culinary delight, but thankfully for Jay "outside" food is a welcomed thing. As has become a Sunday ritual now, Jeri and Melinda brought in lunch. In the past he's been treated to pizza as well as steak, but this time his sister went all out and made him zucchini bread (with zucchinis grown by their sister, Rene), ham with potatoes au gratin, and rhubarb crumble. Somehow it seems good food flavors the day itself and the conversation flows around it.
In his own words, "They've got me biking, walking, and talking." The therapy continues forward, truly embodying the spirit of the fabled tortoise rather than the hare. No matter our desire, or his, for this to go quicker and "be done," it must go at its own pace. Truthfully, he's already come so very far and we continue to look forward to each new improvement as it is achieved.
Jay's memory is still not fully restored, and one of the things he doesn't remember is getting married. When Fayth was visiting with him, he told her that he wanted to marry her again so that he would have new memories of it happening. It's a beautiful sentiment, and perhaps in many ways it sums up so much of how we are learning to handle and cope with what has happened: we live life in spite of what took place and grab the sweetness from the world like fruit from a vine. There will always be sadness, always be things to grieve, but that can't stop us from finding reasons to celebrate. And what a celebration it will be!
August 30, 2015
Every week is a little better. These progress reports all come with their own unique ups and downs, but in the end the improvements are subtle and yet entirely obvious. Jay still has a lot to process and come to terms with regarding everything that has happened to him. In the blink of an eye his every day world changed and he woke up to an alien set of circumstances that was suddenly his life. Even with all of the negative, he still finds things to laugh about. Some days are better than others, but the point is simply that the fight forward continues.
Our visits with him are a mix of discussion about how things are going for him as well as a chance to reminisce about days gone by. We tell stories that sometimes elicit guffaws, just silly things that make up the tapestry of our life as a family. If laughter is the best medicine, then we try to get a full dose in each visit.
Our secret joys often manifest during those discussions, like when Jay identifies someone before they have a chance to announce their own name. Our standard greeting is always followed by saying who we are, so when he cuts one of us off to greet us by name it's hard not to grin. During his visit with Jeri and Melinda today, out of the blue he asked how John (his brother-in-law) was doing. Unprompted and spontaneous inquiries like that are also cause for celebration; we see more and more of him returning as time passes.
When Melinda told him that his girls had come to see her at work, but Ava wouldn't hug her until she had first hugged her stuffed puppy, Jay grinned and shared his own story. Ava had generously left that very same puppy with him overnight, an action that surprised everyone because she loves it so dearly. He guarded that pup carefully until he could give it back to her, surprising many people no doubt that a man such as he was toting and doting over a toy. As he pointed out while grinning affectionately, "I didn't want to lose it!" It is a selfless love, one that we all hope to demonstrate in our own ways. When we must part, we leave our love there with him. That love may not be a physical thing that can be held, but it is no less tangible than a puppy left behind by an adoring daughter. Each time we are able to again be together, that love that has been carried with him is returned to us. It is a cycle that simply defines family: a love shared no matter what.
August 23, 2015
Jay's third week of therapy has come to a close. Our progress report has a mix of ups and downs. The therapists are currently, officially, planning his therapy to prepare him to live as a blind person. He has cortical blindness, meaning that his blindness is being caused entirely from the damage caused by the stroke. We've mentioned before that his eyes are physically fine. Even though they are preparing him for blindness, we still hold out hope for spontaneous regeneration of sight as his brain has a longer chance to heal. This of course is disheartening for everyone, Jay especially. We don't want to seem ungrateful, asking for so many miracles but it's hard not to hope and pray for another one. We want him to see his children as they grow, to watch them get dressed up in their fancy clothes to attend their first dances, to simply get a chance to see their joys, sorrows, and silliness.
Jay's current memory is getting stronger. During a recent session with psych, he was asked to recall specific details about several sets of stories he had been told 10 days prior. He remembered quite a lot, which was incredible as he currently tends to remember his visits with family and not the finer points of his therapy.
Another milestone came with his coordination evaluation. The first one that they had him do was difficult. His ability to follow through with their commands and successfully physically complete each objective was just not happening, even though he tried his hardest. His current evaluation, on the other hand, was a smashing success. He did every single thing that they asked of him, like touching the heel of one foot to the knee of his other leg. It's progress, and we love seeing it!
The benefit was yesterday and it was absolutely touching. So many people came out to support the family and spend the day with us. The baseball games were gleefully competitive, pitting friends and family against one another for a chance at glory and prizes.
In the end, Harley was on the winning team. Before the final games were even played however, we had a halftime show like no other. Pies were auctioned off, and some particularly great-spirited people donned plastic trash bags to see just who in the crowd was going to win the honor of pitching a perfect pie. Our perfectly pleasant and often plucky people are listed in order of their pie participation.
Kerry Waschke Collie
As I listened to the laughter, I caught myself smiling thinking about how happy my uncle would be to hear that joyous sound being made in his honor, that his name should be synonymous with people having fun.
Ava may not have understood what it meant, but she was truly the cat's meow. She ran around the benefit at the Miner's seemingly oblivious to people's interest in her. She played games, had treats, danced to the music, and sometimes she even literally meowed.
As time passed, the line of hungry and generous people grew. We were soon amazed by all of the people who were attending. We are eternally blessed to be a part of a community that is so supportive. The Iron Range is a place like no other; the boundaries that define towns and separate us begin to blend and melt away until we are simply neighbors helping one another out. It is this spirit of camaraderie that defines the range and those people fortunate enough to have called it home.
Of course, there was more to offer than a hearty dinner, and the baked goodies were flying off the table. It didn't hurt that people were able to browse the confectionary delights while waiting in line for dinner. From cookies and pies to freshly baked breads, there was a plethora of options for even the most discerning amongst us.
Hailey had her face painted, but it was no where near as cute as her inadvertent ice cream goatee. She proudly walked her ice cream past all of the people waiting in line as she headed off for another round of fun in the kid's section. She was thrilled, having won several bouncy balls and a rubber toy snake while playing the various games that were set up.
The main arena filled with diners as well as wonderful folks perusing the auctions and raffles. There were so many things to bid on or drop a ticket into that taking a second walk around the circuit often revealed things overlooked on the first go round. Temptation was definitely had, from high end sports offerings to an actual 100% certifiably adorable puppy.
As the night wrapped up and the raffle winners were being called, lightning was tearing across the sky. Thunder rumbled in the background, mostly ignored by the revelers. The power went off suddenly, plunging everyone into darkness until the backup generator kicked in restoring a minimal amount of light. It was a sobering reminder of why we were all gathered under this roof. It wasn't about spaghetti, it wasn't about cupcakes, and it surely was not about prizes; it was all happening because of a storm just like the one raging above us, just one moment in the stream of time that changed everything. And much like Jay did on that fateful day in June, we ran through the rain to our cars like we have so many times in the past, except we now kept a wary eye turned towards the sky.
We want to thank everyone who came, who ate, who played, who left a card, or simply said words of encouragement. Your support has meant so much to all of us. We are beyond grateful.
August 21, 2015
The benefit is tomorrow, and we are looking forward to seeing everyone there. We just wanted to add a few updates to bring a little attention to some of the events and prizes. Who doesn't like a sneak peek?
