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Live like Tyler – The Jackpot!

I wanted to write this at least 2 months ago, but man! You would not believe how hard this is. And you probably wouldn’t believe the incredible creative excuses I have invented to procrastinate doing this, but I am very proud to say none of these excuses remotely involve laundry or anything to do with domestic chores. It’s a talent. In many ways this is harder to write than those updates from the hospital. Simply because I have to remember who he was, and I will never know the person who he would have become.

Until the very, very end, I never lost hope or optimism for a better outcome. I think we all crave the good and positive in life. We root for it, we pray for it, and sometimes we fight for it. And in that hospital every eensy weensy minuscule positive thing was like winning the lottery. It allowed a little bit of hope to shine through and helped me refuel mentally to fight the battle for Tyler and be his cheerleader. We were up against 99 bad things, but that 1 little bit of positive trumped that bigger ugly picture. There were backslides. And I can safely say those backslides at the very least were overwhelming, gut-wrenching, and exhausting. Not only to me, but to the nurses and doctors who were there in the trenches fighting for him as well. But positive has a way of peeking through even in the bad times and so I came to view those backslides as learning experience for us in our battle to help Tyler. Ok, this medicine, this combination, this whatever is not working for him, we need to change it up. Perhaps it was a coping mechanism, I don’t know. But no matter what situation you find yourself in, you have to hang on and look for that positive. Tyler was a very unique kid that had a huge heart and accomplished a great deal in his short life. He had a lot of great qualities that I think are worth sharing and were admirable. So by telling you about him, I hope we turn this crappy situation into a positive. Plus, there is just too much bad in the world and the good and the hope MUST shine through for us all.

So here I find myself again in a situation that I need to rip another band-aid off (UGH) and truthfully since baseball season started I have been ripping band-aids off faster than I think my heart can take. And it’s so painful and so very, very hard. But as my good friend Natalie says, “You just have to show up.” And I guess you have to remove those band-aids to move forward right? At least I hope that’s the concept. My heart and every fiber of my being wants him to look down and be happy and proud of us all. So for him (and Emily) I am going to grab a corner of this emotional band-aid and slowly give it a tug… Here we go.

In many ways Tyler was an old soul and just wise and mature beyond his years. Some people said it was a reflection of us, his character, level of responsibility, thoughtfulness, kindness, respect, and compassion. I can’t take that credit because I truly believe that those qualities were just Tyler’s heart and soul from birth. He was just one of the “good ones” at the very core. To tackle this letter I need to take a piece of my own advice that I used to give to him. “Chunk it up.” Meaning if you find something that overwhelms you take a step back and look at the whole picture. Then, slice that sucker up in a way that is not overwhelming but that you still get it completed in time. This usually applied to school projects but this task at hand is just achingly hard and overwhelming so this is definitely a “Chunk it Up” type situation.

So in this chunk, we are going to talk about passion and fun. Two great qualities to have at any age but that Tyler had in abundance. Before Tyler left for Bald Head he “beagle” cleaned his room. We pretty much let the kids keep their rooms as they want up to a certain point. If things start smelling, raccoons started knocking on the door asking for a place to nest their young, or we suddenly didn’t have any silverware or cups…it was time to clean. “Beagle” clean means that the clothes are picked up, dishes were in the dishwasher, trash was picked up, floor was vacuumed and the biggest test of all? I can let Bailey, our beagle, in and she will not find anything ie: wrappers or food stuffed anywhere. (Beagles have GREAT sniffers by the way. I will rent her out if you need help with your teenagers rooms)

I actually found out after the fact, but Tyler had beagle cleaned his room, gone through his drawers, weeded out old clothes and made a bag to donate, and he had also cleaned out his backpack for the new school year. Later In that book bag I found a gem. He left a composition book of journals from his 10th grade English class, so this became my inspiration to “Chunk it up.“ This is one of those letters that I thought fit and gives a little snippet into the life of Tyler and what I think it means to live like him. (minus the stinky feet and the grocery bill)

journal

Think about it. Think about the times you were doing something that you truly, truly, loved. That “something” that made the very center of your being happy, content, and put you at peace. That thing that scratches that itch, itches that scratch, butters your biscuits, honks your horn, charges your batteries. You couldn’t wait to do it, get back to it, maybe to learn more, or to share your knowledge or talent with whomever you could. Maybe you choose to keep it to yourself…whatever. But at the core, your heart is happy and you are having fun. That’s your “jackpot”! You are in a positive space and in turn, you are going to project positivity into the world. You and your “jackpot” are an important part of the puzzle of life. Is your “jackpot” working in your garden? Well, I bet you will share those veggies with your neighbors or bring a smile and joy to people who get to see your flowers bloom. Is your “jackpot” your job and you get to work with animals? Is your “jackpot” music and you enjoy playing an instrument or singing? Is your passion caring for people and you are a doctor, or nurse? Is your passion collecting rocks, designing shoes, art, working for a cause in honor of a loved one, the study of atoms, the discovery of self folding clothes? (Seriously, if you are working on that clothes thing, stop reading this and get back to work. We need this and you!) No matter how small or what level of importance we may view them, those passions, that “jackpot” that you have is very important to mankind as a whole. And the beauty is, is that not everyone will share your “jackpot” and you are free to pave your own road and think outside the box. Your “jackpot” feeds your soul and helps you grow in a positive manner and we all get to benefit from that somehow. Whether we realize it or not. In his stage of life that is what Tuckahoe and baseball meant to Tyler. They were part of his “jackpot”.

