Our Miracle - Ryker's Journey with Heterotaxy

Our Miracle - Ryker's Journey with Heterotaxy

Saturday, March 31, 2012

Our little fighter....

Ryker is having a good day today other than when he got his diaper changed which included a rectal temperature check. During this diaper change he was not breathing so great, therefore he had 6 + nurses surrounding him making sure he was ok and had to give him a little oxygen. Who can blame him right?

Other wise the nurses are very impressed with how he is holding up. Today he has been able to increase his breast milk intake from 2ML of to 9ML. He is off of his morphine drip and now on methadone every three hours. He also no longer has a catheter in.

Ryker is one tough little boy and is doing a great job. Jason, Rachel, Trett, Jadd, Braylee and Addi are all being very tough as well. Ryker is one lucky little brother to have such awesome brothers and sisters being so brave and fighting so hard for him as well.

Thank you all again for your support. We cannot say thank you enough. Rachel has a blog that she updates as often as she can. If you would like more detail information or her perspective head on over to www.jrwarner2.blogspot.com

Beause posts are always better with a photo and I believe pictures say a thousand words. To me this photo (taken prior to any heart surgery) is Rachel showing/telling Ryker she will do whatever it takes. Love it!

Friday, March 30, 2012

Little update....

Not a lot of new news today which is okay.

Ryker's Grandma Pam did post on facebook that he was grabbing her finger which is great news!

As you can imagine Jason and Rachel are having a hard time being away from their other kiddos so please keep the prayers going for them along with Ryker.

We cannot wait to hear how the Bunco Fundraiser turned out that Children and The Earth put on for Ryker and Chloe. I know it is going to be a great success! Jodi and Amber are amazing and doing great things.

Thursday, March 29, 2012

Heart Block

We need some special prayers for Ryker, he has " heart block ", the top of his heart is not communicating with the bottom of his heart, this usually happens within the first 7 days after surgery. If it doesn't happen by Monday, they will have to put in a pacemaker. He is breathing more on his own, so that is good.

They have started feeding him pedialyte today, and he seems to be tolerating it well, so he can start getting some breast milk tomorrow!

We are still looking for people who are willing to donate air miles or buddy passes. We are also in the process of looking for housing in the Boston area. If anyone has suggestions or recommendations please let us know.

Thank you for all your love, support and prayers.

Wednesday, March 28, 2012

Correction & Update

**** CORRECTION...Ryker was not extubated and they were not planning on extubating him yesterday. The Dr. only wanted him off of his paralytic and that process did not go smoothly yesterday. I misunderstood what was going on. Today they have taken him off his paralytic and he is doing good. It will still be awhile until he is extubated and breathing completely on his own.

Tuesday, March 27, 2012

EXTUBATION

Today the Dr. wanted to take Ryker off his paralytic and extubate him (remove tube from airway). The process of extubation is not fun at all for Ryker or his parents. In order to extubate they have to take Ryker off his paralytic and narcotics as much as possible. Once they extubate him and he is breathing on his own they can slowly give him more medicine to control his pain. The process did not go smoothly today and they were unable to extubate him.

Dr. Pedro del Nido was expecting to come in and see Ryker extubated this afternoon and was not pleased when he saw it was not completed. He gave the nurse some different recommendations and said he expected to see him extubated tomorrow. So please pray for Ryker, Jason and Rachel that the process goes smoothly tomorrow.

The GOOD NEWS is that they took out the chest tubes and the IV from his neck. Dr. Del Nido is very happy with his heart rate. He wanted to test it today so he turned down the pace maker and Ryker's heart did a better job at maintaining his heart rate than the pace maker. The Dr. said that was very good. Rachel said when the Dr. says things different than okay or fine it must be a VERY good thing :). His kidneys are still stressed and they are monitoring them.

We are currently in the process of working on getting the kids to Boston. If anyone has air miles they would like to donate please let me know.

Thank you so much for your support we are so grateful for all our family, friends and new friends. You have all made this possible and have all helped to save Ryker's life.

