Update

Update from Rachel on Facebook - Ryker has been having a really good week! We have increased his feeds to 19 ml. per hour & he is doing well with that! He hasn't had anymore tummy problems (knock on wood) & is putting on tiny amounts of weight. As of now he is almost back up to where he was before he returned to the CICU last week, which was 3.4 kg & right now he is 3.32 so he has just been playing a little catch up. They keep tr...ying to ween his Adavan & because he is on the smallest dose possible the only was to ween it is from every 12hrs to every 24 which is obviously a huge ween, so every time he ends up having horrible withdrawls & then they put it back to where it was :( I think this is playing a big part in him not gaining weight because he ends up burning up all the good calories he has just taken in by crying & sweating. So today I insisted they leave the Adavan alone for a week & let him play catch up & grow!!! Praying for a relaxing & uneventful weekend!! :)

 

Ryker hanging out with his Dad 6/28/12

 

Jason & Rachel have moved into their new apartment and Trett and Jadd are visiting in a few days. YAY YAY YAY I will post in further detail on both events when I receive more information and photos.

 

Update-6/25/2012

After 4 days in CICU- Ryker was moved back to the recovery floor Friday evening!!!!! :) I am SO grateful all the testing is DONE! My poor baby has been poked, prawed & tortured! They did dozens of tests both with his blood & his GI tract & every single test they threw at him has come back negative!!! :) Ryker has absolutely no malrotation of intestines (something that is very common in heterotaxy babies) or blockages. Basically what we have found out was the cause of his pain was an overloaded digestive tract. On Friday the 15th in hopes to try to get some weight on him we moved his feeds from every 3 hours to every 2 & then on Monday when that wasn't enough the team begged me to let them up his calories in my breast milk & between those two changes his tummy just had it! Heterotaxy babies have extremely sensitive tummies mainly because their hearts (especially before the Glenn procedure- Ryker's next surgery) aren't strong enough to supply enough blood flow to their tummies to process large amounts food or too high of calorie intake, plus they have smaller than normal stomachs. So from here on out (no matter how hard they try to push me to let them up his calories) he will not have anything but pure breast milk either in a continuous drip or every 3 hours. We have learned our lesson loud & clear!! :) 

Another minor thing they did find in their testing is that Ryker has a very tight rectal sphincter causing him to seem constipated although his isn't. Therefore- when he was having extreme tummy pain due to the additives in his milk he would tense up even more that normal making it near impossible for him to poop, therefore backing up his intestines so much that it actually made them distended, causing EXTREME pain for my poor sweet boy! :( This is something we are hoping he will just grow out of, but the GI team said as long as he is on a regular bowel regimend such as suppositories &/or miralax daily & breast milk ONLY he shouldn't have the problems has been having any longer. :)

Over the last week my poor baby lost a little under a pound in body weight :( obviously setting him back quite a bit...but his weigh in this morning was back up to 3.275kg. which is 7lbs 2oz (which he was 3.495kg which is 7lbs 6oz) So we are going to get him back up & continuing to grow so he can get to his Glenn!

So as of today he is on 18ml's of continuous feeds of breast milk along with approx 5 bottles a day of 10ml just to comfort him & make his tummy feel more full. He is doing SO good with this! He had to get a blood transfusion yesterday & is now more pink than I have seen hm since pre-op....:) I LOVE IT! 

Hopefully soon I will get this boy back to giggling now that he is back on the road to recovery! :)

This the day he got moved to the CICU after he got morphine & was able to finally calm down. Poor sweet boy! The thing on his foot is an IV. He kept kicking it with his other foot so they had to put a boot on it.

My pink baby boy after his blood transfusion

Update ... Tummy pain

Ryker had been doing so well and seemed so content for multiple days in a row. Those calm and content days for Ryker were so nice for Ryker, Jason and Rachel. Unfortunately Ryker started having a rough time again yesterday and needs your prayers that they can figure out what is causing him extreme pain once again. Rachel posted the following on Ryker's facebook page yesterday. After a whirlwind of a day, we are back in the CICU :( My poor sweet baby has been poked and prawded more than he did the night before his original surgery. We have had horrible deja' vu all day & praying for it to end! We are dealing with extreme tummy pain AGAIN & I personally believe it has a big to-do with the additives they added to his feeds just last night (immediately before the pain began) But we still have to double check on a few things before making any harsh decisions. They still plan to run more tests tomorrow.....please pray my poor sweet baby will not only have good results to the tests tomorrow, but that he will have no more pain in the process!


