Till we meet again-Holly

My sweet Tyler. I love you dearly. This is such a bitter sweet moment for us. I am so happy that you are free from the bonds of this life. But I will be extremely sad for a long time. You are an inspiration to alot of people. May your example live on and help someone who may need it. Someone needs your star, you are their beacon of hope. You have fought a tremendous fight, but buddy, you have definately won the war. Live on and be at peace. Watch over all of us. Keep us from doing anything stupid. I love you, more than words can say. One day you will be able to hug us and tell us you love us. Thank you for this incredible 3 months we have had to enjoy you. I have really enjoyed spoiling you. I'm sure you didn't mind that either. Rest in peace little bro. You will always have a special place in my heart.

I am going to miss you

As Jamie mentioned in her post below mine(Please read), Tyler passed away today at 11:00 am. Which to me is kind of ironic, because at the hospital it says the patients need to be discharged by 11:00 am. I just found that very interesting. I am just glad he does not have to suffer anymore. He faught a good fight and is going to be such a great leader and missionary where he is at. I know like Jamie said, that he has a lot of family that welcomed him home and they are so lucky to have him.

I can't even tell you how difficult this is. But, it would be even more difficult if I did not know the gospel and if I did not know that I would see Tyler again. I KNOW I will see him again, but will miss him until then.

I love you Tyler........it's so hard to have you gone, but I know you are in a better place and you are finally free. Satan has no more control of your life. I know you are smiling right now and walking, and talking and all of those things you were not able to do here on this earth for a short time.

I LOVE YOU!!!!! I know you will be our angel to guide us through this.

Love,

Lisa

Tyler's passing - update by Jamie

I wanted to post a quick message to let you all know that Tyler passed away at 11:00 this morning. He is now at peace. I know I will see him again, as I have said before, he is now the leader of the pack and will be there to lead our family through when we are ready to pass on from this life. He is with a lot of family that have been waiting for him and he is "Uncle Tyler" to all of the grandkids that will someday join us on this earth.
I love you Bodie and will miss you, I am so happy you do not need to suffer anymore. You are able to see again and you are able to communicate again, and you can now see how lucky you are that Heavenly Father protected you from the evils of the world. I LOVE YOU!!!!!!! I LOVE YOU!!!!!!! I LOVE YOU!!!!!!! I will miss you like crazy. Love, Jamie

Sorry for the misunderstanding - by Jamie

I think I may have caused some misunderstanding for a lot of people from my last post. I know it sounds like Tyler has already passed but he has not yet. His body is still so strong but his brain is not, so it is a matter of waiting for the rest of his body to give out. I know this sounds bad, but for as young as he is and as strong as he has been it is just taking a bit longer than we all thought it would. It could be any time now though. Please keep my family in your prayers, this is so much harder than we all expected it would be. Thank you.

Worlds greatest Uncle -Johnson kids

I love you Ty. I hope you will be better soon. I will miss you. I have been doing our special handshake with my friends. Love, Devin

I love you ty. i hope that you dont have to be in pain for very long.
love emilio.

Hi Tyler!I love you so much!I will miss you.You are the best Uncle ever!
Love,Kendra

I love you Bodie, and will miss you. Update by Jamie

I don't even know how to start this post, a lot of times it is not so difficult to express my words written down but this time is so much harder and I don't even know where to begin. Especially after reading the thoughts of my sisters, I just cry and wonder what to say. Tyler is such a special person and I can't say how much that I love him and adore him. He has such a huge heart and so much love and respect for everyone around him. Even if he didn't like someone he showed respect towards them. His manners were so great, especially when he was in the care center, he showed so much gratitude to others and realized the efforts of others on his behalf. We have all been so blessed to have Tyler with us for almost 3 months longer than we expected, and we have all gained a stronger love towards him. Heavenly Father has blessed and comforted Tyler and is ready to take him home. I know without a shadow of a doubt that we will all see Tyler again someday. How lucky for him to be away from the evils of the world and go to a better and more peaceful place, a place where there are no temptations to do evil. A place where so many family members are and will welcome him with open arms. We know that Tyler will be well taken care of and will be guided into heaven by grandma and grandpa who just passed away last year. I know Tyler will be there to guide us through when it is our time to pass on as well. He is the leader of the pack now and will greet us and guide us there. I am so grateful that Tyler had this time to repent of his sins and grow closer to the Lord and have a greater faith in Him. As someone once said not too long ago, our trial is not so much what we are going through physically but the trial is knowing how to grow a greater faith in the Lord and understand that He knows our needs. I know Tyler has done this and it is time for him to do good on the other side. He will be a great teacher and leader to others there.

