Heart cath updates

This is the post I’ll continue to update today. We’ve made it and are waiting to check in. 

Heart Cath Surgery

6:23 he’s been cleared to leave for the night but he’s coming out of anesthesia really slow so we are waiting for him to wake up a bit more before heading out 

4:00 Dr Delaney just came out and provided an update. He is finished with surgery and Blaise did good. They are starting to wake him up now and we are waiting to go back to see him. Let me start off by saying that God put Dr Delaney on this Earth as a true gift. He is incredible, and we are so thankful. Also, our group of prayer warriors honestly blows our minds and there are no words or ways to say how grateful and shook we are each time by you all. The official report from Delaney is that his Fontan pressures are at a 10, and that’s as good as they could be, perfect!! If you’ve been here for 13 years , you’ll remember he was born with those “strange life threatening sinosuides” that have always been a concern but we always get told “he’s doing ok with them, so he’s a special dude.” Well Delaney said when he looked at them today, one has basically dissolved while the other is flowing in such a way that if something were to happen, it wouldn’t be as catastrophic. Amen! There were two collaterals that had formed off his heart. The first one Delaney said had actually been there since his Glenn surgery at age 3 months. It had grown or changed enough Delaney decided it was time to coil it off (block it). The other actually circles back around and reconnects to his heart almost like a shunt so there was no reason to do anything with that. The blood clot is completely gone! He will however stay on a blood thinner like Coumadin the rest of his life as we know his body forms clots now. Overall it went as great as we could have hoped. We haven’t seen him yet so are praying he comes out of everything good and his heart keeps acting fine. They put new types of plugs in the insertion holes and this lessens the time from laying flat immobile from 6 hours to just 2 hours. His neck hole they aren’t as concerned about bleeding out. And since we live within an hour of Omaha, he thought as long as he comes out of everything and is stable we could potentially go home tonight. Thank you for prayers so far and keep them coming for recovery!! 

2:45 nurse called with next update- they are going through everything and exploring everything. They did coil off a collateral that had formed and they felt needed blocked. This means we will be staying overnight. Nurse said they’ll keep continuing on with everything. 

1:45 nurse called with first update- they are just getting started. She said he did really good getting pushed back and settled. They were talking about his livestock and their names. He said he had a pig named Brenda and the nurses asked if he had one named Karen and he thought that was hilarious on his versed meds. 

1:00 Dr Delaney came in and ran through everything with us. He really is the greatest. Blaise was horribly nervous, I’ve never seen him that scared. They’ll do two entries through both neck and groin. They just left to take him to operating room. He requested Zach Bryan to be played on radio. The nurse will call each hour with an update. Thank you for praying with us!

11:00 still waiting, not sure how long the case before us will take. We haven’t talked to surgeon yet. Original blood draw clotted and they can’t get anymore out of iv. I guess going off his blood thinners really worked… the nurses could see how upset Blaise is and called and asked if they could re draw blood after he’s asleep in operating room and they said they could. They also sent a child life specialist in to help calm the nerves and tears. She had pictures on her iPad of the operating room so that was helpful too. Hard on parents not being able to go with in there. 

10:00 00 iv in blood drawn and waiting. Sounds like the cath before ours started late. 

9:00 we are here, checked in, and waiting. Fighting lots of nervous tears. 

The time has come for Blaise’s next heart surgery. This Thursday, June 6th he will have a heart cath surgery at Children’s at 11 am. He’s had previous heart cath surgeries at 1 day, 3 months and age 6. He’s had open heart surgeries at 2 days, 3 months and age 6. So this will be his 4th cath surgery, 7th heart surgery. 

As always, our prayer warrior community has rallied around Blaise and shook the Heavens with prayer and our family is eternally grateful. I’m updating our community again with this news as we’d welcome all prayers that are said for Blaise on Thursday for a successful surgery. 

Blaise is officially six years out from his Fontan surgery. Wow how time flies. For those that have followed along, last year a new world of testing was started for Blaise as we try to keep on top of his fragile heart and get baseline numbers and collect information. Most were minimally invasive: ct scan, mri, bloodwork, echo, stress test etc. We were informed last year it was time to have a heart cath surgery done this summer to look closer at his heart and how things were going. 

So, on Thursday morning Dr. Delaney (a true God-sent angel and has done Blaise’s other three heart caths) will take our precious kiddo and make sure his hearts ticking just fine for many more years. After being put under, he’ll gain access either through his leg artery or jugular artery. he’ll then proceed with the camera to his heart where he’ll take images, do inspections, measure pressures, check out valves, etc etc etc. If he finds any areas of concern or needing repair like ballooning, replacing valves, etc he’ll do the repair while in there. It’s been noted and mentioned to us from all of his outside imaging that it seems some collaterals have formed. These are new pathways (veins) that his body is forming to try and provide more blood between his heart and lungs. If Dr Delaney thinks these need fixed, he will coil them off. 

Following his heart inspection, he will then have a liver biopsy done. They are doing this as kids with Fontan circulation all develop liver chirosis, and depending on level of severity many go into liver failure. This is because the liver can’t handle the mixed oxygen rich/poor blood that flows through it. This biopsy will be our first sampling and testing to see how his liver is doing. I’m embarrassed to admit this, but I’m honestly not sure how the liver biopsy is done. I guess we will learn on Thursday. 

To recap, our prayer requests would be these: Blaise makes it successfully through surgery, no repairs or work are needed, liver results come back great. 

Following the surgery Blaise has to lay flat and be completely immobile for 6 hours to reduce risk of the entry site bleeding. He had blood drawn on Friday and as of that date has stopped Coumadin until after surgery. (Oh that reminded me- I’m guessing they’ll get a better look at his clot- let’s also pray that it has started dissolving and not gotten worse). If any repairs are done while in cath or if he’s unstable coming out of cath, we will stay overnight. 

This week Blaise should be at heart  camp all week like he was last year. Unfortunately, this was only week Dr Delaney was available so he wasn’t able to go. 

We’ve kept most of the details away from Blaise, but also know he’s 12 now and we can’t keep everything away as he understands it all now. I can’t imagine being a 12 year old knowing I was going to have heart surgery. He knows Jesus loves him, and we remind him of this all the time. He’s had tears, admitted he was afraid he would die or be stuck in the hospital forever and I’ll never admit to him we have those fears every day too. However we know God is bigger than all of this and has blessed us repeatedly with our miracle and know His blessings will keep coming. He’s the toughest kid I’ve ever met in my life!!!! 

Thank you to our village for lifting Blaise up in prayer on Thursday. I’ll plan on creating a blog post that day and will keep updating it during the day and surgery as I’m able.