TODAY : Headed to get a lower GI contrast test done. Poor little buddy is being so sweet!

Update .....

Great news everyone! Ryker has been doing great!

Thank you Jan & Ron for hosting and organizing the neighborhood party/garage sale which was a huge success and brought it over $5,000, thank you to all those who attended, donated and helped with this event. Thank you to Carol for hosting a garage sale, thanks to those who helped, donated and attended. Thank you to everyone for all you have done to support Ryker and his family. 

We now have $1,000 remaining on the jet loan which started at  $28,000. This is AMAZING!!!! When Jason and Rachel knew Ryker needed to get to Boston it did not matter how much it cost or how he was going to get there, he needed to be there. They knew with God's help and their friends and families support together we could make it happen. I remember the day the jet was on its way to pick Ryker, Jason and Rachel up very clearly, we had to figure out a way to pay $28,000 to the jet company in a matter of hours. Jason and Rachel have such amazing friends and family that we had multiple people call and offer to max out their credit cards to get Ryker on that air ambulance to Boston. This was a max out my card and we will figure the details out later offer. How amazing and truly inspiring. 

You help make it possible for Ryker to get the support, love, and care he needs while giving Jason and Rachel the support and motivation they need to keep going each day. Each prayer, positive message, monetary contribution, and all other supportive acts made towards Ryker  make it possible for his family to survive. With God by their side and your support they have been able to put some stresses aside and focus on getting Ryker well. The overall goal is to get Ryker well enough so he can get out of the hospital and they can start a new life as a family with sweet little Ryker.

Jason and Rachel will be moving into an unfurnished apartment July 1st. We would love to give them an online house warming party. To participate, please donate any amount towards this event by making your tax deductible donation through the blog. Please specify which item you would like your donation to be applied towards. 

Items needed: 

2 Dresser's 
Full size hollywood bed frame

Mattress & box springs 
Couch
TV
Kitchen Table and chairs
Rocker
Recliner

From Rachel : Can you see what's missing?....Yep its Ryker's feeding tube, he pulled it out & then was so proud of himself & full of smiles LOL! Naughty Boy ;) Cant say I blame him! When the NP came in he gave her a huge smile like "look what I did!" She said she could go on with her day now cause his handsome smile made it perfect! :) He's such a flirt!

Boston Visit & Update

My sisters, Tiffany, Jessica and I thanks to the amazing support of our awesome husbands and kids at home were able to go to Boston to visit Jason, Rachel, Braylee, Addisyn, Ryker & our Mom (who has quit her job and relocated to Boston to help as long as needed).

Thankfully and fortunately Ryker was moved to the recovery floor a few days before we arrived in Boston. This was great news for us because it meant that we could all be in his room together and spend more time with him while also spending time together. As you can imagine we were so happy to see everyone but especially happy to see Ryker alert, awake and how great he was doing. Being able to hold him was an amazing feeling. We each got to hold him for hours when we could pry him out of Jason or Rachel's arms so they could sleep. We soaked up every second of being with him. 

Before I went to Boston I knew that Jason and Rachel were amazing and dedicated parents. Although I knew that I now know it is not possible to understand how amazing they truly are unless you visit them in Boston, see how they take care of Ryker, the girls, watch what their daily routine involves, experience their hospital/hotel life and the environment that surrounds them.  Through all of it they continue to be so amazing and so positive. Every step they make is for their kids. 

Much like not being able to understand how amazing Jason and Rachel are throughout all of this unless you see them first hand I think it applies to the doctors and nurses as well. Seeing how much they cared and how great they were at their jobs first hand was very comforting. 

