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. 

 

Heart update

 t’s been an interesting five months of heart checkups for Blaise. He hit the five year post-Fontan surgery this summer, and is entering the new “pre-adult” Fontan clinic that was established at children’s this summer. The goal of this new clinic is to follow the kids who’ve had fontan surgeries done and complete regular tests and exams to keep on top of their single-chamber fragile hearts to look for things that are starting to fail, don’t look right, liver damage etc. 

So in July Blaise and I spent two long days getting him evaluated. EKG, holter monitors, echo, bike stress tests, liver ultrasounds, about 12 vials of blood and more. These tests all came out good, and we will repeat them yearly to continue getting baselines. I knew there was a good chance they’d “find something” as we are starting to dive pretty deep into looking at things closer then we ever had. A cardiac MRI was scheduled last Monday for Blaise, a first as well. Unfortunately a few things were seen, including one that’s a more pressing current issue. Today, we had an echo, to try and answer some questions from the MRI.  His fontan is made with a plastic vortex tube/shunt. The blood flows sluggishly through this, and there is one area in here that is showing “something”. It appeared on mri, but was hard to determine. The echo today went the same way and hard to determine. They are concerned it’s a blood clot, or it could also be a fold in the shunt. So, we need to determine what it really is. Next step is to do a ct scan with dye contrast that is scheduled for next Wednesday. If that is still not conclusive enough, they will do the exploratory heart cath surgery to determine. They will also potentially fix a few other things noted in the MRI including coiling new arteries that have formed. If it is a blood clot, they will change him from his daily baby aspirin to Coumadin blood thinner the rest of his life (Not ideal at all) to remove the clot. 

We are so grateful and thankful God continues to bless us with this miracle Blaise. We are praying that the CT provides answers and that there is not a clot! Thank you for our community of support and prayers- God continues to hear then! 

Ten years of appointments

Hard to believe we’ve been on this journey for ten years now. (When I was still pregnant.) By now most everything has changed. His cardiologist Dr danford retired. His surgeon Dr Hammel moved away. His nurse Jenny switched departments, a new hospital has been built. Blaise had his full blown cardiology appointment this morning at Children’s. Since he’s getting older, and we are getting further out from his Fontan surgery, his Cardiologist is now wanting to run more tests and check more things out. Things can start to arise as his modified heart works twice as hard. This could be leaky valves, blood pressure issues, arrhythmia and basically anything else. We are also starting to do blood work tests for heart function, liver enzymes to look for liver failure as that’s one of the most common complications for post-Fontan kids. We also added in wearing a 24- hour holter monitor last week and had his normal echo this morning. It’s been a lot if testing for a kid who hasn’t enjoyed it. He’s also at an age where he understands the depths of what all this means and how important good results are.

Blaise passed everything with flying colors today. All tests, blood work etc came back fine. For the first time he has a one year pass til his next visit. As I told the three doctors in his room today, the past ten year journey has been one that would have been impossible to wrap my head around ten years ago. The highs, lows, daily stress, unknowns. One thing through it all has been Gods incredible blessings He’s given Blaise. We thank God EVERY day. 

Thanks to our "community" for your continued prayers.

Heart month

It’s February 1st, which means it’s Heart Month! 1 in 100 babies are born with a heart defect. Blaise was born with Hypoplastic Right Heart Syndrome, often known as the most severe heart defect. After three open heart surgeries and three heart cath surgeries, Blaise will live his life with only a two (not four) chamber heart. Not a week goes by that I don’t see or hear about the death of another heart warrior. Our family continues to be in awe and so thankful to God for the life He’s provided Blaise. We hope his current heart will last him into his 30’s, and with the constant improvement of modern medicine, even longer. To my other heart mama friends who know what this life is like: you are the strongest moms I know, thank you for the constant support. To Blaise: you are a warrior in the truest form. I’m in amazement of how you live everyday, oblivious to the fact that you are any different. You are the one who reassures me daily that “I’m fine mom, I’m not hot, cold, puffy, blue, clammy, tired, short of breath......” 😂 You’ve also taken the last year in stride, and have heard more no’s then yeses than any kiddo should. I’m forever blessed beyond measure to be your mom. Thank you for the many, many prayers said for Blaise. God has been hearing them!

Home!

First, my apologies for not getting an update sooner!! The past few days have been a whirl-wind! Here’s the Wednesday post from noon on Facebook! We were discharged!! 

Blessed. Overwhelmed. We are on our way HOME! There are overachievers, and then there is Blaise. We could have never imagined how quickly and amazing Blaise would do. Our discharge papers list his oxygen saturation’s as 99- After living his life in the 80’s and 50-60 with exercise. 😭 We can’t thank you enough for the prayers- it’s what’s gotten us here!