MIRACLE RYKER FACEBOOK PAGE

We have created a facebook Miracle Ryker page. This will make it easier for Jason & Rachel to post, add photos and videos. It is open to anyone so you can like it if you would like to. http://www.facebook.com/#!/MiracleRyker

Update on Ryker today is that he is still doing well with the transition of having his chest closed. We will post more frequent updates on the facebook page. Please keep the prayers coming.

You are all amazing and your support has really made a difference!

Monday, March 26, 2012

Ryker Update

Hello Everyone,

As I understand from others who have been through a similar experience we are going to be experiencing many ups and downs along Ryker's recovery. I hear to expect things to be going not so good one minute and then the next a miraculous recovery. It is understandable when you start to learn more about what the procedures entail and how hard this is on a body let alone a 2 week old baby.

An update for today is that they closed the chest incision. The surgical staff told Jason and Rachel that they did not think they would be able to close it today. They were told this before Dr. Pedro del Nido showed up. Once he showed up he said that they would get it closed very soon and it was closed up with in a few hours after that. I hear what Dr. Del Nido says is what goes :). What this means is that Ryker's incision is closed so his recovery can continue on but he is still laying there (unconscious as to what is going on around him) hooked up to all the not so beautiful looking but amazing life saving machines and tubes. Jason and Rachel will not be able to hold him for many days to come. Definitely something they are looking forward to but not pushing until he is ready.

Rachel says that he looks so much better and is starting to look so much more like her baby. They are telling her he is doing "okay" since they have closed him up. The nurses are very frank and are not sugar coating anything for Rachel or Jason. They are going to maintain all his meds without adding or taking away anything for at least the next 24 hours to make sure he says as stable as possible. The next 24 hours are most likely going to pretty rough for him because his heart has to re-adjust to having pressure on it. He has "competed" with the pacemaker a few times and Rachel says that is scary. He needs a lot of positive ENERGY and PRAYERS especially for the next 24 hours.

Jason and Rachel are amazing parents. Jason is at the hospital all day everyday (with the exception of eating and showering) supporting Rachel and Ryker. Rachel sits by Ryker's side as much as she possibly can and rubs his hands and hair. She is currently the talk between the nurses (Per. Dr. Del Nido) that she NEVER leaves his side except to pump and eat which she only does because it helps Ryker. This is not shocking to any of us that know Jason & Rachel, we knew they would be so strong and do whatever it takes to help Ryker.

Rachel's Mom Pam has been with them the last few days and it has definitely made a HUGE difference for Jason and Rachel as well as all of their family far away. We are very thankful to her for going out there.

Your prayers, energy, and amazing contributions towards Jason, Rachel, Ryker, Trett, Jadd, Braylee & Addi really are helping and making this all bearable. They realize how great of a support system they have and know they can make it through anything.

Stay tuned.......

Sunday, March 25, 2012

Ryker update....

Update #2... from Ryker's Grandma Pam. Ryker's blood pressure is up, he is looking less bloated, we are breathing easier. Tomorrow will be a big day.

Please keep the prayers coming that tomorrow Monday they will be able to find out what is going on so he can get back to recovering.



Ryker could use some extra prayers right now, his blood pressure has dropped and his white count is up, they are worried about infection. If it is an infection they will need to give him an antibiotic which is hard on the kidneys which are already stressed. Please keep him, Jason and Rachel in your prayers along with the amazing Dr's that they will be able to find out quickly what is going on.

We are confidant that CHB will get him through this as well.

Thank you for all the support I will update when I know more.

Saturday, March 24, 2012

Jason's "breakfast in bed" and Ryker update

First off I want to say how amazing Jason and Rachel are. They have both been so strong and resilient throughout everything in their life and now more than ever. They consistently talk about the miracles and how amazing Ryker is and do not dwell on the downsides of what is going on. To them they are the luckiest parents in the world and it is a miracle to have Ryker and to be exactly where they are (Of course having Trett, Jadd, Braylee and Addi would make it WAY better and easier).

