Kind. Genuine. Compassionate. Loyal. Strong. Loving. Brave. Adventurous. Generous. And, a smile that brightens any room. Alone, these are all just adjectives or descriptors. Together, these make up the wonderful human being who is my brother, Matt Clark, a 31-year-old, active young man.

September 30, 2020

We’ve got Goals! Goals! Goals! Holding and drinking a tall glass of water. Holding - using hands, gripping the glass. Drinking - the instant refresh ice cold water brings you when it hits your mouth. This combination of holding and drinking a tall glass of water is one of our many goals. In the meantime, Matt negotiated to have a Camelback and a Hydro Flask filled with ice bedside to quench his thirst.

Almost every day in September me and Matt started our day by sharing the top three things we were grateful for. Support, Family, and Friends were consistently in the mix from Matt. See attached Word Cloud for all the gratitudes from the month, with the repeats being larger and bolder.

Matt’s done really well at Camp VMC for the last couple weeks. No surprise, he made friends with all the amazing VMC medical staff. His feeding tube was removed and he slowly progressed through purées to modified solids and no diet restrictions yay! And, Matt certainly hasn’t lost his sense of humor. He’s continually made bets and bargained with hospital staff for special food or snacks. He may or may not have called in reinforcements from friends doordashing treats for his first bites post clearance from the docs for solids. In true Matt fashion as the loyal Burrito Ambassador he is, Chipotle was his first meal of choice.

Matt also graduated and no longer needs assistance with the ventilator and if all continues to go well, his trach will be removed soon. The one thing that is holding him up right now is a pain in his a**, a bed sore from his ICU stay, just above his sacrum. Sigh...........

Over the last couple weeks we embarked on another journey as a family looking at Matt’s options for his physical rehabilitation. The last several weeks at Camp VMC have been solely dedicated to Matt’s respiratory rehab and with the amazing team of VMC medical professionals Matt is ready to move on to the next phase, physical rehab. Sparing you the painstakingly long version, Matt was in a fortunate position to be able to choose to either stay at VMC or go to Craig Hospital in Denver, Colorado for his physical rehabilitation. Both are top medical institutions for spinal cord injury recovery in the U.S.

After many family conversations, discussions, weighing the pros and cons, talking to alum of both programs, and endless conversations with insurance, Matt, with the support of our family, decided he wants to pursue his physical rehab at Craig Hospital in Denver. One of a few deciding factors is that he’ll be able to have the support of my parents in-person throughout his rehab. Up until this point, this has not been possible except for two quick visits when Matt was nearing the end of his stay in the ICU at Sutter Hospital.

So, off to Craig we go. Today, Matt was transported via air ambulance with my mum. I can only imagine how comforting it was for my brother to not only see, be with, and fly with my mum, but also have the reassurance that she’s a legit and seasoned life flight medical professional. While traveling in Europe on our honeymoon, my husband and I ran into a couple of docs from Stanford. I shared my mum did life flight for Stanford Labor and Delivery. Their response which I will never forget, “wow, those life flight people are legends, we always let them cut in line in the cafeteria.” #jobperks My dad is taking a later flight out and will join them later this evening.

Matt will be in Colorado, we hope through the better part of December. The longer, the better. The longer, the stronger he’ll be. The longer, the more opportunities he’ll have to be exposed to and learn new things. Matt is excited to begin this next phase of his rehab and we are all excited my parents will be able to be there in-person to cheer him on and support him in any way possible.

Over and out,

Colorado Clark Crew

September 5, 2020

Camp VMC

Today, marks the start of a new chapter of what we’re calling “Camp VMC,” the acronym for Valley Medical Center in Santa Clara where Matt will be starting his rehabilitative journey.

Matt had a stable week with an upward trajectory of progress which allowed the transport today to happen. This past week he spent more and more time in the chair upright and less and less time on the vent with lowered settings. Yay! He also received his voice box trach which allowed him to communicate with us and medical staff via a soft whisper. This meant less lip reading, guessing, and corresponding eye rolling from Matt when we weren’t even close to figuring out what he was trying to say.

