Update from Rachel.....Yesterdays cath wasn't exactly how we had hoped it to be. As always it was so hard waiting for answers that we weren't quite sure if we would want them or not. After 5 long hours, I was pulled aside by both the attending Dr & the Dr that did Ryker's cath. Turns out Ryker has something called Pulmonary Vein Stinosis :( For any of you who know what this is, you know this diagnosis is not good! Jason & I are devastated & praying our hardest for the best! Both Dr. Marx & Dr. Del Nido say that the ballooning of the veins (that they did during the cath) may or may not fix it....so all we can do is pray! This has shocked not just Dr. Marx & Ryker's entire Cardiologist team, but it has absolutely shocked Dr. Del Nido. This is not at all what they had anticipated to find during the cath. The other problem is that this has nothing to do with the problems that he has been having. So today they are currently doing a thorough sedated 3D Echo to get a closer look at a few things, then from there they will decide whether or not they will need to operate on Ryker's tiny little heart again this week... :( Please pray for my sweet boy!!!
As you can imagine we were all (including you reading this) hoping for a big break yesterday for Ryker and his family. The news they received yesterday was definitely not what we anticipated but we know that no matter what happens or what diagnosis Ryker gets he is a fighter and will overcome all obstacles that are set against him. He is the strongest and sweetest little boy and he is here for a reason. The stars have aligned for him to still be with us today, be in Boston and get the help he needs, right now the stars are scattered and with the doctors help, his parents support & love, your support and prayers and most importantly GOD's help the stars will slowly but surely re align. :)
Please send as much positive energy and support as you can to Ryker, Jason, Rachel, Trett, Jadd, Braylee & Addisyn because they really need it.
Thanks for the updates Tisha
ReplyDeleteHang in there. Our family us very familiar with pvs and our grandson is a testament to a baby's strength, the wonderful doctors at CHB and what a family's love and support with the help of God can do. We are beginning our 4th year at CHB with Hunter who has survived and thrived since his diagnosis in early 2009 He returns to CHB periodically for follow up, but otherwise lives a completely normal life and just turned 4 in March. All things are possible so keep the faith, it may be along road but is so worth it.
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