"Lord! I’m bursting with joy over what you’ve done for me! My lips are full of perpetual praise. I’m boasting of you and all your works, so let all who are discouraged take heart. Join me, everyone! Let’s praise the Lord together. Let’s make him famous! Let’s make his name glorious to all. "

So, we got home around 1, picked up the other two kids and were hanging out enjoying our family time. We worked outside a bit pulling some weeds and headed inside around 4. Blaise went to lay on couch and as I covered him up, thought he felt warm. We were consistently getting temp readings between 99.5 and 100.5. Granted I totally get on a normal healthy kid this isn’t even a temp, but on a kid 7 days post-open heart surgery I got concerned. I made a phone call to the on-call cardio who said to monitor it and watch for changes in breathing, activity, etc. We ate supper and around 7, his temp was 102.6. I decided we probably should head to Omaha to have him checked out, so about six hours st home and we headed to the ER. Poor Blaise was hysterical freaking out not wanting to go back there, not sure what was going to happen. Sutton was so worried sobbing. My parents met us at Chikdrens and took the little two home. After a full rundown of more x Ray, blood work, urine sample, they decided his CRP level was elevated, which is basically the bodies inflammation, and they said not uncommon after his surgery. We finally made it home at midnight and still spent the first night in our beds. Thursday was the same fever running from 99.5-101. Mike went trucking to Illinois Thursday night leaving a very nervous me home with the kids. Friday morning was the same with Blaise’s fevers, so I thought I better make a call to cardio before the long weekend. They decided they better see us, so back down yesterday afternoon. Another X-ray, more blood work. The blood work shows his white blood cells trending down, so they don’t think an infection. His CRP level went up again from Wednesday night, but I guess not enough to be concerned. His potassium is a bit off. His X-ray showed even more "junk" on his left lung from even Wednesday night. Dr Hammel’s PA Hollie who saw us feels pretty convinced that what is showing up in the X-ray is not actually fluid but just junk. She thinks Blaise caught a virus while in the hospital causing the fevers and junk. We headed home, hoping this is true. He acts fine, breathing fine, his saturation’s are always 95 or better, appetite good. 

Today has been much the same with temps. Mike left at noon for West Virginia until Tuesday morning. Im hoping tomorrow is the day these fevers move on and I’m not so on edge!

We did get the chance to visit Papa and monna camping over at blue lake! We needed some relaxing time!

Status Quo

The past two days for Blaise have basically been status quo, which is exactly what we want them to be. Honestly, there's not a whole lot to update. Today, Blaise got the last two iv's out of his hands, is fully switched from iv meds to oral meds, took a bath last night and got the dressings removed from his drainage sites with just regular bandaids. He gained a few grams over night-yay! He had an EKG and an ECHO done today. His xray this morning looked clear again- Amen!! We are currently working on getting the right mix of meds to maintain the correct levels for Blaise. His sodium level is still low, so we are trying to get that to level off. The cardiologist's follow what they call the "Fontan Pathway" for all Fontan kids. Basically this instructs them everything on how to handle these kids. Right now the pathway wants Blaise on two strong diuretics to help keep his lungs free of fluid since that is the biggest complication post - Fontan. Amazingly (seriously, only God is to thank for this) Blaise has had hardly any drainage, so the diuretics are putting him on the "dry" side causing the lower sodium levels. 

Currently, Blaise is scheduled to go home on Lasix three times away as a diuretic, another diuretic I can't remember the name of twice a day, enalapril for blood pressure and an aspirin daily. A few of these he will be on for the rest of his life. 

His diet is incredibly strict, and the doctors and nutritionists have been in several times to go over it with us and make sure we feel comfortable going home on it. He is limited to 25 grams of fat per day total. To put in perspective: a fruit roll up has 4. Butter and oil are hereby eliminated from our house. We have to measure, weigh, and evaluate how much Blaise has eaten of what he's given to make sure he's within his limits. The reason for this diet is so that he doesn't start draining fluid, as fat causes this. 

I'd have to say that going into this we were told that the  minimum time they've seen kids be in the hospital was 10 days, the average maximum a month and to plan on two weeks. We were told a story tonight about a Fontan patient who was here three months draining not too long ago. To think of where Blaise is at is strictly a credit to God and the prayers said. 

Other highlights the last two days were working on physical and occupational therapy. This was started the first day after surgery and he gets a bit stronger each day. We are currently working on holding his shoulders back as he is hunched over compensating from his chest hurting. On Monday he spent nearly a half hour petting Sven, the famous therapy dog at Children's. He was approved to "leave the floor" which meant he could go down to the lobby atrium area, over to the Specialty Clinic Building where we can see the construction work better and outside on the patio. The movement was good for all of us!!