On Wednesday, I welcomed the surprise midday FaceTime call from Matt. It was the first time I was able to talk to him with his voice box trach. I was in the middle of juggling my remote work “new normal” and simultaneously trying to solve a mystery. The “golf gang” had received an email from Setton Farms California Pistachios located in Terra Bella, California, who generously offered to be a towel sponsor at Matt’s upcoming golf tournament. After doing a quick inventory, we confirmed nobody knew anyone from that area and we had no idea about the very welcomed and appreciated connection. I exclaimed to Matt, “perfect timing, you can talk now, can you tell me about the nut farm outside Bakersfield and how they know you?” He laughed, shared it was a connection from a former co-worker, and chuckled “NUTS on CLARK!” If you’ve ever visited Chicago or transited through one of its area airports, you know about this famous nut shop. It’s basically an inside family joke beginning when we were young because we never made it to try the NUTS on CLARK despite everyone telling us we had to try them, especially given our last name. I ended the call by blowing him a kiss. Matt blew a kiss back moving his arm/forearm and wrist up to his mouth and making the gesture several times. Mystery solved, a laugh, and a perfect end to our call.

Between being able to talk with the voice box and also squeezing in a couple more unexpected visits with my parents, Matt was all ready to head off to camp this morning and begin this next chapter.

The Clarks know how to do camps. From soccer to football, Boy Scouts and even golf camp, we’ve done it all. Camps are where you learn new skills, meet new people, and embark on new adventures, and this camp, the most important camp of Matt’s new life, will be no different. VMC gave my parents the run down and the ins and outs of what to expect at camp. We were given lists of necessities to set Matt up for success - shoes w/no ties, workout attire, and a few “comforts from home.” Mum packed his bag, labeling his clothes, making sure he had all he needed, and more. First, Matt will start in the speciality rehabilitative trach unit while integrating some physical rehab where he can tolerate it. The goal of phase one of camp is to get rid of the trach by building up Matt’s breathing strength and then he can move on to the more rigorous physical phases of camp.

Undoubtedly, it will be a daily battle requiring both mental and physical strength, but as everyone says, if anyone can do it, it is Matt Clark, and we’ll make sure to remind him of his incredible community of supporters who will be there for him along the way. #rally4clark #clarkstrong

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Message from Mum:

Matthew Clark & Family Gratitudes

In true Matthew style- Can I hear a Loud AMEN for the Army of Prayer Warriors and love across religions:

Refuah Shlema; Mi Shebarach prayers

2 Timothy 1:7

The Holy Sacrifice of the Mass on September 12, at 8am -Church of the Nativity (Menlo Park, California)

August 29, 2020

In The Flesh...

Today was a great day and a great end to a not so great week...we (my parents) got to see my brother IN THE FLESH...at the hospital!

As you recall, last Saturday (tomorrow) marks a week since he had his tracheotomy. Saturday night was hard and by hard I mean absolutely horrible. Our greatest fears about how Matt would wake up from his medically induced coma, alone, in an unfamiliar setting, and face the cold hard reality of his current condition and future became our living nightmare. My parents were able to FaceTime with him shortly after he was stabilized with his new “trach” on Saturday evening. They focused on the future, let Matt know we were there no matter what, and certainly did their best to show their love and support through the iPhone screen he was calling from.

Then, in the middle of the night my mum’s iPad began ringing. Being the night owl she is, she was still awake and downstairs. The nurse requested my mum FaceTime again with my brother because he was distraught, crying uncontrollably, working himself up causing bells and alarms to go off. Among other things, my mum again shared with Matt we are there for him, no matter what, and that we love him so much. The next day she shared with me that her words felt shallow and she felt like a caged mama bear. While of course all of the things my mum shared are true, I can only begin to imagine how alone and scared Matt felt and how heartbreaking that was for her. After some time he calmed down and drifted to sleep while my mum stayed watching him rest until the nurse said she had to go.

The next few days were similarly rough for a variety of reasons. Matt not only spiked a fever again but his highest yet. Turns out this time he had an infection due to his PICC line growing a bacteria. It was immediately removed despite still having the blood clots and the risk that posed. He was put on high powered antibiotics, which at this point seem to be working.