That “try to have fun” concept Tyler writes about was not an easy thing for him to learn. We are not competitive (at least Trey and I aren’t), we aren’t sideline coaching parents, and usually before we left the parking lot we were all in deep discussion about where we were going to eat. But early in his playing years Tyler put a lot of pressure on himself. Maybe it was a pre-teen boy thing, maturity, or a peer issue? But over and over he would get frustrated over a cruddy swing, or a missed ball. We kept saying “Tyler, you do your best when you are having fun. Just have fun. All we want or expect is for you to have fun!” It just didn’t sink in for him for awhile. You can’t play or hit well or frankly do anything really well if you are a bucket of nerves or you put too much pressure on yourself or others put pressure on you especially when they are young. (Soapbox: Parents – ESPN is probably not at your child’s game. Relax. Yelling directions at them or negative comments is not the way for them, or you to have fun)

Sometimes you gotta dig in little and trust in yourself and if you need to, wing it. Don’t overthink, just do. Be confident that whatever happens that you gave it your best, and that you learned a little something from the experience. Sometimes you succeed, and sometimes it’s appropriate to pretend you’re my dog Sarah and decide to do your business on someone’s freshly manicured lawn WHILE they were 5 feet away in their beautiful garden planting tulips. Then if that isn’t enough, proceed to happily kick up small divots in the grass to cover that junk that just left your trunk. True story. I was mortified, she was proud. Kick some grass over that issue or error, hold your head up, and move on. **Don’t really be like Sarah. Do the move on part, but save the rest for a more appropriate place.

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First Baseball Team

Tyler started playing baseball prettour-karate-kidy early on, then moved to karate, almost getting his black belt. Then it was off to football. One of his proudest moments? Being caught at the bottom of a “dog pile”. Little skinny Tyler at the bottom of a pile of 10 and 11 year old boys, one with the nickname “Tubby Tie Dye.” I can still see the smile on his face and excitement in his voice when he told me. “Tyler, where did you go in that play?” With a huge smile “Mom, I was at the bottom of that dog pile” Like a dog pile was some sort of football right of passage or something. But the winter of his 5th grade year he suffered a pretty bad concussion while sledding. And let me tell you, those brain injuries are no joke. He didn’t know how he got to the sledding hill, who took him, when he put his jacket on.

tyler-football
Before the dog pile

We kept backtracking and he had lost a week of his memory. In the ambulance he started repeating the same 5 questions over and over. It took a good 4 hours, but his memory did eventually come back thank goodness, but it was a scary, scary, few hours. The pediatric neurologist’s recommendation was Tyler not play contact sports. Once you get a concussion you are susceptible to additional ones and this was Tyler’s second. So his “Boys of Fall” run was over.

The fact that he could not play football was a hard thing for Tyler to come to terms with. I think he eventually made some sort of peace with it, but honestly I don’t think he ever lost his passion or that dream. It just simply took a backseat and occasionally snuck out with a pickup game or two, or twenty with his friends (that he tried to hide by the way). I am wrapping that up in a pretty little package but at times it wasn’t so pretty. It was heartbreaking and it was hard on him. Every year (until his Sophomore year – that’s another story) he would sprinkle questions about the possibility of playing football and each time we would have to have some pretty heavy discussions about why he couldn’t play and the long term damage of concussions. Here I was, always telling him to follow his heart and do what makes him happy, but in this case I wouldn’t let him. I was the one in the ambulance that witnessed that “stuck brain” and had to ask myself in that moment, “What if he stays this way?’. So when those questions came up “can I play football?” My mind automatically went back to that ambulance ride and those 5 questions. Was football worth it? Putting him in almost a direct line of fire? Was early onset dementia, Alzheimer’s, depression, anger issues, all those things. Would he and his future wife or family have to deal with those issues? Was it worth it? And the answer was always no. He had his whole life ahead of him, a 3rd concussion was always a risk especially since he was already at a higher risk than most. I know that not being able to play greatly bothered him, probably much more than he let on and I know he was probably mad at me at times. Most of his friends played football and wanted him to play but he was not allowed to over something that wasn’t known or seen, like a broken hand or foot. Dealing with that peer pressure and that internal passion to play the game just was not easy..

But the passion for sports remained and we had to figure a work around. What’s the Plan B that will allow him to fuel his passion and have fun? Baseball.

