A normal post-surgery day at MGH. I wrote and sent out a status update yesterday. At 7:30, the medical team came by. They are familiar with my case but are not following in detail. It seems that I’m no longer interesting. I was a bit chilly but slept until 8:40 when the nurse came by to give me meds, after which I slept deeply until 9:15 when two Patient Care Assistants (PCAs) got me cleaned up and out of bed and into the recliner.
SLC stopped by to change the dressing on the right leg and install the brace.
The decision on rehab is pending, but our first choice of Whittier was turned down because of lack of beds. So I’m to go to Encompass Framingham. As of the time of writing it’s showing on the BCBS as pending June 23-29. The leg pain is pretty bad. I think it got a bit better overnight when I called for pain meds. Meghan stopped by with 30 mg oral morphine. It’ll take some time to kick in. I’ve not had hallucinations since switching. It’s hard to say if it’s more or less effective than oxycodone since the pain is in the ball of the foot on the right leg, and I still don’t have the ability to distinguish touch down there. It is worrisome. We’ll see what Encompass will do with it.
MGH appears well run, which is not to say that there are times when I have been dissatisfied. Above all, of course, is the need to ensure safety of the patients and freedom from obstacles to that purpose. The parts of the organization that I come into direct contact with are the nursing staff, the facilities in the ward, and the people that maintain those facilities. There are also the doctoring teams, and at the top, the superstar specialists and surgeons. In some ways, running a hospital must be like managing a sports team, a rock star, or an airline. They all have a clientele that is willing to repeatedly spend a lot of money to receive their services, and they must maintain their reputation for excellence. It costs a lot of money to maintain these services and reputation. The bottom line, however, must be that safety is essential, while the budget for safety and the financial benefit is impossible to measure. Back to the nursing team then, I am somewhat surprised that, unlike most major hospitals in the Boston area, MGH does not have a nurse’s union and it appears that management actively discourages it. An entry in Wikipedia reads as follows:
The vast majority of MGH’s thousands of registered nurses are not represented by a union. While sister hospitals in the Mass General Brigham (MGB) systems […] have nurses represented by the Massachusetts Nursing Authority, MGH nurses have historically voted against unionization.”
The entry goes on to notes that 88% of physicians voted in 2025 to unionize, but that Nurse Practitioner and Physicians Assistants are predominantly non-unionized. Reading some additional articles it seems that the board fears reputational loss, which in turn lessens the ability to attract top-rated staff, and overall loss of management control – both of which I understand. What I do miss, however, is the apparent lack of specialized training and a reliance on on-the-job training. This latter method, although essential part of training, carries the risk of instilling sub-optimal practices simply because they are easier to use. It also encourages the acceptance of work-arounds leaving the obstacles in place. For example, the nurses frequently complain about the new suction pumps used with the Jackson-Pratt bulb drains that pull liquids from the site of the surgery. In my case, I have two bulbs and sets of tubing that work with a single suction pump. The new pumps apparently have more features than the old pumps, but they set off alarms multiple times a day. The alarm is particularly discordant, and seems to have based on the sound made by a vuvuzela. This is obviously an annoyance to the patient, but it is also a distraction to the nurses who may be engaged in other tasks requiring their concentration.
It seems that the pumps were introduced using a train-the-trainer. Nurses also do not have any channels for expressing their frustration with the device. I was also disappointed when I mentioned the applicability of safety management systems in healthcare to Nick, my nurse for the day. He had never heard of the work of Jim Reason in this area. This was a change from my experience as a cancer patient at Brighham and Women’s 20 years ago. There, the physician team and nursing team did know about him, and his work developing the famous swiss-cheese model. Pushing further, I asked him if he had read anything by fellow Bostonian, Atul Gawande. Nick just asked if he was born here? (He wasn’t. He was born in Brooklyn, NY). Bottom line, I think that I would like nurses to recognize their calling and the role that they play in healthcare. As I’ve said many times since I’ve been here, I’d like the person asking about “where does it hurt?” and “what’s my pain level?” to actually have experienced pain themselves.
I’ve been reading up on my surgeon, Santiago Lozano-Calderon. SLC as I’ve referred to him here, or ‘Santy’ as members of his team call him. I see that the orthopaedic oncology area in which he works incudes the evaluation and treatment of primary benign and malignant tumors of bone and soft tissue, as well as metastatic bone disease. It’s an area where we don’t have all the answers and difficult to make precise diagnoses. It is eminently reasonable, that six weeks after my first appointment with him, I still don’t have a diagnosis.