I love you Tyler, I will miss you like crazy. I will miss going up a 2-3 times a week to see you and help you and make sure you were being taken care of. You will NEVER be forgotten. You will still be our baby brother though physically you will not be here. I KNOW we will see you again, and will still be our baby brother. Having the title of the "Baby" will never be taken away from you. That is a special role you played here on this earth and will continue to stay with you. Your spirit is so strong and I have no doubt that you will do so much good on the other side.
As Lisa said, "God be with you till we meet again...."

tears. I love you. tears. I love you. tears, tears, tears.

My baby too! love Holly

I was 12 when Tyler was born. We bonded the very first moment I saw him. A funny thing happens when you are an older sibling. The younger ones feel more like your own. It is so hard for me to see you in this state. I tried to no avail to sing "I am a child of God" to you today, I got the first sentence out and cried. Started again and didn't make it much farther. Ended up just saying the words on the chorus. I sang to you every morning at Jordan Valley when it was just you and I. Special moments only shared by us. I wish sometimes that you had married Tehra and you had babies so we could have a piece of you. But I realized that a piece of you lives in my own son. He looks like you, acts like you, and is even as bold and stubborn as you. So I guess I do have a piece of you. I thought that once we had come to grips with the decision to let you go, it would somehow make it easier, but I was wrong. Doesn't matter how much you prepare, it is still hard. I love you more than life itself. You will always be my baby too. My bodie. My baby brother who at some point that I don't remember, got to be so big. May you move on and continue to grow and accept the gospel on the other side. It is okay to go. We will heal. And you will be free. Free from all the demons of this life. They can't reach you now. You are now invincible. May your strength live in all of us. I love you buddy. You are the light in my life. My star.

The day has come..

Ever since Tyler was revived when my parents found him, he has progressed so much. HE did so well at the care center he was at, and was learning how to walk again and did so well at it, he was able to feed himself, and was able to talk to us. Since he has not been able to swallow and open his eyes he has digressed and is continuing to digress. Tyler is not getting better nor will he ever. You........ have no idea how hard this if for me to say this, but Tyler is passing away. My brother is leaving this world, to go to a happier life. He is finally going to be free from the evil temptations of this world. He IS going to be happy again.

I don't even know what to say right now, I can't get words out right now because of how emotionally painful it is. I love you Tyler.....more than you will ever know. I am so happy that you wont have to struggle anymore. I am so grateful for the plan of salvation in knowing that we WILL see you again. And most of all...We will be a forever family.

May God be with you til we meet again......


Love,


Lisa

New perspective by Lisa

I have recently been given a new perspective on pain and suffering. Here I complain about having a headache here and there, having a hang nail that is more annoying than anything, having a back ache, complaining about stiff muscles from working out. I complain about these little pains, and it honestly is nothing compared to what some people have to go through and have gone through. Seeing the pain that Tyler has been going through just made me realize that my pains are NOTHING compared to what he is going through . I know I need to appreciate my good health a little bit more and just remember that there are worse people out there who would give anything for my pains rather than theirs. I feel so sorry for those people who have to suffer so much. It just saddens me. I wish we could all be pain free, physically and spiritually. But, sometimes we have to go through hard times to learn and grow. Sometimes we need to see and hear about hard situations to build our faith, among many other things.

This life is not easy, but knowing that life is better on the other side, makes me want to live this life to the fullest and be the best that I can be so that I can move onto a better life and see those loved ones who have passed on again, and be away from all evil.