Thankfully we live very close to a wonderful baseball field and over the course of the next 6 years Tuckahoe Little League became his second home. Well, I guess you could say it also became our family’s second home. Trey eventually started managing the kids baseball and softball teams and I would scorekeep for them all. On days when there were no practices you might still find Tyler up there helping out with something or other. If there was a volunteer opportunity, Tyler was there. When he became old enough to umpire, that’s what he did, a lot! So much that he bought his Jeep with umpiring money. Our county encourages the kids from 9th -12 grade to have 80 hours of community service and thanks to all that volunteering and coaching he had close to doubled that before the start of his junior year. He was just a great all around player. Now, Dustin Pedroia or David Ortiz weren’t going to have any competition from him for sure. And heck if he had tried out, he probably would not have made the school baseball team. But he wasn’t a bad player by far. Occasional strike out, but the majority of time he got on base and scored runs.

Poor kid, I remember one night we thought he had hit a home run. Crack! You know that sound. And that ball went soaring! I was up in that score box clapping with a big ole’ smile on my face. I was thinking of how happy he was going to be and also wondering where I could find one of those clear ball cases to display his home run ball (I was already shopping in my mind. That’s passion). I looked down to score the run on the books and when I looked up, there was Tyler, sprawled out on 2nd base! Huh? What? Turns out that stupid ball hit the top of the fence and bounced back onto the field. The outfield was fielding really well and threw the ball to 2nd and Tyler took a wonky slide and cracked his knee. BAM! The same knee that just had meniscus surgery a couple months before. He took it in stride and enjoyed telling the story with a leg brace and crutches and our orthopedist put a down payment on a cruise.

One of the great things about life is that the only constant is change. We had to change from football to baseball and that wouldn’t have happened if it wasn’t for that bad concussion. And the joy of a passion is that if you choose, you can make it grow, evolve, and you can spread your wings.

Around 12 Tyler decided to give a shot at Umpiring. We have had so many people tell us that Tyler was their favorite and I think he may have inspired some kids to try umpiring. He was fair, knew the rules, and would help the kids out by giving them tips to improve their game and he always had an encouraging word and smile. He had an easy relaxed manner, and could joke around with the other coaches and fellow umpires and that just added to making the game a little more fun for everyone. That was his passion shining thru and in the process it affected others around him. Did he realize that? Probably not. He was just being himself doing something he loved.

Tyler was playing basketball the week of Christmas 2013 and on a jump shot, someone crashed into his leg and long story short, he tore his meniscus and could not straighten his leg. On Christmas day, he went to put his leg up and as my dad jokingly said “we had a Christmas miracle”. His knee made a gross sound and popped back into place. All’s good right? Nope, on the first day of school his Sophomore year 2014 he twisted sideways on the gym bleachers to sign a paper and his knee locked up again. Surgery was that Friday, he was back to school on Monday and the Orthopedic surgeon was in the Bahamas on Tuesday. (Just kidding but not really, between Tyler and Emily’s back we had seen him a lot that year. He is a wonderful person and doctor with a passion for his career). But somewhere around this time, Tyler started talking to Trey about the possibility of trying to coach a team. So together they coached a fall ball team and that became the first of four teams Tyler would coach over the next 6 months. And I had the great privilege and honor of watching Tyler grow and evolve as his passion expanded.

After having spent years coaching baseball and softball teams and being on the board at Tuckahoe when it came time for spring ball Trey called “uncle.” He wanted to just come to the games and be able to sit, watch and enjoy. No worrying about lineups, or dragging equipment around. Just sitting and watching. Luckily, umpiring all those games gave Tyler a chance to observe coaching styles and he had in mind someone that he liked and asked to join his coaching staff. I wonder what that coach thought about a 16 year old kid asking to coach. But he told Tyler he would be happy to have him and that Spring ball Red Sox team (because they are the Red Sox, duh) went on to the championship game, Americans vs. the Nationals. Sadly they lost, but not by much. 1 run maybe? But what was not lost was that passion and drive. Tyler then went on to coach the All Stars team, and then the Invitational team. Four teams, not bad for a 16 year old right? Oh, and he also had a job at a wonderful local sports store. But my point is, each one of us has a passion and something positive that makes us all important to the world as a whole. You grow, you evolve, and that passion makes you happy and radiates to the people around you. Much like DT inspired Tyler, and Tyler hopefully inspired his little guys.

“When you are doing so well it doesn’t matter about your performance it only matters if you are having fun”

Thankfully, this had finally sunk in and he got it. From the scorebox, I could hear his “big team” his peers, laughing, joking around, and razzing each other. Both sides. There was no pressure, no parents were yelling, no one came into the dugout crying over a strikeout. They were all there to have a good time, relax, feed their passions and interests and have FUN! It was great.

coach-t2 coach-t1That may be one of the reasons his little guys, the ones he coached, related so well to him. He was somewhat of a peer. He wanted those little guys to experience that same fun he finally understood but at the same time he understood their passion and drive to win. I think he did a good job of marrying the two. Tyler coached 3rd base and sometimes if he knew a batter was too tense he would often run up to the kid, put his arm around his shoulder and say something to him. I wish I knew what it was. Maybe it was an inside joke, maybe it was a word of encouragement, heck it could have been the recipe for Bush’s beans for all I know. But what I do know is that at the end, they were both smiling. Tension broken. And the game became fun again for that batter or perhaps it affected the team vibe for the better.

