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! :)
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