Hard.

Today was H-A-R-D! And there’s no way to spin it otherwise. Today confirmed all of my fears of what this surgery will do to Apollo emotionally and mentally. This great WARRIOR, disguised as a petite boy, had to deal with way too much today and he regressed behaviorally to cope with it all.

We started the day with all smiles but they quickly turned downward once we arrived at the pre-op clinic. I’m nearly certain Apollo doesn’t have the mixed emotions that I do while at the hospital. This building where everyday miracles occur provides hope and a future for the sickest of children and I’m forever grateful that Apollo’s life was saved here in June. But to him, it’s a scary place where he is given ouchies and not too much more. Although we played in front of the interactive jumbotron for quite awhile, enjoyed some treats, and watched our fish friends in the aquarium, the trauma of being shuffled here to there and back again, poked and prodded, hooked up to many wires, and scanned several times, left all the fun in their shadows. We played and played with every spare minute given to us just to keep his mind busy as it easily wanders and worries about the pain he will endure.

We took a shuttle to the hospital since it’s crazy cold here. Even the locals (aka our Uber drivers, ha!) are surprised. Apollo started right away at 7:30am with a chest X-ray, vitals, EKG, Echo, lung scan, and appointments with a cardio NP, cardiac anesthesiology PA, and of course, our beloved Dr. Marx with his PA, Ann. They were thrilled to see Apollo doing so well (despite his manic behavior). They couldn’t believe how well his images and heart function look. Dr. Marx explained that he is still a single ventricle patient and will never qualify for the bi-vent surgery like Magnus. That was no surprise to hear even though he carefully chose his words and approached the discussion cautiously and gently. We’ve accepted Apollo’s prognosis and however long God has decided we have him to love and cherish him. 

So the story is that during the heart cath tomorrow, they may dilate his left PA after they are in and have consulted with Dr. Emani. He is the captain of the team and calls all of the shots. If he thinks it’s necessary, it shall be done. He will also let the cath team know if he’d like them to coil some of Apollo’s large collaterals which weren’t touched in June. We won’t know what will be done until I get an update call once he is in the lab. As long as his PA pressures and resistance are low, and his left PA has grown to an adequate size, they will go ahead with the Glenn! Dr. Marx said he would be quite surprised if Apollo doesn’t qualify which was music to my ears and an answer to many prayers!!

After being gone for 7 hours, we returned with great exhaustion and both fell asleep minutes after our heads hit the pillows. Daddy may have to sleep on the twin bed in our room when he comes since Apollo has returned to being my Boston sleep buddy. He’s such a good snuggler and I’m soaking in the sweet moments of silence as he morphs into a leach on my body. 

We woke up nearly 3 hours later and headed to Target for a few essentials - ya know, the real essentials like more dinosaurs and a plush lion for lil man and the entire junk food aisle for me! Ok ok, we had some fresh produce in there as well. 

We are also here with another family from St. Louis whose baby daughter will be receiving the 1st stage of the bi-vent repair. They were told this couldn’t be done in St. Louis so I ask that you pray for this sweet warrior princess! Boston can do what others cannot and that’s exactly why we come here. We’ve quickly connected with several families here at the patient house and I’m so thankful for our empathetic conversations. Apollo found a little friend and instantly gave the little boy one of his Thomas trains without hesitation. These are treasured and among his prized possessions which were gifted by both his Grammy and a dear friend (Shannon, he’s obsessed with the case!). Apollo’s generosity is second to none and I couldn’t be more proud.

We’re all snuggled in bed after another hour long bath of fun. See his dinosaur families? They always have a family! As so will he for forever and ever!

As I reflect on our hard day, I can’t help but keep thinking about the fear in my son’s eyes. Many hurtful words and actions were his only defense as he felt completely helpless and at the mercy of the medical professionals who did what they needed to do at his expense. I can let go of what happened and pray my baby can as well. Adoption is so hard. Medical care for really sick children is so hard. And trying to cope with both is overwhelmingly hard. But he will face it head on with his mama always by his side, no matter what! Please dear Lord, comfort your son tomorrow and ease his mind which is full of fears as he enters into another round of this longstanding battle with CHD.