Our Miracle - Ryker's Journey with Heterotaxy

Our Miracle - Ryker's Journey with Heterotaxy

Friday, August 31, 2012

Miracle Ryker events in the Bitterroot Valley!!!

Super 1 Foods  -Stevensville, MT
Miracle Ryker Benefit!
Thursday, September 6th, 2012 from 9am to 5pm

Ice cream, Hot dogs, Pop!
Raffle Tickets $1.00

Enter to win a mountain bike, kids 4-wheeler ($500 value), tabletop propane camp stove, stand up Coleman camp stove, float tube and more! (Some items need to be 21 to enter !)

Also join us for the Miracle Ryker Benefit Dinner. We have some great raffle items you do not want to miss out on. Please pre-purchase your tickets.
As you may know if you follow Ryker on facebook his parents (Jason & Rachel) take turns spending days at a time with Ryker at the hospital and their other kids at their apartment about a hour and a half away. Because their kids need them both at this time it is impossible for Jason or Rachel to currently hold a job and it will continue to be that way until after Ryker is recovered from his next surgery, stable and at home. It is because of all the amazing people following Ryker's story that we have been able to reach our first goal of paying off the jet loan. Our current goal is to raise enouch money to sustain their living expenses for as long as Ryker needs our help. 
  Sweet Ryker sitting up today!

Tuesday, August 28, 2012

Update 08/26/12

Ryker has had an incredible couple weeks!!!

On Friday August 17th Ryker got extubated & he did amazing!!! Best he has ever done with extubation (he is becoming a Pro!) Right before extubation they did a echo (they have been doing them weekly since his last cath) & everything looked the same if not "a hair better" than the last echo. So that was great news! After extubation they put him onto something called "Bubbly CPAP" to aid in his breathing, he was on that until the following Tuesday when they moved him to a regular nasal cannula on 2 liters of oxygen, where he still remains right now & is doing great & satting in the high 70's to low 80's (right where they want him pre-glenn)

I have (& everyone else in the hospital that knows him well) been SO happy with how well Ryker is doing since extubation! His color looks great (nice & pink), his numbers all look perfect & his eyes are just glowing! His favorite Nurses & Doctors are continually stopping by just to see him because they have heard from others how well he looks:) I feel like I have my sweet happy Ryker back FINALLY!!! Except that he is a lot bigger!!! :)

Today Ryker weighed in at a whopping 5.088KG which is 11 lbs. 2oz  I am SO excited about this!!! Dr. DelNido would like Ryker to be at least 6KG for his bidirectional glenn procedure so this is just one step closer to that! I am so so proud of him! They also started his feeds back up again through his cool new G-Tube :) I love this new thing (although it is a new incision sight & foreign object in his body) it is so much better for him so he doesn't have to have 4 tubes down his nose all at once & try to breathe all at the same time. They are taking his feeds extremely slow so he is only on 6ml per hour of continuous breast milk & he is doing great with it!

The only concern I have at all is- Because Ryker was intubated orally the last two times he has no interest whatsoever for his binky or bottle :( The two things that used to be his absolute best friends! I cannot say that I blame him, if I had something shoved down my throat for almost a month that I continually gagged on, I too would not want anything in my mouth either!! But needless to say this breaks my heart & worries me at the same time. They at first were saying that he has something called "oral inversion" which basically means that he wants nothing to do with anything going into his mouth & gets extremely upset if you try, but after the feeding team came yesterday they said he doesn't have a full blown oral inversion because he doesn't get mad about things going in like some kids, but he doesn't love it like he used to, so it will just take a lot of time & patience to slowly get him back to bottle feeding again. So he will be back at it soon! :)

Here are a few pics of the last few weeks-
 The night before Ryker got extubated. He was a little warm so they were cooling him off.
Right after extubation.
 Braylee filled out Ryker's "about me" form.
  Addi piled Ryker up with his animals.
 Addi watching a movie with Ryker.
 Addi is such a good big sister.
 Smiley boy having "guy time" with Daddy.
 Ryker loves his Braylee!
 Braylee making funny faces at Ryker.
 My beautiful boy!!
 So happy!
 Grandma Caron came to visit :)
 Sweet sleeping baby :)

Monday, August 27, 2012

Thank you for your support!