Before I included that journal entry above I wanted to ask DT and his mom it it was ok that I do so. From DT’s mom’s tears and the smiles I can safely say that they were happy to oblige. DT remembers saying it but I don’t think he knew the impact or how it affected Tyler. So, thanks DT for being who you are. I will say a prayer for all those waitress you keep hitting on. 🙂 It just goes to show that you never really realize what you say or what you do how it can impact another person’s life for the better. And quite possibly unbeknownst to you, start a chain of positive actions that help more people than you know.

We are by far not perfect parents and there are things I wish I could re-do or take back. I’m still making mistakes. But I am so glad that we supported Tyler and his interests, and just let him evolve into whatever direction life took him. Especially now that he is not with us, I can look back and be 100% confident that his heart was happy, he was living his passion and he was having fun. Jackpot!

Find your passions and have some fun people!!! Do it for us all.

#TeamTyler

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Tyler on his 16th birthday

Tyler’s 17th Birthday

Today, October 23, is Tyler’s 17th Birthday. In early August I asked him what he wanted for his birthday. (Early I know but I needed ideas so I could look for sales, duh.) The fun/kid/dreamer part of him wanted to have his Jeep lifted. For a split (and I mean, split) second I thought “Oh, that would be soo cool!” I could even picture him sitting in the driver’s seat of that jacked up little Jeep, looking so proud and grinning from ear to ear. And to be honest, the image I saw in my mind’s eye of him so happy, proud, excited, and feeling like he was on top of the world made me feel awesome. However, Momma Bear wasn’t too far away and I quickly put the kibosh on that idea. ERRRCH! The reality was, he just did not have enough driving experience to make me feel comfortable with him driving a little gray jeep with a wonky center of gravity. I could easily picture him taking a turn too sharp or too fast and flipping. Not a risk I was willing to take.

“Ok, so Tyler, that’s not gonna happen, what else do you want?” He replied with a smile “Soccer jerseys. Two, soccer jerseys.” Let me back up a bit for ya’ll. In the past 2 years or so Tyler has become a HUGE soccer fan. I believe it started with FIFA and the XBox. We could hear him in his room yelling, and screaming and after a few choice words he would come out of his room all mad and angry. Trey and I would say, “Tyler, why are you playing that game if it makes you so mad?” And he would say, “Because it’s fun.” Um? Ok? But the kid was hooked and was watching soccer on TV whenever he could. Me, I have no idea how soccer works. I know there is this dude named Palio, or Playto, or maybe it’s Pede? Pedro? I am almost sure it start’s with a “P”. But the players are mean to each other, and I don’t understand why they aren’t required to wear some sort of head protection, and the refs dangle fancy colored flags in their faces like matadors. And just when you think the game is over they add random minutes that I think they pick out of a hat or somebody’s stinky shoe. It’s crazy, I don’t understand it but he loved it. So anyway, those jersey’s sound reasonable right? Wrong! Those dang things were like $180. A PIECE! (His smile should have clued me in) “Dude, seriously? Do they come with video games? Gatorade coupons? Bobble heads?” He just laughed at me and the conversation just drifted in another direction.

Tyler Fishing
Tyler Fishing while on Vacation

The morning Tyler left for vacation he almost left his fishing rod and quickly ran back into the house to get it. As Jon was trying to put it in the car we quickly discovered that it didn’t come apart so Tyler couldn’t take it. In order to make the ferry ride and getting onto the island as easy as possible things had to be minimal and as compact. So a long fishing rod wouldn’t be the best, nor, the easiest thing to tote around when you need all the arm real estate you can get. Schulyer’s mom graciously offered her pink, glow-in-the-dark, sparkly, light up, bedazzled fishing rod to Tyler. Problem solved!! Now, I am not sure about you but I can flash through 99 scenarios in my head in 1.3 seconds. It’s a gift or mental illness, the jury is still out on that one. But I could just picture Tyler, 6 feet tall with his backwards Red Sox cap, swim trunks, casting a pink, flashing, fishing rod. But then I felt bad for him because if I would have known that fishing rods came apart I would have made sure he had one prior to this trip. Then I wanted to run to Bass Pro but that store was too far, so could I go to Wal-Mart to grab one? Would Wal-Mart even have one? But I knew they had to get on the road so that wouldn’t work. (keeping up with the thought process still?) But really what stopped my mental Nike’s in their tracks was honestly, I knew Tyler really wouldn’t care what kind of rod he used. Truly. The child would not care one bit. The fact that he was with his best friend having fun and hanging out at the beach, on a great vacation with people that he enjoyed being around. THOSE are the things that mattered and meant the most to him. Family and friends. Not what kind of fishing pole he had or even if he caught any fish. Just the fact that he was with people he cared about, he was with his best friend and they were all having a good time. I have a couple of pictures of Tyler sitting by the water and he just looks so peaceful and content. Just happy to watch the water go by and think about whatever. So, I pictured him casting that Swarovski encrusted fishing rod and having that same look of blissful peace and contentment. I gave him a big squeezie squeeze hug, told him I loved him and watched as he rode away.

