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

September 1st aka. Taco Tuesday

Can you tell I am hungry? Remembering dollar tacos with my gal pals from my old job, seems like so long ago. I think things caught up with me this morning because I could not stop crying. I would think of Tyler and the tears would flow for a few minutes and I would try like crazy to pull myself together. Then I would walk down the hall and see a baby and start crying all over again. The lady at the cafeteria handed me my breakfast and I managed to get the “thank” part out before I started crying again! Security and the nice people in the lab coats assure me they will take take these pretty ribbons off my wrists and ankles soon. So that’s pretty exciting.

After some gentle coaxing from Trey I went back to bed for some much needed sleep. What a world of difference when I woke up! I managed to not only to put on the purple eyeliner but managed some eyeshadow AND mascara. (Lady’s you know this is a big deal). On the way back to see Tyler I passed 2 babies without incident or damage to my eye war paint, so things are looking up. I am hoping to get over this hump where he is better stabilized. Then I think I will be able to relax a bit and get on some sort of schedule and where I won’t constantly be on edge and worrying. We will get there for sure!

So, we had a little dip last night and had to bring the respirator back up to 100%. They did a chest x-ray last night and the nurse said that sometimes the smallest things will result in a little setback. Right now he is in such rough shape that what we consider minor small things are actually huge things to him. But the good news from that is his lungs continue to improve and have gotten “better” (per the doctor) since yesterday’s x-ray. Woo Hoo! And I am not sure if I stated already, but his heart doing really well. And they are working on those kidneys. So, bring on the pee! 🙂 This whole process is such a balancing act. Take care of one problem, and 2 more problems pop up due to the treatment of the first problem. Then to treat those problems, you have to look at the bigger picture and figure out how your treatment is going to affect all the other issues. It is a very intricate dance that his entire medical team has to consonantly navigate and collaborate. It really is a eye opening thing to witness, Right now he is extremely swollen and it looks so very painful 🙁 There is so much fluid he is retaining and they are working on getting it out very slowly so it is not hard on his body, plus they have to keep a certain amount of fluid for the ECMO machine. See? There’s that delicate dance. Now I now why Alex Rose sings about “Patience” “Said woman take it slow, and it’ll work itself out fine all we need is just a little patience” It has been a little more than 24 hours since they started the dialysis machine at a level of 120. Because he is stable and tolerating it well, they just bumped it up to 130. The goal is 150. Possibly higher, but definitely 150. I am also happy to report that they were able to bring his respirator down to 70 throughout the day. Remember we had to bring that back up to 100 last night. And while we were at lunch he did wake up a little and the nurse said that he was making “conscious” moves. I don’t believe that was a Sedation Vacation, but a voluntary wake up. But she had to dose him back up again so he didn’t get further agitated.

I am also happy and proud to report that Schulyer has joined the football team and is ready to kick some tail on the Gridiron. That’s a football term right? Well at any rate, GO EAGLES! Tyler is rooting for you guys! Does anyone want to take over duties of the “Wesley” head? Tyler has it in his closet and we can get it to somebody to “pass the torch”. Also I am happy to report that Emily, my wonderful and beautiful daughter made dinner for Trey’s parents and cooked bacon and chicken all by herself for the first time! I am sad to report she is addicted to Pinterest now like me. 🙂

Until next time, keep those prayers and good thoughts comming

Thumbs up! (still in the loop)

Love,

Team Tyler

A little thanks to a few great great friends

I am going to let Michelle give the update later today, but know although we hit a few bumps in the road Tyler is still progressing well. All of you are aware of Schuyler and his amazing heroism he displayed while our son was in danger and there are also countless people out there that we continue to want to thank for their help with our journey.

We have shared stories about Tyler and his baseball passion, but this thanks goes out to the Godwin Varsity football Players who worked out with Tyler. Several of Tyler’s friends play football and encouraged him to tryout. He decided he would like to try to be a kicker/punter. Tyler began to work out and would run with them around the neighborhood and on Saturdays do a grueling workout on the field. I wanted to mention these guys as the doctors keeps telling us how it is on his side that he is young and also in very good shape. They say they have a few Marines who get injured showing up at the hospital and they keep comparing Tyler to them health wise. So thank all for giving him some extra strength with those workouts.