Adventure...

Just so you all don't think we completely stopped blogging about Tyler, he is still hanging in there. He did get the (temporary) feeding tube and it seems to be doing it's job. Hopefully soon, he will start gaining his weight back that he lost. He still has a rough time opening his eyes because his brain just won't let him. But, they are giving him a different type of medication for that and for his swallowing. So, we'll see how that goes. It's been a rough couple of weeks for him. It's been a rough couple of weeks on all of us. We are all trying to stay positive so that he keeps positive too. We haven't posted pictures of Tyler because we know that he would not want everybody to see him the way he is right now. When he gets all better, we will have more pictures for you!!!
Thank you for all of your thoughts and prayers in behalf of Tyler and our family. Thanks to all of you that visit his blog and stay updated. I know this has changed some of your lives, by what you have told me. If this has changed your life or somebody else that you know, feel free to let us know, so that we can put it in Tyler's book to remind him how many lives he has changed, so that when he pulls through this, he will stay strong too. We appreciate your Love and concern!!!


Love,

Lisa

Feeding tube - update by Jamie

Without getting into too much detail, we wanted everyone to know that Tyler had surgery to get the feeding tube today. He is doing ok since and we are just praying now that it will give him the nutrition that he needs.
Thanks for understanding that we have decided not to say too much. We are just protecting Tyler's privacy right now.

Update from Jamie

So, mom and I went up today to see Tyler. As Lisa said in her last post, he is not really doing too well. Because of privacy reasons we are not putting too much detail into the blog anymore.
I will say that watching Tyler go through this is extremely difficult for all of us. We appreciate everyone's prayers because we know that is what is keeping us afloat of all of this. Once we get Tyler back on track with getting some nutrition, that will probably help especially with his energy levels. Having no energy is really dragging him down. Hopefully we will soon see a good turn around and he will be back to where he was 3 -4 weeks ago. For those who are really close to Tyler and want to more know more details, please call one of my sisters or myself and we can fill you in. Thank you for understanding and thank you again for all of your prayers, we are all so grateful.

Oh, if you leave a comment and you are listed as anonymous (hint hint Shawn), please let us know who you are at the end of your comment so we can relay your comments to Tyler and know who it is. Thank you.

So hard

Tyler hasn't really been improving the past few days. He is just at a standstill right now. It's hard to see him suffering like he is. It's been really hard to communicate with him lately. He for sure can't talk clearly anymore, and has a hard time acknowledgeing us when we are there. He has lost a ton of weight too, probably in his 130's now. It's extremely hard on all of us to watch him go through this. All we ask (Only if you want to) is to keep him in your prayers. He really does need it right now. Thanks!!

Love,

Lisa

update, by Holly

okay, today was a little better. You can certainly tell when he has his meds. His eyes were open and all. He was doing therapy when we came up. He walked really well. It was nice to see him wearing shoes again. He had a hard time communicating as usual. He didn't like it when Kacee was watching him eat today. She walked away and he just gave us that look like "What the heck is she doing." The "I don't care for her" kind of look. I just told him that he didn't have to say a word, I understood it all.
eating was difficult. But looking at the food, I wouldn't want to eat it either. They made his roll soggy. Who likes soggy bread? Not me. He finished his shake and his ensure shake. He had a couple bites of icecream, and a couple of bites of his chopped up pork chop. You can tell that he really wants to eat, but just can't quite get it down. Maybe Mike needs to get him those weight gainer shakes.
They took him to the hospital last night, but sent him right back because there wasn't anything they could do. I suggested to Julie today that they should consider doing the injections first thing in the morning so that he can start off his day better. I think that the problem lies with whomever is giving him the meds. Sometimes he doesn't swallow them and spits them out in a napkin. they aren't making sure he gets them down, and when he doesn't, they don't do anything about it. If he can't swallow it, they need to inject it, because he needs it. He can't go and skip a dose. This all makes sense to all of us, why not them? I don't know, go figure. He always does really good when larry and ashley are there. I am going to go up with them one day. thank you, you two, you are awesome friends and he adores you!