There will be a Mini Carnival for the kids with lots of prizes and fun. Tickets are only a quarter, and nothing costs more than two tickets. The kids can't have all the fun though, so on to the adult prizes from the silent auctions and raffles! Raffle tickets have two categories, $1 and $5 per ticket (everything is color coded). Silent auctions will be clearly marked and there are some crazy offerings that may have some stiff competition in the bidding wars!
We have quite the mix of prizes. For example, here is a snowboard that has been autographed by Nate Bozung (a pro snowboarder) and here are two separate wing parties at Buffalo Wild Wings!
Perhaps you'd rather go after 6 Vikings DQ Club season tickets (with a parking pass) to have a real VIP experience. (We are talking sideline seats, luxury club room, complimentary food, beer, and wine 2 hours before kick off - going through the third quarter, and more.)
Football not your thing? That's okay, we also have 4 killer Twins box seats for October 3rd in the Legends Club. They come with a host of perks and even a parking pass. Maybe you rather slow it down, in which case a chartered half day of fishing for two on Lake Superior may be more your speed.
Maybe you've been looking for an excuse to have a party! If you win this, all you'll need to add is the people.
Didn't like anything I've listed? That's okay! We have so much more that it was impossible to list everything let alone get a fair sampling of all that we have to offer! Come on in and take a gander; you're bound to find something you'll want!
August 16, 2015
Our second weekly progress report has Jay making quite a bit of improvement. The therapists have him up and walking using a Sara Plus as well as a weighted walker. He ultimately walks a square corridor that totals over 400 feet! He's even done two laps, with appropriate breaks and therapist assistance.
His left hand does not have the strength or control of the right, and therefore occupational therapy has been working on improving its overall dexterity. He is purposefully using his left hand more for small tasks, rather than ignoring it, thanks to their work. We look forward to seeing even more advancements on this front.
He now remembers his visits and visitors much better than when he first began therapy. You've never seen a man who beams with such joy as when his children come to visit him. One of the hardest things, for all of them, is having to part each day. Harley asked if he could have a sleepover so that they could spend more time together.
Today, Conrad and Amy visited him in the morning and were able to stay through breakfast while Jeri and Melinda were able to come and stay through lunch. This is the first time since Jay entered therapy that his siblings (and nieces) have really had the opportunity to stay for very long. (His visits are entirely dependent on the discretion of the nurses and his ability to both tolerate and not over-tire during the activity. Staff and family must both be vigilant to make sure to not overstay what he can comfortably handle.)
Conrad (also known to his family as Butch) brought a variety of CDs for Jay to listen to, with the vast majority being heavy metal. Jay was quite pleased with that, and let him know that "Ozzy is always good." The music made an impression, because when Melinda visited later in the day and asked about his previous visit, he said "Uncle Butch brought music." This small statement is entirely phenomenal to us as it recognizes and identifies the family relations. Rather than simply say his brother's name, he tailored the familial title to Melinda's relationship with Butch, something that is so commonplace in our family we almost never give it a second thought... until today.
Jeri and Jay also had one of those poignant moments that is hard to capture properly in words. "Hi, Mikey." she said as she greeted her brother and affectionately patted his shoulder. Rather than leave it at that, he raised his arms and invited her in by saying "Here." She leaned in to hug him and for the first time since the day of that fateful storm he hugged her back and said "I love you." Unable to help it, she began to cry and told him through her tears that she loves him too. She tried to gently pull away, to prevent herself from fully giving in to those tears but he would have none of it. He pulled her closer to him, telling her "No, you're not done." He hugged her tighter, informing her that she didn't always need to be strong and that they both needed to cry sometimes. They held each other in this embrace, each finding solace. Because this is the kind of man that Jay is, stuck in rehab, fighting to regain things he never should have had to lose, and still wanting to help others and ease their pain.
August 13, 2015
We are only nine days from the benefit! So many kind hearted folks have banded together to make this double-event a great way to help the Mott's while spending a summer day having a ton of fun with your family (and ours). The morning of the 22nd at 9 am, registration at the Biondich/Lanari fields in Olcott Park in Virginia, MN will begin. The Virginia Little League is hosting a Round Robin series of games that start at 10 am and EVERY person who registers will get to play in their age bracket! The event is set to run until approximately 2 pm, so there is going to be plenty of time for everyone to play. There will be prizes for the top placing teams, silent auctions, more kid-friendly games, and a pie-throwing event! Yes, you read that right! Some pretty important people have stepped up to the plate and agreed to take one for the team (well, they've actually agreed to take as many as people can dish out... now that is team spirit)! Plus, all concession proceeds are also going to be donated!
An hour later, at 3pm, the second event gets under way at the Miner's Memorial Building! Four Horse Johnson will be playing from 3-5 pm. Eat in or take out, dinner will be an easy choice tonight with spaghetti, meatballs, salad, cheese bread, and even ice cream! Silent auctions, bucket raffles, and hourly raffles will all be happening! You don't need to be present to win, just make sure to practice your handwriting ahead of time so that you don't miss out! You'll also find even more kid-friendly activities and games, so bring the whole family. From face painting to cotton candy and a hearty dinner, it will be a blast!
There are moments the community just takes our breath away. So many people and businesses have chipped in offering donations, services, and discounts that it blows our collective minds. The Virginia Little League wanted to have shirts and baseballs to sell to help raise funds, and when they approached Bryan at Ink'd Graphix Plus he gave them quite a surprise. The business is donating 200 shirts so that 100% of the sale will go to help the family!
The shirts are only $10 and they come in a youth medium or large, with adults having a choice from small to 2X.
The baseballs are $5 each, cork and rubber core with nylon stitching and synthetic leather. They should play as good as they look!
You can pick one up at the game on the 22nd, or stop in at Ink'd Graphix Plus in downtown Virginia. Cash or checks (made out to the Mott Family) only please! They will be staying open later than normal tomorrow during the "Fuzzy Dice" Cruise Night, so feel free to stop in!
There are three little people who will be super excited to spot "their daddy's shirt" around town and at the benefit. So excited in fact, that they wanted to show off their new gear so everyone could see it!
August 9, 2015
Jay has been in rehab for a little over a week now, with Fayth attending nearly every session. His trach was swapped out for a smaller metal one known as a Jackson trach, but he was doing so well that even that was removed. The bandages are off and it is healing nicely; as he had found it highly irritating he's much happier now that it is out.
Some of his therapy is designed to strengthen his core muscles, some exercises build up the ones in his limbs, and some help him acclimate to actions once taken for granted. Using parallel bars and the assistance of his therapists, he was able to take a few steps so that they could gauge his current strengths and weaknesses to help tailor his program specifically to him. He is not yet ambulatory, and one of the goals is to eventually have him controlling his own mobility.
His work there is about more than building muscle strength, it is also about reestablishing the patterns and routines we all do without a second thought. Dressing in the morning, going about daily business, eating and drinking, showering and grooming, and preparing to turn in at night are all activities he must participate in. He has not yet returned to a normal sleep schedule, but by all accounts it is slowly getting better. This is one of the reasons the facility tries to stick with a stricter timetable. If every activity has a specific timeframe it occurs within, then times for rest and sleep begin to fit more appropriately into the routine.
When he first transitioned to rehab, his room was across from the nurses station and was quite small. He has now been moved to a larger room a short distance away, which will hopefully become more useful to him as his therapy progresses. He also has a radio in the room, so he can listen to some rock or whatever catches his interest at the moment. In the meantime, therapy plods forward with Jay making progress however and wherever he can.
