Our Miracle - Ryker's Journey with Heterotaxy

Our Miracle - Ryker's Journey with Heterotaxy

Sunday, October 28, 2012


From Rachel posted 10/28/12 -
When Ryker woke up yesterday with the ventilator tube in his nose he was pretty upset & trying to pull it out (understandably so! I would be too) But really considering it all he has been tolerating it pretty well. Then this morning we just got some sad news....We found out that his peripheral culture (a blood culture that comes directly from his vein, not through any line) came back positive for 
infection...:( I am devastated!!! When his WBC & CRP jumped the way they did the other day I was so scared that it was in his blood stream, but I prayed so hard that I was wrong! My poor sweet boy! No wonder why he has been having such a hard time :( Luckily he is intubated so that he can hopefully get some good rest & be able to really recover from this horrible infection! Please pray so hard that the many antibiotics that Ryker is on will fight this infection quickly, so he can soon be back to his sweet smiley self & feeling better!

Saturday, October 27, 2012


Update #2 Considering how busy today has been for Ryker, he has handled it all SO well! They got a new line in him so that they were able to pull the old broviac & the entire process even with going to the Cath Lab, his numbers didn't budge, he stayed perfectly stable through all of it!! He is such a tough baby boy!! Now the plan is to let him rest & recover so he can get rid of this horrible infection! Thank you all for your continued prayers!

Update #1 Ryker's intubation was successful, he did such a good job! The problem we have been dealing now is trying to get new IV access. They tried bedside in the CICU for a while, when they decided that the safest route for Ryker was to take him to the Cath Lab to get access. So he is currently in the Cath Lab & so far doing well & is stable. Please pray that he stays this way & they are able to get a good IV line on him so they can pull the infected one.

Friday, October 26, 2012

Please pray for our little buddy and his family - Infection

Post from Rachel 10/26/12
Over the last 24 hours Ryker's infection has suddenly gone from stable & almost gone to severe! His white blood cell count & CRP have shot up higher than they ever have....I am so scared! I just talked to the Attending for a while & he said our only choice right now is to intubate Ryker so he can have the support he needs to get through this infection. Once he is intubated they will pull his Broviac line that is infected & put in a temporary neck line until they are able to get more access. Please-Please pray SO HARD for my sweet baby to get through this & to be able to fight of this horrible infection!!

Tuesday, October 23, 2012

Ryker Updates

Update from Rachel 10/23/12
My Beautiful Baby boy sleeping peacefully for the first time in over 24 hours!!! It's amazing what an Awesome nurse that knows him very well can do!! Thank you Sonya!!! Both Ryker & I are always so grateful for you!! :)

Update from Rachel 10/22/12
Ryker had a good night! He hasn't spiked another fever in over 12 hrs :) & all his numbers have improved quite a bit! His blood cultures from his peripheral stick have not grown anything back as of now (Thanks be to God!!) & they just send a whole new round of cultures to see where we stand as far as whether or not the broviac line will need to go. I am praying that we will be able to keep it beca...
use they have been unsuccessful in giving him a PICC line numerous times now & so Dr. DelNido had to surgically place this line in order for him to have any line at all....So needless to say he desperately needs it, however I don't want to compromise him at all by keeping it either! As of now everything has kinda been put on a halt just waiting to see what he does in the next 24 hours & they are monitoring him very closely!! Regardless of all this that is going on he has continued to be so incredibly sweet & still smiles at me & his nurses so much! I cannot get over how unbelievable my sweet baby boy is! He is my little hero!!! :)

Update from Rachel 10/21/12
I don't really know where to start...I am exhausted & so emotional, so I hope I get it all. So much has happened in the last few days...
A few days ago Ryker stopped peeing again, my automatic instinct was being absolutely terrified because not peeing is a sign of heart failure, but Thank you God he is producing urine (showing that his cardiac output is fine) but for whatever reason he just isn't...
letting it out on his own, so for now he has a urine catheter to assist him in that department until we figure out why that is happening. I have gotten the urology department involved as well, but any input on this would be muchly appreciated, because nobody seems to really know for sure.
Then as I have been so worried about that, I was smacked in the face with the fact that the peeing problem really wasn't that big of a deal when he suddenly spiked a fever of 39.3!! From there we ran cultures, dosed him up on Tylenol, & ice-packed him to keep him cool & thank goodness- put him straight onto heavy duty antibiotics just to be safe, because within only about 6hrs 3 of his cultures came back positive.....(just to give you all a little back round, throughout our whole 7 months of being here he has spiked MANY fevers & not one of his cultures has ever come back positive, so this has been a total shock for us) Two of the positive culture were from his bran new broviac line (both ports) This is Terrifying!!! & I have been trying my hardest not to get too emotional over it. We don't know yet whether or not the infection has gotten into his blood stream or if it is just in his broviac line, but either way his bran new broviac line will more than likely have to be pulled & somehow we will have to find new access (which is extremely hard for Ryker) So PLEASE, Please, please pray that his blood culture will come back negative so that he doesn't have to be put through SO MUCH more with having a horrible blood infection on top of all else & that he will either be able to keep his broviac (without any added risks for him) or that they will be able to find new (easy) access for my sweet boy!!
So for the last about 24 hours Ryker has been pretty uncomfortable...:( But thank goodness he & I have been able to snuggle lots! Which considering my emotional state right now, dealing with all of this on top of having my whole Family 2,000 miles away from me right now...snuggling is all BOTH Ryker & I need right now, along with maybe a little sleep! :)

Thank you for all your prayers!

10/19/12 Sweet little Ryker got a hair cut.

Thursday, October 11, 2012

Thank you MONTANA!!!