Update on Tyler by Lisa

Hello!! Well, Jamie and I went to visit Tyler today. Shawn came up with Adalie a little bit after we did. It was his Birthday today and so he had a day off and decided to go see Tyler.

Well, anyways, when we got there Tyler was doing physical therapy. He did really well and he walked really well from the therapy room to his room. He is doing a lot better at walking straiter too, and that was with his eyes closed. I am sure he would have done a lot better if his eyes were open. Now, I bet you are all wondering why he had his eyes closed aren't ya? Well, Tyler was pretty much back at where he was last week, where he couldn't open his eyes and he couldn't swallow. These things are happening because he has a hard time taking medicine and because he skips a couple doses, then it takes him back to where we were at when this whole swallowing and eyes crossing thing all started. So, hopefully they will figure something out.

I don't know why Tyler isn't taking his medicine. It's so weird. I don't know if it is because he knows what the side affects are or if it tastes really bad, bad enough that he doesn't want to swallow it or maybe he just really does have a hard time taking medicine, I don't know. It's probably not any of those reasons. But, we try to tell him over and over again that he NEEDS to take his medicine.

So, that was our day today. It was still an okay day. It wasn't as bad as it sounded. I just like to see the happy Tyler that can swallow and see. He did laugh a couple of times.

Anyways, Tyler just loves little kids. I know I have already said that a million times, but he just loves having his nieces come over to visit him. We tried to get some pictures of Adalie with Tyler but she didn't really want to have anything to do with getting her picture taken today. I was able to get a few.



walking side by side with Tyler

Audrey was going to give Adalie a hug. Adalie wasn't sure what to think! :)

High five "Down low, she's not too slow." :)

Tyler was really trying hard to open his eyes for the picture but he couldn't.

Audrey loves her Uncle Tyler.

Jamie was reading Tyler some of the entries in his memory book.This is the closest shot I was able to get of Adalie with Tyler.

Update from Larry and Ashley

Wow....so much I can't even explain...our visit with Tyler today went SO good! He was doing absolutely AMAZING today! We were really nervous to go because we weren't quite sure what to expect...but oh my gosh, it's the best we have seen him yet! Warning though...there is going to be a lot of pictures! Some might be blurry because I was trying to take them so fast.

Don't worry Tyler...you still have a lot of muscle!

Uh oh...he was already sick of me taking pictures...and I wasn't even close to being done!

Larry joking around with Tyler about his Raiders bear.

Rick and Larry about to help Tyler into his chair.

We brought him back a burger and fries from Central Park (a place they used to go as kids) and while we were all eating...we just couldn't stop laughing! Tyler had a piece of the straw wrapper on his finger and he touched his lip and then hurried and sucked it in because he thought it was food. Larry was like "No Tyler don't eat that!" Tyler hurried and spit out like all of his food on Larry hahah it was so funny! Tyler was such a BLAST to hang out with today. These are all the pictures from lunch. I had to show you Tyler laughing and smiling because I know those are the best!

He was on one today haha he wouldn't stop talking (which we loved) and making jokes! They talked a ton about funny memories they had growing up together which was really good for all of them. We could totally understand him no problems. And if we did have a hard time at all, he would slow it down and try and talk clearer. He was able to finish his entire hamburger and half of his fries. He also ate some candy that his mom brought him which he loved.

We all couldn't stop laughing...it was such a good lunch!

We hung outside for a little while because it was so nice. After that we pretty much just had a couple really good talks with him and then we left.


I was trying to secretly take another picture of him because he was about to kill me...but he smiled for me!

We were with him for awhile and I wish I could tell you guys everything we did and everything we talked about but I don't even know...all I know is that today was a VERY good day for Tyler!
We love you Tyler and will see you next weekend!!

Tyler's been discharged again - updated by Jamie

These are pics of Tyler before they discharged him from the hospital.

