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Tyler’s Story & Carrying On the Good…

Thanks to Trey’s hard work and computer skills, Tyler’s website is really looking amazing! Thanks to all who have shared their Tyler Stories and pictures. It’s awesome to see it all coming together. Please continue to check the site as we (and YOU) add more stories. The videos from the news broadcasts are available on the site and you can now make donations directly to the Tyler Wentz Memorial Fund. We have some awesome things in the works for carrying on the Good in memory of Tyler, so stay tuned! #TeamTyler

http://www.twentz.com/

One of the many “Tyler Gifts”…

In sixteen short years, Tyler’s kindness and fun-loving spirit have made an incredible impact on our community and beyond. He has left many “gifts”, but his mama and I treasure the text he sent her just before the accident. It has helped carry us through this and we want to share in hopes that it helps carry you, too.

Fwd: Hey mom just wanna give you an update. I’m really having a great time here and Schuyler’s grandparents love me and think I’m a really nice, laid back, and responsible kid (props to you?) me and Schuyler saw a shark swim next to us yesterday which was awesome yet extremely scary. It’s literally like you wake up at grandmas house here cause everybody’s up and breakfast is cooking and everyone sits together like us and just eats and has really cool conversations. Schuyler’s mom made this dip that is literally heaven and I’m getting the recipe so we can have it( it’s heaven dip) the beaches are saltier than Peter chens soup but that’s ok cause they have the best waves to body surf in. I haven’t found any seaglass yet but I’ll find some eventually for ya. I have been super good at brushing my teeth(surprisingly) and have been showering like once a day. I love you and want you to know that I’m safe and are having a blast!

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Angels in the Outfield for Tyler! (From Natalie)

What a day! Trey, Michelle and Emily continue to amaze me with their strength, love and grace. Today was tough, but wonderful, as we planned Tyler’s Celebration of Life. I will post more specific details tomorrow, but please join us this Saturday at Tuckahoe Little League field #9 to honor Tyler and have fellowship with each other. Bring your own chairs or blankets and show your #TeamTyler Spirit by wearing something patriotic. Little League Uniforms encouraged. Baseball caps backwards for luck in true Tyler-Style!

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Monday, September 14th (from Natalie)

Thank you. Thank you. Thank you. For all of the love and prayers and texts and hugs and flowers and cupcakes and emails… Thank you.

Michelle, Trey and Emily returned home last night. Pray for them. Arrangements are being made for a service to celebrate Tyler’s Life. I will post the details here as soon as they are available. Please give them time. Right now they need Peace.

Hugs and Love to each of you. We will get through this together. #GodisGoodAlloftheTime #TeamTyler

From Natalie Reddell on behalf of Michelle (WITH CRAZY AMOUNTS OF LOVE!)

It’s Natalie Reddell (Schuyler’s mama), again. Whew! What a day. I am posting on Michelle’s behalf because she is in the ring swinging punches with her baby boy, Tyler. They are two of the most amazing fighters I have ever had the Amazing Grace of knowing. (Cue the theme from “Rocky”) Michelle and Trey and Emily and Tyler need our prayers BIG TIME! Tyler and the doctors are working so hard to get things right with his lungs and liver. They have made some miraculous progress today, but aren’t out of the woods, yet. Please, STOP WHAT YOU ARE DOING. Kneel down on the floor, bow your head, shout, sing, WHATEVER! God does not care, just give it all you got for #TeamTyler! Lift that precious boy up and ask God to heal him so he can be the blessing that he is to all of us around him! God is good all of the time! #TeamTyler

Thursday, September 10th

I wish I could write a cute story like Michelle or that things were going well enough that she could write something inspiring. As of right now Tyler has hit another bump in the road with his lungs. They are looking into it now. They drained a bunch of fluid out earlier this evening and saw some initial progress but his stats have been declining again. I am hopeful this is just another blip and they can get it corrected quickly, but we need your thoughts, prayers, and positive vibes very much right now. Emily and I will be going back to see them after school tomorrow and I hope we can share some positive news. I want to again thank everyone for the support, prayers and offers for help. Those things are really helping us get through these very rough times. If I get a status update I will post it as soon as I can.

-Trey

#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

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