Jason told me this morning as excited as can be that he had breakfast in bed. I was thinking really???? How in the world did Rachel pull off breakfast in bed for him????? Especially because she has been sleeping at the hospital and he has been sleeping at Chris and Lori's. Well he explained that Chris and Lori brought them a air mattress to put on the hospital room floor. Starting the night of Ryker's first surgery they have both been sleeping on that air mattress. His breakfast in bed was courtesy of Jamie and Annie from the care package they send that included chocolate bars which he was referring to as his breakfast. We had a good laugh about this and said who would have thought.

Ryker is blessed to have all of you in his life but most of all blessed to have the two most amazing parents dedicated to doing whatever it takes to support him and spend time with him.

As far as Rykers condition goes, because the PDA was open it has taken a toll on his kidneys. The Dr. is tyring to get the kidney's flushed and get Ryker's body to release a lot of fluid so his kidneys can recover. Other than that concern he is doing good. The Dr. thinks he will be able to close his chest Monday.

Please keep the positive thoughts and prayers coming. Also please say a prayer for Ryker's buddy Pierce who is struggling right now.

Thank you!

Friday, March 23, 2012

PDA Ligation

As I mentioned in my previous post the Dr. was having a Cardiac Catheterization performed on Ryker and hoping to find and fix the problem during this procedure because it is less invasive. Well they were unable to fix the problem during the Cath but during this procedure is when the amazing (and as Jason says one of his many new hero's the last two weeks) Dr. Pedro del Nido found that Ryker has a defect called PDA. Some babies just have this defect. Their PDA never closes. The PDA is a duct that is open in the womb. It is how the fetus gets oxygen without breathing. When the baby is born over the course of a few weeks it closes (Thank you Kristen Spyker for the information). In Ryker's case it did not close and Dr. Pedro del Nido had to go in an ligate it (close it). How the Dr and his team have been able to figure this all out in such a timely effort has truly been miraculous and has literally saved Ryker's life.

The Dr. has said that he sees immediate improvement in Ryker's blood pressure and kidney function since this procedure. Jason and Rachel get to see him shortly and they are VERY VERY VERY thankful they have Ryker in the care of Dr. Pedro del Nido and his team at Children's Hospital Boston.

Thank you for the support, positive energy and prayers.

Ryker UPDATE and the REALITY of his Recovery

Please please please keep Jason, Rachel, Ryker and the Dr's working on Ryker in your thoughts and prayers. Jason and Rachel just learned that the Dr. has been watching Ryker and monitoring him very closely because he knew there was a sign of distress yesterday. He says that the stress is coming from something blocking the blood flow to his kidneys. They are going to perform a cardiac catheterization and hopefully be able to fix it from there today.

The good news is that they have caught the problem early on. Also great news is that CHB (Children's Hospital Boston) has what I hear one of the worlds best cath Dr's James Lock. He literally invented half of everything cardiologists do in the cath lab. Dr.

Dr. Pedro del Nido is a perfectionist and does not sleep until he can figure out the source of the problem. Jason said that he was in and out of Ryker's room running tests between surgeries and meetings with other patients all day yesterday. Jason said it is pretty incredible to watch how he works with his team and the response and respect he has from his team. One time he would come in wearing a suit, the next wearing his scrubs. It is truly amazing what he does for his patients. He has also been a great support and comfort to Jason and Rachel.

I have had a lot of people ask me about the recovery and when Ryker will be able to go home etc. I have talked to Jason and Rachel and we think it is a good idea to give a little more information so everyone can understand a little more of what they are going through. My information is coming second hand and I am just learning about all of this so I hope it makes sense.

