I would feel remiss if the last thing I had to say about using a syringe and catheter was the struggle I wrote about in my first week of recovery - 10 days ago! So, in this post I’ll share a few things I learned that helped me manage the process of eating and medicating myself with the syringe-and-catheter set up. As always, I’m hopeful that any patient recovering from surgery like mine will find it helpful information. I’m going to address this blog post directly to those readers.
I’m thankful to Lorraine for her creativity, patience, and comfort in helping me through this aspect of my recovery. One of the hardest parts! I also want to give lots of credit for some basic foundational knowledge to Jonathan (JonPaul70 on YouTube), whose videos about eating with a syringe-catheter setup were fundamental and even inspirational. As Jonathan says, you don’t have to starve. There are many options for food out there that you can make work through a syringe. (And this man had to experience that for four+ teeth-wired-shut weeks, while I was cut free at 9 days…)
I think Jonathan’s eating-demonstration and “don’t starve” videos cover most of what I would say here about food. Even though it’s not that important, I’ll include another tip from Jonathan just to make sure you get it: to keep the plunger moving easily in the syringe, coat the edges of its rubber stopper with olive oil. A big thank you to Jonathan -- You can see that thousands of people have watched his videos, and have probably been helped as I have.
What I didn’t see Jonathan address in his videos was taking medications through the syringe, and this is the area that I struggled with the most. These are the medications and amounts I was taking:
Sudafed (children’s) – 10 mil
Oxycodone – 10 mil
Durosill – 10 mil
Amoxicillin – 10 mil
Ibuprofen – 30 mil
These varied in their noxiousness. The Amoxicillin wasn’t too bad for me, and neither was the Oxycodone. For the others, taking them in was never easy. Most mornings and evenings I had 4 medications to take at one time (keeping Oxycodone and Ibuprofen offset from one another). I always began with the ones that were the worst to take – Durosill and Ibuprofen especially. That way, it got easier as I worked through the list. Also, I would always alternate medicine and other drinks: 10 mil medicine, 60 mils good juice, 10 mils other medicine, 60 mils other comforting liquid, etc. That helped me calm down in between doses.
For the first few days, I was squirting the medications undiluted straight to the back of my mouth and into my throat. I’m pretty sure they touched the “bitter” taste buds on the way, oh yes. Since I was bypassing my tongue (running the catheter along the side of the rubber-banded-shut teeth), it couldn’t help by performing its function of regulating the amount of liquid coming down. And, wanting to get it over with, I sometimes (often) squirted more in at a time than I should have. I sometimes kept the medicine coming, to “finish the dose”, when I wasn’t dealing well with what I already had in my throat, and really just needed to take a break for a few seconds. I found many times that 3 mil of medication – not a lot of liquid – was plenty to choke me if I wasn’t ready for it. At the worst times, the liquid coming in fast got down into my larynx and trachea and triggered a strong and painful cough, and I sprayed out medication on anything nearby. Miserable.
Regularly a little bit of medication would get into my larynx, and depending on what it was, burn there. I was deeply concerned about some kind of damage to my vocal cords. I didn’t have any information about whether liquid medications sitting on the vocal cords can do damage, and I still don’t. I’ll hope to learn more about that in the future, but from an abstract (not experiential!) point of view. But in the meantime, it was certainly painful.
If the first 3 mils of a 10-mil dose of Durosill (perhaps the worst of my medicines) were already causing me pain and discomfort, it was certainly hard pressing the plunger to deliver the remaining 7 mils. I’d usually deliver 3 mils at a time, very slowly, so 10 mils would take three or four times of gathering courage, taking the breath in, and gasping and lunging (can’t think of a better word) to take the medication in again. 30 mils of ibuprofen took an eternity, and I wasn’t displaying a lot of patience. Recipe for problems! And, sometimes the plunger wouldn’t move smoothly and would jerk forward accidentally, shooting in an extra several mils of medicine. That usually was upsetting and painful. (Reminder: OLIVE OIL on plunger helps keep it moving smoothly.)
This remained the state of things through several cycles of medicine-taking in the first few days of my recovery. I had the intention of applying some Alexander Technique to the process, finding some means whereby I could better take in the medication in a controlled and thoughtful way. But I couldn’t rise above my response to the sensations and emotions aroused by the medications, and remained stuck in the patterns as described above. It wasn’t getting better or easier.