July 31, 2015
Therapy is entirely different than trauma care. In so many ways the job of the staff is to help restore Jay to his former glory. Strength, mobility, dexterity, cognitive skills, and ultimately independence are all on the agenda. This also means a great deal of repetition because practice makes perfect. Therefore, updates are going to swap to weekly progress reports (of course interesting tidbits may come up and necessitate an unscheduled update).
Currently, his therapy team has decided that his visitations need to be strictly controlled and limited to aid in his rehabilitation. Visiting has been scheduled only for Sunday, and surprise visitors will be turned away, so please do not make the trip without checking first. For additional information please contact Fayth for details. We know you're all rooting for him, and eventually visitation limitations will ease up and you can let him know in person; in the meantime, we still appreciate your support from the sidelines!
July 30, 2015
The first day of therapy was super busy! In fact, because every day of therapy is going to be busy we need to stress that no visits will be allowed during therapy time. The staff is going to work on a visitor schedule to accommodate people as best they can, but the priority is on Jay's rehabilitation above all else. (More information will follow as we learn what will be optimal for him, so please no surprise visits!)
Jay got to meet the majority of his therapists. For continuity, they like to keep a patient working with the same set of professionals as much as possible, so he will build a better rapport and they can better track his progress. The therapies range greatly, from working at once simple tasks like getting dressed to using the parallel bars to briefly walk with therapist assistance. His first day was awesome but tiring! We anticipate great things for him.
July 29, 2015
Jay has his own inpatient therapy room now! We made the move halfway through the day so the rehabilitation officially gets underway tomorrow. The PMR doctor is estimating that he will have approximately 45-60 days of inpatient rehab ahead of him (that timeframe is subject to change in either direction). Jay will be doing a minimum of three hours of various rehab activities per day. He will work with PT (Physical Therapy), OT (Occupational Therapy), Speech Therapy, and Psychological Therapy who will all be working his cognitive abilities while also working on their own specialities. They anticipate a lot of advancements for him, but obviously can't predict the future.
Family will be allowed to visit after therapy hours, or on Sunday which is a day for resting. Prior to making the trip to visit, please make sure to contact Fayth to verify that he is not exhausted from therapy and is also willing to have guests. His room is quite cozy (read: small), so arranging visits in advance allows us to get him comfortably situated in a community room. We greatly appreciate your helping to make the visit enjoyable for Jay.
July 28, 2015
It didn't matter how excited we were to get to inpatient rehabilitation, it just wasn't meant to be for today. All of the beds there were full and so we continue on where we are. That said, it is time for another difficult discussion, but we want everyone to continue knowing how things really are.
So many people are thrilled to find out that Jay is going to rehab (and believe us, we are too), but the body is different than the mind; his body will be much easier to heal. Muscles grow weak and atrophy from disuse, and so many weeks spent in the ICU resulted in a dramatic loss of his muscle. Rehabilitation services will help build back his strength, but his time there will be to recover so much more. Jay has still not regained his vision. As near as we can currently tell, he doesn't see anything at all. Light, shadow, shapes, and everything else that creates our visual world does not exist for him. In entirely blunt phrasing, he is blind. We said it before, but it bears repeating, the stroke caused by the lightning strike damaged the portion of his brain that processes vision. His eyes are physically fine, but his brain is not processing any visual information. His world is blackness. Inpatient rehabilitation will be working to help him learn to live within the confines of this disability. We don't know if he will regain his vision, or any portion of his vision, but we do hold out hope that it spontaneously begins to heal.
The stroke has also affected other portions of his cognitive abilities. His memory still is coming back. There are days that he remembers the names of the people most close to him, and days that he does not. It is entirely hit or miss, and we try to take it in stride when he forgets what he knew as fact only yesterday. Thankfully, we have a good sense of humor as a group, but it can be hard nonetheless. Ages, milestones, important dates, births and more all blink in and out of his memory.
His speaking ability is still a work in progress. Some of what he says is clear but some of it is garbled and lost entirely in our inability to translate. He sometimes makes comments that do not seem to fit into the current conversation or scenario at hand. There are days we swear he is getting closer and closer to being his old self, and then there are the days where we barely understand anything and what we do makes no sense. We don't dwell long on those days; we don't write about them in painful detail because it IS painful. We want to focus on the positive, on healing, and on what we can get back. Those bad days exist. Those days are so very hard.
These realities trickle down to the children, no matter how hard we work to shield them from the brunt of it. We don't lie to them, but we try and discuss things as gently as possible. That doesn't stop them from making intuitive leaps to places we haven't broached with them yet. Earlier today, Harley brought up the fact that he doesn't think his dad will be able to go back to work. Hesitantly or hopefully he added, "Will he?" The cold hard truth of this is painfully simple: he won't be able to. If only we could look at this with the same spirit as Harley, who thoughtfully said he could have a Kool-aid stand to help make up for his dad not working. We hope that someday Jay gains his vision and more of his actual "self" back so that we can realistically look at returning to work as a viable option, but for now we have to face things as they truly are.
We want to lift our fists to the sky and scream in rage, seeking to find some place to lay our anger. We have been cheated out of so many things with this man; he surely does not deserve this in any form. Our hearts' clench in anguish to see him in bed, struggling to speak and be understood. It isn't fair, and that lack of fairness doesn't matter. It doesn't help anything to know it isn't fair, he won't get any better any faster because of it, and so we push what positive things we can rather than wrap ourselves in our sorrow. We know he will need us in this fight to gain as much of himself back as he can, and he needs our strength.
We still are amazed at how far we have come in one month's time, and how far we have left to go. We are going to continue being positive, excitedly sharing his progress and triumphs but also his tribulations. Our main focus will always be on what he has gained, but that does not mean that he has not lost. Thank you so much for following us on this journey and for keeping us in your hearts and prayers. There is still a long road ahead, and so much more work to do.
July 27, 2015
Real food is his at last! Jay's diet has been fully upgraded now, and he can even have thin liquids like water. He is doing so well medically that as long as they have the space they are scheduling his inpatient rehab to begin tomorrow! That's right, they'll pop off all of the tubes and sensors in order to send him off to the next phase with just the tracheostomy tube in. That too will eventually be unnecessary and allowed to close. No matter how you look at this, it's a leap forward! Granted, it's going to be a lot of hard work but we are ready to help however we can, even if it's just to let him know how impressed we are. We know that so much of this he will have to do on his own, but he won't have to do it alone... we'll be there however we can.
July 26, 2015
A little progress is being made every single day! We look forward to when it's leaps and bounds, but every step forward is one more step away from where we started. Jay has been doing so well adjusting to eating actual food again that he was able to have the feeding tube removed. He's much happier with it out! To commemorate the occasion, Fayth gave him a shave making his face all smooth and kissable (for her, not the nurses).
Another great step of progress was made by someone else! Ava announced she had to go potty and we went to use the real toilet! She was so proud of herself that she immediately went to tell her daddy. He got a big grin and said "Oh my gosh!"
July 25, 2015
No therapists came to work with Jay today, so he was able to spend some quality time with his family. The kids were all eager to tell him about their adventures or to try to do favors for him (even when he didn't need anything).
His appetite is improving. It's hard to say if it's because the food is getting better or if Fayth is behind every bite urging him on so that he can have the feeding tube removed. Either way, he's eating more and we like it!
