Gearing up for the Fontan
So here we are, 4 short days before Evan finds himself in the operating room once again. It’s hard to believe that nearly 2 years has passed since he was an inpatient at U of M. It feels like it was such a short time ago. I am not ready, I will never be ready.
We have had a wonderful summer full of smiles, playing, parks, fishing, learning, zoos, and growing. He has made a lot of progress with eating and even more with his speech. He’s speaking in short sentences and his vocabulary is growing every day. I was out of town for 2.5 weeks for work and when I returned it was like he was a whole new kid with his speech. In fact, he’s going to “graduate” from speech therapy tomorrow! I’m so proud of this kid.
Something else happened when I came home from this trip… Previously, I would come home and when he saw me, it was like any other day even though he hadn’t seen me for a week or two. This time I came home to a wonderful surprise. He saw me, “dadda!” and ran over to me with open arms, I picked him up and he gave me a great big hug and put his head down in my neck. When I tried to put him down, he clutched me tighter…that boy melted my heart.
The plan for the coming days and weeks…
Tuesday Sept 9th – Pre-op appointments at U of M. An assessment of his health to make sure he’s healthy enough for surgery and probably an echo-cardiogram of his heart.
Wednesday Sept 10th – Heart catheterization and admission to the hospital. They will put a catheter into his blood vessels (probably in his groin) and push it into his heart. They will look at the condition of his heart, its valves, the pressures in the chambers, etc. This will give the surgeon a really good idea what she will have to work with when she gets in there.
Thursday Sept 11th – Evan is scheduled as first case which means that they will come to his room and get him in the morning, generally before 8AM, and prep him for surgery. The surgery is normally a half-day procedure but with Evan’s history and the scar tissue that’s present, Dr. Romano has booked the OR for the entire day. This surgery does require that his heart will be stopped. They will put him on a bypass machine that will pump his blood for him, perform the operation, remove him from bypass, and restart his heart.
Below is a short 2.5 minute video from the Children’s Hospital of Philadelphia that describes the surgery that Evan will be having.
At around the 2 minute mark the doctor describes a situation where fluid builds up around the heart and lungs. Some of this is normal after surgery and it’s mostly this phenomenon that will dictate how long Evan is in the hospital. He will have chest tubes and be taking medicine (diuretics) to drain this fluid from his chest. Once his body stops creating the fluid from the trauma of surgery and it has left his body he will be one step closer to going home. Other milestones that will need to be met… he will need to be tolerating his feedings, his post-op echo and x-rays need to look good, and his pacemaker will need to be interrogated to make sure that it’s working correctly after the surgery. We’re hoping that he will come home after two weeks but the hospital says that it could be as many as six. Once he comes home he is not allowed to return to daycare for 2 weeks to limit his exposure to anything that would cause an infection while he’s still very vulnerable. We can’t pick him up under his arms for at least 6 weeks after surgery to make sure that his sternum and ribs have time to heal and harden.
We’ll be making more frequent updates to the website over the coming days to keep you all informed on what is happening with little Evan. Thank you in advance for your continued love, support, and prayers.
Here are some pictures of him enjoying his summer.
