Provisions

(Feb. 18, 2015)

We get to the waiting room, check in, receive our buzzer for updates and sit down. It’s a long room with several people. People with a kid that has already had surgery, people with a kid in CVICU (cardiovascular intensive care unit), people with a kid on the recovery floor. There’s a RMH room with snacks, showers and lockers attached. Snacks, because it’s hard to eat when you don’t know the outcome of an uncertain and terrifying situation and showers because of the many nights and days families spend at the hospital waiting to see if their child will live or die. These are the stark realities of the CVICU and CHDs (congenital heart defects). Nothing is certain, and nothing is promised. I will become more familiar with these norms in the hours and days to come.

The minutes seem like hours and the hours like days. Time is slow and there isn’t a single thing I can do to make it pass. We know it will be an all day procedure and we don’t expect to even be able to see our boy until the evening…or later. Fraser’s words are swimming in my head– “If I can talk myself into it, I’ll do the switch.”

Both sets of our parents are there but they keep their distance. If you know me, I’m not a talker in these types of situations, and I certainly couldn’t handle someone else’s emotions–or hugs.

Fraser’s nurse practitioner, Mrs. Nancy, comes with updates every few hours. The first update comes. He is sedated and they are beginning to open his chest, split his sternum and observe his tiny beating heart.

About an hour or so later we are buzzed for an update again. Fraser is doing the switch. Case’s VSD was in a bad position for the other two options and his pulmonary artery was measuring not 3mm, not 5mm but 7mm wide. I will come to find out that the doctors, they can not explain this. They are in awe of my warrior boy and his brave heart. They tell me it’s a miracle, I tell them it was Jesus.

The rest of the day seems to be a blur. Waiting, updates, bypass, coffee, updates, pumping, updates, still on bypass, more coffee. At 8 hours in his VSD is repaired and the muscle blocking his pulmonary artery and valve is resected–something that could not be seen on the echo. His pulmonary, small and underdeveloped, only because it was being blocked and unable to grow. That bit alone also weighs Fraser’s decision to do the switch. Fraser is working on the coronaries. The big vessels come next.

We wait. At 5 or 6pm we get the update that he’s coming off bypass, a task his 8 pound body did not handle well. Around 8pm Fraser comes to talk to us. He is pleased with the surgery. It was long, and we won’t know the long term outcome, but the goal was to get Case to his first birthday, hopefully more. There is uncertainty about his new aorta, but like I said before, we were running out of options, and this was the best case scenario so we are all relieved. Case is closed up and in the CVICU, but we can not see him yet, he is sick and the team needs time getting him stable.

A bit later we are met by a doctor, one I haven’t seen or met. She’s not from cardiology (red flag). We still haven’t seen Case yet and it’s after 9pm. 12 hours in the OR and more getting stable–we are nervous wrecks (probably an understatement). This doctor is from the renal failure team. Case’s kidneys are not working and many of his other organs are having trouble waking up from being on bypass so long. His life, put on hold with minimal blood flow, and his body having trouble catching up. He is stable though and they let us see him.

We ride up the elevator with the MD we just met. She takes us to his room. There are several doctors waiting to tell us about our boy. There are machines, tubes and wires everywhere. Case had been on the vent before, but this time, it takes me by surprise. The machines, they are keeping him alive. My eye catches a screen, one I have seen often. I find his oxygen saturation numbers and for the first time it is a steady 100. I cry. This is the first glimpse at the hope of a normal childhood for my warrior boy. Those stats–A huge victory in the CHD world. A victory matched with 20 more challenges. The doctors tell us that these things happen, kidney failure, slow recovery, and that the next 24 hours are critical. They also tell us that the human body is resilient, and they are right. We can’t stay in the CVICU so after talking to the doctors, meeting his nurse and feeling secure enough, we go back to RMH. This is the first night we sleep. Only for a few hours, but we sleep.

A surgery we thought not to be possible was, a pulmonary artery 4mm bigger than expected, and our warrior boy made it through a 12 hour operation. It’s a short night and long day ahead but there is peace. So much peace. There is trust. So much trust. And there are mercies. Mercies that are new every morning. Provision making, heart exposing, rescuing mercies–mercies that picked up our mess from 1000 pieces, in our deepest, darkest struggles, when we were laying on the floor, collapsed, screaming out to Jesus, these are the mercies that ever so gently put us back together.

If you’d like to read my previous post in Case’s story, click here.

[originally posted 2/11/2017]

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