A-flutter update.....

It is necessary for Ryker to have his pacemaker interrogated regularly to make sure it is functioning properly and to make any necessary adjustments. The pacemaker is interrogated by putting a little box like device (which is connected to a pacemaker computer) on top of Ryker's pacemaker and running the tests. Today when the pacemaker team set the device on Ryker's body above the pace maker, it once again sent his heart into A-flutter, just as it did the last time they performed the interrogation. The only way for them to get him out of the A-flutter today was to once again use the defibrillator paddles. Ryker responded right away to the defibrillation and is doing well now. Jason said he got to have a little bit of fun with Ryker today bouncing him. He said at one point Ryker was looking at him like WHOA no one has bounced me like this before. I am sure Ryker was loving it just as much as Jason. Other great news is that he is back on breast milk and tolerating it well.  

Thank you for all the prayers, thoughts and concern. We very much appreciate your support. We hope that the doctors can figure out quickly why Ryker's heart keeps going into A-flutter. 

A-Flutter

Ryker went into A-Flutter again this morning, once again they had to use the defibrillator paddles to get him out of it. He is out of it now. Please keep Ryker is your prayers that they can figure out why this keeps happening and prevent it in the future. Thank you.

Update & upcoming events

May 25th - "Miracle Ryker" status update - Just finished with morning rounds and I am so EXCITED---After almost 5 weeks of Ryker being on both Vanco & Zosen (antibiotics) plus his regular daily dose of amoxacillin They finally decided to stop them & start probiotics with his FEEDS that will be starting in about an hour!!!!!!! Wahoooo!!! He hasn't been able to really eat good since long before his last surgery & I have always felt like the antibiotics were hurting his tummy on top of everything else & I have literally begged for probiotics till they all thought I was crazy! :) Just keeping my fingers crossed that he tolerates the feeds well so we can fatten up this cute tiny baby!!

May 26th - "Miracle Ryker" status update - Because of Ryker's complex anatomy & his stomach being on the wrong side it was a process to get his feeding tube to NJ (into his intestines) but finally after 10+ tries & 3 x-rays it was placed as of about 9pm last night. :) Now Ryker has been on his feeds for a little over 12hrs at 2cc's per hour (they are starting extremely slow) & has tolerated it well, so they just upped it to 4cc's per hour a few minutes ago. Please pray he continues to tolerate it well with no pain!!

May 28th - "Miracle Ryker" status update- Ryker had a good night! He is up to 10cc per hour on his feeds & doing great with that. They would like to get him up to full feeds by tomorrow (13cc per hour) & once he has tolerated full feeds for a couple days they will consider pulling his NJ tube to NG (in his stomach) & from there he may be able to finally have a bottle :) :) :) Poor little guy has had an empty stomach for about 4 weeks now, I can't even imagine the hunger pains he has. Hopefully the tummy feeds will come soon & he will tolerate them well!!

As you can tell from the status updates above Ryker has been doing GREAT! and we are all so thankful for all the positive prayers, energy & support. We are blessed and thankful for the amazing family and friends that surround Ryker, Jason, Rachel, Trett, Jadd, Braylee and Addisyn.

Jason and his family continue to deal with overwhelming expenses during this time, any help is very much appreciated. The money we continue to raise it being used for many ongoing expenses including, the loan payment for the jet (Ryker was flown via air ambulance to Boston), current living expenses (food and hotel room), moving expenses, transportation expenses and many other expenses related to the sudden unexpected cross country move and fight for Ryker's life.

EVENTS & HOW YOU CAN HELP
- Make a tax deductible donation through this blog to Children and the Earth (please notate for Ryker).

