You can read part one here.
If you’ve had a child have surgery before, you know that moment when you hand them to the anesthesiologist and put your trust in them is difficult. I gave Apollo a kiss, and we walked to the waiting room. Once he was taken back, it was not as bad as I anticipated. I knew Apollo had to have the repair done and I knew people across the world were praying for him and thinking of him. We felt every one of those prayers in the peace that surrounded us. Chuck and I ate lunch in the waiting room. We talked. We tried to read (though neither of us made much progress in our books). At 2:30 we were told they had just made the incision. Yes, it took an hour and a half to intubate him, put the block in, position him, etc….
At 4:00 exactly the surgeon came out to talk to us. She told us everything went just fine. She was able to separate the arch and cut the ligamentum. I asked how much improvement there was in his airway and esophagus and she said, “It did open up, but I can only see one side”. Of course…funny, I am so used to seeing diagrams and models, I somehow pictured them being able to have a 360 degree view…anyway, he did have fluid in his chest so they had to put in a chest tube but he was able to be extubated in the OR.
Since he was going directly to the cardiac ICU we got to see him before he was awake. Apollo was lying on his right side. He had a chest tube under his incision (held in place by a couple of stitches), an arterial line in his right hand, an IV in one foot, a pulse ox monitor on the other foot and wires all over his chest.
Chuck is reading the numbers on his monitors.
Chuck spent hours in this chair holding Apollo’s hand as he slept. He hadn’t woke up from the anesthesia yet, so these were the last “peaceful” moments we’d see in a long time.
The photo on the left was my view while I sat on the sleeper couch and Chuck held Apollo’s hand.
That first night can only be described as, I’m sorry, hell. Apollo was in so much pain he was practically crawling of his skin. They gave him a morphine drip, which didn’t manage the pain. So they gave him more morphine. Then Ativan (to calm him) then something I forgot the name of but it was similar to ibuprofen but much stronger. Then more morphine, more Ativan, more of the other drug and so on…his breathing was very, very labored. His chest was heaving as he retracted. He had air trapped in his subcutia and it looked like he had a trap door on his side flapping open and closed. When he cried his heart rate shot up and his oxygen level dropped. They would give him more drugs and he would sleep for a bit, then he would rouse and cry and the cycle would start over again. His surgeon told us she didn’t think the block had worked very well.
Apollo’s first words out of surgery were, “don’t do that” to a nurse. Then he asked for Enoch. Then to go to “Donald’s House” and finally, to go see Simon. He was desperate to leave.
In the morning I was able to try nursing him. This required the nurse and Chuck assisting to get him out of the crib. We lay him on his right side (since the incision was on the left), but that’s where the arterial line was, so it was painful. Like I said, his chest was covered with wires and both feet hooked up. When we finally got him into position he latched on…then cried with pain because his throat was sore from being intubated. Eventually he fell asleep and I held him like that for several hours.
At one point Apollo woke up crying for Enoch. We propped up the photo book I had made and he lay there holding Chuck’s hand and gazing at the photo. It was sweet and heart wrenching at the same time.
Apollo fluctuated between napping and periods of being awake throughout the day. At one point a dietitian came in asking me why I hadn’t fed him yet…Umm, really? Because nobody suggested I feed him or brought me any food…
Chuck feeding Apollo. Morning rounds.
Eventually they brought Apollo some food and he ate: a popsicle, jello (a first for him), scrambled eggs and some waffle. He also drank some apple juice. He didn’t choke once. I can’t remember the last time he’s eaten without choking on his food!
We had another long, horrible night that I’d rather not remember…crying, pain, more and more medicine…
In the morning we put some clothes on him so he would feel a bit more normal and a bit less vulnerable. Apollo’s chest tube and arterial line came out Friday morning. His stomach look fat here, but is actually distended from air and from poo (he hadn’t gone since Monday).
This photos are what I call: too much oxycodone and too little sleep.
By Friday, the only thing they were doing was managing pain, since he was able to control it with oral meds, the decision was made to send us home!
While waiting around my friends Sarah and Hilary came for a visit. Sarah had a child with a clinic visit that day, so Hilary hitched a ride so they could see us.
One finally check by Apollo’s cardiologist, and he was free to go.
We headed back to the Ronald McDonald House to clean it and pay our bill, and let Apollo play for a bit. We gave him one final dose of pain meds and he slept all the way home.