We let Matt and his team of medical professionals know we were there to FaceTime with him anytime day or night, but left it up to him about when he wanted to call. While it felt good for my parents to FaceTime and see and engage with him, they wanted to make sure he was ready and wanted to talk as well. We didn’t hear from him for several days. If felt like Matt was withdrawing and isolating. Our minds went a billion different places since we were only left with the seemingly minuscule SUBJECTIVE assessment from the medical staff, a painfully exhausting game of telephone updates, and SPECULATION about what was really happening on the inside.

With COVID we are not able to observe Matt’s condition, demeanor, establish relationships, make recommendations, or simply be present for the smallest of procedures to the delivery of important updates or news. Is he having a good day or a bad day? And how would they know, they don’t know him anyway? Is his condition improving? How does he feel? Does he need anything? Why isn’t he FaceTiming? Can he see his picture frame? Is the chromecast working? What thoughtless TV channel did they leave on? The truth is we’ve been forced to be spectators, and from my experience, the Clarks aren’t great spectators, we are as my daughter says “TRIERS.” We’ve been forcibly sidelined which feels punitive.

Wednesday was really the turning point. The day report was that Matt was up in the cardiac chair for the first time and did well with lowered vent/trach settings. Best of all, the nurse shared Matt wanted to FaceTime. He had turned the corner. Matt was engaged, smiled, and mouthed a laugh. Our prayers and positive thoughts were answered - his positive mindset had arrived.

Then yesterday we received the UNEXPECTED but very WELCOMED update from the hospital that my parents could go to the hospital and see my brother because a representative from the rehab facility we’re considering sending Matt to was scheduled to perform an evaluation. To be honest, it felt too good to be true and I tried my best not to get my hopes up for my parents. His night nurse shared with my mum this morning my brother mouthed to him “how do I look?” Likely, equally as anxious, excited, while at the same time cognizant and aware it was going to be tough for my parents to see him in that condition. Always thinking of others...

Eleven o’clock was here before we knew it. My parents FaceTimed me from the hospital and I was grateful to be part of most of the visit. I kept reminding myself be positive, don’t ask him questions (because it’s hard for him to respond), and don’t cry. I was positive, I asked one question (and just as quick as it came out, I retracted), and didn’t cry.

I focused my time talking to my brother telling him about you all, his village/army of supporters. We talked about the “golf gang” and the tournament and then I went one by one sharing who I’d talked to, exchanged stories with, emailed, text messaged, etc. Throughout our conversation he would smile, which is something I am truly (beyond words describing) grateful for. My dad showed him the mock up t-shirts, wrist bands, and golf flyers. The “Mayor” gave his stamp of approval with his smile. Hearing about your support clearly lifted his spirits.

The representative from the rehab talked about his journey ahead. If all goes as planned, in the near future he will be transferred to a specialty trach spinal cord injury unit and then to a more specialized rehab unit which includes intensive PT, OT, and more.

My parents stayed with Matt and read him many of the cards, notes, and messages of support, again reaffirming to him that we are in it together. The representative shared it would be the last time we’d see him for quite some time. And, while that fact alone is difficult to process, TODAY we got to not only see him in the flesh, he was in good spirits, and we could scope out the situation and see for ourselves. For me, today felt like a little bit of closure to the book chapter that is hopefully drawing near to the end, which I will title, “The ICU in a Global Pandemic __________ Sucks.”

August 25, 2020

Childhood friend, fellow gamer, and adventurer, Derek Chan, created this AMAZING piece of art and filmed the making of the piece and meaning behind it. All proceeds will be donated to HelpHopeLive Southwest Catastrophic Injury Fund in honor of Matt Clark. Check it out and share widely to support Matt!

Thank you for your incredible creativity and support for Matt, Derek!

August 25, 2020

Trach Update

The ups and downs, the highs and lows. Safe to say, I unfortunately now understand the meaning of the phrase “rollercoaster ride.” Tomorrow marks week 3 since the ride began.