Finally Lorraine realized that we could mix the medications with some other liquid (juice, smoothie) to make them easier to get down. (The food and medications are all mixed together down there in the stomach, after all - as long as they can be taken with food.) Once we thought of that, we started experimenting with different liquids to add. I found that a 3-1 mix, like 30 mils of something tasty with 10 mils of medication, seemed to dilute the Sudafed so that it wasn’t hard to take anymore. Docusill still wasn’t great even at a 5-1 mix, but it wasn’t painful anymore, just nasty.
Ibuprofen didn’t benefit from mixing much, since at 30 mils there was only room in the 60-mil syringe for a 1-1 mix. Still, 60 mils of a somewhat less bitter mix was still somewhat better than 30 mils of straight Ibuprofen. I’m sure if I was still taking it I would have continued to experiment with different combinations, and perhaps I would have found something that more successfully masked it. Thankfully my run of Ibuprofen ended some time ago, so I didn’t have to keep at it.
I encourage anyone trying out this “mixing” idea to experiment and try different things. I found that one of my favorite staples, Bolthouse Farms “Berry Boost”, helped mask the Sudafed (kids’ “grape” flavor, yum! Not). By contrast, apple juice combined with Docusill just made a much larger nasty drink, and likewise for a citrus-y drink combined with Ibuprofen. I settled on Bolthouse Farms “Stone Fruits” to combine with Ibuprofen, but it wasn’t great and I’d look farther afield now, if I still needed to. (I might never want to drink that flavor again, now.) You might be able to think ahead about what sorts of qualities the medicine has, and what sorts of qualities in the juice that might balance that well: for example, astringent mixed with creamy.
Tip: When you combine the medicine and other drink, make sure you shake them up (carefully) together. In the photo you may be able to see that there are two purple colors in the syringe. One is the grape-flavored Sudafed, and the other is the Berry Boost smoothie – not mixed together, about 10 mils each this time. (Though it seems like the two liquids would combine when you draw in first one then the other into the syringe, it is an interesting function of hydrodynamics that they don’t, but stay separate, one liquid being sucked through the other.) If I had taken this as it was, I would have gotten a big surprise of several mils of straight medication, which would not have been pleasant. So, make sure to visually confirm that the medicine and the juice are mixed well.
In the photo you’ll also notice I have a glass standing by of another drink. An innocuous Chocolate Protein Shake, a staple for me, is ready along with another syringe-catheter setup for when I’ve taken the medication and need to follow it with something comforting.
Tip: For cleaning, vodka makes an excellent disinfectant. Somewhere Lorraine picked up a method to clean the syringe, plunger, and catheter: Mix a couple ounces of vodka with a cup+ of water. Draw in the vodka-water mix into the syringe, and squirt it out. Do this 2-3 times. Repeat with straight water 2-3 times. Done! (Vodka is also helpful when squirted into the armpits of smelly costumes, by the way.)
At one point while struggling with all of this, I realized that I had not had any coaching on medicating with a syringe/catheter setup from any medical person. At first I was indignant at what seemed an oversight. But I realized that while I was in the ICU, I was on three IVs and constantly had medication and fluids coming in. So, there was no need to take any medications, and no opportunity to try taking additional medicine through a syringe-catheter. I’m not sure that a test run with something like water would have been to the purpose, as the issue with the medicine is dealing with its noxious qualities. And, with Lorraine’s help and as the staff looked on, I did a lot of eating via syringe on my last day, so they knew I was competent at that.
I’m not sure what the answer is with this. I think more could be done to prepare patients before or just after surgery for this upcoming reality, but I’m not sure when. But, hopefully this posting will be a bit of help that is available – and might even prompt some improvements.
Skip the part of taking the medicines straight! Go straight to mixing them!
*** Note: I just realized that I could have split the 30 mils of Ibuprofen into three 10-mil servings, and made the proportions of whatever I mixed with it much higher. It never occurred to me, mostly I think because I always just wanted to get it over with. But I'll leave that thought here as another option...