-If you are in the Salt Lake City area there will be a Miracle Ryker benefit garage sale June 2nd at 8AM Address:  3818 W Alna Cove (12300 S) Riverton

-Attend the neighborhood party for Miracle Ryker June 9th at 5PM Address : 14165 South 2600 West Bluffdale
- Sign up for the Brain Wave 5K event (please select "Team Miracle Ryker & Easton". https://events.regtix.com/childrenandtheearth.htm

Morning after extubation

Update from Rachel - Ryker had an awesome night!! There were only a few times that he woke up a little upset, but nothing major! :) I laid down at 1am thinking I would just rest my eyes for a second until he woke up again, then the next thing I knew it was almost 5am & I was in a panic thinking I must have slept through him waking up. But the nurse said he was a perfect angel the whole 4 hours I was asleep & didn't cry once and when I walked over to his bed he was wide awake talking to & smiling at his nurse. Such a sweet baby boy!!!

Update & Ellen

UPDATE#2 EXTUBATED- thank you for your thoughts and prayers, please keep them coming especially for the next 48 hours as Ryker adjusts. 

The update I have gotten today is that Ryker was taking his time waking up from his paralytic. So far no other news. Friend & family please take 5 minutes go to Ellen's website http://ellen.warnerbros.com/show/respond/?PlugID=10 and fill out the form suggesting Jason, Rachel and their family for the show. It is my hope that Ellen could help them in any way ie. food, housing costs, transportation costs etc. Thank you for your support.

Rachel Watson Warner's status on facebook: 

LOL!! As I am sitting by Ryker's side waiting for him to wake up from his sedatives the Attending Doctor comes in to check on him & says-
"Ms. Warner, I have decided that you are just TIREDLESS!! You are here by Ryker's side 24hrs a day, never sleeping, ALWAYS with a smile on your face & nice to everyone Plus, your hair always looks great! How do you do it? I have decided you should get Mom of the year!"
LOL!! That made my day....even though my hair absolutely does not always look great (its hard to have it look great when I am limited to time with a shower:) But Thank you Doctor!! :)
Now lets get my baby EXTUBATED!!!! :)

Update from Rachel

Because of MANY tests being run to ensure they have ruled everything possible out before extubation our poor baby is still intubated! :( They have kept him fully sedated & slightly paralyzed in the process because of how upset he gets having the tube down his nose & to prevent him from extubating himself like he tried last time around...feisty little guy! :) So now that they have done all that they would like to do they said they do not like extubating at night & that it will be done first thing in the morning. As much as I hate this, I do realize it is necessary. At least he gets lots of good rest before his big day! Just praying for a smooth extubation tomorrow!! :)

JOIN OUR TEAM TODAY "MIRACLE RYKER & EASTON"

Please sign up today and join our team "Miracle Ryker & Easton" Ride the Brain Wave 5K, July 28th. You can register online at the following website https://events.regtix.com/childrenandtheearth.htm. 

Praying for a calm uneventful day....

Update -

Ryker is out of his heart "flutter" They had to shock him with the defibrillator paddles only one time to get him out of it, Thank you God!! I pray that we NEVER EVER have to go through that again!!! He is fully sedated now & they just did a thorough echo of his heart. We spoke with Dr. Marx & he said Ryker's heart looks extraordinary! :) :) This is such great news to hear especially after having ...the day we have had. He also said that his AV valve has little to no leak & his PA band is right at the correct tightness. :) Good job Dr. DelNido! So as far as Ryker's heart is concerned everything is as perfect as it can be right now! I cannot even tell you how wonderful this is to hear! Now we just have to find out what is causing his pain & now the heart flutter! Thank you for all your many prayers! Please keep them coming!!! :)

UPDATE PLEASE PRAY for Ryker..... Rachel just a text that as soon as she did the post saying Ryker is doing good things happened. The pacemaker team was just there adjusting his pacemaker and it sent his heart into something called "flutter" which is like an extreme SVT of the heart atria. The only way to pull him out of it is to sedate him, intubate him and do defibrillator paddles (the electric pulse paddles) on him :( PLEASE PLEASE PLEASE PRAY FOR RYKER
Ryker had a pretty crazy day yesterday filled with a few "code red" episoids where he completely stopped breathing. Today he seems to be doing better. Rachel posted the following update on Facebook this morning.....Ryker had a much better night last night. No more "code red" spells (praying it stays that way!!) As long as he gets consoled instantly when he is upset he doesn't get into those not breathing spells. He still seems to be pretty uneasy & uncomfortable at times so I am trying my hardest to get them to allow him to eat today in hopes that hunger pains is part of the reason why he gets so sad at times :( He is also still on High Flow to help him breath, but this forces a lot of air down into his belly that we think is causing extreme gas....So between the no food & lots of gas he gets really upset where he cries so hard he forgets to breath. (because he is still getting used to the breathing on his own part) Please pray that he will have a better day today & that he will be able to get more comfortable so he can get some rest!