Ryker and his family have received so much love and support from all over the world throughout their journey. They received a lot of love and support last month from Montana. Two events were put on in the Bitterroot Valley to raise money, awareness and support for Ryker and his family. The first event took place at Super 1 in Stevensville and the second was a benefit dinner in Hamilton, MT. The goal for the two event was to raise $10,000 and I am happy to report we met that goal!!!!!!!

The first event (courtesy of Chanel Lykins, Super 1 Foods - Stevensville and their various vendors) was a raffle, hot dog and ice cream sale. Chanel and Super 1 (managers Rich and Berry) worked so hard to make this event such a success and a success it was. Photos below are from the event at Super1.

The second event was a spaghetti dinner in Hamilton, MT. We continued the raffle from the event at Super 1 and added many more amazing items to the raffle and live auction. All items were donated to benefit Ryker and his family from various individuals and businesses from Missoula to Hamilton (listed below). Also thanks to these individuatls and businesses from Missoula to Hamilton we were able to serve a delicious meal with about 90% of the food & serving wear being donated. We had approximately 150 in attendance at the benefit dinner.

There was a keepsake table set up so those who wanted could draw photos, write notes, write letter and add them to the keepsake box that was to be mailed to Ryker's family. I am happy to report that the boys received their box last week and it made their day. The girl’s received their box Wednesday the 3rd and Rachel said it brightened their day so much. Rachel said it is unbelievable how much of a positive difference receiving letters, photos, gifts etc. in the mail makes for the kids – it always brightens their day.

A huge thank you to all those who participated in some way towards the events here in the Bitterroot Valley. We are blessed and thankful to be surrounded by such amazing and caring people. It is because of people like you that Ryker is able to have someone that loves him so much by his side every day. It is also because of you that all of his parents, siblings, grandparents, aunts, uncles, cousins, friends, supporters, followers etc can sleep better at night knowing how much good there really is in the world. God is good and continues to bless Ryker and his family.

Thank you to all the businesses and the individuals below for your donations that made this event possible:

Moose Creek, Papa Murphy’s, Fiesta En Jalisco, Bitterroot River Inn, Victor Steakhouse, Flower Happy, Beaver Tail Stitchery, Ten Spoon Winery, Fusion Effects , Fords, Sapphire Moon, Kingdom Kids, Elle Jae Photography, Heather Thomas, Crystal Mousley and Connie Jessop- Bitterroot Bellagio, Udderly Fresh, Bella Boutique, Ezette Zikan, Debbie Babcock, Happy Trails, Wall Graffiti Vinyl Lettering, Linda Olbert , Bitterroot Bit & Spur, Murdochs, Mom and Me, Images by Stephen, Big Sky Toy Room, Chapter One Book Store, Cliff’s Coral, Annette Edwards, Robins Hallmark, Subway, Al’s Cycle, Bitterroot Brewery, Jerry Wessels Les Schwab, Lube Quick, Splash Car Wash, Valley Drug, Fireside Pizza, Bitterroot Drug, Writing with Light Photography, Bitterroot Aquatic Center, Anna & Tom Miller, Shulunds, Amerisource Bergen, Sandy Hanson -The Total Look, Cindy Stewart, Gerri Coon, Buffalo Hat Gallery, Cynthia Bauldauf, Pepsi, Coca-cola, Hamilton Pack, Johnny Carinos, Famous Daves, Buffalo Wild Wings, Perkins, River Rising, Ridgeway Pharmacy – Stevensville, Coffee Cup, Ten Spoon Winery, Hidden Legend Winery, Worden's Market, Party America, Chavez Family (In Memory of Jayden Chavez) Super 1 Foods Stevensville & Hamilton, Health Care Providers, Pasta Montana, Thingz in Balloonz, Safeway, Bitterroot Valley Ice, Terry & Autumn Evanoff, Margie Mason, Hamilton City Hall, Chanel & Matt Lykins, Albertsons, Proctor & Gamble, Twisted Tea, Summit Beverage, Anhauser-Busch, and Red Rooster.

Wednesday, October 10, 2012

Bray & Addi get to visit Ryker :)

While Ryker was on ECMO, his sisters Braylee & Addisyn were able to go to the hospital & see him considering the fact that at that time we did not know how everything would turn out, needless to say that was a VERY emotional & hard day having the girls see him the way they did. Braylee being the almost 6 going on 13 girl she is, she knows & understands way more than I think we give her credit for & she had a very hard week that week! But thankfully last Saturday they got to see him again for the very first time since that hard day....only this time he was wide awake & extubated!! He was a little out of it because of just getting his regular sedatives, but other than that he just loved to see his sisters & hear their voices again after so long! 

Here are some pics :)

Braylee LOVES her Ryker!!

Addi always just wants to squeeze Ryker to pieces! She loves her baby!

Picture Bray took of Ryker sitting up staring at Mommy :)

Sound asleep after play time with sisters is over :) SWEET BABY BOY!!

Sunday, October 7, 2012


Ryker has has a really good week. Got extubated last Wednesday!!! He struggled for a bit after extubation with his respiratory rate, so they did an echo, echo came back normal & since then his respiratory rate has been slowly getting better & better!! He is holding his own so well & has been smiling the entire time! You would NEVER guess that only a month ago this beautiful baby boy was on ECMO. I couldn't be more proud of my tough & absolutely amazing baby boy!!!

Oh & plus- Ryker is 7 months old today!!! Happy 7 month beautiful boy! :)

The night before extubation

Ryker wearing his cool new Patriots Hat!! :)
1st pic after extubation
1st time holding my beautiful boy in almost 5 weeks....Such a great feeling!

Handsome boy doing his thinking pose :)

Loves to hold Mommy's finger when he falls asleep :)