Because Ryker's body is so small and cannot handle the swelling and pressure right after surgery the Dr. did not sew his incision back up. When Jason and Rachel walked in to see Ryker for the first time after surgery not only did they see wires and tubes coming out of all parts of his body, his chest was fully exposed and they could and can still see his heart literally exposed. His incision will not be sewn back together until the Dr. feels he is 100% ready. Ryker is sedated and will be sedated for many more days to possibly weeks. Dr. Pedro del Nido is going to be taking the recovery process VERY VERY VERY slow with Ryker because his body is so small and his heart condition so complex. That includes waking his body up from sedation. It will be a very slow process. He will slowly wean him off all the medication his body is using to function now.

Thank you for all the prayers and support.

Thursday, March 22, 2012

DONATION MARATHON!!!!!!!!!!!!!

The donation marathon results are in and we raised close to ............. $11,000..........WOW you are all amazing. There were donations from $10 to a $1,000 and every cent added up!!! Even if people could not financially donate they spread the word and with out EVERYONE this would not have been possible. The support has been amazing and yesterday it was unbelievable. There were people who hardly know anyone in our family or do not know us at all that were donating. We definitely feel God and positive energy working together for Jason, Rachel, Trett, Jadd, Bray, Addi & Ryker even when they are going through the most difficult time in their lives. Thank you to all of you who I know have brought a huge smile to Jason, Rachel and their kids.
Facebook is definitely amazing and spreading the word and bringing people together!!!!
Again thanks to Children and the Earth for sponsoring Ryker.
And because posts are always better with a photo he is our sweet little fighter Ryker.

BUNCO FUNDRAISER


Fun night out join in!!!! Children and the Earth is having there first Charity Bunco tournament. Proceeds will assist Ryker and Chloe (a young girl that was kicked in the head by a horse, and is undergoing several surgeries with no insurance). It is time to reserve your seat for the tournament at club 90. Everyone needs to pay before the event to secure your seat. The way you do that is to go to www.childrenandtheearth.com at the top of page is a donate button it is a pay pal account please pay your... $20.00 and then send us your name by email or FB and let us know if you are playing single or who is in your team. Space is very limited so don't wait it will be a first come first serve. Dinner will be included. Drinks will be on a cash bar. Great prizes and cash will be given away, come have fun. If you have never played it is easy to learn everyone is welcome.

UPDATE - Morning after surgery

Ryker did good through out the night. Dr. Pedro del Nido came in this morning and said he is still not out of the woods and is still being very cautious for the next 24 hours. Ryker still needs ALOT of prayers, please keep them coming.

As you can imagine it was and still is very hard for Jason and Rachel to see the condition Ryker is in after having such a serious surgery. They need your continuous support and prayers as well.

The Ryker Donation Marathon was amazing and thank you so much to all that contributed either by donating money or sharing Ryker's story. I am hoping to do a post about the Donation Marathon this afternoon along with the latest on Ryker.

Stay tuned...........

Wednesday, March 21, 2012

SURPRISE DONATION MARATHON

As a SURPRISE to Jason and Rachel we are having a Ryker Donation Marathon. Any amount you can give is VERY much appreciated and helps Jason and Rachel during this difficult time. Please join in once you donate please post on your facebook page that you donated to the Ryker Donation Marathon and post the link to this page.

Thank you for all the donations and support thus far. The support has been phenomenal, Jason, Rachel and their families have amazing friends and support. Any kind of support is what they need most now.

Thank you Children and the Earth for sponsoring Ryker. Thank you Trett and Jadd's Mom Amy for this connection. Expect to see a lot more of Children and the Earth in the future for Ryker.

DONATIONS

When donating you will see that the money is going to Children and the Earth. I am working directly with Children and the Earth and the proceeds will go directly to Ryker. Please try and specify Ryker in your donation notes. If you do not specify we may email you for clarification.

Thank you all so much you are amazing!!!!!

Dr's visit after surgery

Just got off the phone with Jason. Dr. Pedro del Nido said that Ryker did perfect going in and out of bypass. He said that he was able to slow the leaking valve down enough that he was comfortable with to last until his next surgery. He did place a band (instead performing the dks) which will make it possible for his body to grow big and strong before his next surgery. Before the surgery Dr. Pedro del Nido said he was hoping to be able to move some of his veins that were not in the correct position but did not think that they were large enough to be able to move. Well guess what they were large enough and he was able to move them. YAY!!!!! We are very excited about that. He also said that the left ventricle is a little larger than he thought which is also good news. Ryker does have a little more bleeding than the Dr likes to see so he said he is not too concerned about that but definitely keeping his eye on it.