She also posted the photo below saying this is Ryker's current favorite place to be and helps him stay calm.

Thank you for all the love, prayers and support. We cannot wait for Ryker & his family to have many calm days in a row. :) 

Whirlwind

It has been a whirlwind of a day in the world of Ryker.

Here is the first post and photo of the day regarding Ryker from Rachel:
After a long night of Ryker getting EXTREMELY mad, breath holding & making all the nurses come running, they finally agreed with me that it may be the ventilator tube in his nose that was making him so upset....So as of 6am my tough baby boy is EXTUBATED, breathing all on his own & sleeping comfortably!!! YAY RYKER!!!!! :) :) :)

Later in the afternoon when Ryker was with his Dad he stopped breathing all together and they had to perform chest compressions to get him back. In Jason's own words "it scared him to death". Ryker has been doing better but is still destatting and they are unsure why. Jason posted the following photo after Ryker crashed with the following caption, "I don't know how to explain 1 minute he looks like this and earlier I was scared to death when he totally stopped breathing on us I can't believe how good he looks". 

Please keep Ryker, his doctors, nurses and parents in your prayers. Thank you so much!

Update

Update tonight from Rachel......... 


Ryker's surgery went really good! Even Dr. DelNido that doesn't use the word "good" (he usually says "it went okay") said it went Good! :) He said Ryker handled the surgery better this time than he did with any of his prior surgeries. They did end up needing to repair the AV Valve during the surgery, which meant that he had to go onto bypass so that made the waiting period for Jason & I 100 times more stressful, but our tough little baby boy made it through it all once again with flying colors, thanks to everyone's prayers & positive thoughts! So thank you all so much & Thank you God!! Dr. DelNido said the left pulmonary veins look good, he cleaned them out really good & didn't seem too concerned about them, so we are PRAYING that they stay that way!! He tightened up the PA band good & now we are just crossing our fingers as they start 2ml of pedialyte per hour in his feeding tube. As of yesterday Dr. DelNido said he wouldn't want him extubated unless he was at least -100 on his fluid balance & tonight he is at -200!!! :) GOOD JOB RYKER!! So they are saying extubation tomorrow, but I will say Monday just because I know my sweet baby & he doesn't like to be rushed! :) So please pray for a smooth extubation process & that Ryker's recovery will continue to go great! 


Here is a photo of our sweet little baby Ryker before he went into surgery. 

Surgery update

Jason just send this text " He is done Dr. del Nido said he tolerated surgery very well and it all went good. He tightened the PA band a lot and worked on valve. Said all in all it went really good." Thank you for your prayers and please keep them up for a fast and smooth recovery. :)

Surgery to tighten PA band

Dr. Pedro del Nido decided that he will be performing surgery on Ryker Thursday at 7:30am. He will tighten his PA band and he may need to fix his valve. Tightening the band will cause less pulmonary blood flow and more blood flow to the body. He will not know for sure whether the valve has gotten worse until he is in there. The valve has always leaked it was just considered mild-moderate before and he is afraid it has gone up to high-moderate. If it has increased he will fix it. Fixing this leak would mean that Ryker will have to go onto the heart and lunch machine again. Going on the heart and lung machine would make surgery more of a major surgery than a minor surgery if he just tightens the band. The outcome desired from surgery is that Ryker will be able to eat comfortably, gain weight and continue to grow before his next heart surgery.   
Rachel's facebook status tonight......Just talked to Dr. DelNido & He told me that he has Ryker on his O.R schedule for this Thursday at 7:30am......:( I am overwhelmed with anxiety right now & my stomach is in knots!! Just when he has gotten back to himself & smiles again....My sweet baby has been through way too much! I just have to keep reminding myself that sometimes we have to take 10 steps back to begin going forward again. Please keep my baby in your thoughts & prayers! — with Jason Warner.