Monday Monday,,,, Da Da

So, we had what the doctor called a “half step” back. Tyler is having some problems with his kidneys and is being put on dialysis to filter his blood of fluid. At first we were concerned he would have to go back into surgery for ports to be inserted but soon realized that he already has the correct “equipment” installed. Sort of like computer drivers. 🙂 The tubes and lines already in his neck will work just fine as I understand. That was a huge relief to us because his chest and neck area area on his left side is pretty damaged right now. Remember I talked a little about his “tie dye” chest? Well that area around his chest in neck has begun to blister and the skin is paper thin. They think due to all the meds they had to push into him in such a short time. It will heal over time, but we are glad that that area can be left alone for a little while. Right now they calculated that Tyler is holding approximately 40 cans of fluid in his body. What a hoarder right? The doctors are pretty confident he will have no long term kidney damage. AND it’s not uncommon for the dialysis machine to be needed. Nor will he need it long. Just an aid in his recovery.

This morning on our way to the cafeteria we rode the elevator with an older man who was pushing a wheelchair with a box in it. He said he had just driven in from Nashville to deliver some medication for a patient. Being here has really opened my eyes to alot of behind the scenes events we take for granted. I started thinking about this man driving overnight from Nashville and I gave him a quick big hug and said “thank you for what you do.” We parted ways and I started my hunt for Cheerios because at the ripe old age of (cough, cough) I still love Cheerios. Without milk. When we got back to Tyler the nurse began giving us an update and said that his medicine had just arrived from Nashville and was being given to him. Trey and I both looked at each other in complete astonishment! The man we had JUST seen in the elevator about an hour prior! We believe that was the very man and that large white box we saw in the wheelchair was actually our son’s medication. Isn’t that crazy wonderful?

We also found out today that the surgeon who actually performed the ECMO surgery actually graduated from UVA (Go HOOS!) and his parents actually live pretty close to us? How that for a coincidence? You see, those prayers are putting people exactly where they need to be.

Trey is sitting beside Tyler right now holding Tyler’s hand and I am looking over there and see no less than six different computer monitors behind him. And on his left side there are three machines. One that looks like a large college refrigerator that is hooked to the ECMO machine, the actual ECMO machine itself, and the dialysis machine which is now hooked up and doing its job. I am not counting the IV drips but there are so many things hooked up to this kid. Things that will bing, bong, and, buzz but the nurses are right on top of everything.

They just moved Tyler to a new bed which one of his doctors called the “Cadillac”. I kid you not when I say this bed has a touch computer screen on the side of it. Not only does it have WIFI but will help prevent any bedsores and also fix the issue we had of his feet touching the foot of the bed. He has a corner room with two windows which I call the “Corner Office” So the kid is ballin’ in his Cadi in his corner office. Right now his respiration machine is at 60% down from 100% which is very good. They want him to be around 40% before they will start backing off the ECMO. So we are moving in a positive direction. I continue to be very encouraged and hopeful.

I wanted to say also of how proud I am of Emily, Tyler’s sister. She has really stepped up around the house, cleaning, doing laundry, taking care of our 2 cats, 2 dogs, and 2 fish. I am so proud of that girl it is unreal. I am truly blessed to have such great kids. On top of almost loosing her big brother she is starting a new high school next week (for visual arts) that is across town and won’t be around too many familiar faces. She is currently back at our house with Trey’s parents and Trey is probably going to come home on Saturday or Sunday before Emily starts school so they can get a routine down and just get back to some normalcy. Thank you. Those two words don’t seem like nearly enough to express the gratitude and love from family, friends, community, strangers, and the team working with Tyler.

I will ask you to continue those prayers and thoughts because they are working (remember elevator man) they are showing up in all kinds of places.

Thumbs up! (we didn’t get to work on that today. New dialysis machine and moving to a new bed are hard on a body. But that continues to be our short term goal.

Love,

Team Tyler

Sunday

I started this email around 3 and was almost done then POOF! I lost it.

Most of you have already seen Trey’s earlier post about seeing Tyler open his eyes and look at him. What a great start to the day!