The kids enjoy exploring the public areas of the hospital. From the skywalk, they were able to see a life size sculpture and they wanted to see it in person.
July 24, 2015
Speech therapy showed up bright and early with his breakfast. Today he was given eggs with cheese sauce and a puréed waffle along with orange juice. The act of eating is also a test of sorts, as speech therapy is always evaluating and deciding the best composition for his diet. He got upgraded to the NDD2 diet (soft, semi-solid food) based on how well he handled swallowing.
Immediately after physical therapy he had lunch from his upgraded diet menu. Cod, mixed veggies, apple juice, milk, and wild berry ice cream. Of course he didn't eat all of that, but he did sample his way through the meal. He doesn't find that anything is amazing flavor wise yet, so he keeps choosing different items from the menu. We hope that he will find something that he'll actually enjoy eating.
Jay was assessed today by a PMR doctor (Physical Medicine and Rehabilitation) to see if he was ready and would tolerate an intense inpatient rehabilitation program. They do three hours of therapy a day and the patient needs to be medically stable to be admitted. The doctor decided that he was definitely a good candidate for the program, and sometime next week, with medical approval, he can move to the next step in his recovery!
July 23, 2015
Guess who got out of the ICU again? After yet another busy day, Jay has "graduated" to intermediary care! He began the day with a vigorous session with Speech. She was grilling him, working on cognition and speaking as well as evaluating his eating and drinking abilities. She also ordered a modified barium swallow test. The Essentia Health - Heath Library describes how the patient eats or drinks food substances of different consistencies that have had barium mixed into them. A live-view x-ray allows the technicians to view the barium laced foods being swallowed, and then gauge any potential difficulties with the swallowing process in order to make modifications on what to eat and strategies to improve the act. We met with the speech therapist after the test and learned that it went very well. Jay gets to transition to actual foods again. His liquid will start at a nectar consistency and his foods will once more be puréed.
With everything clearly headed in the right direction, the doctor decided it was time for a room change. Jay won't enjoy the change much yet; after so much activity and therapies he decided a nap was in order. He's definitely earned a break!
July 22, 2015
Steps are not always measured in distance, but Jay took a few today... literally. During his physical therapy, he was able to stand while supported. They had him take a few steps forward and then a few steps back. This marks the first real time that he has been up and out of the bed, and he did brilliantly. No doubt his hard work was aided by a night of good rest. He was allowed to sleep, unrestrained, and he snoozed the night away. The only fly in the ointment is that somewhere along the way, he must have decided his feeding tube was irritating and he pulled it on his own. As the staff wanted to change the tube to a more comfortable smaller version, it wasn't a problem at all. Of course, being unencumbered no doubt improved the quality of his sleep!
The girls visited their dad during speech therapy, and were able to talk with him for a bit before they headed out with Gail and Melinda. The group explored Canal Park and then played along the shoreline in Leif Erikson Park. They collected rocks to take home and tossed twice as many back into the waves.
July 21, 2015
Fayth was telling Jay how Todd and Pollie were spoiling their dog. Upon hearing all of the "home rules" their pup was getting to break, he repeatedly punched his fist into his open hand in a threatening manner and then he grinned. That great attitude continued, and our spirits were bolstered when we actually got to talk to Jay later in the morning. Speech therapy came by to put his speaking valve in, and his good humor followed us. After several days of allowing his throat to heal, his voice sounded very nearly the way it had before all of this happened.
Fayth asked him, "Do you want company today?" "Never." he replied. With a small laugh, she said "Glad I married you then, because you have to visit with me!" Smiling cockily, he quipped, "Because the law says so!" Laughter filled the room and she jokingly said "You're lucky I love you!" "Yes I am." he affirmed, quite seriously.
Melinda offered to step out so the couple could have privacy if they wanted to have a more personal conversation. As she left she said to Fayth "Don't worry, I think he really likes you." Lifting his finger to his lips, he grinned and said "shhh".
During this phase of his recovery, we are requesting that if you want to visit to please inquire first. He may not want visitors immediately and we are doing our best to respect his wishes. Thank you again for all of your kindness and thoughtfulness.
July 20, 2015
What a busy day today! Jay spent four hours sitting up in an actual chair, taking on different positions to do his therapies. He didn't sleep much the night before so that much activity really tuckered him out. While it is awesome that he is getting a good workout in, he had speech therapy afterwards and he was too tired to do much with them. He was fitted with a Passy-Muir Valve, and according to their website the valve "redirects air flow through the vocal folds, mouth and nose enabling voice and improved communication." He was too tired to really take advantage of the speaking valve, but speech is going to be scheduled for his first medical visitation each day and we look forward to hearing whatever he may have to say.
He was also seen by Opthmalogy, and the doctor carefully examined his eyes and said that they appear to be functioning properly. He was not yet able to have a full vision test and won't until he is out of the ICU which leaves us with many questions. As it stands, we do not know if he is seeing anything in any portion of his vision. If the problem is stemming from the section of his brain that controls vision, then we need to continue waiting and learning while allowing his brain time to heal. Recovery is a slow process, but we keep moving forward.
July 19, 2015
Emotions twist and intertwine with their polar opposites. It is difficult to imagine being euphorically happy while simultaneously being heart wrenchingly sad, and yet we find we are able to do just that. We rejoice while we grieve, we laugh while we weep, and through it all we endure.
Last night, Jay had what the nurses refer to as a small "hiccup" in his progress. He vomited and most likely aspirated some of it which resulted in a restless night. Even though he was tired today, he still communicated (through hand squeezes, hand gestures, and nods as his tracheostomy currently prevents speaking). Harley got to visit with him today, and a few of his stories caused his dad to grin. Jay is starting to understand and deal with the emotional ramifications of what has happened to him. Prior to now, the sedation and various medications had the side effect of shielding him from this reality. We are overjoyed to see him becoming more aware and yet we wish we could do more to help him.
Fayth and Melinda had him laughing over their conversations. Something playing on the television got them talking about sharks and what they'd do if they were in a shark cage. Jokes about turning the ocean yellow (or worse, brown) were made. He found their antics to be quite amusing. Later in the evening Ava came to visit and the delight was written across his face and hers. She asked about some of the medical equipment being used, helped put lotion on his hand so he could have soft smooth skin, and regaled him with tales of her adventures.
July 18, 2015
Jay had a good day. It was a mix of rest, therapies, and visiting. We were treated to something we haven't experienced for awhile now; Jay has been teasing people. Jeri went to wake him up (the nurses want us to help keep him awake so that his sleep cycle allows for night sleep and wakeful days). When she shook his shoulder he scowled unhappily. She said, "You're not allowed to do that now, but when you get out of bed you can yell at me all you want!" His face just split into a huge grin, and everyone in the room (Jeri, Crystal and Andy [Fayth's aunt and uncle]) knew exactly what he was saying with that look.
There is an awesome benefit in the works! In fact, more people are coming together to make it bigger and better every day. We are incredibly grateful and amazed by all of the support. We found out that there is going to be a round robin baseball game, live music, silent auctions and more! In fact, you can also dine in or grab some of that delicious spaghetti to go. We hope to see you there!
July 17, 2015
Jay did very well with the tracheotomy in the morning. In fact he did so well that they were discussing having physical therapy come by later in the afternoon. It's really been a day of progress; he has been weaning from the vent and by the night's end he should be breathing room air on his own.