Please keep Ryker, his parents, siblings, doctors and nurses in your prayers. Ryker is truly an inspiration and we hope and pray easier and better days are ahead for him and his family.

Update - Brainwave

Recap of last week (Summary from Rachel's blog) 

Last week they did a sedated echo along with many other tests & adjusted Ryker's pacemaker. Rachel spoke with Dr. Marx again and he apoligized for making them feel hopeless last week regarding the PVS. He said he just did not in anyway want to get their hopes up. He told Rachel that two of his own patients had PVS very similar to Ryker's and that they are no 2 & 3 years old and their PVS has not returned. Ryker has defined the odds over and over again thus far so we know he can fit into the 5-10% of babies that PVS does not come back. Please pray that Ryker is going to be in that small percentile and his PVS does not come back. 

As of now (Monday May 14th) they have not decided weather or not they are going to operate. Rachel spoke with Ryker's cardiology team this morning & discussed a few things along with the feeding issue (they have not fed him since last Thursday because it was continuing to cause him so much pain to do so) They have just had him on IV nutrition for 5 days now & he is gaining about 12 grams a day on that so they are going to up it in hopes that he will gain between 20-25 grams per day. Right now Ryker weighs 7lbs 2oz at 2 months old. He needs some meat on his skinny bones! But they are not planning on starting his feeds again until they know weather or not they will operate this week. Their plan is to discuss Ryker at the Cardiology Conference tomorrow morning, which is the entire board of Cardiologists, so that Ryker has as many brains on his situation as possible to make sure that the perfect decision is made just for him. Rachel says, "I am so grateful that we are in a hospital that they will make sure that every single base is covered to make sure my baby boy gets the absolute best care possible! Thank you God for leading us here!!!"

Please continue sending your love and support to Ryker, Jason, Rachel, Trett, Jadd, Braylee & Addi. They all still need to feel the "love" very much so. "No one ever said it was going to be easy, they just promised it would be worth it" comes to mind very often lately. 

Thank you so much for all your love support and prayers. If you have not yet please put July 28th on your calendars to come walk/run with us in the Brainwave event. Flier below. 

Update

Today Jason sent me a text saying "Ryker's numbers are awesome today and he looks so good. We had a nice long talk about doing good today last night. His blood flow to lower body has been perfect all day. He is seriously doing the best so far. It is so good to see and he is even asleep today."

Yay go Ryker and keep listening to the pep talks. What a lucky baby boy to have such amazing parents and siblings willing to do anything for him.

Thank you for the thoughts and prayers please keep them coming. :)

Update from Rachel

Update from Rachel......
For the last 24 hours they have had a rSO2 Index monitor on both Ryker's head & belly to measure the amount of blood flow going to both areas. The entire time they have been on him the one on his head has been around 55-60 & the one on his belly has been around 15-18 Proving FINALLY that he is not getting amount of blood flow to his tummy that he needs. Now after the EP Team (pacemaker specialists) have been here & changed the way his heart is pacing (once again) that number on his belly has gone up to 30-42!!! I really hope this is the help he needs so he can eat again soon!!

After cathetertization

I am going to try and recap what Rachel explained to me on the phone as best as I can. :) After the catheterization Ryker did not look well. He looked very dehydrated, his eyes were sunk in and his soft spot was sunk it. His soft spot was so sunk in that they did an ultra sound to make sure everything looked okay and it did. Finding the PVS (pulmonary vein stenosis) shocked everyone like Rachel said including the doctors. The cardiologist explained that the PVS is in the left pulmonary veins, the upper vein was considered moderate and the lower vein was considered mild. He explained that in the middle of  the moderate vein it was like a napkin ring was wrapped tight around the vein. They ballooned both veins and they both opened up perfectly. 90% of the time the PVS comes back. Dr. Marx said he has two patients right now one that is 3 and the other that is 2 that both had PVS when they were a few months old. After they had their veins ballooned once it has not been a problem since. We are very hopeful and know with your prayers this can be the case for Ryker. Ryker is extubated and we are very thankful that went well.