Thank you to you (all of Ryker's supporters) for making it possible for him and his family to be in Boston where he is getting the medical care he needs to survive and one day thrive.  Because you share/shared Ryker's story, donate/donated, pray/prayed and support/supported their family in one or multiple ways they are able to survive. Today they are also very thankful to you for the fact that they are able to make the final jet payment to pay off the $28,000 it cost to get Ryker to Boston.  This is a huge relief for them and would not have been possible without all of you. 

The first photo below is when they were departing Salt Lake City and the second is when they arrived safe and sound in Boston back in March. 

Sunday, August 26, 2012

Six Flags New England

Throughout Ryker's journey we have learned many things but one of the things that continues to amaze us all is how generous and amazing many people are. Terry, one of Ryker's awesome supporters was able to get ahold of Stephanie from Six Flags New England. Stephanie was able to get Six Flags to generously donate tickets for Jason and Rachel's family to visit the amusement park.
The boys and Jason went to the park in July and had a blast all day. Jason posted the photo of them below playing basketball with the caption "They both won basketballs took me back to my younger days" and "having a blast with the boys". The three of them were able to forget about their stress and worries for part of a day.

 Jadd hanging out with the Magician

Trett & Jadd on the roller coaster. :) 

The girls, Jason and Rachel were all able to attend the park together a little over a week ago. Rachel posted the following caption "Just got home from Six Flags with my Beautiful girls & Amazing Husband. Such a fun day & really good way to get all our minds off things for a bit! Grandma & nurse say little Ryker has had a good day too! :)" 
Jason posted "My daughter looks at us tonight and says this is the best day ever."
Thank you Terry, Stephanie and Six Flags for helping the Warner's have their mind's on FUN for hours:)

Monday, August 20, 2012


8/17/12 Guess who just weighed in at 4.76 KG.....My Absolutely Amazing baby boy! Can I just tell you all how happy this makes us!?!? This means he is 10lbs 4oz! YAY!! HaPpY DaNcE~HaPpY DaNcE!!! ~ Rachel

8/20/12 I have been at the hospital with ryker and have to give the update the last 3 nights I have been blown away by ryker he has not cried once all day or night out of pain and has been the most happy and comfortable I have ever seen him period his eyes are telling me a completely different story hard to explain but I can see so much through them all drs and nurses that come to see him have all told me the same thing for 2 days straight I am almost in shock and loss for words but keep going ryker ~ Jason

Monday, August 13, 2012

Ryker's journey video

Here is a video all about Ryker's story up to the day we did our Family pictures on July 11th. I have been working this video for over a month now & I am SO excited to finally get to share it with everyone!

EnJoY! :) 


Sunday, August 12, 2012

Busy week for Ryker

The last week has been an extremely eventful & sad week for my sweet little Ryker! He has been through so much!

Starting Monday we found out that he had been in & out of flutter for days, which causes him a lot of pain & stress, along with hypo-tension & low O2 saturations. So needless to say this took a tole on my sweet baby's body.

Then Tuesday while doing a sedated echo they found that he had an efusion (a pocket of fluid) under his left lung, so from there they had to heavily sedate, paralyze & intubate him to be able to insert a cest tube to drain the fluid, this procedure went very well & has drained quite a bit of fluid. They have tested the fluid & still have no reason as to why the fluid was there, thank goodness it is not cylis (fatty fluid caused by the body rejecting the intake of fats in the digestion) they think it may have something to do with him being in flutter so much over the last few days.

So, from there while he was already intubated the Doctors decided to do a CT Scan on his abdomen to get a closer look at his intestines one last time to be absolutely sure that he didn't have any problems that needed fixing before they really tried feeding him again. They found what they felt was something called "Intermitten Volvulous" of the GI Tract, which basically means that his intestines will randomly without any warning turn on themselves & cause him extreme pain. So needless to say we met with Dr. Smithers (The General Surgeon that has followed Ryker for awhile) once again about possibly doing a procedure on his tummy.