Today is also Harley's Birthday. Talk about a thoughtful young man, he wanted to have his birthday dinner at McDonald's. When we asked him what he wanted there, he said he wanted Chicken McNuggets because he could maybe win $250,000. What did he want to spend that sort of money on? He wanted to pay his dad's fees for the hospital. Like father, like son!
We were very touched by the actions of the nurses here in the hospital. They've been doing such a great job with Jay, but their care extends past him reaching the entire family. A balloon tied to a gift was delivered with the daily mail and it was addressed to Harley. Upon opening it, we found out the nurses had all signed the card and given him a present. It was completely unexpected and really quite sweet.
July 16, 2015
Today was a day of learning and decision making. Every choice we make is designed to help Jay and make healing easier. Of course, easier healing doesn't necessarily mean the decisions themselves are easy to make. We reviewed yesterday's events and knew none of us wanted to repeat any of it. While intubation does help him in so many ways, it's not a procedure that is good for his body. It's invasive and uncomfortable, ultimately able to cause harm (more so the more often it must happen). Jay did a fair job of swallowing, but not of protecting his airway through coughing. We don't want to be trapped in a cycle of getting out of the ICU only to return for intubation. That is not a step forward and it's not acceptable.
We decided that the right thing to do was to swap from intubation to a tracheostomy and we scheduled the tracheotomy for tomorrow. (The tracheotomy is the surgery to create the tracheostomy.) Initially, we wanted to reject this immediately but most of that had to do with our fears and misinformation. This is a temporary method to improve breathing and will actually allow Jay to advance faster. If he requires help coughing (until his muscles are strengthened), they can provide suction without having to go through the nose (which is painful) or do anything that will result in a return to the ICU. They also will be able to wean him more easily, or supply a little extra oxygen if he requires it. Ultimately, when he transitions past the point that it provides a beneficial service it can be removed and will only leave a small scar when it heals.
July 15, 2015
Recovery time is different than survival fear. We want you to know how things are for Jay and what it's actually like. While we see the progress and share it joyously, we base our feelings on what we saw when he came in. He was a man who was struck by lightning, and had no heart beat. We honestly didn't know if he would live. Death followed us in every shadow, and whispered worries in our ears when we slept, but it was not his time. Some of this will be difficult to read, and it is no less difficult to write.
He was a vibrant active man, full of love and generosity as well as having a quick tongue and a good sense of humor. It's hard to see him now in such a different situation. The quickest way to describe his current state of being is equal to a stroke victim with brain injury. This isn't exactly a surprise as he did suffer a small stroke when he was struck by the lightning. We do not yet know what exactly caused the stroke, only that it occurred. It has affected the area of his brain that controls eyesight. We don't know what he can actually see, if anything, but his pupils have been responding to light. One pupil is slower than the other, but we do not have an ophthalmology appointment yet to learn more. There is always a good chance he will regain some of his vision, but it is too early to make appropriate guesses.
We have explained before that a conversation with him is not defined in the same way as a normal conversation. He has Dysarthria. (The Mayo Clinic explains that "Dysarthria is a condition in which the muscles you use for speech are weak or you have difficulty controlling them. Dysarthria often is characterized by slurred or slow speech that can be difficult to understand.") In the ICU, prior to the therapists joining his active team, Jay had more rest and often was able to better articulate his speech. We have shared some of those exchanges with you in previous updates, but there is no simple or easy way to share those moments where everything is garbled. In truth, those are not the moments we want to focus on. Not being able to understand him, knowing he is trying to communicate but having no clue whatsoever what he is trying to say is difficult for all of us. His speech therapist is responsible for not only his speaking, his drinking evaluation, but also for cognitive therapy. Much like his speech, his memory is sharper and quicker when he is well rested. There are times that he makes connections and intuitive leaps (like when the story about Harley caused him to smile and proudly call his son his little buddy), there are other times where he can't remember names. As time progresses we will learn more and find the proper course of action for his recovery.
Physical therapy and Occupational therapy will be working with him to regain his mobility and ability to navigate day to day life skills. He has yet to be out of the bed, and while they have come to do their initial assessments, we do not yet know what their treatment plans will be. All of these therapies will be extremely tiring, challenging him at every turn while finding out what he has lost and what he can recover. At this point in time, we are still learning what has been affected and we have more questions than answers.
This is a long process. These words aren't said lightly, but they don't cover the scope of what we are facing. A doctor discussing recovery with us explained that after one and a half years we would see most of what he will regain, and at the two year mark we will have recovered the vast majority of whatever we are able. We have no real timelines, only ideas. We know eventually he will require more rehabilitation, and we have heard it will start as in-patient.
We wanted to share an image with you that is hard to look at. Fayth hates it, to her very core she hates it. The image embodies to her everything that has happened, everything that we are facing. It is for that exact reason that we feel we need to share it. We want you to truly understand what we are dealing with and how far we have come and how far we have yet to go. This was the hat that he was wearing when the lightning struck him and Ava.
Three steps forward, two steps back. We've just moved back into the ICU. It was a rough day. While he was doing well at many things, he was unable to cough and clear his throat. This triggered his gag reflex, resulting in vomiting and creating a dangerous potential for aspiration. This occurred three times, and it was decided it would be safer for him in the ICU where they can provide suction in ways that do not initiate the gag reflex.
Jay was having a hard time getting rest, and after vomiting and being unable to cough, all of these factors were causing unnecessary additional stress on his body. The doctor decided the best plan for him was to reintubate. As much as we hate this, we know it is what will help him and get us back to where we were. Three steps forward, two steps back... how we are starting to loathe that phrase, even though it's true.
With all of that said, remember, we are keeping it positive because this is the story about his recovery and not just a story of his tragedy. We are amazed, and continue to be amazed by his progress. All of your kindness has meant so much to us, and we continue to feel blessed by it.
July 14, 2015
Sixteen days of fear, worry, hope, tears, and hard work have led to this moment. Jay finally gets to leave the ICU! We are beyond excited even though we understand that there is a long road ahead of us. It is such a relief knowing that he is stable enough to transition into intermediary care. An overly simplified way to view this is that he goes from having one nurse who had a total of two patients, to having one nurse who cares for three.
For us, this step is monumental. It's proof that we are on safer ground now, but it doesn't mean that everything is "fine." Jay had a busy day with three therapists who needed to make their initial assessments. Speech therapy evaluated his drinking ability, and soon he will be treated to some puréed fruit and non-thickened water. He also got to do some controlled and limited movements for the other two therapists who will begin crafting a rehabilitation plan for him. Every step forward that we make, no matter how big or small, feels like a giant leap from that first day. We started this being worried about his survival, now we can focus on his recovery.
July 13, 2015
Today was a big day, especially for Ava. After two weeks and one day, she finally got to see her Daddy for the first time since all of this happened. She was a little tentative at first, but after he said "I love you, Ava!" and she replied "I love you too!" she felt better. Then she excitedly told him about her new toy pony. That said, it was still hard on her to see him lying in the bed with the monitors and IV. The reunion went well, and she visited him two more times before all of the kids went to play at Karol's.
Conversations with him aren't your standard conversation. He's tired, sedatives are still in his system, and sometimes he nods off while speaking. We still can't understand everything he says, but when we can it's pretty awesome to hear. Every day it seems to be getting a little better, and we love the progress.