This post has been difficult to write, and has taken over a week. Much of it I wrote while my teeth were rubber-banded shut, which was a state that lent itself to feelings of suffocation. It has now been four days since my teeth were freed, and though I thought that freedom was going to feel like nirvana, I’ve since found that I’m still struggling with conditions that make me feel suffocated.
That’s actually a general theme for my recovery: there has been no dramatic turning point at which all became easy and relieved. (Hint to self: there isn’t going to be.) The same thing was true in my recovery from gall bladder surgery last year, and the same thing is true day to day in this process – and my memory is so short, I seem to have to re-learn patience every day. Then comes frustration that I’m not better at being patient. But sometimes I can see, thinking along lines my counselor has suggested, that such frustration is just a story I’m telling myself about this event in my life, an interpretation which is itself causing much of my suffering in this moment. Let go of the story, notice what is, and the frustration drops away – at least for now. Then I just do what I need to do, and get on with life.
*** From last week ***
I've been thinking a lot about suffocation - asphyxia - this past week. I've experienced a fair amount of what I would describe as mild suffocation during my recovery so far, with my teeth rubber-banded shut, my lips numb and sometimes resting in a closed position, and intermittent congestion in both nasal passages. My options are limited when these conditions are present, because I am not allowed to use pressure to blow my nose and clear the airway – if I even could successfully do that. There have been a few times when I have had to hold my mouth open with my fingers to keep a path for airflow.
-- At this point I'll comment once again, thanks for Lorraine's combination of pragmatism and compassion! She came in the room to find me struggling to breathe as I re-enacted these conditions, and reminded me that I can run my CPAP, whose very purpose is to keep those airways open. OK, that's helping, and there's no reason to struggle for breath when I don't have to! --
Though the conditions are more extreme this week, some of them have been present for most of my life. The "septoplasty" procedure in my surgery was for the purpose of clearing away my deviated septum on the right side, which has partially blocked that airway for as long as I can remember. When combined with certain kinds of congestion, and a closed mouth, that blockage has often made me unable to breathe.
I experienced that sort of suffocation several times in the period when dentists used rubber dams to isolate teeth for putting in fillings. That rubber dam also blocked off breathing from the mouth, and I was told to "breathe through your nose". Unfortunately, by that point in the procedure I usually couldn't point out that I wasn't able to breathe that way. (After a while I finally got proactive and asked them not to use the dam at the beginning of the appointment.) I spent a lot of time in circumstances like that controlling my breath and controlling panic as well, usually for the whole time until the dam was removed.
Even when the rubber dam was not in use I had to learn how to manage breathing in dental and orthodontist appointments. I found that when I was partially congested, certain behaviors could worsen my congestion during the appointment. I learned that abrupt "snorting" breaths - the breaths I was likely to take when I felt suffocated and wanted a lot of air fast - would likely disturb the mucous in my nasal airway and create the very blockage I was trying to avoid. Only by taking in a controlled, slow-moving breath past the congestion could I keep the airway open. I often had to resist an impulse to panic at those times. I also had to remain calm when I had saliva or water in my throat that I was trying to keep from going down my windpipe. Sometimes I would be able to swallow the liquid, but other times I just had to manage it, keeping it isolated until someone noticed it and removed it with suction, while simultaneously maintaining that slow, steady breath to keep the congestion undisturbed and the airflow unimpeded.
Through most of my considerable dental- and orthodontic-patient experience, I didn't discuss this with anyone. Only recently, as I worked several times with a very experienced and informative hygienist at my periodontist's office, had I begun to broach the topic. Unfortunately she has retired, but I am hopeful I can continue exploring the topic with others and learning some better strategies for coping successfully with this issue.
*** Now, this week ***
Though the CPAP was helpful in this recovery period for waking use, I’ve tried several times to return to using it for sleeping, but had to abort, usually after disturbing and uncomfortable sequences of suffocation, panic, and frustration. Last night (8/28) was my first success with the CPAP for sleeping since the surgery. I hadn’t intended to use it, but I was experiencing complete congestion in my nose, and as I tried to sleep with my mouth open, severe dryness was setting in immediately each time I tried to fall asleep. The CPAP mask confines my mouth and nose to only the air coming from the machine, and hydrates that air to help keep me from drying out as much. Things began roughly, as the severe congestion led to pretty much immediate feelings of suffocation when I put on the mask. But last night the fear grew greater than I had ever experienced before, into an unreasoned panic that the machine might actually stop, I’d be unaware or unable to rip off the mask, and that I would die of suffocation. It took a while to “talk myself off the ledge” and be able to accept surrendering my breath to a machine. Finally around 4:00 a.m. this morning I was calm and breathing regularly with the CPAP, and fell asleep.