On Wednesday- Dr. Smither's decided he needed another "Upper GI" test done done to help him to make a final decision on what Ryker needs. Then with the help of Dr. DelNido, Dr. Marx, Dr. Keir (One of Ryker's ICU Attendings), General Surgery, Jason & I we came to a decision of it being best to put Ryker back into the Operating Room to make sure any belly problems he was having are taken care of.

Thursday at noon they came & took Ryker to go back to the Operating Room. I was sick...the anxiety & tears hit me so hard! Although I knew that intestinal surgery couldn't compare to any of the 4 other procedures he has already had done, I just hated the idea of him going back there AGAIN! Within an hour & a half the Liazon nurse (the nurse that is in charge of keeping the parents updated during surgery) called and asked that Jason & I hurry back to the hospital (We had just gone across the street to get some lunch) So we rushed back & for reasons that are still unknown Ryker was not staying stable in the O.R his O2 sats & blood pressure had been dropping & he spiked a fever. So needless to say they were unable to operate. At this time they kept him completely paralyzed so they were able to get an arterial line placed to hopefully better prepare him for surgery tomorrow.

On Friday morning Ryker was doing great, so they felt comfortable enough to take him back to the O.R When they came to get him I was greeted by an Anesthesiologist named Al, apparently he is one of the top Cardiac Anesthesiologist in the hospital & Dr. DelNido himself requested that not only Al be the one that takes Ryker down for his surgery, but that he stays with Ryker & monitors him for the entire operation. I love to hear how much Dr. DelNido cares about my baby boy!

The procedure only took a little over two hours, then we met with Dr. Smithers. He said that surprisingly enough Ryker's intestines were malrotated but the malrotation that Ryker has works for him & his body & needs no cutting or adjusting. He has no intermittent volvulous like they had thought & no risk of having it happen either. All Ryker's intestines are held up & supported by the correct muscles & he has no problem there. However they did do a biopsy of his colon to check for any motility issues he might be having, which we haven't heard back about yet. They removed Ryker's appendix & placed a G-Tube, but they couldn't place a regular G-Tube because they found that Ryker has an extremely small stomach (& I mean small!) They couldn't even put a small balloon on the inside to support the tube because they were worried if they did it would take up the majority of his stomach. So my thoughts are that his itty-bitty stomach could be the source for some of his pain & intolerance for feeds.

When we came back up to see him he looked great!! By far better than he has ever looked after any of his 5 surgeries, this operation obviously wasn't cardiac surgery like the others, but still a very serious operation! I am so proud of my tough baby boy!

8/8/2012- My beautiful boy sleeping peacefully before another big surgery day tomorrow....I sit here at almost 3am just watching him breathe & can't help but become overwhelmed with emotions over how unbelievably grateful I am for all I have!!
8/11/2012- My beautiful boy with no tubes or tape on his face!! :) This is very temporary, but I had to share because I love it so much! First time since he was only 2 weeks old that I get to see his whole face. They are just changing the tape for his ventilator tube before they wake him up from his paralytic. Beautiful boy!!!

Thursday, August 9, 2012


Update from Rachel....Only about an hour and a half after they took Ryker back Jason and I were called to hurry back to the hospital, for unknown reasons. Both his blood pressure and his 02 saturations began to drop and he began to fever. So right now they have brought Ryker back to the CICU where we are waiting for answers

Wednesday, August 8, 2012

Update...Surgery tomorrow

As you all know Ryker has had numerous problems with belly pain in the past. Every test they have ever given him on his GI tract has come back negative for any malrotation or blockages & so we have always felt so blessed to have our baby be one of the few Heterotaxy babies without malrotation. Ryker had a CT Scan of his belly last night. That CT Scan came back a little suspicious &
so they chose to take a closer look this morning. What we have found is that Ryker has something called Intermittent Volvulous of his GI Tract, meaning that his digestive tract will randomly, for no reason at all turn on itself causing a blockage & putting my sweet baby extreme tummy pain. So in other words he does in fact have Malrotation :( As hard as this is for us to swallow, it is good to finally have an answer to so many questions about his tummy pain that went unanswered from the past & it makes perfect sense as to why he can eat perfectly for weeks & then suddenly he is screaming in horrible pain. This is extremely hard for me to put this all into words...But Ryker is scheduled for a Ladds Procedure at noon tomorrow. This is a surgery on his GI Tract to hopefully correct this problem & place a G-Tube (a more permanent form of a feeding tube) so that Ryker can be back to eating again soon. So- Please, please pray for our beautiful boy as he goes back the Operating Room for the 5th time tomorrow

