Good news, this morning, from the biopsy results. The nodule (bon-bon) in my neck is not cancer. Not sure what made it swell up, but going to treat with steroids and antibiotics and watch.
Meanwhile, I’ve got another day or so at least with NG tube feeding. I think the plan still is to switch to a smaller inner cannula on my trach tube so that I can breath/cough/swallow around it and return to normal eating. Will need to be evaluated, first, but since I had relatively minor (as long as I could cough) aspiration issues, I’m pretty hopeful that that plan can carry through.
They did move me back off of the ICU floor. At 2 AM. Ugh. So, I got maybe 2 hours sleep last night. Don’t come to the hospital for a good rest, you won’t get it. I suspect I’ll do a little less work and a little (lot) more napping, today.
At last we were able to get the NG tube down into my stomach. It seems that the changes to my larynx pushed everything back a bit, so the tube was trying to go into my lungs, instead of my stomach. Finally, after twisting and turning, we found that if I looked down and to the left, the tube had a straight shot to my stomach, so there it went.
Now, I’m getting a very slow drip of something that looks like (but probably isn’t) chocolate milk. They want to start slow to be sure I tolerate it OK. I’m ready for them to crank it up to 11, or to at least make 2 faster.
They were about to move me back to the 6th floor (out of ICU) but then decided that since I had a new trach I’d add too much load to the floor…so stuck up here a bit longer. They did agree to unplug me from most of the monitors, so at least I can move around the room a bit better (just have to drag my feed bag and IV bag around wherever I go). I’m really ready to go to 6. The room is bigger and laid out better for an ambulatory patient. This room is not tiny, but is cramping my style, a bit. Plus, I have to stay in this ugly orange gown (orange means I’m a fall risk, but everyone up here has agreed to ignore that, since I’m not really a fall risk). Down on 6 I can switch to a blue gown (but actually, I just put on my street clothes).
Anyway, still waiting for biopsy results. I’m guessing I’ll be here for the weekend, but hoping they surprise me with an early parole.
But, no hamburger today. They tried to put in the NG (naso-gastric) feeding tube. First time, the nurse tried, but after getting past the painful back of my nose and just past my gag point, it both hung up and caused something to start blocking air through my trach tube…so we yanked it out.
Tried a second time with one of the Dr’s. I actually did most of the work, as I could feel when to push, could rest for a moment when I needed to, and could control the speed. Got everything past my nose, into my throat, past the gag reflex, but then the tubing just bunched up without pushing the tube any further. I think whatever is causing the tightness in my esophagus that contributes to the swallow issue is hanging up the end of the tube.
So, no blended hamburger (or whatever they put into the NG food bag) for me, tonight. It has now been about 40 hours since I have had any nutrition at all. I am beyond hungry. I could definitely use some calories. But, next attempt at NG tube will be by the ENT team tomorrow morning.
I’m still up in ICU, simply because there are no rooms down in the non-critical area. Other than the NG tube drama, I’ve been an easy patient for this floor. I get up and down on my own, something that most on this floor cannot do. I’ve never hit the call button. Don’t need bathroom help. Just need to get this feeding situation fixed and I’ll be good for the rest of my stay.
Well, combination of lots of things happening and boredom puts me back into a more-frequent posting mode. After 2 posts in 3 months, now I’m headed toward multiple posts per day. For a while, anyway.
Before the trach tube went in, I had a moderate swallowing problem. I could eat and drink anything I wanted, but the last little bit (maybe a tablespoon) would not go down…it would stay up around my epiglottis. I could cough it forward before it got too deep into my trachea, so I didn’t really aspirate much of anything.
That hasn’t entirely changed except…with the current trach tube in, I can’t get enough air up into my mouth to do that “cough it forward” action, so that last little bit goes way too far down into my windpipe, making me cough and presenting a danger of aspiration pneumonia. Until that changes, I can’t eat or drink anything.