We are all so thankful for the time we got to spend with Jason, Rachel, Ryker, Bray, Addi and our Mom. We are thankful and grateful to each and every one of you for supporting Jason, Rachel, Ryker and their family in any way (financially, emotionally, through prayer, through positive energy, supportive messages and comments on facebook etc.). Each and every one of you make a difference and make this terribly hard journey for their family a little easier.  

Along with Ryker please keep his heterotaxy buddies Logan, Nate and Pierce in your prayers. They too are recovering at Boston Children's Hospital and unsure what each day will bring.  

Latest medical updates on Ryker via Rachel:

6/12 - Ryker will be headed to the O.R again tomorrow, but this time for the removal of his broviac line!! :) A broviac line is basically like a long term IV more specifically used for heart surgery patients. He had this line put in during the 2nd of his 4 surgeries (The PDA Vessel surgery) He has had this line in his tummy for almost 84 days & I am super excited to get it removed, nonetheless nervous for the dreaded 3rd floor visit, sedation, short stay at the CICU & new IV access that will be needed. But he is going to do amazing & FINALLY after 3 months, have no more invasive lines attached to his poor little tummy or chest!! 

6/13 - Just got released from the CICU & back to our room on the floor! :) It was nice to be able to see some of our favorite nurses & Doctors, but so relieved it was such a short little visit, feels so good to be back! Everything went perfectly & Ryker was a champ as always! They were also able to get an echo in while he was sedated, so now I wait to talk to Dr. Marx about the results....It's going to be PERFECT like last time, I know it! :)

Update....

If you have been wondering what the plan is for Ryker for the next few months Rachel just posted the following: Ryker had a great night in his new room on the recovery floor!! He has seemed so much more content since being here. Its a little more of a "home" environment (at least as close as you can get at the hospital) It's been great to be here!! I don't remember if I have officially said this yet here on FB or not but sadly Ryker will not be going home until after his Glenn Procedure (which is stage 2 of his 3 stage surgery group, so for those of you who have asked- even though he has had 4 surgeries up to this point only 1 of them has been in the "planned procedures" the others like the pacemaker & such have been necessary but unexpected) The normal age for the Glenn is 4-6 months of age & we have been told that Ryker is an "early Glenn candidate" meaning he will be closer to 4 months old, he just needs to grow lots & get nice & strong before he can have that procedure done. So we are here on the recovery floor for a while just working on eating & getting big & fat ;) Then when they feel he is ready he will go in for his Glenn & then go back to the CICU for a while. When we came here to Boston we didn't plan on being inpatient for 4-5 months but we are taking this news as positively as possible knowing that this is what is best for our sweet baby & just excited to finally get a chance to spend time together as a family (instead of 2 people at a time) in his new room with this sweet baby!! :) Sweet little Ryker giving his signature look in the photo. :) 

Recovery floor....

Fantastic news....Ryker was moved to the recovery floor today. Please keep Ryker in your prayers that he can start putting on the weight and getting big and strong. 

Update & photos

 Update copied from Rachel - Ryker has been doing really good. He has been a little more uncomfortable the last two nights, which we think is withdrawals from a Methadone & Adavan ween they did on Saturday, so today they are going back to the way it was before the ween. The Doctors feel that because he is on such extremely low doses of them both that he will withdrawal from the tiniest little ween very easily. The plans are t...o move him to the recovery floor in the next 24-48hrs :) :) :) SO EXCITED about this!! They said that if he wasn't Ryker they would have moved him to the floor last week, but because Ryker likes to throw curve balls at them they are being a little more on the cautious side. I personally think it not as much curve balls being thrown, but more that my little Ryker likes all the nurse attention! ;)

Photo

Sweet little Ryker talking to his Mom today! He is so stinking handsome! 

Great morning....

Miracle Ryker status update on facebook - Ryker had the best night he has had in a while!! He slept so good & was happy every time he woke up. I haven't had him be as smiley & happy as he is now since before his first surgery! I will blame it all on the reintroducing of breast milk....But that's just me ;) His little voice & coo's are the BEST!!! He even made Dr. DelNido's day a little brighter this morning with a whole bunch of smiles- I know now that he really knows that man saved his life by the way he looked at him:) It was adorable!!! LOVE THIS BABY!!!!