Tomorrow may be a busy day; he is loosely scheduled for Speech Therapy, Physical Therapy, Occupational Therapy, and a drinking evaluation (after extubation, regular water for drinking easily goes down the "wrong tube" and often the course of action is to thicken liquids until the throat heals). We don't want to give anyone the wrong impression. This is still a battle, but the war has changed. He's got a long way to go, and we're going to be there every step of the way. Every day brings something new, and we are ready to meet each challenge head on.
July 12, 2015
At 8:30 am, Jay began a wean again. On the two week anniversary of arriving here, we will be extubating! We have a tentative time of 10:30 am for the process, but everything is fluid in a hospital setting.
10:54 am, the tube is out and he is resting! Sedation is being lowered slowly to allow him to come further into wakefulness.
10:17 pm, what an exciting day for us. He's doing very well and we are eagerly waiting to pass the first 24 hour mark off of the machines. His sedation has been lowered and adjusted, and he's becoming more and more aware. This is also a slow process, but one we are happy to be going through.
Fayth and Gail are spending the night with Jay, having sent the kids off with Melinda to Karol's house. They had pool time, jungle gym time, puddle jumping time, Lego time, pony time, doctoring time, and play time aplenty. The giggles and shrieks of delight are proof positive that they've had a good evening. We all have.
July 11, 2015
Jay spent the majority of the night in various stages of weaning. It's a strenuous activity while you're healing. Right now, his lungs have mostly cleared up and his numbers and output are good while he is inactive. Many factors come into play when deciding the best course of action for tube removal. We will continue the weaning process tomorrow after being allowed to take a break today.
Harley had two more baseball games this afternoon; unfortunately, they didn't go as well as the last one. Regardless, he's off having a fun start to his weekend with a sleepover. The girls are also having a sleepover of sorts. Karol, Jay's cousin, invited us into their home so that we could stay nearby but have a good place to rest. (That said, Jay isn't alone even then. Right now, Jeri is spending nights in the hospital.) Rather than sleep, the girls spent yesterday evening "feeding" Fayth and Melinda cookies, tea, doughnuts, and a host of other toy goodies. Hopefully tonight the sandman will visit everyone a bit earlier.
The girls donned masks and took turns doctoring anyone who crossed their path. An epidemic of broken arms and owwies flooded the waiting room. Thankfully, the girls were there to fix those bones in 15 minutes or less.
July 10, 2015
The doctor checked out Jay's numbers today and she is liking them! She's ordered his oxygen lowered and we might just be starting a wean tomorrow. You can't rush progress, even if you want to. (And boy do we all want to!)
Speaking of which, IT'S HAPPENING! Forget waiting! Jay is ready and we have started the process! He had been at 70% oxygen supplied, they dropped it to 60%, then 40%, and now it's just him pulling in that delicious air all on his own! The first weaning will run approximately two hours. (This is truly how slow days can suddenly ramp up, until the acceleration is startling. We are never sure exactly what to expect, but we're always eager for each new step.)
Harley had a game today with the traveling team. They had an incredible victory, but the real surprise was that all of the players were wearing hats with a tribute to Jay.
July 9, 2015
Today is a numbers game. The doctors are looking for what we like to think of as the "Goldilocks" setting. It's the perfect balance between sedation and assistance to allow for the right ratio of comfort and awareness so that we can keep on weaning. Unfortunately, finding it is more of an art than a science as what worked before isn't necessarily what will work now. That said, the tweaking and adjustments are narrowing it down. We had one of those good moments today, his nurse asked "How ya doing, boss?" In response, Jay gave the thumbs up signal.
Fayth spent the day with their children, working to make sure that they had as much normalcy as possible. Lunch was at McDonalds; playing in the PlayPlace, the kids had a fantastic time. Our day was wrapped up at Harley's baseball game. In a written for the movies moment, Harley leapt into the air and caught the game-saving ball.
July 8, 2015
Laughter and smiles are not betrayal. Sometimes they feel as though they might be; how can we possibly laugh when we're enduring something so all-encompassing and heart wrenching? We laugh because it keeps us strong, able to soothe Jay when he wakes from sedation agitated and confused. Those times when we take momentary respite from the emotional turmoil we have all been plunged into are what help us to stay the course throughout this journey. Our joys are not an insult, they are a tribute to this man we all love. We cry because we love him. We laugh for the same reason.
One of our visitors yesterday is a fellow coach. He brought a baseball for Jay, but it wasn't just an ordinary ball. The leather is worn and a streak of green colors its rugged face. This ball soared across the field, a young boy's first Grand Slam (with the bases loaded), and he wanted Jay to have it. Isaac F's game ball now holds a special place of honor in Jay's room. We know that not only will Jay be touched by this gift, but he is also going to be incredibly proud of Isaac's accomplishment.
The kids had a great time attending the double header softball/baseball game at the South Grove fields in Mountain Iron yesterday. You honor us so deeply with your support and caring and we are grateful. We wish we all could have been there, cheering in the stands with you.
July 7, 2015
Jay's lungs are doing what they're supposed to right now: healing. This of course means there is little in the way of updates to share. Sometimes no news really is good news. He is resting comfortably, and we are eagerly awaiting the go-ahead on the next weaning.
Ava had a checkup today. Her once angry looking burns are now promising to perhaps someday fade away. The doctor believes they are healed well enough now to no longer require a gauze covering. That little girl is really quite amazing; to look at her, you would never know what she had been through unless you knew what had happened. She looks like any other spunky kid, a little banged up, but ready to play hard and enjoy the summer.
Many things have surprised us with the outpouring of support from the community, but it really holds a special place in our hearts when kids spontaneously are generous. After the Calithumpian parade on the fourth, paper "money" was scattered around Olcott Park, in Virginia, for the kids to find and later spend auction style on various prizes. A group of 5 children pooled their findings to win and "pay" for a slip and slide. They didn't want it for themselves; they wanted to give it to their friends because their dad is in the ICU. What a beautiful world we live in.
This photo was texted to us (used with permission), and it shows off some very thoughtful people!
Kids from left to right are: Noah M., Levi F., Issac F., Kaari H. and Wade H.
July 6, 2015
The clock in the waiting room loudly ticks, counting out seconds that seem to stretch into entire lifetimes while you're waiting. Jay is being reintubated and at this moment we wait... There is always so much waiting.
We don't want to call this a setback, as everything is designed to give Jay an edge. Instead, we want to call yesterday a sneak preview. Having the tube out, he was able to get a good start at clearing out his lungs by sitting fully upright and coughing. We were able to talk with him and that is something that warmed our hearts tremendously. Putting the tube back in is going to let him rest and repair.
We are already seeing an improvement! Yesterday's time off truly allowed his lungs to break up the secretions, and they are now getting a lot out! This is excellent news; the next weaning will have the incredible advantage of increased lung capacity.
We have also added two new areas on the site. At the top of the page you will see a link entitled: "EVENTS." As we learn of fundraisers and events that are being hosted in his honor, we will share them here. Feel free to check out the "WHO HE IS" section; you might just learn something about him that you didn't know.
July 5, 2015
We have taken a monumental step today! Exactly one week after all of this began, Jay has been extubated! They spent the morning weaning him (even while he slept) and decided he was definitely ready for it to come out.