I told Trey as we were going inside “I know one thing we can get for Tyler for his birthday. A new fold up fishing rod!” Woo Hoo. I am so sorry I was not able to get that new rod because in the hospital (and even now)I want that new rod for him SOOOO badly.

His birthday is today, Friday October 23 and TWentz will be 17. I don’t know what the day will be like, but I don’t want it to be overwhelmingly sad. I want to honor and remember him and want to make my heart happy because I know he would like that. So I invite you to do something that truly matters to your heart. Me? I am going to seek out some random acts of kindness tomorrow. What? I am not sure but I hope I will know when the opportunities present themselves. And you can bet I will be looking for those opportunity whenever I can. Picking up something somebody dropped, holding a door, buying a cup of coffee, buying an extra football game ticket for someone at the Godwin/Herm game tomorrow, complementing a random person on something you noticed about them…putting the new roll of toilet paper on the holder… cough cough (Trey) or, simply just a big ole’ honkin’ smile. Pay it forward, Pass it on.

Remember, it’s not about the pink fishing pole, but it’s the time you get to spend fishing, being with the ones that you love and also doing things that make your heart happy.

Happy Hearts and Happy Birthdays

#teamtyler

Wednesday, September 9

So, it’s Wednesday and we are still in Wilmington. I hope everyone had a great Labor Day. Trey went home on Sunday to take care of some things but more importantly to be with Emily. She started her freshman year at a new school Tuesday and you guys know the butterflies that come with that. Plus she is 14, and to top it off, having your big brother critically ill in the hospital and he and your mom in another state doesn’t help. I really must give props to this girl. She has really stepped up in this situation and the way she has helped us and the thoughtful things she has done, I am truly, truly, truly blessed to have such a wonderful daughter. We will have our moments, and she will have her moments, but we will get through it as a family. To quote the great and wise Sister Sledge ” We are Fam-il-ly”. Or what that the Pointer Sisters? No, I am pretty sure it was Sister Sledge.

We had a setback Monday night and it was pretty significant. I think I told you guys that Tyler was on a broad range antibiotic. Well, he still developed an infection in spite of that antibiotic. From talking to the infectious disease doctors it turns out that that particular antibiotic can grow resistant pretty quickly to the particular infection he has. So, bottom line, it was not as effective as they hoped it would be. The good news is that they have identified the strain and have the correct antibiotic to fight it. We started that drug yesterday and they want to give it a good 24 to 48 hours. Plus they have him on a different broad antibiotic.

Along with the infection situation they discovered Monday night that his oxygen levels had started to decrease and noticed with a chest film that his lower lung had started to close. At this time things became super, super, critical. His doctor got on the phone with colleagues, Tyler’s other doctors here, and the ECMO people from Duke. In the end they decided to try a machine that is usually used in the NICU. It hooks up to his ventilator and puts Nitric Oxcide into his lungs (not to be confused with Nitrix oxide ie. laughing gas. Although I would give a million dollars to see and hear him laugh right now). Thankfully that worked almost immediately. Que the band……ba da da!!!! Enter breakdown #2. After about 10 minutes of non stop, shoulder shaking, snot dripping, crying I was physically and mentally done fried. I have never felt so heavy, it took effort to hold a stryophone cup that was almost empty and resting on the rail of the bed. I don’t think I could have moved if I tried. That night was rough. Rough, Rough, Rough.

But with those dips that are agonizing and horrible come the upswings. The fact that he is stable, the fact that they continue to be able to get so much fluid off, each dial of the machine knobs that go down….One step back, two steps forward….Slow and steady. Tortuous and the Hare. Put that purple eyeliner on and start another day..

They did another bronk today and the doctor was able to get out some more “plugs”. This is the stuff that is blocking his lungs preventing the oxygen and blood from getting to where it needs to be and start healing. His doctor let me have a front row seat to “Lung TV” and it was some crazy, crazy stuff. Dr. P (I am not going to give you his name because he is currently a member of the outstanding team representing #Team Tyler and will be currently unavailable until further notice, so you can’t have him (sticking my tongue out) Woops, let me go back and explain. The Bronk-a-konk-ulous (another medical term, like Gunga. Most medical professionals just shorten it to “Bronk” because “Bronk-a-konk-ulous” is such a long term for them. Poor guys 🙂 just kidding) So, anyway, Dr. P goes down with a small camera to take a look at Tyler’s lungs and the whole thing is saved onto a DVD that will soon be available for all you to rent on Redbox. No more boring Friday nights!

Normal lungs are a nice pretty salmon color. Both of Tyler’s lungs are white with bits of angry red and so damaged there is no pink in sight. The goal is to get that blood and oxygen flowing in them so they can heal. And the whole healing process I am told, can be months or maybe even years. But that will be another bridge we will cross when we need to. Because of Monday’s set back we had to go back to the higher settings on the machines, but as of right now slowly creeping back down and are almost back to where we started. So that is great news. I am not kidding when I say this, but he is on a dose of Fentanyl that could knock over an Elephant.