What needs to change is to have the tube in my neck (cannula) reduced in diameter to allow for full air flow around it so I can make a normal cough, again. But, I have to leave the current configuration in place for 3-5 days, so stuck with IV fluids until then and they will probably put in an NG (naso-gastro) tube (down the nose, into the stomach) to feed me. That is not the hamburger news I was wanting to hear.
Unless something else changes, though, the medium-term swallowing/breathing news isn’t that bad. Once they put in the smaller cannula, I’ll then just cap it off, so I’ll be back to nearly normal breathing and have the ability to uncap if I do have a crisis that closes my airway, but otherwise breath normally. That will cut down a lot on the maintenance and yuk of the trach tube (when the tube is just open for breathing, I tend to also have a lot of mucousy drool dribble out of it).
Still waiting to hear back on the biopsy, so no real feel for a new long-term treatment plan, yet.
So, I’m stuck here at least until this weekend or early next week (they won’t discharge me until they make the cannula adjustment). I will almost certainly move from ICU back to a regular room, today. I’m walking around the room on my own (to the limits of my monitor cords), sitting in the chair, working on work stuff, practicing my guitar a bit. ICU is real overkill for my condition (one nurse, two patients).
And, you’re probably stuck with a couple of updates a day for a while, at least until I’m less bored or things settle down.
Well, I’m back to having my old nemesis, the trach tube. Really out of an abundance of caution until they determine what they can do about the bon-bon. Airway issues can escalate quickly and dramatically and emergency trachs are much more dramatic than planned, surgical ones. No more drama, please.
I’ll have to stay here for 3 days, at least. Probably means going home on Saturday, depending on whether any other followup procedure is established by then.
Now, the local anesthetics are wearing off, and I’m ready for a Vicodin. Looking forward to a hefty meal of Jello and applesauce. If that goes down well, tomorrow I’ll be able to resume a regular diet. Unless someone sneaks me a Whopper, no onions, first.
The surgeon came through this morning and sketched a plan. He is going to go in and look at things, take some samples for biopsy, and more than likely put a trach tube back in. I really, really, don’t like that tube, but if it is that or no airway…I guess I’ll take the air.
After that, I’ll stick around for another day or so while the trach tube stabilizes and they get the biopsy results back and decide what to do, next. Could be leave it alone and send me home. Could be take it all out (by all, I mean the entire voice box). Probably don’t need to say which way I’d like for it to go.
Well, today I find myself back in an unfortunately familiar environment. Room 649 at UT Southwestern Clements. On Friday, my stridor had gotten to the point where I could breath OK (with back pressure) if I looked straight ahead or down, but if I looked up, my airway quickly disappeared. This lead some of my detractors to immediately advise me to “keep my chin up.” Well, I can do that until I pass out, but then my head will naturally drop, reopening my airway at which point I’d come to. In any case, I rated this as a significant change that warranted having a professional look at, so drove over to the UTSW ER and got into the queue for an exam room. The waiting area was pretty full, but was still able to get into exam in about an hour. I think it might be my frequent-flyer miles I’ve racked up over the past two years.
The ENT on-call team came down and assessed and recommended that I be admitted and put on IV steroids and antibiotics. They also order a neck CT scan. That was at 5:30 pm. So, at 10:45 pm, I finally make it to my room (to be fair, I had guessed that it would be midnight before I got there, so they beat my estimate by over an hour). Got my first round of meds, then was told that CT would call and have me brought down. At Midnight, I got tired of waiting, so went ahead and went to sleep. Other than a couple of wake-ups for meds and vitals, no other interruptions.
At around 6:30 AM, they woke me up to let me know that CT transport was on the way. So, they trundled me down to the imaging room, took some pictures, then trundled me back up to my room. Not knowing whether I’d have a procedure, today, the doctors had put me on no-food-by-mouth (NPO) after midnight, Friday, so I couldn’t order breakfast. Around 8:30 AM, the ENT team came up and looked at my scans. They noted that the mass that was in my neck just above my larynx last year (that was deemed non-cancerous) was still there and was bigger. It is actually a hollow, fluid-filled shell. I’ve decided it is a bon-bon. Or, maybe a Lindor Chocolate. In any event, they want to biopsy, then decide what to do next. That could be any of at least:
Send me home with steroids.