Today, Saturday, August 22, 2020, my brother Matt successfully received a tracheotomy. What led up to today’s successful procedure was basically Matt keeping us on our toes, per usual. He’s spiked a temperature on and off for over a week which prevented this procedure from happening sooner. The culprit of the temperature was unknown even with a mountain of tests and scans (repeated numerous times). All the tests came back negative or clear. He even was put on a special temperature regulating bed (think cooling sand) to see if that helped. Then mid-week, doctors discovered a partial blood clot at the start of Matt’s PICC line and immediately started him on an anti-coagulant. Meanwhile throughout the week+ when he had everyone perplexed about why he had a temperature, staff embarked on decreasing ventilator settings and adjusting the combination of drugs that had ensured Matt remained asleep and “comfortable.” The extended rest allowed for his pneumonia to clear, thanks in part to the frequent broncoscopies.

Last night, Matt’s temperature spiked again which wasn’t good news for today’s scheduled procedure (tracheotomy). But, as I’ve come to learn, the window of time is quite narrow for individuals on a ventilator recovering from spinal cord injuries (SCI), like Matt, and their ability to breathe unassisted going forward. The tracheotomy was a means to that end, but I won’t go so far as to characterize it as something positive. Nevertheless, the game time decision was made to move forward with the procedure today.

It went well and Matt is now learning the ins and outs of breathing with a trach (and continued support of a ventilator-type machine) while slowly becoming more wakeful. He’s been in a medically induced coma on a ventilator for the last 19 days, and is now, just waking up. That part is hard to stomach. He’s been asleep while we’ve been awake learning, experiencing, better understanding, tracking and following along, feeling, and dare I say, beginning to digest our new reality and shared journey to recovery. Today, and in the coming days, Matt will begin his journey (unfortunately on an expedited track) to understand the incredibly harsh realities that are ahead. With COVID-19, our family will not be able to physically be present to support Matt through this journey, but we remain ever-committed to ensuring our support from a distance, and also with time, ensuring Matt knows he has a behemoth of an army outside supporting him.

No, really, the bench for his team of supporters is quite deep. We’re told his “hospital cubby” is filled to the brim with all of Matt’s favorite things. And, I’ve had the pleasure to come to know the group I now call the “golf gang” but really they are the chairs of the Matt Clark Fan Club. They are some of his closest girl friends who are committed to supporting Matt in whatever way possible. They’re planning the first (of which may become annual) golf tournaments to support Matt. Save THE Date for October 11, 2020, and register here: https://events.helphopelive.org/event/5262/signup/ There are non-golfer options too!!

While Matt’s been fighting, our family has been hard at work trying to retrofit (yes, retrofit) Matt’s hospital room to allow for socially distanced visual support. You see nobody thought of COVID and SCI (see above) recovering patients when designing hospital rooms and the need to support loved ones from afar. But have no fear, the Clarks are here thanks to significant IT support from my husband (Matt L). We’re setting up a Google Chromecast and digital frames to start. Both have all of the entries from the virtual card many of you signed. We’re currently in progress for audio support. If my mum has her way, she’d be broadcasting meditation or spa music, though I have to share the one time this genre of music was playing over the last couple weeks, the nurses came in and asked my brother if he wanted to keep or change (blink once or twice) and let’s just say it was a blink twice situation and the music changed to country which had me seriously wondering if the question were asked again if it would have been a blink twice situation, again (I think, yes).

When there are significant updates, like this one, we will share with you. Unfortunately, we experienced several challenges with Matt’s CaringBridge site and quickly deactivated it. Going forward, we will post the updates on Matt’s HelpHopeLive site (Donate to Southwest Catastrophic Injury Fund in honor of Matthew A Clark) and perhaps Facebook (https://www.facebook.com/donate/2796458243905726/?fundraiser_source=external_url ) we’ll have to see as time goes on.

We’d like to extend our HUGE appreciation to all of you. From the messages of support, donations, offers to help, continued prayers, and just general outpouring of love, I can say personally, but know the same is true for my family, that it really is what has got us through these last couple of weeks. Thank you doesn’t even begin to express how grateful we are to all of you.

With love and gratitude,

Kate