Not even kidding. They need to keep him sedated AND his body is metabolizing the drug very fast so they are working on bringing that the fentanyl down and introducing another medication so his body doesn’t develop a tolerance for it. So that’s where we are right now. Please keep those thoughts and prayers coming. We are in in a little bubble here, and I keep hearing little snippits of people in the “outside world” praying for him and keeping him in their thoughts and prayers. I am so very thankful for those of you.

Have I told you about the nurses and doctors for #Team Tyler? A-MAZ-ING!!!! I just got done stuffing my belly with a wonderful potluck they put together. Chicken, sandwiches, Thai food, noodle salad, a kale salad that didn’t taste healthy (but probably was, but it was yummy so I won’t hold the fact that it was healthy against it), buffalo chicken dip which accidental landed on my plate 3 or 4 times, fruit……. it was all so delish, and thoughtful. Not to mention the pasta and cake the other night from the “mean” nurse who has a reputation to uphold and forgets her heart is bigger than this hospital. If you guys are reading this, I don’t think I can every repay you for everything that each of you AND your family’s have done for us. For everything I see you do, I know there are even more behind the sceen things I am not aware of. So I want you to know that you are valuable, appreciated, and are truly special and remarkable people with extraordinary gifts, talents, and enormous hearts. Thank you.

Until next time,

Keep those thoughts, prayers and good vibes coming. They helped get us through another crisis and continue guide and push us forward.

I told Tyler that Pink is our new favorite color for awhile, Pink Lungs. (note to Crayola: New crayola color #16 Pink Lung)

Love,

#Team Tyler

Sunday September 6

Another short post. I am going to try and get some sleep tonight, I was reading Charlie and the Chocolate Factory to Tyler earlier and I kept nodding off. It reminded me of when he was a toddler and we would read a book together and I would fall asleep and wake up to him in the living room sharing a box of cheez-its with the dogs. Kiss dinner and a decent bedtime goodbye that night.

We are staying the course today and not a whole lot to report other than his lungs continuing to improve. He did open his eyes, but they immediately sedated him. We are keeping things slow and steady.

Told ya I was keeping it short.

Keep those thoughts, prayers and good vibes coming,

Love,

Team Tyler

Saturday September 5

For some reason the story of the Tortoise and the Hare has been on my mind for the last couple of days. I don’t remember it completely but I think it goes something like this: The Hare is an ego maniac. Adidas sweatband on his head with his rabbit ears pointing up, eyebrows on fleek, (“fleek” is a hip term and I am hip. Deal) So the eyebrows of the hare are fleeky, his tracksuit is from the Ralph Lauren Fall Collection 2015 because he has a reputation to uphold. (But we all know If you mean business, you are not going to sweat in a Ralph Lauren tracksuit) And he has his band new Kanye West, 2015, “Runnin’ for Prezident” hightops on. Not to judge, but the Hare is looking flashier than a tin pie plate in a garden. Next up to the line comes our beloved tortoise. He is a little slow but has this air of friendliness, kindness, and good heartiness about him that makes the crowd go crazy and want to root for him. Nothing fleeky or flashy. What you see is what you get. After about 5 minutes the tortoise has finally made it to the line. The elephant gives a mighty roar and the tortoise and the hare are off.

The hare of course is hopping a breakneck speed. He knows hands down that he has that tortoise beat and he is feeling very confident. But then something happens. Ralph Lauren doesn’t wick as well as Under Armour and the hare’s armpits start to get a little damp. He can’t be seen crossing the finish line with ring-around-the armpit! So he slides into Starbucks to take a break. “Wouldn’t it be awesome if I crossed the finish line looking all bae’ with a choca chocka mocha latte with a splash of non-fat carrot juice, hold the whip?” He thought. So that’s what he did. Slid into Starbucks. But he wasn’t counting on the free use of IPads and wi-fi. “I’ve got plenty of time” he thought……as he took a seat and fell into the rabbit hole called Pinterest.

Now our beloved tortoise knew he had a job to do. It was going to be a very hard and tough job. But he had patience, strength, courage, support, and love. And when one of those seemed to slip, his crew of other tortoises (just a little F.Y.I. right now. You will recognize the girl tortoises from the guys by their purple  eyeliner) but the crew all had his back. And slowly, chunk by chunk the tortoise made his way to the finish line.