So, they discharged Tyler from the hospital today. Holly and Troy and Lisa were there when Gene and I arrived. I actually got there at the right time because the neurologist showed up just after I did to check Tyler's status. They started the medication yesterday to relax his muscles. It is nothing like a muscle relaxant, but something to control the brain to know how to relax the muscles if that makes any sense. Well, this seems to have helped quite a bit but it certainly has some side affects. Tyler is now able to open his eyes again and they are not crossing as much. They still cross here and there but it doesn't take a whole lot for him to fix it. So, I was pleasantly surprised to see this. They were also able to get him to swallow some food today and that is the reason for the discharge, they tested him a couple of times with this and felt comfortable at sending him back on a soft or chopped diet. I was actually really skeptical of his discharge at first because this is the same thing that happened last week when he was discharged. He was doing so well at the hospital and a couple days after he was discharged he went back down hill again. Well, they think with this new medication it may not happen again. If it does get to a point where he needs a feeding tube the care center can take care of that too. But, hopefully it will not come to that.
See, the beginning of my skepticism happened when one of the social workers at the hospital called me to see where to send him back to. I asked her if he was really being discharged already and she said that he is doing better, so I talked to the nurse and she assured me the same thing. So, I was glad that we were headed up there anyway so we could talk to the dr. before he really was discharged. Now, he is far from better because this medication has some interesting side affects. Tyler's memory is likely to be affected with this as well as his movements. Though Tyler is much more relaxed and and not as restless, at the same time he doesn't have a whole lot of control in sitting up, walking or even giving hugs. He was getting really good at giving hugs and getting up out of his chair and even walking with assistance. Well, some of that has changed again and it seems that we are back at square one with helping him move around again. This medication is sedating as well so he is more sleepy and very out of it. The Dr. asked him if he could tell him who Holly was and he couldn't. He knows, but he just couldn't say it. When I asked him if he knew my name he got really mad and frustrated. He knows, he just can't get it out like something is holding him back at doing too much. He still understands us and we were able to get him to laugh a few times. So, the medication is kind of bitter sweet. It is great that he can see again and he can swallow food, but his mood has changed. It seems that he is in his own world sometimes, but trying to express what he wants us to know at the same time. Does any of this make sense? It is so hard to explain if you haven't seen him.
They are trying to figure out a good medium of the medication. The neurologist thinks they may have given him too much and wanted to lower it a bit to see if that would help any.
Trying to give out hugs was really frustrating for him because it was hard for him to lift his arms up, so you see what I mean when I say we are kind of at square one again? Maybe not square one, but not too far off. It is going to take a lot of effort to get him back on track to where he was before he was crossing his eyes. But, we can all do this and we have to encourage him more and more that HE can do this too. I imagine too that when he gets use to the medication he will be somewhat better. We have to be careful at what questions we ask him because it takes too much effort to try and remember some things.
What a roller coaster we have been through. I hope you are understanding everything I am trying to say here, it is just so hard to explain. If you have questions, leave a comment and we can try and answer them.