Drain and/or otherwise surgically reduce the mass.
Tracheotomy (complete removal of trachea).
If it is a tumor, revived, then possible radiation and/or back to harder chemo.
So, my visit could end on Monday, or maybe mid-week, or maybe I’ll be here several weeks and then restricted to home for a couple of months. Some of those options could also include the re-insertion of a PEG (gastric feeding tube) and/or a trach tube, two things I really had hoped I’d seen the last of.
Meanwhile, the steroids/antibiotics have improved the stridor. I can look up (is that where the phrase “things are looking up” comes from?) and get air, although it is still much more restricted than not looking up. The doctors also removed my NPO status so that I could order food…but then forgot to actually mark my chart. At 9:30am I got tired of waiting so went down to the food court and bought some breakfast. This got sorted out by lunch-time, and now I’m awaiting my crispy fish dinner from nutrition services
So, that is the update, for now. Pretty much everything is up in the air, but since it makes it difficult to breath when I look up in the air, all I can do is look ahead and keep on trucking as well as I am able.
Well, long time, no update, shame on me. But, there hasn’t been much positive to report, and the negative hasn’t been that negative…didn’t want to sound like I was just indulging in a pity party, but here goes. (Oh, and for a better pity party, check out the below.)
We had high hopes that after the glottic web surgery and a bit of recovery my voice would start coming back. Well, that hasn’t happened. Instead, my voice remains virtually nothing, but my swallowing issues have gotten much worse. Prior to the surgery, I had a little issue with aspirating water occasionally, but no other swallowing issues. Now, I can’t eat or drink anything without some aspiration. And, whatever I eat or drink, I can’t swallow the last little bit. I have to rinse it down…and I can’t swallow the last little bit of whatever I used to rinse it down. And, I even have problems aspirating my own spit. And, all this aspiration results in a lot of coughing. Annoys me, my co-workers, and the cat.
The swallowing issues have caused me to resume a gradual weight loss. Well, that might also be because in my annual physical we found my A1C to be a little high, so I’ve cut out most sugars…which were a pretty easy source of calories. Not dire, but I’d much rather have my weight be headed up slowly.
And, last week I started feeling a little back-pressure when breathing (stridor). I don’t feel like I can’t get air…I can just tell that something is causing my airway to be a bit more closed than normal.
So, I reported all this to my SLP (Speech-Language Pathologist) yesterday and she decided we’d better take a look with a scope (goes down the nose and into the throat). After a pretty quick look, she wanted a doctor to take a look, so recruited one from the clinic. What they were seeing was either:
Lesion (as from some infection or post-radiation necrosis)
Return of the beast (tumor)
What they could not see was my vocal cords. They’ve either gone away entirely or are masked by swelling. The SLP seemed to be leaning toward gone away entirely, probably due to necrosis (i.e. the tissue died). But, can’t be definitive without a deeper look. So, their recommendation was that I get a throat biopsy ASAP. I’m scheduled to see that doctor next Wednesday.
Meanwhile, I’ve not really felt bad. I’ve been going to work every day, and even have two business trips planned over the next 6 weeks (one to Louisville, KY and another to San Diego, then a personal trip to Nashville planned for June). Weather has been yucky, but I’ve started thinking I might start running, again, once this spate of rain passes. Of course, now all of that is up in the air, pending the results of the biopsy.
So, nothing to do but wait, practice my guitar, and try not to annoy the cat too much.
Ok, a couple of updates to start out the new year. First my New Year’s Resolution: 4K.
On the gallbladder front, the Interventional Radiologist shot some dye into the tube sticking out of my side and saw on x-ray that my bile ducts are draining just fine, and that there are no visible gallstones. So, he yanked the tube out. I had booked a room nearby so I would not have to tie someone up for 10 hours on the off chance that I might need a ride…and in the end I didn’t need the ride. No sedation, just a steady pull.
