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.
Our thoughts are with you and your family, Paul.
I have spent time in Starship with both children and grandchildren, so know how dedicated they are.
2024 can’t come soon enough, or is that a threat rather than a promise of better things to come:)
Very sorry to hear about your son. Hope he makes a good recovery and you can enjoy the festive season as a family. Good wishes, Barbara Matthews
Much love to the family from far away USA. As my first grandchild turns 7 weeks old in a few hours, I am back in “new mother” mode and continual worry about his young life. Our precious children can be so fragile and it pains me to know the 3 of you are going through this. As you said, his pain is not only physical but also psychological. I know your love and support is giving him strength and it sounds like the medical staff is very dedicated.
May you all have a blessed Christmas.
Hang in there Paul – as I know you will.
Thank you for you and yours for being there in presence and spirit.
xoxoxox
We are thinking of you, Enda and your family through these challenges and sending our good thoughts for success and good recovery from the procedures, Chip
we hope to see all of you in Tucson! Donna & Gary
Paul:
Be strong. I know how hard it is to watch a child suffer. I will pray for you and your family.
Dear Paul, very concerned to read this. I take positive encouragement from your closing comments and trust he will pull through, with time and good care. It is the worst possible time to be in hospital for a child, with a child, if you celebrate Christmas (not everyone does of course). Take heart, be strong, kia kaha – it is the best possible place for him. It may take time to overcome this thing. Do not think of the worst case scenario … Be strong for him. Look for the peace at this time too, the summer solstice. Take some walks on the beach. Rest easy. Do you have extended family who can be with you, I hope so. Supportive friends.
Patience, peace, our thoughts and prayers, always, to you and your family, your son. Take care.
Dear Paul & family, my heart is broken for you all with this news – especially at this time. I’ll be thinking of you all, especially your dear son, over this period and hoping & praying a long-term diagnosis & solution for a cure is found soon.
I reflect on my own son’s time in hospital in Oxford having surgery for cancer whilst in his 20s and remembering how we did not know what his future would be. He is now 53 & has his own family. I wondered at the time if I could ever look back & know this and I am very hopeful and confident that you will too. One thing our health system still does amazingly well (due to the wonderful people who work in it) is to do the very best for people in their time of need. I hope this will be your experience too.
Wishing all of you the very best possible outcome.
Di Trower
Hope there is good news about your son, all the best to you and your family.
Thanks everyone, for your kind expressions if support. It means the world to my family and I to know that people care enough about a kid in distress to offer a shoulder of comfort to lean on.
There have been some dramas the last couple of days but today, Xmas Day, the last drain was removed and his pain began to subside once that happened. The process itself is very unpleasant but is a lesson in having to suffer for greater good. His chest is now clear of fluid and he should be able to get back to normal immediately. Unless something negative happens he will be discharged tomorrow. We did a mini-Xmas present giving in his room this AM with his cousins, aunt and my in-laws, but will save the main gift-giving until tomorrow. My Kiwi family is good that way–they postponed major celebrating until he could join them.
The medical team still have yet to find a way to stop the fluid build up other than to push an exercise-based life style that will help re-inflate his left lung. In the meantime they are looking for non-surgical solutions, so the story of my son’s illness is not over yet. I told the main surgeon that he better get a medical journal article out of what they now are saying is a 10-milion to one case.
In any event, we are hopeful that his body will heal and that he gets back to being the cheerful kid that he was before all of this began. On to 2024!
Thats so good to know Paul. Hallelujah, I am brought to say – seems appropriate!
I could say more – but just so pleased.
Kia kaha, be strong, rest easy.
And take care.
Blessings always :-)
Hello Paul,
Thanks for the update with this better news of your son. I hope a long-term positive solution is found soon and pleased that exercise is part of that. I’m sure it will help your son both physically and psychologically.
Hope you all have a very happy delayed Christmas celebration and a much needed rest afterwards.
Very best wishes to you all,
Di Trower
That’s really rough. I want to add that I’m very moved to hear about it, thanks for sharing. Heartfelt wishes towards your family‘s well-being.
Thanks Genevieve.
We are putting our faith in the Starship surgeons and the kid’s personal strength.