Fontan surgery set

Edit- Blaise knows Nothing about anything below. He really has no idea anything is wrong with him. If you see us please don’t say anything in front of him. Mike and I will tell him when the time is right!

Well, the past three weeks have been a roller coaster since Blaise’s cath. I wanted to wait to do an update when we officially knew what was going on. I’ll play catch up for a second. After Blaise’s heart cath on that Thursday, the next Monday afternoon I got a call from Dr. Danfords nurse informing us the Drs has gotten to his case at heart conference that morning andvoted to proceeds with the Fontan, however she indicated that Blaise’s heart is unique beyond even regular half-heart kids because he has unique coronary arteries, making his heart coronary artery dependent and the Fontan surgery riskier then what is traditional. She said I’d be getting a call later that week to schedule a surgery date. By Friday, I had not heard anything, so I called back and spoke with Kristy, Dr Hammel, the surgeons scheduler, to ask why I hadn’t been contacted. She informed me that Dr Hammel hadn’t been at the heart conference meeting when they discussed Blaise and wanted to review Blaise’s files himself with a fine tooth comb. Well, ok, I thought. But, the nerves and anxiousness grew knowing Blaise was now riskier, and Dr Hammel wanting to do a further evaluation before making a decision. Almost two weeks passed without ANY word. I was beginning to be convinced Blaise may be headed down the transplant path and not surgery path because they didn’t think he’d survive it. We squeezed in a quick family vacation knowing we’d have to cancel our others trying not to think of the what-ifs in the back of our minds (what if this is the last etc)After another phone call last Friday to Children’s, and being informed I’d have to wait til Monday to talk to Kristy, stresses were all time high. Monday, Kristy called me back saying Dr Hammel could meet with us the next day, yesterday- Tuesday. Michael and I made the trip to Omaha- mike of course not worried and myself actually holding it together pretty well despite knowing our entire world was possibly about to turn upside down. Not knowing if Dr Hammel would lay out a complete loom and doom story on Blaise or not. I’m reminded daily that our challenges are our challenges, and no different then challenges every single other person deals with. Illness, death, cancer, sudden deaths are being dealt with every day, and if and when God chooses us to walk one of these paths- there is nothing we can personally do to change it. We can pray. We share Blaise’s story on here mainly to ask for prayers and to share the Goodness of God that He’s provided us. In fact, I’m feeling a bit more apprehensive and shy about “opening our book” up to so many and our vulnerable ness, however I truly think Blaise is a special kid with special reasonings to be here on Earth- so I’m hoping he inspires some. We also love our communities and their tremendous support!!!

So, back to our meeting. Right off the bat, Kristy indicated that she would be back in after meeting with Dr.Hammel to discuss possible dates. To me- a sigh of relief that they must be thinking Fontan not transplant. Dr. Hammel came in and met with us for over an hour. Honestly, I know A LOT about hearts and Blaise’s but I can’t even begin to explain when he explained to us because so much of it’s over our heads. These doctors are geniuses. Dr Hammel started out by explaining the structure of Blaise’s heart to us again. In laymen’s terms- zero structure on the right side of his heart- no chambers, ventricles, working valves etc. this eliminates him from being able to do three different types of procedures then he can with some kids. He explained the transplant path- providing data and facts all along. He’s “healthy” enough now to be listed very low on transplant list, meaning he may not get heart in time. Of transplanted hearts half survivethe first year. Of those, less then another half make it ten. Complications to other organs etc etc. He explained why Blaise can’t live like he’s currently living any longer- his saturation’s are in the 50’s when moving. With his saturation’s being so low his body is making more red blood cells to try and compensate and provide his body with more oxygen. This makes his blood very thick, which could create clots and cause him to have a stroke at any time. He explained the Fontan route. Basically a surgery that is temporary to improve his blood oxygen saturation’s. Currently blood in Blaise leaves his heart oxygen rich, is pumped to his brain where it looses oxygen, then onto his lungs and back to his heart. It flows (not pumped I believe) from his heart to his legs and extremities and back to his heart. After fontan the blood is pumped to his extremities, so almost a reverse of what it’s doing now. (Our hearts are nothing like this). Over time his liver and small intestine will develop chirosis of the liver due to recieving oxygen poor blood and many fontan patients end up needing a liver transplant even before a heart one.

So, specific complications for Blaise are this. He has these odd coronary arteries. (I may be saying the open,close part opposite of what it is because it’s all too much to remember). On a normal kids pulmonary artery both the left and right ends are opened up, meaning surgery is good. On Blaise his coronary arteries have caused the pulmonary artery to be closed on one end and opened on the other. If both were closed, he’d have to be listed for transplant. He called Blaise case “moderate”. (In my mind I’m thinking, please Lord let that him being a way of telling me better then severe). I asked if he had operated on a kid like Blaise before and he said yes. I did not ask the outcome, because also in my mind I’m assuming if the out come was tragic, Dr Hammel wouldn’t want to try that path again, right? Also, Blaise will be completely cut open and put on the bypass life support machine. He will not fully drain blaise’s Heart of blood because those pesky coronary arteries need that blood or his heart will fail.

Other notes:  He told us the biggest risk with the coronary arteries for Blaise is passing away from massive heart attack at anytime.  I think he said greatest risk was in the first year of his life, so he thought it could be a positive he’s made it this long. He also said he made it through the first two surgeries with them so we will take that as a positive too. Not often do they have kids do a stress test before the Fontan like Blaise so the have lots of extra data to look at which was helpful. He said Blaise had three positives going for him going into surgery one being heart pressures looking wonderful (I can’t remeber the other two). I believe I counted a minimum of four times where Dr Hammel told us this surgery will fail Blaise at some time in his life. It is not a cure, fix or solution. He 100% expects it to fail on every kid who has received this surgery. He indicated it will but time, many advances are currently being made on artificial heart pumps or transplant down the road. I’ve seen (look at me being optimistic!) many individuals in their 20’s and 30’s with a fontan leading normal lives online and even a couple in person.

They came in and gave us about 8 dates in July to choose from for surgery. The earliest being the 11th. The minimum amount of time in the hospital is two weeks. Often kids stay for over a month due to chyle leaks in their chest drains. Mike and I are figuring out today if we do surgery before the Burt county fair (July 19-24) or after. I realize for any other family this wouldn’t matter but the fair is blsise’s life. He talks about the fair 365 days a year. If we wait til after, he most likely won’t start school on time Aug 15........ big decisions and precious fleeting moments with our boy are flying by us so quickly right now.

Thank you for the prayers, and I’m amazed if you made it to the end !!!!! Ha!