About 2 minutes after he pulled out the tube, though, I started getting some pretty bad pain in my right shoulder. This same thing happened after the procedure when they put the tube in, but I was partially sedated. At the time I attributed it to the awkward position I was in during that procedure. But, this procedure I was flat on my back the entire time. I told the doctor about it immediately…he said it was normal. The nerve bundle going to my gallbladder includes shoulder nerves. So, for a week or so, any time I coughed or did anything else to irritate where the tube had been, both my side and my shoulder hurt. I suppose there could have been much worse places for shadow pain to appear…
A followup with the surgeon who would remove my gallbladder were my gallbladder to need removing and he agreed that there is no reason to take it out. Of course this still leaves open the question of what is causing the steatorrhea.
Upper GI with small bowel imaging showed nothing abnormal. Was really hoping that they’d find something so that there would be something to fix. But, the search must continue. For now, I am taking some pancreatic enzyme supplements on the chance that the issue is related to pancreatic dysfunction. A couple of weeks into that, though, with no change or improvement…I don’t think that is it.
On the voice front, I’m still sans voice. ENT doctor scoped my throat and said that there was still a lot of swelling. As it goes down, voice function should improve. Come back in a month. Meanwhile, the throat irritation keeps me coughing a lot, which probably keeps it irritated and swollen. So, maybe someday I’ll do more than croak out my thoughts verbally. Or maybe I’ll be stuck in this mode, forever. After over 1.5 years of not being able to speak effectively, it has gotten really old. You’d think you’d get used to it. Well, I suppose I have become used to it, but that doesn’t mean I have grown to like it. I am so ready for some improvement here.
Otherwise, I’m feeling fine. Been playing with a new toy (drone) a bit. Getting ready to go to Las Vegas to work our suite at the Consumer Electronics show this week where I’ll announce a major new product in my category. And, I’m not practicing guitar as much as I should, but I have a goal to step up the pace, there, after I get back from Vegas. A friend of mine teaches guitar and will barter lessons for some of my video skills (or I’ll just pay him outright…either way is fine with me).
So, that is how 2019 is starting. Not terrible, but not nearly perfect. Hoping the year gets just a little better as it progresses. But whatever it is will be what it is, and I’ll deal with it as it comes. I can wish for a lot of things, but in the end, reality is what we all have to deal with. Our fantasies (of better health, different politicians, better stock performance, or winning the lottery) might entertain or inspire, but living in fantasy world is not sanity.
Ok, a couple of years ago I asked everyone to stop giving me presents for Christmas and birthdays. Seriously, if I want something, I pretty much buy it if I can afford it…and if I can’t afford it, then it is surely more than anyone should spend for me on a present. Instead, give money to a charity of your choice while thinking of me. In exchange, my gift to you is similarly a donation to charity. The first year (2016), I selected the North Texas Food Bank. 2017 found my donation (and those from many of my friends and family) going to the American Cancer Society.
I’ve decided that my gift to you this year is…that I’m still here. Wait, what! Just kidding. I just donated a square, a circle, a triangle, and a dodecahedron amount to the Ronald McDonald House Charities (https://www.rmhc.org/) North Texas chapter. The RMHC provides housing and support for families who have children going through serious medical situations so that the family can be near the facility providing for their medical care.
Nearly 20 years ago I went to a B’nai B’rith charity dinner where the keynote related a story that I’ve heard several times, since, but still find worth repeating.
A man is walking along the shore where a freak tide has washed tens of thousands of starfish up onto the beach where they will all surely perish. As he walked along, he would stoop down and pick up one starfish after the other and throw them far out into the water. Someone watching this walked up to him and said, “Why are you bothering? There are so many, the few you are throwing back into the water won’t make any difference.” The man reached down, picked up another starfish and threw it out into the depths. “To that one, I made a difference.”
So, toss a few coins in a bucket this weekend while thinking of me, and make a difference.