Dr. Pedro del Nido says that he is not going to worry about the PVS unless it presents itself again. Right now he is worried about the pain Ryker is experiencing in his lower body (not caused by PVS). The pacemaker team adjusted the pacemaker tuesday to see if that makes a difference for Ryker. The next option is for Ryker to have surgery again and have his PA band tightened. Dr. Del Nido feels that tightening the PA band will force more blood flow down the ventricle that gives blood flow to the lower body. Right now with the PA band being loose for Ryker's skinny body he is getting a lot of blood flow into the ventricle that goes to the lungs (the blood flow goes through the path of least resistance).  He suggests giving Ryker 1-2 weeks to eat and grow into the PA band, if he does not see Ryker eating well or putting on weight he is going to go in as soon as he feels best and adjust the band.

The plan is to pray that the PVS does not present itself again, help Ryker stay comfortable and perform the Glenn when Ryker is around 4 months. Dr. Marx told Rachel that more than likely Ryker will not be leaving the hospital until after he recovers from the Glenn. 

Please pray for Ryker that his PVS does not present itself again, that Ryker can grow into his the PA band and stay comfortable until he is ready for the Glenn. Please send as much positive support and encouragement as you can to Jason, Rachel and their kids. We appreciate and thank each and every one of you for your support.

Ryker Update

Update from Rachel.....Yesterdays cath wasn't exactly how we had hoped it to be. As always it was so hard waiting for answers that we weren't quite sure if we would want them or not. After 5 long hours, I was pulled aside by both the attending Dr & the Dr that did Ryker's cath. Turns out Ryker has something called Pulmonary Vein Stinosis :( For any of you who know what this is, you know this diagnosis is not good! Jason & I are devastated & praying our hardest for the best! Both Dr. Marx & Dr. Del Nido say that the ballooning of the veins (that they did during the cath) may or may not fix it....so all we can do is pray! This has shocked not just Dr. Marx & Ryker's entire Cardiologist team, but it has absolutely shocked Dr. Del Nido. This is not at all what they had anticipated to find during the cath. The other problem is that this has nothing to do with the problems that he has been having. So today they are currently doing a thorough sedated 3D Echo to get a closer look at a few things, then from there they will decide whether or not they will need to operate on Ryker's tiny little heart again this week... :(  Please pray for my sweet boy!!!

As you can imagine we were all (including you reading this) hoping for a big break yesterday for Ryker and his family. The news they received yesterday was definitely not what we anticipated but we know that no matter what happens or what diagnosis Ryker gets he is a fighter and will overcome all obstacles that are set against him. He is the strongest and sweetest little boy and he is here for a reason. The stars have aligned for him to still be with us today, be in Boston and get the help he needs, right now the stars are scattered and with the doctors help, his parents support & love, your support and prayers and most importantly GOD's help the stars will slowly but surely re align. :) 

Please send as much positive energy and support as you can to Ryker, Jason, Rachel, Trett, Jadd, Braylee & Addisyn because they really need it. 

Boston Red Sox Rock! Thank you John and Linda Henry

Trett, Jadd, Braylee and Addi had been separated from their family ever since Ryker was flown via air ambulance from Salt Lake City to Boston which was almost two months ago. The girls went to Montana and the boys stayed in Utah. Jason and Rachel were waiting to bring the kids to Boston until Ryker was moved out of CICU and onto the recovery floor. That way they could spend time all together with Ryker.