What a little fighter and miracle boy. I could not be prouder of Ryker or his parents and siblings for being so strong for him and eachother.

Jason is very excited about how well the surgery went and he does not think it could have gone better. The next forty eight hours will be important for Ryker to stay stable so please continue to send your positive energy and prayers. Jason and Rachel will be able to go back and see him in the next few hours.

The Dr. says he wants to take the recovery process as slow as possible but most likely Ryker's next surgery will be in 3 months.

We appreciate the support everyone has shown more than you will ever know. It has truly kept Jason and Rachel going and Rachel has been taking pictures of her facebook page showing all the profile pictures, taking pictures of your comments, taking pictures or Ryker...I know surprising she is taking pictures not like her at all ;) (Rachel loves to take photos for anyone who does not know her).

Thank you thank you thank you. I will post an update later so stay tuned............................

Tuesday, March 20, 2012

Ryker's surgery....

Ryker is heading in for heart surgery tomorrow at 8:30 AM Boston time, his surgeon is what we have determined the best Cardiac Surgeon in the world …..the famous Dr. Pedro del Nido. If you want to learn more about him and his fantastic work google brings him up right away.
Dr. Pedro del Nido has a waiting list of approximately 10 months to a year so
it is certainly a miracle that he is working on Ryker tomorrow. Jason and
Rachel met with the famous Dr. today and said they have never felt more comfort from a Dr. and he had a heavenly presence about him. We have heard over and over by medical professionals that Boston is the place to be with what Ryker has going on. We are so thankful that Ryker is in the best place and hands possible for what he is going through.

Ryker’s story continues to amaze people day after day. Even the Dr’s at Boston are surprised and puzzled by his story, how he got there and how in the world he had Dr. Pedro del Nido doing his surgery TOMORROW!!!!!!

As you can imagine Jason and Rachel are very scared and nervous for what is to come tomorrow, please keep all the positive thoughts, prayers, comments, texts, facebook messages etc. coming. Although they do not respond to all calls, texts, comments or messages they definitely read them and comfort them.

Ryker is going to do amazing. While he was in utero he use to kick Rachel all the time when she would start to stress or worry about him. I always told her he was kicking her to tell her he was a fighter and was going to be ok.

How amazing with all the facebook profile pictures featuring Ryker.....Thank you everyone you are amazing. If you have not joined in yet please do. You can use a photo someone else has already posted or use a photo off the blog.

Boston Bound

video

Rykers first breath

video

Amazing video by Chris Ilgenfritz

Photo Book Link



Please click on this link to see an updated photo album that Chris Ilgenfritz put together of Chris,
Lori, Jason, Rachel & Ryker.

https://www.icloud.com/journal/#p=05&t=CAEQARoQw3BbRHwqX8CG5XLxLX8b0Q==&f=/82J93X7T25~com~apple~mobileiphoto/Public/72ACDCFD-AD03-48E5-B3C5-1E6B9D455D3D.jb/index.json

Please continue to keep the prayers and positive energy flowing to Jason, Rachel, Trett, Jadd, Braylee, Addi and Ryker as they prepare themselves mentally for the toughest fight imaginable.

Thank you everyone for all your support and thank you Chris & Lori for these beautiful and priceless photos.

Monday, March 19, 2012

Update

Update to let everyone know Ryker is on the schedule for surgery Wednesday 3/21/2012. Please keep Ryker and his family in your prayers.

Thank you.

Sunday, March 18, 2012

Some photos too cute not to share.......





