Our Miracle - Ryker's Journey with Heterotaxy

Our Miracle - Ryker's Journey with Heterotaxy

Friday, November 9, 2012

Happy Halloween!!!!



From Rachel - I know Halloween is past...but I had to post this one (even if it is late) This is Ryker's little Halloween outfit that his (& our) Absolute Favorite Nurse got for him for Halloween! Her name is Sonya & she is AMAZING!! Over the last 8 months that Ryker has been in the Hospital, she has been here for him & us the majority of this time! We love her SO much & we are SO grateful for her! And- look how dang cute he looks in orange! :) Sonya & I decided its Ryker's color (not blue....or grey for that matter! Lol!) Technically he was intubated on Halloween, so this was a little later. I think He deserved to be free from the tube for his first Halloween pic! 

UPDATE FROM RACHEL 11/6/12
I have had a lot of people ask over the last few weeks when Ryker is going to be able to go home. It's a little complicated, but I will try my best to make some sense of it for you all who are wondering...
I know I haven't been super explanatory lately, but so many things have been so complicated for the last few months that it is hard to really go into detail & make any sense to anyone who is no
t in the medical field (or another heart Parent:) There has just been a lot going on & the last thing I want to do is say too much, so I'm sorry that there have been a lot of questions unanswered lately. The main thing is that Ryker IS doing really good right now & we want it to stay that way!!! :)
Ryker will be having another Cath in a few weeks (exact date is based on him & how he is doing) Depending on how that Cath goes & how his Pulmonary Vein Stenosis looks he will either go shortly towards his Glenn Procedure (PRAYING SO SO HARD THIS IS WHAT HAPPENS!) or he will go into a Sutureless Repair to hopefully correct his PVS. We are Praying SO hard that Ryker's PVS has backed off a bit so that he is able to get the Glenn Procedure done so he can get back on track & get home sooner than later!!! I have had many of you ask for specifics to pray for & this is one one of them. Ryker's PVS has been THEE thing in his huge diagnosis that has honestly scared me the very most. It's baffles me that somehow he (& many other amazing babies) are able to survive with half a heart because of the amazing surgeons & technology these days, but somehow these teeny-tiny pulmonary veins get STUPID PVS & it's incurable unless it decides to subside on it's own for the most part. So please, if you are praying for my sweet baby- Please pray that his PVS will subside & he will be able to have his Glenn Procedure & GET HOME!!! :) Thank you all so much for caring so much about my baby boy! It means so much to both Jason & I :)

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