Back at Starbucks, the Hare was busy pinning DIY stain removal ideas when it occurred to him that he had lost track of time. He hopped with all his might, not worring about arm pit stains (Pinterest – you remember) But it was too late. Just as he rounded the corner, the tortoise was breaking through the banner the cheerleaders had made. The tortoise had won! So that’s the story of the Tortoise and the Hare. If you have a book or have heard an older version. It’s wrong. This is the way it really happened, I’m pretty sure. Chunk by chunk, bit by bit, the big problems get conquered . Try to remember that when you get overwhelmed. I know I will try my best. Tyler held steady today. They still have him pretty sedated but the nurse said he tried to open his eyes and he moved his mouth like he was trying to speak. Even though we didn’t have too much movement we had other areas of great improvement. Over the last 2 days he has lost about 25+ pounds of fluid. C-razy, I know! Remember, to stabilize him and get him where is he is now, he needed that fluid. But now we no longer need that fluid services and it must leave the mother ship. They have been taking the fluid out rather steadily and he has tolerated it very well. He still has more fluid to loose but we are very much making progress. He also had a broncostomy today to check his lungs. I am happy to report that the doctor said there were no signs of puss and he was able to get a good sample to have the lab culture for bacteria growth. That will be sent to the lab for growth to check for any signs of something brewing and if so, we can get a jump on it. On a great note, the doctor was able to get out a lot of gunga. Gunga, in case you were wondering, is the medical term for “any Atlantic Ocean water and food particles that remain in the lungs” You learn something new everyday don’t you? Tyler did fantastic. Wonderful news again, right? The doc may have to go back for some more “Gunga” later in the week, but removing it just gives Tyler’s lungs more room to heal. I believe tomorrow we may start backing off the ECMO machine but no promises.

My mom was finally able to see Tyler and she gave him a “grandma” talking to. She and Tyler are pretty close, and she was actually Tyler’s pre K teacher. She softly told him she loved him and how proud she was of him but then she gently BUT firmly told him “Tyler, you need to fight this. You need to dig your heals in and fight this Tyler!” Then softly, “I’m going to make you some soup when you are better.” I think I heard his stomach growl.

Keep those thoughts, prayers and good vibes coming. Say a little somethin’ somethin’ for tomorrow. Starting to ween of the ECMO is a huge deal.

Slow and steady wins the race,

Love,

Team Tyler.

Friday

I am not going to post much tonight because I am emotionally drained. I hit the wall today, the ugly cry came out and I thought they would need to call the game warden to come and sedate me. Purple eyeliner didn’t stand a chance. It was bad.

Today was just a lull. Slow and steady. But that whole “riding the wave” business is for the birds. Tyler made progress, but we just couldn’t see it. Lots of fluid gone but they are really keeping him sedated so not much movement. And he is still at 40% on the respirator and has been for almost 24 hours. Some other knobs on the ECMO went down, but I am too tired to remember which. But I know its a good sign, This whole thing is just really, really, really, hard. And it’s so hard not to think one little thing is a setback, and to remind yourself to look at the bigger picture. The little victories seem huge but unfortunately, so do the minor blips. Trying to keep perspective. It’s just hard.

Godwin: We got a picture of your banner and you couldn’t have done a better job! Everything ya’ll are doing for him is just such a blessing and so kind. I just wanted to make sure that you knew how it encourages us and helps keep us strong. We have started hanging pictures and cards up of Tyler and the banner picture is going to be included. Thank you all from the bottom of our hearts. The game may not have gone in our favor, but the war is not over. Heads held high and we are supporting you here in Wilmington.

I am going to bed.

Keep those good thoughts, prayers, and good vibes coming,

Much Love

Team Tyler.

Open post
Thumbs Up

And then this happened…………….

WE GOT THE THUMBS UP!!!!!! Can you believe it? WE GOT THE THUMBS UP!!!!! Ok, now that that most awesomeness news is out I can back track. Wait. WOO HOO, I love thumbs!!!! Thumbs are so great! Aren’t thumbs great?

Tyler woke up on his own and was calm, which is very good. Calm is good. He started moving his mouth again like he was trying to talk and Trey told him that he was ok, safe, and in the hospital, and that we were both there. Larry, the ECMO coordinator (I think that’s what his job title is. I just call him Larry. But hey, don’t trust me. I just found out today that what I thought were g
ray battery packs hanging from the poles was actually his Fentanyl. I was all, “Dang, those battery pacts hold cruddy charges. They must have a huge battery charger at the nurses station.” Ding Dong!! In my defense, they are gray boxes and only today did I notice they said Fentanyl on them” We will chalk that one up to stress.) So back to the story. Larry said, “Tyler, squeeze my hand” and he did. Then Larry said “Tyler, give us the thumbs up” and through all the medication haze and the swollen fingers, those arms rotated and those thumbs clearly rotated up! It was incredible. Just incredible.

And then they knocked him out again. It was like “thanks for joining the party…..ba bye”. Just kidding, they really only want those short moments so they can gage where he is neurologically. But it was a great sign, and a wonderful pick me up for his team and I imagine for everyone following his progress. Give yourselves a pat on the back. Better yet, give yourself the thumbs up!

I was walking down the hall talking to my mom telling her the good news and I saw the most gorgeous and beautiful Golden Retriever. If you know me I am a huge animal lover. I might get arrested for stealing puppies one day, seriously. But anyway, I had to stop and pet this dog (who must have better shampoo than me) I am talking to my mom and she is crying because by that time I had gotten to the “Thumbs Up” part of the story. She is crying and I wanted to cry becaue I was so happy beacuse of the Thumbs Up! but this dog was SO pretty so I had to say: “Mom, hang on. I have to pet this dog”. Standing next to the dog (with the better hair than me) was one of the Chaplins at the hospital. She looked down at me (cause I was petting the dog) and asked how

Tyler was. I said, “We got the Thumbs Up!” She starts crying, my mom is crying, and I am crying and trying to hold onto my cell phone, hug the Chaplin and pet the dog; It was a little wack-a-doodle . A wonderful chaotic wack-a-doodle mess. . .