I’m still struggling with this panic that comes and overwhelms me when I can’t breathe. I don’t know if we all have this conditioned response, or if it’s more powerful in me. I don’t know how to make it better, and I don’t know how to not respond to the fear. It’s hard to trust that this is going to get better, and that I’m not going to feel starved for air for the rest of my life. My surgeon says it could be months.
I’m looking forward to a day when my lips aren’t numb and can be a little more helpful (staying OPEN; how about that?!) so they don’t accidentally block my breathing. I’m looking forward to experiencing that freedom of air movement through my nose that I found just after waking up from surgery, before the swelling kicked in and blocked it. I’m looking forward to freedom from congestion in my nasal passages, so that I can take an easy breath through my nose just like they do in the decongestant commercials.
And actually, I recognize that I do know something about making it better. I’m going to have to be more intentional about some things I do. Sometimes the conditions that cause my suffocation are brought about by my own impatience, like when I try to drink or eat just a little bit too much in this mouthful, even though I can feel my body wants breath right now, not food or drink. I can also help by revisiting my steps from the Alexander Technique – first asking for ease, which naturally lets me get out of the way and let my body breathe itself.
It's been a while since I made a post. The last couple of days have been a whirlwind of changes and new experiences, and I've had a hard time adjusting. Here are some updates.
- We've cleaned up the "recovery room" here at home in the basement where I spent most of 9 days. It offered cooler temperatures, comfortable flexible sleeping or resting arrangements, a DVD player, the iPad, a variety of pillows, blankets, tissues, handkerchiefs, etc, quick access to a freezer (gel packs) and bathroom; everything I needed except food. It feels like a scary kind of graduation to be moving back upstairs and into a more normal life. I need to stay connected to some of these comforts: for one, easy opportunity to rest.
- I've finished all liquid medications, so that 3-times-daily trial is ended. I'll do a follow-up post soon about what I learned about medicating via syringe and catheter. I came a long way from some of the difficulties I outlined in my post 8/21, and have some tips for anyone who has to do that. Once I've shared my two bits, I'll put that topic to bed for a good long time, I hope.
- Yesterday (Friday), my surgeon cut all the rubber bands holding my mouth together. I can open my mouth at will. I can't overstate the difference this makes in easing my sense of suffocation, as well as helping me regain a feeling of autonomy.
- You've seen those horror-images where the bottom part of a face is torn away to show the bone structure beneath (or a Terminator skeleton)? That is how my face feels right now. I'm not in a lot of pain, though it's certainly a constant. I'd call it more like my nerves are "irritated" in that area of the face. I'm continually feeling pulsing patterns that change in the degree of irritation - say, a relatively 'painful' sensation cycles to 'irritated', then cycles to 'numb', and so on. It also seems that the patterns of irritations relate to the shape of the muscles in that part of my face. [Update, evening: these sensations have been constant all day and have made things a struggle. I haven’t had any success distracting myself from them. Also tried icing and massaging, but it’s hard to say if that makes them better or worse.]
- I can touch my teeth together. Where they meet is unrecognizable from before. These changes mean that now I'm sometimes biting myself inside, especially when I'm not paying attention to the teeth, like when I’m trying to drink. Because I'm numb back there, I don't know when I have bit myself, except when it really crunches.
I have some scarred areas building up by my molars, as a result of several bites, I believe. This isn't that different than what happens with braces anytime there's a change in the hardware. Except, one big difference is that I can't feel the pain and soreness that comes with those wounds, and so I don't have a system warning there. This one might read, "Repeatedly damaged area. High probability of more incidences. Open wound? Back, side area of mouth; low mouth traffic area. Good chance of infection." It has definitely become somewhat inflamed. I'm treating it with Peridex, which I'm supposed to be rinsing with regularly now (and am). I'm giving special attention to this area, laving it with the toothbrush, and rinsing/gargling in such a way that I know it's getting lots of exposure. I'll take care of it.
