I hope that all of you kind KP readers have a wonderful holiday season and a productive and healthy New Year.
Unfortunately it looks like my family will be spending Xmas in Starship. My son’s chest very suddenly filled up with fluid in the space of a week and yesterday he had to have 2.5 hours of keyhole (laparoscopic) surgery in order to drain it They took out 800ml on the spot and another 200 or so since then. That is a lot of fluid pressure on his left lung.
Below are photos of his X-rays taken one week apart, with the right being taken 9 days ago and the one on the left taken 2 days ago before yesterday’s surgery. You can see why the surgeons decided to move quickly rather than wait until after the holidays
The surgeons were hoping to remove some of the fibrous mass from his ribs and other tissue that they think is causing the irritation that is producing the fluid (as a reaction), but it was too difficult and risky to do. That means that we could be back for more draining in a few months. We now have to start thinking about a long-term Plan B.
My son came through the surgery OK but is in a lot of pain because they seriously poked and probed inside of him with a camera while draining his chest in order to find a way to safely remove as much of the mass as possible. It was not meant to be. The mass has enveloped his upper left ribs and his phrenic nerve, which controls diaphragm breathing. The good news is that the nerve is working and the diaphragm is moving. The bad news is that if the nerve begins to be compromised then it may have to be severed and he will lose the diaphragmic breathing on his left side. it will not kill him but it will hinder his physical activity.
They had hoped that he could be released on Xmas Eve or Xmas Day for at least the day. But from the looks of things Xmas Eve is no longer an option for release since he has two drains in him and they are still draining, which means that Xmas Day is iffy at best as well. Starship is down to skeleton crews of dedicated staff, for which we are again grateful, but you can see the downsized capability in the wards. That makes it all the more difficult to get the boy up and out of there early, as most of the surgeons are on holiday leave and the rotating surgeons are reluctant to do anything more than exercise caution with patients who are not regularly under their care (which I support). My son’s surgeon actually broke away from his holiday to do the surgery and is reportedly coming by to see him today, so his dedication is admirable and my wife and I are extremely grateful for that. But he too has a family and could use some rest. So I tell the boy that this is another unique aspect of his early life. that is, how many people have had to spend the Xmas holidays in hospital (and been able to talk about it later)?
I worry about the kid’s psychological state because he has grown anxious and stressed over the pain that he is now fully aware is part of undergoing these procedures. He was in a bad way last night and needed a pain pump to cope. Since he is allergic to morphine–one of the lesser joys was to discover that his morphine allergy manifests as a full body intense itch–he has to take a mix of other opiates/non-opiates that provide “layered” pain relief. That overlap is hard to coordinate so there are gaps in his pain relief depending on the time of day, how active he is (such as sitting up, standing, trying to walk to the toilet down the hall), etc. Having some experience with pain myself (and also being allergic to morphine, but my symptoms are hallucinations), I liken his drain incisions to deep knife wounds. So think of him as a child who has been stabbed three times in this latest surgical round, on top of the full chest opening and drain procedures of exactly three months ago. Needless to say, that is a lot for any ten year old to have to experience. It takes a toll, physically and mentally.
My hope is that whenever he gets out he can resume normal life and that being active will help re-inflate his left lung (as was happening before the sudden fluid buildup, which may or may not be related to a chest cold that he caught at school). He has been stoic and staunch throughout but I can tell that this is wearing on his psyche and dampening his spirit. He is completely over the hospital experience and fears having to come back (which is very likely). But we can only do what is feasible given the mysterious nature of his rare condition (the surgeons still do not know what the underlying cause is even after extensive testing using CT and MRI technologies as well as every standard test under the sun). Although the tumor/cyst is benign, it grew undetected for a long time and is now deeply embedded/attached to him even though the removal of the main solid mass has stopped the growth. What remains is a fibrous tentacle-like growth spread over his upper left chest skeletal structure. That appears to be the source of his irritation but again, they surgeons are not completely sure. Hence the need to start think about a long term Plan B,
in any event I do not wish to burden you with a tale of woe but writing this is therapeutic for me. What I do know is that every time I walk into that ward and see the other families clustered around their precious but sick kids, I am thankful that my son’s condition is not worse than it is and for the empathy, compassion and dedication of the Starship medical staff. Let’s just hope that “Smokin” Shan Reti does not decide to take an axe to their funding as well.