Some confusion this morning. My mouth was very dry. As I write this two hours later I’m still confused. My eyes drift in and out of focus making it hard to read and type, and words move on the page. Random auditory hallucinations. I open my eyes and what I see doesn’t match my mental images. Items are the same but in different places. My mind decides that there is some task I need to do with the device I’m holding and I open my eyes and I’m not holding anything. I don’t feel warm or anything like that, I’m not agitated, I’m just confused. I call for the nurse (I find that if I have more than one thing, then its best to say something like “Good morning: I need two things: <pause>” And then number them, otherwise the operator will just cut me off after the first request. Also, it helps me remember why I called the nurse in the first place. It didn’t make any difference this time though, after I asked the operator for a fresh pitcher of water, either she failed to pass on the message or the nurse forgot it. It was good to get her in here though, because one of the things I’d asked for were the “Dude Wipes” by the window, and as I was using them I realized that I’d shat myself, so we had to go over the routine of rolling to one side, wipe wipe wipe, pull out the potty pad, put the scrunched up edge of a new one under my back, roll back over to the other side, wipe wipe wipe, pull out and flatten the scrunched up potty pad, and roll back. The nurse, Emma, is very long suffering. I can’t imagine Mo doing this without complaint.
The nurse this morning was Nick. He came in around 8 am to give me my meds. Pain level 4 so we agreed I could reduce the oxycodone dosage. Went to get pills – came back – put pills in a cup and handed the cup to me. The only problem was that he gave me an empty cup. This is a classic slip. It turned out that after having measured the pills he threw the cup away. The nurse’s vigilance suffers from rushing and the patient must provide a line of defense against inadvertent mistakes. When I told Nick that he hadn’t given me the pills he swore that he had. I held my ground and eventually he looked in the trash he saw what he had done. He had to go get another nurse to sign on to him reissuing the medication.
Busy day. Moved from bed to recliner around 9:15, where I stayed most of the day.
Yesterday, a medical tech (Mark?) stopped by to fit a metal brace to the right leg so that they have an approximate fitting for the fight leg when they remove the wraps. They didn’t say when that would be.
Maureen and Miranda came in a bit earlier. I expected them around 12:30 but they got here at 11:30. Nick, the nurse, said they were going to get me down for an ultrasound in the morning, but noon came and went and they said couldn’t do it, but would push for the next day. In the event, they actually came at 4 pm just as Maureen and Miranda were leaving. I don’t expect they’ll see anything as it’s the right leg that is a concern for blood clots, and they can’t check for that because of the bandages. I expect they’ll do that another day.
I turned the TV on shortly before noon and figured out that the hospital remote would take a 2.5 mm audio cable to connect it to the Bose headphones. It was a good move and a great match for the US versus Australia which they won 2-nil. Later I watched Scotland vs. Morocco. Midfielder Ismael Saibari scored lightening goal 1 minute 40 seconds after the kick-off to leaving the score 1:nil at half-time. Morocco was the better side – they have a definite height advantage and some of the players are very fast on their feet. It was then that they took me down for the ultrasound so I didn’t see the second half, but even at that time, given the mediocre performance of the Scots in in their previous match, I was doubtful if they could turn it around or even squeak a draw. And so it was. It was the final minutes before I made it back into the ward (50+ minutes later. 3 minutes for the procedure two floors down in the same building, 47+ minutes waiting time!)
I’m still getting hallucinations when I close my eyes, both auditory, and presence. This latter type of hallucination is when you fell that one or more people are in the room with you. I will try cutting down the oxycodone to 15 mg and keep it there for tonight. If it goes ok I’ll try cutting it down a further 5 mg.
When they got home, Maureen and Miranda facetimed me so that I could walk them through setting up the trellis for the indeterminate tomatoes. It worked out pretty well I think. The tomatoes look well established and have grown a lot. Miranda gave me a video tour of the rest of the garden.
Remove cover from brassicas and spray with BT to protect from cabbage moth.
Fertilize onions and garlic.
Keep cutting out garlic scapes.
Examine and pinch out peppers
Chelsea chop the Rosinweed (Silphinium integrifolium) and New England Aster (Symphotrichum novae-angliae). Remove ⅓ to ½ above leaf node.
Fertilize eggplant and tomatoes. (NOT peppers)
General thoughts: Today was a good day. I’ve been here since last Thursday and of course there’s fatigue with it all and wishing I was able to go home, but I must admit that there’s a certain enjoyment that I get from being cossetted in this way. Today though, I also got enjoyment from the walk through the garden, seeing it thriving despite my absence and the brutal drought. For all this, of course I must thank Maureen, and also Miranda for supporting her. I can never repay them.