Results from the Neurologist - By Jamie

So, Holly and I went up to see Tyler yesterday. I mainly wanted to go up, not only to see Tyler of course, but to see what is going on and find out what the plan of action is. It sounded like they were suppose to transport him to the hospital on Monday night again and when I asked the head nurse she thought the same thing. So, just after we got to the care center I talked to the head nurse to see what our plan was because we can't just sit here and watch him get worse and worse. He is not getting enough nutrition for one thing, the only thing he can get down are shakes pretty much, anything else is really tough for him to get down. He has lost so much weight that it is getting very concerning. The nurse agreed that we needed to get more tests done, so she called the hospital and the ambulance to get him transported to the hospital.
Tyler has gotten to the point where it is really really hard to open his eyes, and not because he doesn't want to, but it is just so difficult like he has to work his brain really hard to get them open. And, when he opens them it has to be in a darker setting because he is very very sensitive to light. So, it took only like 15 minutes from me telling her we need to get him to the hospital that they came to get him.
We were in the ER a long time; when do you ever go the ER and have fast service? I have never had a quick/pleasant experience in the ER. They ran some lab work and gave him a liter of IV Fluid while he was in the ER. Finally, around 6pm they got him admitted to a regular room. There we talked to the Dr. there as well as his nurse and aid. At the time we were giving the dr. the run down of what was going on the neurologist came in. So, it was good that we were there so we could explain our concerns and what not. The regular dr. that was there was also his dr last week so she knew the background and what the problems were. What nobody understands is why he was doing so well at the hospital before they discharged him to doing a complete 360 and digressing to a scary point. Oh, another reason why I said let's get him to the hospital was because they coudn't bump up his neurology appointment from the 15th. So, I know there is an on-call neurologist that will be able to assess what is going on. We were lucky to find out the on-call neurologist is the same dr that he was scheduled to see in the first place. The neuro. really knows what his is talking about and tried to explain things to me that I could understand. He could tell that I was really skeptical at some of the things he was telling me and I was able to express my concerns and get some answers.
This is what we do know from the neurologist. The EEG showed no activity of seizures. The MRI though did show that he had a mild stroke that affected both sides of his brain. Although he is not sure if it is significant enough to cause what is going on. It is really hard for him to be able to give us a definite answer as to what happened. He said it could have been from the meds he was taking, it could have been the stroke, it could have been an infection. All of which he has had. We do know that taking him off of his meds last week didn't make any difference in his condition. It could have played a significant role in causing the damage though.
The dr. said that all of his movements and restlessness is all from the brain injury and all of his muscles are reacting involuntarily, and he really has no control over a lot of them unless he really concentrates to make it stop. For example, he was able to lay still while they did the EEG, and he is able to use his muscles for what he needs them to do, but at the same time his muscles are always doing things involuntarily. I hope this all makes sense. I'm trying to explain it the best I can. The dr. called these involuntary movements "distonia" or something like that. He doesn't have anxiety and he can't really control the movements. Such as with his eyes, it is really hard for him to even open them because his muscles there are working over time and are contracting and are tightening like crazy, so it takes a lot of effort for him to use the muscles to open them. He said until we get him to open his eyes for a long amount of time they can't do anything about the crossing because they can't see his eyes if they are not open (duh).
He said that one way of helping his eye muscles is to give him botox injections to loosen the muscles. That would have to be done like every three months if he can't control them to stay open.
As far a Tyler's swallowing goes, that is a bit of a different story. The Dr. is pretty worried about this and said it is very possible that it could get worse to the point that he can't swallow at all. Right now he is even having a tough time just swallowing his own saliva. It is very possible that he could end up with a feeding tube going straight to his stomach. I don't know how that will even work for as much as he moves around. He accidentally pulled out his IV nd it is just because he is moving around so much but can't control it. They did a swallow study this morning but couldn't get much out of it because he can't swallow. The Dr. says this has everything to do with his "distonia". So, the speech therapist is working out a plan on getting him some nutrition, but the poor kid is just starving to death (literally?, maybe). Tyler's weight is down to less than 140 pounds now, he has lost over 50 pounds since this whole thing started. He really can't afford to lose much more, he is just skin and bone now.
Everything that the dr is seeing is neuron damage in the brain, of which cannot be fixed. It is really difficult to treat brain injuries. I am really worried about this, especially because Tyler knows what is happening but doesn't have any control over it. I know he is very scared and frustrated. How would it be to have the desire to drink and eat but not be able to? How would it feel to going from seeing fine to being blind basically. Although his eyes work as far as seeing goes, if he can't open his eye lids he will be basically blind. The dr. said he will be able to continue in his physical therapy and be able to eventually walk on his own, but he will continue to have the muscles moving involuntarily.
I hate for this to be such a downer post, but the reality is that Tyler really is not doing too good right now. I have complete faith in Heavenly Father and I don't want it to sound otherwise, but it is so hard to know what Tyler's future is going to be like. What is the reason for all of this? This is almost worse than the feelings I had when I couldn't get pregnant for so long and couldn't figure out why. But I do know for sure that everything happens for a reason, and I have had many experiences in my life to not doubt that. I just pray that things will get better for Tyler, and that Heavenly Father will help him through this every step of the way.