Every joy also brings its own set of unique challenges. His voice is hoarse after having the tube pushed between his vocal cords, and while he wants to tell us things it is sometimes difficult to understand him because of this. In no uncertain terms he lets us know that he does not like the thick canula in his nose that is helping to deliver additional oxygen. In fact he doesn't like any of the medical devices, and who can blame him really? Even though he is the one doing the real work, it is heart breaking to not be able to just do what he asks of us and remove all of that "stuff." Instead, we do our best to make sure he is comfortable, soothe his worries, and give him as many assurances as we can. He still is under the effects of sedation, but it does not lessen his frustration. He's got one heck of a fighting spirit and it shows!
July 4, 2015
It's a story for many of you because you're reading it, but for us it's our lives. I try to wrap it up nicely and give you all the same sense of hope and joy we have with every improvement, but living with it is tough. In these write ups, I gloss over the exhaustion, the moments of fear that sometimes fill us, and a look that haunts all of our eyes. We do our best to stay upbeat, but we are human and we sometimes wear weary faces.
This morning, Fayth stopped at the hotel that we have been fortunate enough to have had vouchers for, in order to wake the kids up. She also had to change Ava's bandages on her burns. Although it hurts less and less each time, and her skin is growing back, the actual act of changing the bandage is scary for Ava. To help her feel comfortable, Fayth began to sing: "Check your ears, check your eyes, find out how much you've grown!" Singing the Doc McStuffins song while she changed the gauze pads made the little girl quite tickled and the bandage change was done before she knew it.
Today was one of those days where we felt a bit sheepish. For a great portion of the day, Jay has been reaching his hand towards his face, and we've gently admonished, reminded, and repeated that he has to just leave the tube alone until it's done doing its job. Even still, he persisted in moving his hand towards it. Eventually, the nurse came in and said, "Jay I'm going to let your hand free so you can do what you want, but you can't pull at the tube, okay?" (Intubated people are restrained as our natural instinct is to pull the tube out because it's uncomfortable and does not "belong.") He slowly and deliberately moved his hand towards his face, ever closer to the tube... And do you know what he did? Did he pull at the tube, or even touch it? No, instead he indicated that he wanted his nose scratched and we all felt foolish because he had been trying to scratch it for a few hours now! Whoops!
The kids got a much needed escape today. Amy, Melinda, Michelle (Jay's niece) with her daughter Maddie, and Donna (Jay's sister-in-law), took all three kids to the carnival at the DECC. Harley and Hailey ran Amy around the midway, stopping at one ride after another until she was well and truly tired out. They seemed like they could just run forever, but sleep should come early tonight. Little Miss Ava had Melinda riding the Merry-Go-Round nonstop. Round and round it went, her screams of yee-haw mixing into the carnival music while her tiny fist thrust triumphantly into the air. Those ponies were slapped on their rumps being urged to go faster and faster and their manes were patted as they were told what good ponies they were. She whinnied like a horse, she blew her trumpet, and she had an absolute blast.
In situations like these, you need to take humor where you can find it. Maybe it's the sleep deprivation, but we all found this to be hilarious. Fayth even said we had to share it as she left the room in a fit of giggles. This is the Tale of the Seventh Floor:
Jeri was sitting with her brother in his room when the nurse, now affectionately known as the "Evil Nurse," came in and asked if she needed anything. Although Jeri said that she didn't, the Evil Nurse knew that she had been there every night and so she simply said "I know just what you need and I'll be back in a minute." Like a fairy godmother in a fairytale, she returned with a swag bag full of such fantastical items as mythic slippers, an elixir of Lubriderm, various powders, and other implements of showering. "I bet you'd like a shower!" she said cheerfully! To which Jeri laughingly replied, "Is it that bad that you can tell I need one?" "Hahaha," chuckled the Evil Nurse, "I do know that it will make you feel very good; we have a date for 11:15." Just as the clock turned to the 15th minute, Fayth returned from tucking the kids in, and Jeri made her way with the Evil Nurse to the elevators. The doors opened, revealing the seventh floor. It looked like any other floor until the pair made their way left and our tale takes a new and frightening twist. Light was shining dimly onto walls painted a sickly shade of green, and a sense of unease took hold in Jeri's thoughts. If there is a formula for "scary hospital scene" this was surely it. As they proceeded down the hall, a man watched them with knowing eyes. The Evil Nurse asked him if he'd "prepared" the room. He nodded his head, never saying a word. She then turned to Jeri and exclaimed "Oh, that's a beautiful necklace." Instantly, Jeri thought of how murder mystery shows always focus on a little detail piece so you know who was murdered, and her worry grew. They turned another corner and the hallway became darker still. They walked further and further into the shadows, finally taking the last door on the right (thankfully it wasn't the last on the left, too many scary movies with titles like that). The Evil Nurse revealed a bathroom that seemed typical, except for being in the scariest place ever. The room was small, and the Evil Nurse showed Jeri where everything was and then she left her... in the creepy place... alone. Jeri locked the door. She double checked the knob to make sure it was really locked. She pressed her ear against the door and strained to hear if anybody was outside. Then she moved the heavy garbage can against the door, knowing it would make quite a racket if someone managed to get in the room. She started getting ready for her shower, her mind racing she wondered if she should call her daughter, Melinda, just in case she was attacked someone would know. She talked herself out of it, even though she was on edge. Then she seriously debated showering with her clothes on because she didn't want to be attacked in the buff. She steeled her nerves and began taking a proper shower. Just as it seemed like maybe things would be okay, her arm bumped the stiff shower curtain which rattled menacingly. In fear, she stuck her head out of the shower but it was clear no one had come in. She checked three more times just in case, then hurriedly finished her shower. She officially had the creeps and about jumped out of her skin when someone knocked on the door. "One minute!" she called out, then stalled for time. She didn't want to open the door and hoped whoever it was would get bored and leave, until she decided she was probably safe because most bad-guys don't knock. Even still, she pressed her ear to the door again but couldn't hear anyone there. She cautiously opened it, looked both ways, entirely sure someone was going to jump out and get her. She left as quickly as she could, casting furtive glances behind in case someone was going to sneak up. At last, she made it to the end of the hall only to watch a man walk towards her from the end of a connecting hallway. They walked together, silently, with her peeking at him from the corner of her eye. They go to the same elevator. They go to the same floor, but she wisely let him lead so he couldn't follow her. As she went to turn, she looked at him and he faded into nothingness. Just kidding, he was a real random person, but for how worked up she was it would have been fitting. To cap this story off, later when Melinda and Fayth were discussing today's updates for the post, Melinda offered to bring Fayth to the Seventh Floor so she could see it for herself. With a huge laugh, she emphatically said "No!"
We hope you all had a safe and happy Fourth of July.
July 3, 2015
Every day brings new medical tests and new ups and downs. It is like being in a constant state of "hurry up and wait." Our emotions are fluid and we can go so swiftly from anxious to relieved and right back again.
One of the tests we were waiting on today was the TEE. According to heart.org: "Transesophageal echocardiography (TEE) is a test that produces pictures of your heart. TEE uses high-frequency sound waves (ultrasound) to make detailed pictures of your heart and the arteries that lead to and from it." The test results revealed no clots and no aneurysms! This just further cements in our minds the strength of his heart.
