Dusting this thing off

Well folks, here we are. I’m dusting off this ole blog as the time has come for the next step in Blaise’s heart journey. We’ve had six of the most remarkable, completely normal (as much as a half heart kid can be) years, with no medical concerns or complications. We are blessed. God for some reason, has shown us amazing grace, and a path so good, only He could have created it.

With that being said, our lives are about to completely change, specifically Blaise’s. For six years, we’ve gotten consistent reports at his six month cardio checkups. His echo images of his heart remain unchanged, his resting oxygen saturation’s haven’t dropped below 82. When I was originally diagnosed while pregnant with blaise, we were told to expect his third surgery around age two. Each year we’d go to his appointments, nervously waiting for them to tell us it was time for his third open heart surgery. Blaise defied the odds, making it to six without intervention. Traditionally, the Fontan surgery is performed in the summer months 1) to avoid the absolutely terrible and seriously life threatening flu season and 2) to avoid missing school. At our six month check up in March, it was decided that, while his basic reports were looking ok, we would do a stress test on Blaise to see where his oxygen saturation’s droppped to during exercize.

The 2^nd of May, Blaise did his stress test. He did a great job, we couldn’t be more proud. He was of course super nervous, but for being six years old and having no idea what they were doing to him, if it would hurt, or what to expect he did totally awesome. I could go on and on about how amazing this kid is. Immediately, his oxygen saturations dropped into the 50’s. To put that into perspective, a normal child with saturations in the 70’s is put on oxygen and admitted to the hospital icu. At 50, organ damage occurs. Blaise lives every day of his life in the 50’s. Just walking into school causes this. 

It was no surprise due to these numbers, the day after the test our cardio Dr. Danford called wanting to schedule a heart cath surgery. These numbers are too low to have. Blaise has had two of these before: at 1 day old and at 3 months old. It’s common practice to schedule a heart cath followed a few weeks later by the Fontan surgery. Blaise’s heart cath surgery is scheduled for Thursday, June 7^th at 8 a.m. at Children’s Omaha by Dr. Delaney who performed the first two. Deep breaths. It’s hard to even type that, hard to wrap our mind around putting Blaise through a potentially life-ending procedure when he “seems” perfectly normal to all of us. Super important information: we are NOT telling Blaise about any of this yet. He has literally no clue as we do NOT talk about it in front of him. PLEASE, if you run into one of us or Blaise don’t bring it up. We will tell him a day or two beforehand, because as we all know a six year old does not need to spend a month worrying and stressing and getting worked up over what is aboout to happen. 

Our current step one is to get through the heart cath. In comparison to his Fontan procedure, a heart cath should be a walk in the park. The risks and unknowns still remain and are in fact even more risky with someone with only half a heart. The goal of the heart cath is to use a microscopic camera and tool to get a better view of his heart then what we are seeing on the echo, and also measure the various pressures in his heart including the pressure between his heart and lungs. The current prayer request we have is that upon review of his heart cath the doctors, cardiologists and surgeons are able to decide that his heart is a candidate to receive the Fontan open heart procedure, which is what will prolong his life. If he is not a candidate, our only other option is heart transplant, which will be devastating. 

For the heart cath, the will enter his body through either his neck or groin to gain access to his heart. The heart cath procedure will last approx. 2 hours if no other interventions are needed (i.e. ballooning, stenting, coiling off collaterals etc). If he comes off intubation and anesthesia easily, he will need to lie still for two hours if neck access or 6 hours of groin access. Ideally, he would come home the same night. 

After review of the heart cath, we are pretty much 80% sure they will do the Fontan in July if he is a candidate.  We will not know their decision until a week after his cath, or a date of his Fontan surgery until that point either.  We are focusing on just the heart cath for now (or at least I, Erin, am). I’d be a complete basket case if I was focused on his Fontan surgery for the next two months. And, let’s be honest, I’m gonna need a dose of versed myself to get through these surgeries. 

I’ll post a bit about the Fontan Surgery, but will do more when we know it’s “official”.  Blaise was born without the right two chambers of his heart. Normal people have four.  This surgery is a palliative surgery, meaning it will not “fix” his heart but instead re-plumb it for blood to flow without needing four chambers. His heart will never be normal or fixed. This surgery will divert the blood from the interior vena cava and the superior vena cava to the pulmonary arteries without passing through the non-existent right ventricles. After completion, the blood most flow to the lungs without actually being pumped. There are several short-term complications, but the long-term ones are the scary ones. These include chylothorax (a type of pleural effusion), protein losing enteropathy (liver disease/fibrosis) and plastic bronchitis (branching casts of the airways). It is due to these common and deadly complications that Dr. Danford has chosen to wait so long before performing the Fontan surgery. Ideally, it would have been amazing to wait even longer to have this surgery. We will focus on what we hope is a positive successful surgery that will make Blaise feel better in the long-run. For his Fontan surgery, the will be cutting his chest and sternum open again for the third time. Hopefully the scar tissue is not too much to get through. We anticipate a minimum three week hospital stay. One of us will stay in the room with him, while we will also have a room at the Rainbow house. Sutton and Holten will be shuffled between grandparents and their sitter (second mom) Jessie. Hopefully we are not in the hospital for months, and Blaise will be able to start school in August. We are thankful that Erin has accumulated some days off work to use. Michael will truck as he can. 

We most definitely wish we didn’t have to ask for prayers, but we know from previous experience that prayers move mountains, and in Blaise’s case, have been so beneficial. We thank you all from the bottom of our hearts for the words of encouragement and thoughtful gestures. We appreciate it more than you know! Blaise has made quite a few friends and won over quite a few hearts in his six years!

On another note- if you plan on seeing us leading up to the surgeries, please make sure you are illness-free. We will also be using lots of sanitizer, etc.