And now, a lighter comment:
Gargling is one of those things that's pretty much impossible to do gracefully. Especially right now with numb lips and chin and stuff, it isn't pretty. It's something I do absolutely privately, and I am grateful that I am able to do that. Now, here's the best example of gargling I know.
Gargling Gargoyle Gurgles Gershwin (Courtesy of The Muppets, with Mark Hamill.)
Call this a cry for help. [ed. note: Adam, how about refraining from making dramatic posts at 3:00 in the morning? Thanks, from Adam-of-the-next-day] I recently received a comment saying, "take your meds, and sleep when they make you drowsy". Well, would it were so easy. Here at 2:45 this morning I've just taken another dose of Oxycodone (roughly 4 hours 30 minutes since the last one), and I'll be soon feeling drowsy - but will I fall asleep? That is the question. In the last several nights I can't recall any time where I was actually certainly asleep, though I had an involved dream one night that I was a cello instructor at a music camp. That felt more like a waking nightmare, though.
Reviewing what I know, I think I'm doing the right things.
- I'm taking the right medications, pretty much right on time. Don't like it but I'm pretty good at it by now.
- I'm drinking a fair amount of water. This is improving, by the evidence, and needs to improve further.
- I'm in clean sheets, clean sleeping clothes, at a comfortable temperature, alone in a dark room, with no bright screens (usually), noisy clocks, annoying machine lights, etc.
- I'm using the CPAP sometimes and sometimes not. The jury is out whether it's helping at this point. I've got a couple of years of experience with the CPAP now, and mask positioning and fit seem good. Pressure is set at lowest setting by expectation of my surgeon, but that is working, too. Temperature and humidity are set at comfortable levels.
- Yes, my mind is busy, but I'd think I have enough exhaustion to overcome that, if everything else was in place.
The part that I think is throwing me: I'm pretty much sitting upright in the (hide-a) bed, on the advice of the ICU doctor (and discovered by my own unhappy experience). If I get horizontal I get much more trouble with facial swelling.
This is very much reminiscent of my struggle to get used to the CPAP two years ago. I can't remember how I turned that corner, though certain settings were crucial.
8:30 following morning: First reasonably good sleep since my surgery. That's better! I put on some ice packs when I went back to bed, and they helped. I ended up mostly not using my CPAP last night. I did sleep much more deeply, and dreamed that I consulted some medieval experts in pharmacology (said hi to Cadfael) about my drugs, and we also sang some chant, too.
I'm not sure I can say why everything worked for that 5-hour stretch, but I'll take it. And, ideas and comments about how else to get good sleep continue to be welcome.
I had my first follow-up appointment with my surgeon yesterday, and have a few things to share from that. Wow, traveling not so many miles and a short appointment took it out of me! (Thankfully Lorraine was driving.)
Everyone in the office was very supportive; saying how great I looked, considering. My surgeon’s partner, who took part in the surgery, also stopped by. He said something that I found most helpful: that in this period (first two weeks after surgery) is when people struggle the most, including wondering whether they should have undergone the procedure in the first place. That thought had crossed my mind (and I was not allowing it free reign), so it was comforting for me to hear that it’s not uncommon to think that.
My surgeon says that I’m doing very well in my recovery; ahead of the curve in some ways. We were able to address several questions that Lorraine and I had. As we talk about the work that was done, my surgeon is making distinctions between things that we know about the surgery and recovery so far, and things we are not going to know for a time. I’ll report on some of those below.
There has been some degree of improvement in my breathing during sleep. My surgeon was able to do quite a large advancement of my mandible and maxilla, of 1 centimeter. He was prepared for a shorter advancement if needed, and had splints ready for a shorter length. I am not sure what besides how well the pharyngeal flap tolerated the advancement was a determining factor for the length of advancement. But the results do mean that my airway at the back of my throat was opened up substantially. With my surgeon’s approval, I have experimented very lightly with my CPAP at lowest pressure, and I know that there has been an improvement in my sleep apnea. It is too early to tell what the results were, but indications so far are positive.