We also got the opportunity to meet Schulyer’s grandparents and Aunt. As you remember after Schulyer rescued, Tyler out of the water, it was Popi and another person who performed CPR. What a great family! If they will have us we would like to consider them part of our family as Tyler’s “Bro-Grandparents”. We eat out on Christmas Eve, so pencil us in. 🙂 ha ha. In all seriousness, they were where God needed them to be and he gave them the strength, courage; and knowledge to do what they did that day. Please say a prayer that they find peace and comfort because I am sure it is emotionally taxing.

To everyone on Bald Head Island: to those who directly helped Tyler, to those who assisted with the coordination of getting the Med Flight, to those of you that helped Schuyler’s family and those who have and continue to pray for Tyler. We are so thankful and grateful. I hope that one day in the near future my family will be able to thank you properly in person. Does anyone know who else performed CPR? I would love to find out. Feel free to pass this Caring Bridge site out to anyone who wants it and also keep those prayers coming they are really working. So, we had another “Sedation Vacation” this afternoon. Want to know what its like? The doctors, nurses, and respiratory therapist gather round and someone rolls out a Margarita machine. I grab my purple eyeliner and awayyyyy we go! You can join the party but you must have purple eyeliner, wash your hands, and be able to rock a fancy smancy paper thin yellow cloth gown. It’s all very VIP.

In reality what happens is the nurses back off the sedation and watch for signs of movement. They want to know how long it is taking for his body to respond and how he reacts. Today around lunch he opened his eyes a couple of times and looked at me. And what was awesome is that he moved his mouth like he was trying to speak. (the nurse agreed so I can say this with confidence. Although I suspect he was trying to ask why I was wearing purple eyeliner. (But YEA!)

These awesome nurses tell me it is like coming out of a fog because he is so heavily sedated. It really is a double edged sword because I love seeing him awake and seeing movement but it is so very hard to think how confused and scared he must be waking up. He keeps trying to move his arms and legs but he is being held down and I am sure all the tubes around his neck and in his throat isn’t exactly pleasant. I have to keep reminding myself that these hard times are all part of the healing process and are actually positive. I just stroke his head and tell him over and over how much we love him, how proud we are of him, that he is safe, and how many people are praying for him. I can only hope and pray that it gives him comfort.

Each time a sedation vacation takes place (2x a day) they want to try to extend the time to allow his body to adjust and the goal is to have him be awake but relaxed. Our new “command” goal is to have him give the thumbs up. The ole’ hitchhikers sign if you will. When that happens I am told that’s a big positive sign from a neurological standpoint. ** do not pick up random people on the road with their thumbs up. It means something completely different. Just a little F.Y.I.

Right now our little “hump” is getting his blood clotting stabilized. Based on Tyler’s blood levels and what happened to ECMO1 the doctors suspect that the cause could be something in his blood that is not compatible with the blood thinner drug they are using. It is like a puzzle in that each piece much match or the drug can’t work correctly. The doctor has consulted with a colleague at Chapel Hill who recently came from Michigan which I am told, is the “Hub” of the ECMO machine world. There is a test that they are running but it is expensive, has to be sent out, and will not be back until Wednesday. Rather than wait till Wednesday both Chapel Hill, Michigan and our doctors are leaning towards it being an issue with Tyler’s super power clotting ability and they are slowing beginning to make adjustments.

This whole hospital has really taken a special interest in Tyler and it seems that everyone is keeping tabs on his condition. One of the nurse administrators came today to check on Tyler and I found out that her husband was one of the flight nurses that brought him in. By the time she left my purple eyeliner was gone. Someone needs to make an “Ugly Cry” line of eye makeup. Just sayin’

So as we stand right now, Tyler is still on life support, but showing signs of improvement. He has a long long road ahead but please keep those prayers coming.I can assure you each day and want to encourage you all that they are working and that your efforts are not going to waste. Some of you may not know that Tyler coaches Little League Baseball which he has a passion for. This year alone he has coached three teams: Spring ball, All Stars and an Invitational team. His All Star team made it to 2nd place in our division of the state which is quite an accomplishment. He adores those boys and they really look up to him as a positive roll model. We have been watching the Little League World series together and before he went on vacation I told the kids that next year we were going to Williamsport, PA to watch some games . He said “Mom, we don’t’ need to go next year because my boys are 10 now. In two years they will be 12 and we are going to the World Series then.” That’s my boy!

So, until tomorrow. Keep praying and keep those prayer chains going

Thumbs up!

Love,

Team Tyler.

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