When Ryker is in CICU only two people are allowed at one time. When he is on the recovery floor the family can all be together in the room with him. Ryker was doing great so he was moved to the recovery floor, we got the ball rolling and got his brothers and sisters out to Boston. They arrived in Boston Thursday night and planned to be going to see Ryker the next morning (Friday). Early Friday morning Ryker was moved back to CICU because he had been (and still is) in a lot of pain and they (CHB) cannot figure out what is causing it. Needless to say Ryker being moved back to CICU has been a set back for him and has again caused his family much concern.

Thursday, the day Ryker was moved back to CICU Terry (a new friend following Ryker's story) contacted the Boston Red Sox Foundation and asked them if there was anything they could do to help this family. Ashley and Meg (possibly others we do not know about) from the Boston Red Sox Foundation went to work for Ryker's family and contacted John Henry's (the owner of the Red Sox) wife Linda Henry. Linda then so graciously donated her and her husband's personal seats for Trett, Jadd and Jason to use at the Boston Red Sox game. Trett, Jadd and Jason are all HUGE sports fans. Having the anticipation of going to a Boston Red Sox game and sitting in seats that were donated by the owner and his wife was a priceless gift that gave them something very uplifting to think about and look forward to.

Game day, Jason and the boys were escorted by security to their seats. FRONT ROW seats! Jason said that security asked them 3 times to see their tickets because they just could not believe it. There are not many words to describe how excited and thankful we are for this once in a life time experience. The pictures say it all. Thank you John and Linda Henry and the Boston Red Sox Foundation. You truly gave this family a priceless gift to remember for the rest of their lives.

As Trett put it none of this would have been possible without Ryker. We cannot wait until Ryker gets to go to a Boston Red Sox game with his brothers and we can share those photos with you.

Is this for real?

Loving life

Not a worry in the world for 17 innings

Our awesome friend Chris

View from seats

Sweet little Ryker

Sweet little Ryker is heading back in for a catheterization tomorrow morning sometime between 8-12. A catheterization is done by inserting a catheter into a chamber or vessel of his heart. The doctors say the catheterization is a must because they cannot get the pressure numbers going through his heart on an echo so a cath is the only way. Ryker now has an IV in his head & cannot move more than a foot from his bed because of all the medications and wires he is once again attached to. Please keep Ryker and his doctors and nurses in your thoughts and prayers tomorrow. It is important that the doctors find out why Ryker is having the pain and complications he is currently experiencing so they can help him get going up hill again. :) Thank you for all the love and support. You all make this journey possible to get through. 


***I am working on the Red Sox game post and will share it tomorrow. 

Update

Ryker is back in CICU. They are trying to figure out why he is in so much pain. They have run numerous tests through his digestive system to see if it has anything to do with that, but they are still unsure. If they don't figure it out by Monday he will go to the cath lab. :( Ryker has been in extreme pain and it has been very hard on him. This set back has also been very hard on his family to see Ryker in so much pain and to have the kids near but not be able to all be together with Ryker (only two people at a time in CICU). It seems like on the weekends not much progress is made which is frustrating and we are hoping that Monday brings better news and sheds more light on what is causing sweet little Ryker pain. Please pray for Ryker, his family and that the doctors and nurses can get him comfortable and moving forward once again.

Kids arrive :) and CICU for Ryker :(

The kids have arrived in Boston and we are all so very very very happy for them all.

Ryker had a rough night,Grandma stayed with him, while Mom got some much needed time with her girls, who just arrived from Utah. He has been taken back to the CICU, so they can keep closer tabs on him,and run more tests. It is very concerning that they have not figured out what is causing Ryker so much pain.

Please pray for them to figure out what is going on with sweet little Ryker.

Update

Ryker has been doing better the last 24 hours. He is still uncomfortable but doing much better. Rachel said they think that the combination of the heavy antibiotics and his reflux was causing him to have the extreme stomach pain.  He is now on continuous feeds of the formula called Elecare

Ryker's brother's, sister's and grandma are on their way to see Ryker, Jason & Rachel RIGHT NOW!!!!! Below is a photo of them getting ready to fly out of Salt Lake City. It has been almost two months since this family has been together and we could not be any happier and more excited to have them back together.