Cath Update

This last Monday September 17th Ryker went to the Cath Lab for the 4th time. He went in for a Cath for three reasons- 1-The Pre-Glenn (to check all the pressures in his heart to see if he is ready for the Glenn Procedure) 2-To do an Ablation on scar tissue in hopes of illuminating his A-Flutter 3-To check on his Pulmonary Veins.

When we first sat down with Dr. Marx post Cath, we knew something was wrong. Our mind were going 100 miles a minute! Dr. Marx went over all the positives first, one big thing being that they felt like the Ablation was very successful & that they have high hopes that his Flutter could be gone. Then he begun talking about the pressures in his heart & the overall function of his heart & that was all very good as well. Then he said "If it weren't for Ryker's Pulmonary Veins he would be in perfect condition to head for his Glenn Procedure....However, Ryker's Pulmonary Vein Stinosis has now moved to his right side as well, making him no longer a Candidate for the Glenn Procedure."

My heart sank in my chest.....What?!? How!?! He has to get get the Glenn...He can't survive without the Glenn....That is what we have been waiting here at the hospital for 6 months for......

Jason & I asked every question possible, but all that could be said for anything was "Dr. DelNido will have to look over all the information & see if it is possible to do a sutureless repair on Ryker & if not he would need to go back to the Cath Lab again soon for some ballooning of his veins. (The Sutureless Repair is a major open heart surgery that is the only known surgical aid for PVS) Here is a link if you would like to know a bit more about it-  http://www.ncbi.nlm.nih.gov/pubmed/21704970 

So needless to say from Monday until tonight Jason & I have been in agony....wondering if this really could be the end....Begging & pleading with God to please show us a way! After all these months of waiting could it really be possible that our baby is not a candidate for the Glenn Procedure & if he truly isn't then what other choices do we have? How could this be happening, after all our sweet baby boy has been through!? What Now???

Then tonight, after 3 emotional days of literally refusing to leaving Ryker's room for fear of missing Dr. DelNido. He finally walked through the door. I wanted SO badly wanted for him to say that it was a misunderstanding & that we could move on with the Glenn...that this wasn't really happening! But in all reality I knew that wasn't going to be the case. It was a long conversation with both Dr. DelNido & Dr. Marx. Here is a summary-

Ryker's PVS has in fact sadly moved to his right side, which like I have mentioned months before- If you know what PVS is you know that having it in any of your Pulmonary Veins is not good, let alone having it in all four of them. But as of now Dr. DelNido does not feel it is to the point that it would be good to do any form of intervention. The tricky thing with PVS is that if it is getting worse you have to treat it & treat it FAST....But on the other hand if it's not going to progress & you do any ballooning or do an unnecessary Sutureless Repair it will actually make the problem a whole lot worse. So from here we will monitor it extremely close & if anything at all comes up they will send him back to the Cath Lab. But if nothing seems to change & he is able to grow & thrive, they will plan on doing another Cath in 6-8 weeks. If it has progressed at all during those 6-8 weeks we will have no choice but to balloon his veins &/or do a Sutureless Repair. If for whatever wonderful reason it doesn't progress in that time frame & looks the same as it does now, Dr. DelNido will do a Glenn Procedure on Ryker. :) Please God let this be the way!

From there he discussed the possibility of Ryker becoming a part of something that is only being done here at Boston called the Gleevec Study. It is a study that is being conducted on infants & children with severe PVS in hopes of finding a cure for this horrible disease soon. It terrifies me beyond words to think of my baby being part of a clinical study, but if it comes down to it being something that could potentially help him fight this off then there is no question in my mind that we will continue to do everything we can for our baby boy.
If you would like to know more about the Gleevec Study here is a link- http://www.childrenshospital.org/clinicalservices/Site683/mainpageS683P5.html

Then he told me that they believe his episode 2 weeks ago that put him into Cardiac Arrest & then onto ECMO could possibly have been something to do with Pulmonary Hypertenion or something close to it. If that is the case we are in the process of taking the right steps to hopefully (praying my hardest) prevent that from ever happening again!

So, by the end of our conversation I was extremely saddened by the fact that my sweet Ryker's heart function IS doing well & DOES have the perfect amount of pressures going through it to be in perfect working order for the Glenn Procedure & his PVS is ruining that all for him! Just hearing the words "He is no longer a Glenn candidate" was horrible! But it is only for now...not forever! He will get to his Glenn & get to come home soon, I know it! At least there IS HOPE!!!! From here all we can do is stay positive & love this sweet baby with our whole hearts!!

He is the most AMAZING BABY BOY & he will continue to Astonish us all :) Thank you all for your continued love & support!