Hard Update

This is Rachel... I have debated for sometime now whether or not I have been ready to give some sort of an update. As many of you know, the past week has been extremely hard for Ryker & our family. This has been by far thee hardest time in the entire 4 months of us being here. I have to apologize ahead of time for being brief in so many areas, but as of now I don't know how ready I am to emotionally let much out.

Last Friday Ryker went back to the cath lab & sadly we didn’t get the results that we would have loved to have gotten. We discovered that Ryker’s Pulmonary Vein Stinosis has not only gotten worse but his upper left pulmonary vein is completely occluded, his lower left had to have a stent put in to keep it open & his right upper pulmonary vein may be in danger of PVS as well. For any of you who know about PVS you know that this news is horrifying! We are praying with all that we have that his right pulmonary veins will stay open & that his stent will last well!!

After the cath he extubated very easily & had a great night, but the following day he was very irritable. By the time it was around 8pm on Saturday he was exhausted & this is when things begun to tumble down hill rapidly. Before I knew it Ryker had gone from cuddled up nicely in my arms to ghost white & lifeless. Within minutes half the CICU staff was in his room doing emergency sterile procedures while I watched through the window in tears after the CICU attending had gone over the fact with me that he may not make it. After all he has been through I have never had to have that conversation before. I wanted more than ever before to wake up from my nightmare, but at that moment it was my hard reality....the feelings I felt that night are unexplainable, feelings I wish I could pretend were never there.

The next 24 hours Ryker was in critical condition. He was put into a medically induced coma to keep him as stable as possible. Nobody knew if he would make it & many thought he would end up on ECMO (life support) by Sunday night. We had numerous Doctors & nurses sit down with us & to let us know that come Monday we would be forced to make extremely hard decisions, decisions that no parent should ever have to make. At that time I could only imagine what those decisions would be, but I didn’t want to hear it. I just feared Monday like like you couldn’t imagine.

By Monday morning things begun to change & change quickly. Ryker’s numbers & labs begun to improve & he was looking better & better by the hour. I know in my heart it was the outpouring of love & prayers that he was receiving from all over the world! Everyone here at the hospital was amazed at how rapidly he was improving.

Throughout the week we have had many meetings with many Doctors, but one particularly stands out. The moment that Dr. DelNido came into his room on Monday morning, when we felt all hope was lost & said “Yes, Ryker has had a major setback & an extremely hard weekend, but I feel he has turned a corner & we will proceed down the path we were on & get him as healthy as possible so he can get to his next procedure" I have always known we were in the right place for our baby, but at that moment I realized how much I really was. Although everyone else had given up on Ryker, Dr. DelNido hadn’t! I am so grateful for this man!!

As of today, we have started Ryker on a new heart medication in hopes of improving his heart function. They will do a thorough echo next week to see if it has helped & if it hasn’t they will be forced to operate sooner than they would like to. The operation that they will do is the Glenn along with a few other things that make the surgery a lot bigger & more serious & would like him as big as possible for it. But if this medication doesn’t help they will have no other choice.

So from here all we can do is pray! Pray that his heart function improves dramatically & he can grow bigger for his next operation, Pray that his PVS improves & that it doesn’t spread to the right side, & especially pray that this sweet baby boy has strength for all that he has & will endure. He deserves so much more than this hospital life & I will do all I can do to get him there!!