Given the intensity of the last few days I thought that I would share what I wrote on a personal page because of the kindness displayed by family and friends, including KP readers. It basically summarises the core of the experience. Here it is:

When it comes to my son, for this atheist there is a god and it is plural. God is two teams of human surgeons working in tandem to save his life from a slow death. The saints are a staff of nurses and clinicians who do the before and after surgery work. It is very early days yet–it is less than 48 hours since he entered the operating theater–but if not a full miracle it has been a revelation of sorts.

The surgery took 6 hours, and then it took 2 hours to slowly wake him up given what transpired. The surgery was a mix of keyhole and open chest (sternotomy, for those into the lexicon). They drained him first using the keyholes while looking at the mass in real time through the telescopic micro-camera before opening him up. They went through the original scar, which was tough because there was scar tissue and metal to work through. They excised the bulk of the mass via resection (“debulking” is the term), then focused on the phrenic nerve. The cystic mass came off the nerve and they do not believe that it is damaged, although it will take time to tell whether it is intact or will regain function. But he is breathing from his diaphragm so the outlook is positive even if it takes a few months to confirm.They also found that the mass was moving to the upper right side of his chest so that was removed as well.

They then proceeded to the carotid artery. They found that it was easier to remove the enveloping mass than they expected. Think of an arm warmer being slowly unwrapped. As before (after the first surgery), his heart was not compromised by the mass. The overall outcome is to my mind astounding–complete removal of the cystic mass with only the possibility of microscopic bits left. This is way beyond our hopes.

The down side is that they scraped and cut more extensively than during the first surgery, so the kid is in agonising pain when the painkillers are wearing off. They have him on a cocktail of things normally associated with junkies because he is allergic to morphine (the cheapest and crudest painkiller), which causes him an excruciating full body itch (it turns out the entire class of opioids that morphine is part of is allergic to him). So they are working on mixes that also have a sedative effect, as he has developed a full-on phobia about tubes and drains regardless of whether they are being placed or pulled. Since we can see the vital signs monitor readings on screens connected to the cables attached to his six monitor points (electrodes connected via adhesive plastics), we can see that his heart rate, blood pressure and breathing spike at the very thought that someone is going to “mess” (his words) with the tubes.

Worse than that is hearing his cries of pain when they actually do it. The experience of hearing his cries is both blood curdling and agonising because although his phobia is mental the pain is real, even if it is just the pulling of a tape holding one of his tubes. He now has 3 big ones to go. And to be clear: this is a boy who has a very high tolerance for pain and who is steadfast and resolute when dealing with adversity. He is not a snowflake of any sort. But we also have a sense of perspective, because his are not the only cries we hear in the ward, and they are not just from children.

The best news is that when compared to his first big surgery he is in far better shape and recovering much faster. They have removed 3 tubes including the catheter (a major negative event) and he has now gotten off the bed and sat in chair twice as well as used the bathroom in a normal way. Those are major milestones that he did not achieve until a week after the first surgery and now it is just a day and a half since he got out of theater. All of his vitals are good except when he freaks out, so he has been moved from ICU to an observation room and should be sent to the general heart ward if things continue along the same trajectory. If that is the case he may, in fact, be discharged earlier than expected.

They are working on a protocol to sedate him when they take out the last big drains, which should happen in 2 days. The psychologists and pain relief people are very much involved at this point, even as the surgical teams take a step back now that the most their work is done.

The boy has a few lacerations on his left lung where it adhered to his inner chest wall when deflated, and it is leaking air, but the consensus is that the leaks will seal in the next days and weeks. The lung deflated before the first surgery and did so again before this one, so it was good that they got in before further damage was done. They cannot be sure how much it will re-inflate but the fact that he was doing deep breathing right out of the operating room is a very good sign the the phrenic nerve is working and the leaks are not major.

Anyway, we are much relieved and thankful for the surgical skills displayed by the cardio-thorax and internal medicine teams working together. It is amazing what people can do when working towards a common goal, especially at a global moment when all appears to be just the opposite.

Thanks to all of you who have offered support and empathy for what we are going through. He is not out of the woods yet and there’s a long road ahead to being whole again, but to completely jump the shark on this mix of metaphors, there is light at the end of the tunnel that leads to my son’s future.