So right now Tyler’s respirator machine is down to 40 so that means they an start adjusting the ECMO. And of course those numbers may need tweeking as each blood test is drawn. We are far far far from being out of the woods, but clearly we are on the right road.

Keep those prayers, good thoughts, and vibes a comin’

Thumbs up! to you all

Love,

Team Tyler

Thursday September 3. One Week

Today is our one week mark since Tyler’s accident. It seems like just yesterday sometimes, and other times it feels like a lifetime. This morning when we went to see Tyler the doctor came up and said that the nurses had something to show us. He didn’t look worried or concerned so I wasn’t overly panicked but I ddn’t know what to expect. New sheets, new dressings, machine settings? Once we got to his bed, Ronnie, one of his nurses for last night said “Tyler, open your eyes” and he immediately opened his eyes! I cannot tell you what an overwhelming feeling of joy that was. There he was. My baby!

Trey and I told him how much we loved him, that we were right there with him, how incredibly proud we were, and that he was safe and being well taken care of. Did I mention he also tried to talk to both Trey and I? Ronnie said that earlier she asked him to squeeze her hand and he did. She then asked him to squeeze harder and he also did that. Also, wiggled his toes when she asked him. It is a little victory not only for Tyler, and our family, but for the doctors, nurses, and everyone who prayed for him and sent good thoughts. I hope eveyone takes a little joy in his progress.

I want to always talk to him, read him books, hold his hand……anything to make him feel like he is safe and not alone. But sometimes that makes his vitals go up and we need to take a break. The happy medium is to let him know you are there, but keep him calm. The calmer he is, the more his vitals stay steady and we can keep making progress. It may be a while before he is off of the machines and we still have a long, long road ahead but he is here! He is here!!

Thumbs Up! (hopefully coming soon)

Continue those thoughts and prayers and good vibes. You can see them working.

Slow and steady wins the race

Love,

Team Tyler

Wednesday September 2nd part 2

Just a quick little update. We are still in the “Less Puffy! More Pee!” loop but they are taking out more than he is getting in so hopefully we should be getting the upper hand here pretty quick. Just takes some time. They did some cultures from his throat, mouth, lung, Bermuda.:) somewhere. And something unsavory is starting to grow. They have started some good general antibiotics to get a jump on that. Once the growth in the lab is complete they can tailor the antibiotic.

Oh, and I forgot, they did start feeding him Nutragen 2.0 (and yes, the bag does say 2.0. which makes you wonder why it needed the upgrade) and protein powder 6 times a day. I am happy to report that he is tolerating that yummy delishishness very well. Probably because it reminds him of Trey’s cooking. (just kidding

Trey…..you make a mean pot of boiling water) Seriously, your a good cook and I can’t wait till we ALL get home and you can make us dinner. How about that chicken and cream cheese enchilada recipe? Trey makes one dish of it for us girls with no onions and tomatoes and another with everything for he and Tyler. Delish!

I just saw Kermit the Frog’s new “girlfriend”. Was he on Ashley Madison or something? Miss. Piggy should not be cast aside! She would totally understand Purple Eyeliner and puffiness, ya dig? Kermit is SOO on my bad frog list.

Keep those good thoughts, positive vibes, and prayers coming. They ARE working.

Thumbs Up! (easier when you aren’t so puffy)

Love,

Team Tyler and Team Miss. Piggy (Cause we root for the under pig. That’s how we all roll)

Wednesday September 2

I have to write the day because the days are starting to blur together. Through the course of the night they were able to bring the dialysis machine up to 140 which we were very happy with. I guess I can sum it up quickly this way: he had to get a lot of fluid due to his condition and the combination of all those fluids and medications start forming crystals and clog his kidney plumbing. After a quick team huddle, the doctors were confident with his vitals and they have decided to bring that machine up to 200 and we can start moving the excess fluid off faster. So that means, less puffy, more pee. I wonder if I can find a “Less Puffy! More Pee!” tshirt in the hospital gift shop?

So the number on the respirator is down to 50 which is great. When it gets to 40 they can start backing off of the ECMO machine. However, those numbers are a bit of a roller coaster. So hang with us. We are looking at the bigger overall picture. And my reference to Alex Rose in the last post is interesting. Very little people know that Alex Rose is indeed Axel Rose’s little brother and that he is the one who wrote the song “Patience”. There was a huge falling out between the two. Rumor is it had something to do with not rinsing Spaghetti O’s out before putting the dirty bowl in the dishwasher and they never spoke again. Or it could have just been my computer auto correcting. I forget. Have you heard the story about Nick Jagger?

I will try to post later tonight. But until then, Less Puffy! More Pee!

Thumbs Up!

Love

Team Tyler

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