It was an eventful day health-wise, both physically and mentally. PT came early and I got out of bed into the recliner. It was easier than last time. Later in the day I had two bowel movements sitting on the commode. It’s a much better angle than sitting on a bedpan.
The medical team stopped by in the morning and they tested the sensation in the toes of my right foot. I really don’t have any in the right foot, which I ascribe to peripheral neuropathy. I sometimes get total loss of sensation in my fingers that goes away after I massage them, but regardless they want to do an ultrasound to check for possible blood clots in my thigh and calf. They’ll try to fit that in for tomorrow.
Sharon, SLC’s Nurse Practitioner, stopped by to change the dressing on my left leg. It’s been a while since I had the surgery, and the incision seems to be healing nicely. Also, a tech, (Michael?) stopped by with a leg brace that he fitted to the left leg. I’ll actually be wearing it on the right leg, but because that’s still covered in bandages he can’t do it directly.
All through the day, when I close my eyes I’m quickly transported elsewhere. Most of the time I’m surrounded by people looking down at me. It’s not consistent though. In one instance there are two techs in the room working on fixing a pump or something. Both 30s or so, a tall white guy and a short stocky black guy chatting to each other. I don’t recognize either of them. In another instance it was a woman sitting in what looked like a pink macrame sling. That third eye is really working overtime! On some occasions I open my eyes and I’m still in my room but the perspective has changed. I may be on the ceiling looking down on my room, or my field of view has changed – some things that are closer than they usually are, and other things further away. It’s not scary or anything, it’s just that everything has changed.
My one-armed room-mate was discharged today. I never saw him or talked with him through the curtain that separates our beds. They wheeled in someone who sounded lie he was heavily sedated. I found out later that he’s a young black guy who has some stomach issues. His name is Lavon and his mother has been staying with him. He’s not allowed to eat or drink anything and is on a drip. I talked to him one time when I my call light was out of reach.
Kathy and Dave stopped by in the morning. Kathy already had an appointment with a specialist who is managing her breathing problems with a procedure. It’s called balloon sinuplasty and may need to be repeated every year. Maureen and Miranda stopped by later. The room is pretty small and it was hard to find a place for everyone to sit. The Oura ring came yesterday and she’s now wearing it. It’ll take a few days of tracking before the data will have anything to say.
There’s a dumpy grumpy nursing assistant who comes in several times a day. I think she’s from Haiti or maybe Jamaica. She tidies things up, throws out the trash on the bedside table, helps a nurse change bed linen, and things like that. She’s always muttering under her breath about things that don’t meet her expectations. One time when Maureen and Miranda were here, Miranda, who had just stepped out came back into the room, she suddenly became all sweetness and light. Another time when she and the nurse were organizing the loops of the bed-swing to lift me out of the recliner back to the bed, she and the nurse were chatting with each other like mother and daughter – I asked them if they were, but no.
A couple of times today they gave me a morphine shot for the pain. It kicked in right away and I can see why you might get addicted. It has a totally different hallucinating effect than dilaudid or oxycodone. It was really nice and peaceful. It’s only a temporary measure though and they’ll stick with 20 mg of oxycodone – every 6 hours I think.
Asking the regular nursing staff to sign the card. Some of the ones who’ve signed it are:
Georgia (drew blood)
Payton (night nurse)
Molly (RN)
Meghan (nursing assistant)
I’m listening to a lot of music this time, compared with 20 years ago when I was in for cancer. Last time, in 2005/6 I discovered the Afrocelt Sound System. Right now I’ve just woken up and discovered I was listening to “Spring Frost” by Brian and Roger Eno. (Roger is Brian’s younger brother). I’d bought Ambient 1 on a whim shortly after it was released in 1979, but it really didn’t fit my mood at the time, and seeing that it was on vinyl I have nor been listening to it. They say that some music is better on vinyl, but I think this is a case when streaming is a superior option. It’s hard to ignore the music if you have to engage your brain in taking the record out of its sleeve, putting it on the platter, and setting the arm in place. Eno’s Ambient 1: Music for Airports came out either at the right time, or perhaps a little ahead of it. It originated the genre which has been taken up by many composers such as Hans Richter. I also used to listen to Stomu Yamashta who, although predating Eno, has incorporated the style as well. The music provides just enough form for the mind to follow, but by being ignorable helps the mind drift off to sleep. I’m using Apple Music (including Apple Classical) as they have a great catalog. I don’t like the design of the app as my fat fingers find it hard to bring up the search bar, and the ability to filter and sort is poor.
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