Tuesday, August 7, 2012

Sweet Ryker is having a rough time

Post from Rachel ~ Please pray for my sweet baby! He has had a really hard couple of days! We just found out he has been in & out of flutter for days now & now that they have pulled him out of flutter we are praying he won't go back into it. They are also doing an echo right now to check on his heart function & his PVS, then possibly following that with an abdomen CT scan.

Wednesday, August 1, 2012


Only a little over 2 weeks after our July 14th VERY SCARY night, Ryker is doing really good & impressing everyone with his strength!  After all he went through everyone here in the CICU wondered weather or not he would pull out of it & not only has he pulled out of it he has people regularly coming to his room just to get a look at how well he really is doing. He is astounding everyone! :) Our two absolute FAVORITE nurses Sonya & Kristen have decided to take month long vacations at the same time & wont be back till the beginning of September :( So we are going to make sure that Ryker still gets the best care possible during this hard month without them (happy for them, but sad for us) Can't wait for them both to be back!

He is still NPO (not eating) so he is only getting nutrition through his PICC line but they have upped it as much as they can with lipids (IV fats) & all so now they are calling it IV rocket fuel :) Ryker weighed in today at 4.08KG!!!!!! I can't even begin to tell you how happy this makes me! This means he is almost 9lbs!!! YAHOO BABY BOY!!! One more pound to go & he will be in the "safe zone" for the Glenn (his next surgery) Because his Glenn is now going to have added procedures (making it much more complicated) I'm sure they will still let him grow bigger than 10lbs if he is able, just to be as safe about his next surgery as possible. So they are planning on keeping him as comfortable & happy as they can so he can grow & burn as little calories as possible so we can get him fat! ;) They put his NJ tube (intestinal feeding tube) back in yesterday in hopes of starting feeds again soon, but that upset him so much (I can't say I blame him, I wouldn't want anyone putting stuff down my nose either!) that they are going to give him at least 24 hours to settle before trying to feed.

Dr. Marx did an echo last Thursday & said his heart function has improved some :) so the plan was to do an echo tomorrow (Wednesday) to check it out again, However- Ryker decided to throw a little curve ball on Sunday & he went into A-Flutter with his G'ma Watson here. That morning he was a little more fussy than normal & his work of breathing had gone up quite a bit so they were worried that his PVS might be causing more problems so they echoed him early to make sure everything was okay. (Me in a panic at home with my girls, getting ready to head back to the hospital feeling there was something wrong) So, they did a sedated echo & it came back that his PVS looked the same as it did after his cath (Thank you God!) & his heart function had improved some, BUT that he was in A-Flutter!! Thank goodness the EP Team (Electro Physiologists) were able to pace him out of it by changing some settings on his pacemaker. I can't even tell you grateful I was that he didn't have to have the defibrillator again! So, after all that craziness he had a really good day & night for Grandma. Watching the Olympics with her & all! Grandma Watson told me that it was the cutest thing watching him wave his arms & kick his legs while he was watching it :) & I have had numerous nurses that said it was so cute that they had to have others come into his room to see! So it was a great night with Grandma!

So from here they are planning on echoing him about once a week to keep close tabs on his heart & we are still just praying he has lots more uneventful days that have lots of happiness & comfort for my sweet boy so he can grow big & strong!! :)

Our first Family photo in over 4 months....Such a wonderful & emotional day!!

Love these eyes!

My sweet Braylee LOVES her brother!

Jadd & Dad with Ryker

Trett & Dad with Ryker

I LOVE seeing him sleeping comfortably!!!

Addi reading Ryker a story :)

Me holding my sweet baby boy after I thought I was going to lose him only a week earlier...such an emotional moment!!

Little Buddy watching TV with Daddy :)

Snuggled up in Mommy's arms...best place in the world (for me at least:)