Tag Archives: Starship Hospital

An atheist finds his God.

Posted on by
14

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.

Another forced break.

Posted on by
12

Well, the time has come yet again for my son to go back into Starship for another major surgery (the fourth in five months). The mass in his chest is growing and has enveloped his left carotid artery as well as his phrenic nerve and assorted other blood-carrying vessels and nerve linkages. His left chest cavity has filled with fluid, putting pressure on his left lung and causing him pain. After many consultations the surgeons feel there is no other option but to try and excise the mass. That will involve a cardiac team as well as an internal medicine team, both led by senior surgeons. The surgery is scheduled for this upcoming Monday and will last a long time as it is a full open chest affair. Needless to say, my wife and I are anxious and, to be perfectly honest, scared. I have a sense of hope but also of foreboding.

We have not told our son about what is about to happen because he is already anxious and stressed out after hearing the bad news (that of needing another surgery) in early Feb. We have consulted with a senior Starship child psychologist and she agrees that waiting until Saturday morning is the best way to break the news. That way he will only have one sleepless night before we head to the hospital on Sunday afternoon (they need to do a lot of prep on him so we head to Starship the day before the surgery).

Basically this is a repeat of what the boy went through late last Sept., when the hard mass on his sternum was removed. But the more fibrous/gelatinous “tendrils” that have branched out along his upper left rib cage have continued to grow rather than ceased growing, much to the surgeon’s dismay. Again, this is a very rare and aggressive type of benign cyst–some of you may remember that it is a congenital multilocular thymic cyst that should have naturally atrophied when he was a toddler–so the surgeons are discovering things on the go, and so far they have not been good. The remaining mass must come out if my kid has any chance of a normal life.

There are all sort of side effects in play, but for the moment the plan is to try and resect the mass without damaging what it is clinging to. It is a complicated and risky process.

The irony is that my son is actually doing quite well at the moment, acting like a normal kid, running around and doing his best to be active. We believe that this is more a case of him trying to be tough in the hope that exercise and pain management will make the fluid pressure on his left lung go away (as was initially hoped last year). Alas that is not what has happened and his brave front notwithstanding, only surgery can help him. We admire his resolve and, to use that much abused term, resilience in the face of this adversity. He is strong and in some respects wise beyond his years, but it is the strength and wisdom of the battle scarred at a very young age.

Assuming that he makes it through the surgery and recovers, we are concerned about the psychological impact this will have on him. Let’s just say that, from being a kid who could get vaccinated and undergo blood tests without a whimper, he now does not like hospitals and is afraid of needles and drains (which are very painful when removed from his torso). I just hope that we can offer the support he needs to get his head right if and once this is over.

I have had some bad moments in my life but looking at the boy’s face when he was told the news that he would need another big surgery is one of the worst things that I have experienced. It was compounded by the lead surgeon’s look when he told us because it had a sense of hopelessness written all over it. He is a good and honest man, and he simply said that because of its rarity and complicated presentation, they are very much in the dark about how to proceed and are just doing what they think is best after extensive consultations with colleagues in NZ and abroad. Apparently this is a case that no-one wants.

All of which is to say that my mind is not on political blogging at the moment, or much anything else for that matter. So I will take a break from KP, focus my attention on my wife and child, and put my faith and trust in the staff at Starship. They have been excellent so far and understand what we are going through.

Please keep my boy in your thoughts. I will check back in when I can.

Seasons Greetings and a personal update.

Posted on by
15

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.

Shoutout to Starship.

Posted on by
7

My son returned home this week after spending two weeks at Starship undergoing major surgery. It was dicey for a while, as he had a lemon-sized tumor removed from his anterior sternum that was putting pressure on his heart and lungs and which had extended out onto his upper left rib cage. It turns out that he had a mediastinal multilocular thymic cyst, most likely congenital and therefore present since his birth. Normally they atrophy and are absorbed by the age of three, but in his case it apparently kept growing. He was asymptomatic until this past May, when he developed shoulder pain and shortness of breath. After several misdiagnoses and a change of GPs he was referred to Starship in late September, where chest X-rays showed a large mass. Things accelerated from there. It turns out that the shoulder pain was referred pain and common with chest tumors–but one has to know what to look for and the original GPs did not.

Multilocular thymic cysts are extremely rare but fortunately most often benign. There are more tests to be done and even the possibility of further surgery to remove remnants of the mass from his ribs, but the hope is that now that the large hard mass has been removed the rest will stop growing and wither or can respond to drug therapy or some other form of non-surgical intervention. What is amazing is that my son’s left lung had collapsed at some point in the past–maybe even a year ago–but he had continued to play soccer, ride his bike and run cross-country until his symptoms appeared in May. He finally had to stop sports in July while we looked for an answer.

In any event, he is on the mend even if not entirely out of the woods yet. The prognosis is good for the long-term. He is now pleased at his ability to breath and move about pain-free (other than from the chest and drain wounds), He thought that the shoulder pain was just from over-doing it on the monkey bars and that it was normal to be short of breath after exertion. And well one would be on both counts when operating on one lung and a compressed heart.

I wanted to use this post to publicly thanks the medical staff at Starship for saving his life and for the world-class quality of the attention that my son received, both during the surgeries (he had two), during four days in paediatric cardiac ICU and during the remainder of his time on the cardiac paediatric ward (he was there because of the open chest surgery, not his heart per se, because cardiac surgical teams are the best versed in matters of chest surgery recovery). Everything about Starship was first rate, especially the surgical care from the moment the mass was detected to the ongoing post-operative recovery here at home, where the team has called us to check on him and outline a schedule for follow-ups. Above their skills as surgeons, anaesthetists and paediatric nurses, what sets the Starship staff apart if their incredible level of compassion and empathy for their patients as well as their patient’s whanau. My son was on the upper end of the paediatric age group (ten) but the way in which the staff interacted with toddlers and newborns was, from my family and I could see, absolutely wonderful.

If there is an institution to which a charitable contribution can be made, I recommend Starship Hospital simply because it provides world class care and, among all the other worthy causes that can be supported, it is uniquely able to provide an actual physical future for those who otherwise would have none.