Still intubated, we are in the process of weaning him from the ventilation. We progressed from his initializing the breath with the machine performing the follow through, to his pulling the entire breath on his own. He has spent roughly 6 hours (possibly more now) breathing without the aid of the machine. His lungs are getting stronger and we hope soon that he can be extubated.
Jay always has someone there with him. To say we are a close knit family is an extreme understatement. Around the clock, no matter the hour, if we are able to be in the room we are by his side. Fayth spends as much time as she can with him, but also must split those precious moments with their children. Although the kids often sneak out of bed to continue their slumber party with Melinda, they demand Fayth's presence for bedtime snuggles before she heads back to the ICU.
Today we had another breakthrough; Jay was able to firmly squeeze Fayth's hand. It's hard to imagine such a small action bringing such happy tears...
"Do you love me? Squeeze my hand if you do."
She asked "Was that a squeeze, honey?"
And he nodded his head yes.
July 2, 2015
Every day we learn new things and uncover more questions. The cardiologists say that Jay's heart is strong and steady, and is no longer a primary concern. While they'll still be on hand, of course, we won't be seeing them as much.
Part of our main focus medically right now, is helping his brain heal from the injury he suffered. We don't know yet the extent of his injuries as this is a slow process and there is no rushing healing. It will happen at the pace it needs to, no matter how much we all want it to be speedy.
Jay is still intubated, and therefore is unable to attempt speaking. That said, we had a "conversation" with him today! Prior to this he had not "spoken" in front of his medical team, but they were present for this one and there was no mistaking his intent. His sister, Jeri, was asking him questions.
"Are you hot?" Yes, he nodded.
"Do you want a wet wash cloth on your head?" He shook his head no.
"Do you mean no?" He nodded his head affirmatively.
"If you don't want the washcloth on your head, blink." He blinked.
"Was that a blink?" Another head nod to say yes.
"Give me a thumbs up." He lifted his fist up, but his thumb didn't move.
"Is that a thumbs up?" He nodded yes once and we have all spent the day with our spirits' bolstered by this exchange. He's a strong man and we know he is doing his best, fighting to get better.
His niece, Amy, along with Hailey (his daughter) made a Coach Jay bear, AKA "Coach Crabby." Not only does Jay coach little league, but he also coaches T-ball where the little tykes affectionately know they have to listen or Coach Crabby is going to come out. It's incredibly amusing to see such little people happily looking up at the big man and calling him Coach Crabby right to his face. He always plays along.
Even though Ava has been discharged, we wanted to share a little more of her time in the hospital with you. When she looked up from her hospital bed, she could see stars in the tiles.
She looked so very small in such a big bed, and it only made us want to snuggle her close and keep her safe.
Of course, it's impossible to keep her still for long when the world still has so much to see and explore. The trio of siblings enjoyed looking out into the Duluth sky, excitedly watching the lights shimmer across the lake and discovering that some lights were actually signals directing traffic.
She really enjoyed the "squish" of the playdoh, and we spent a good amount of time making pizzas and cutting out shapes.
After she was discharged, our activities changed as did our scenery. The kids have enjoyed watching sailboats and big ships coming through. There is lots of coloring, games, puzzles, and play time. Sometimes they get out to go have fun with their friends. Kids need to be kids after all!
Conrad, Jay's brother did an interview on ABC channel 10/13 locally. We know not everyone can make it to the site and we wanted them to know how much they're appreciated.
For now, we're taking it slow, spending time with Jay. Thank you for spending your time with us reading our updates and sending your well-wishes.
June 28 - July 1, 2015
It seemed like any other day, storm clouds rolling through, a baseball game postponed in hopes that the rain would stop so summer activity could resume as normal. Jay and Ava were quickly making their way from the pavilion to the van. She was cold and overwhelmed by the thunder, and the van seemed like a better shelter. Fayth was waiting in the passenger seat, watching them make their way to her when the lightning struck both father and daughter and changed all of our lives.
What happened next was a blur of activity. People came running to help, and those people made all of the difference in where we are now. Ava had been thrown into the air from the lightning's impact, although injured and dazed she was conscious. Jay was not, and immediately CPR was administered and maintained until the ambulances could arrive and take over. I can't tell you how many people helped, or the names of each person, but know that they all hold a special place in our hearts and we are ever so grateful.
Both Ava and Jay were able to go to the same hospital and share the same floor for their recovery. Their injuries are taking them both along different paths. Ava has been more fortunate in many ways, as Jay truly took the brunt of the damage. If this random bolt of lightning had to strike, if all of this had to happen, Jay wouldn't have had it any other way. His kids are his world, and he would endure anything to keep them healthy and safe.
Ava has been under observation for the last two nights and we are pleased to be able to share the fact that she was well enough to be discharged yesterday. She was not a fan of the "stickers" (the adhesive pads) with their cords that connected to the beeping machines, and although she tolerated the i.v. she isn't going to miss it one bit. I can't properly tell you how heartwarming it was to see her untethered from all of that medical machinery and playing in the toy room at the hospital. For a little bit, she got to forget everything and just be a little kid playing again. Her big brother and sister, Harley and Hailey, are being such good helpers. They encourage her and play with her. It's a blessing they have each other.
Ava's arm is in a splint from a previous fall; the poor girl had just had her cast removed after breaking her elbow. She has first and second degree burns from the lightning under one arm, which will take some time to heal. She also received minor burns on each of her legs.
Jay's progress has been far more tumultuous. He was transferred from Hibbing to Duluth. When we first got here to the hospital he suffered multiple cardiac arrests and his heartbeat was restored each time with defibrillation. His heart has been stabilized since then. He has undergone many many tests since we arrived.
Today has been an amazing day. His sedation was decreased and although he is intubated he was able to breathe on his own. The doctor asked him to move his fingers and toes, but he was not able. When the doctor asked him to nod if he could hear him, he nodded four times. When asked if he wanted them to turn on the fan (he was hot to touch) he nodded yes strongly. When asked if he wanted a pillow to be moved from under his foot (he kept wriggling trying to get comfortable) he nodded yes, the pillow was removed, and he laid comfortably. We know we aren't out of the woods yet and we have much ahead of us (and still so much we do not know), but this has lifted our spirits tremendously!
We have been incredibly touched by all of the support that has been flowing in from not only our friends and family, but the community and folks from all over. Although Fayth wishes she could respond to each and every one of you, she's very understandably being kept quite busy. Instead, to help share and keep everyone updated, she has me (Melinda Brooks, their niece) managing and writing about our journey. You are welcome to leave your messages and well wishes on facebook, we can't respond to everything but reading them brings so much comfort. We appreciate you and know that you share in our worry.
Those of you who know Jay and Fayth personally know that they'd be the last people to want to accept charity, but the first to give it. Under normal circumstances, they would just soldier on, but this isn't the sort of situation you can really anticipate being in. I am sure when he wakes up, we're going to get an earful but if you want to make a donation to help cover our medical expenses and unexpected costs we are encountering as we try to cope with this please donate here:
Soon we should have an address if you want to donate directly to the bank. We will let you know when that is set up.
All money will go to an account in Fayth's name so that she can use it as needed. If you've already donated to the Mott Family gofundme, don't worry that's just fine and we appreciate your help! We are also using Paypal alone now because the fees are only for processing the transaction and are unavoidable with credit cards.
We will be updating this as often as we can. Thank you for thinking of us, you really don't know how much your kindness has helped.Help the Motts
Helping the Motts