Welcome Everyone,

I am Ryker's Aunt and I have created this page to keep everyone updated up on all the latest news on our little miracle Ryker. I am going to begin this blog starting with his story after birth. If you would like more information regarding his diagnosis in utero you can find that information on Rachel's blog http://jrwarner2.blogspot.com/.

First I want to send a big shout out to all the family members and friends that have really been there for Jason and Rachel and offered everything you have to offer. Here is what Jason had to say about it today on facebook. "What a miracle this has been this has truly been one of the most amazing things that a child could only bring to my family and friends that have been tapped into such a emotional, spiritual level that I belief only exists for those who chose and let it be so amazing in there lifes. All of us that are involved have already reached levels beyond what I thought were possible and this journey is only 40 weeks in imagine where we are all going to be in the end what a true blessing ryker is bonds are being made that are unbreakable thanks to all those who have been such a huge part in this Miracle!!!! "

Ryker was born in Utah March 7th and came out crying and looked beautiful. We were so excited to see that he had great color and looked amazing and perfectly healthy from the outside. We understood that he had Heterotaxy and that it was a serious condition but we were about to get a loud wake up call of how serious his condition was. The Dr's that were working on Ryker gave Jason and Rachel three different diagnosis (two in utero and one when he was born) of which type of heart condition Ryker had along with his Heterotaxy. The last conversation they had with the Dr. left them feeling uneasy and not certain they had Ryker in the right place. By the grace of God they were then informed by two amazing women, (and mother's of children with Heterotaxy) Kristen Spyker and Jessamyn Fields that the severity of Ryker'scondition is much worse than the Dr's were telling them. Most importantly they suggested that it was imperative to get him to a top Pediatric Heart Center. After talking with these two mothers and hearing from them that Heterotaxy carries a 80% mortality rate and the Hospital that has a significantly lower mortality rate is Boston Jason and Rachel new they had get Ryker to Boston ASAP. Making the hardest decision they have ever made Jason and Rachel sent their two girls to Montana with their Grandma and left their two son’s in UT with their Mom.

Jason, Rachel and Ryker were flown from Utah to Boston on an Air Ambulance via Air Crititcal Care http://aircriticalcare.com/ . Air Critical Care is highly recommended by Jason and Rachel if you are ever in need of a transfer.

One of my best friends brother and his wife (Chris & Lori Ilgenfritz) so happen to live 10 minutes from the Boston Children's hopsital. Being the amazing people that they are volunteered to let Jason and Rachel stay with them until they figured out how to get Ryker the care he needs. These two individuals have been amazing and our family will forever be grateful for the amazing care, concern and compassion they have shown to Jason and his family. They have gone above and beyond what you could ever imagine to help make this tremendously hard situation bearable for not only Jason and Rachel but all of us.

To put it simply Boston has diagnosed Ryker with Heterotaxy RAI (right atrial isomerism) with asplenia and ventricular discordance. His heart condition is so complex that he will need multiple surgeries. Jason and Rachel were told today that the top Pediatric Heart Surgeon Dr. Pedro del Nido looked over Ryker’s echo and was not going to wait any longer for his surgery. He informed them his surgery needed to be scheduled for the week of 3/18/2012.

Many people have asked how they can help the family. To get Ryker the care he needs Jason and Rachel have incurred and will continue to incur many costs. The best way you can help is to give a monetary gift to help pay for their expenses. Our current goal is to raise enough money to pay back the loan for $28,000 it cost to fly Ryker via Air Ambulance from Utah to Boston. Ryker is currently at the #1 rated hospital for Pediatric Cardiac Surgery. Because his heart condition is so complex the Dr’s in Boston give him the best chance at a quality life. Ryker’s care will be long term, expensive and intense for him and his family.

We thank you for your thoughts, prayers and encouragement and ask that you please keep them coming.

God will continue to bless our journey and we will continue to follow him and know he has a plan.

God Bless you all and stay tuned.

Tisha


****If you would like futher informatoin regarding Heterotaxy please visit Kristen Spykers website http://heterotaxysyndrome.org/wordpress/what-is-heterotaxy-syndrome/ .