We don’t know what my long-term results will be in chin-area sensations (paresthesia - “pins and needles” and related pain or lack of sensation). My surgeon said that the nerves there were intact during/after the surgery, but notes that 100% of patients coming out of orthognathic surgery (and genioplasty in my case) experience numbness in the chin area. Roughly 85% recover, and that recovery takes a long time, so for me it is far too early to tell what my results will be.
Meanwhile, yes, I am experiencing numbness and a “pins and needles” feeling, in an area that roughly matches a “Van Dyke”-style beard and moustache, plus around my nose. I have left that area unshaved. The first time I shaved after surgery I was very uncomfortable. Though I can see that I’m cutting hair instead of flesh with my razor, being numb I can’t feel it. I decided to let it grow, and I’ve never had this much facial hair in my life! On the down side, the Van Dyke combined with the facial swelling makes me look something like Jon Lovitz’ smarmy character in The Wedding Singer. Well, it’s interesting as a departure… and not likely long-term.
We know that there has been an improvement in my breathing in my nose. Thursday evening (after the Wednesday surgery) when I saw my surgeon in the ICU, I commented that my breathing in my right nostril felt easier than I can ever remember it being in my life. Yesterday my surgeon reminded us that my swelling was really just beginning on Thursday, had been increasing for several days, and has since been interfering with that easy nose-breathing. That matches my experience, though I am also excited to say that even in spite of the swelling I have experienced moments of easy nose-breathing which are a very different experience than my past.
We don’t know what changes have been effected in my speech. My surgeon was encouraged by hearing my speech Thursday in the ICU. My speaking was fairly clear and not a lot changed from when I had spoken to him pre-surgery. However, again the swelling plays a role in hiding the long-term results for my speech. My surgeon noted that when one is congested, it is easier to make closure between the palate (or pharyngeal flap) and the tongue. So, my congestion from the surgery may be hiding hypernasality that will emerge in the longer term when the swelling goes down.
We talked about medications and the eating-via-syringe that I’ve been doing, and my surgeon reminded me that “Healing requires nutrition” – a very important reminder for me.
We also stopped at a favorite Indian fast-food restaurant and got me some chicken tikka masala; we’ll figure out how to get that into me sometime soon.
As you may have noticed, I have chosen not to name any people here in my blog except for my wife Lorraine and myself. There may be other exceptions along the way, but for the most part I have chosen to extend anonymity to those who have been working with me in various capacities, especially medical. This is meant as a professional courtesy, and so far, the professionals I've spoken to have appreciated my intent in this. My usual approach in life is to "give credit where it's due" and express appreciation vigorously when appropriate. But this is a new, unfamiliar, and much more public venue for me than usual, and I want to be respectful of others' public personas.
Today had some tough hours in it, but also one exquisite shared hour where Lorraine - exhausted from caring for me while also finishing up the latest Seattle Opera show - slept beside me for an afternoon nap.
The hard time came a little later. I had taken Oxycodone (10 mil) this morning and had been feeling no pain for a while. I didn't care much for the wooziness that seems to come with it, and there were still sources of discomfort (as opposed to actual pain), but I was feeling like I had turned a corner. But I fell victim to the classic blunder of waiting too long to take a follow-up dose, and by the time I realized it, my head was once again massively swollen. Luckily Lorraine was there to hold my hand through the medications-and-liquid-food regimen, and I made it back to relative comfort.
Taking medications through the syringe and catheter tubing has not been getting easier. There are five different doses I'm taking in different schedules. Amoxicillin and Oxycodone haven't been too bad. Sudafed (childrens' grape flavor, bleah) and Docusill (stool softener) both tend to burn as they go down. Ibuprofen (taken the first 24 hours, now replaced by Oxycodone) was the absolute worst; 30 mil of pain I have to inflict on myself.
I'm particularly concerned about what's happening with my vocal cords as I take these liquids. Because I still can't feel my lips, I can't make closure with my mouth around the catheter tube, which means I allow a lot of air to mix with the liquid and can't control the degree of suction I'm applying to swallow the medications. (Hence, lots of burping.) I do have some degree of control using the syringe plunger to deliver the liquid smoothly through the tube and back behind my teeth. But, once the liquid is descending into my throat, I'm having trouble making a distinction between the action of sucking of liquid down my esophagus and and the drawing-in of air into my lungs. So I work against my larynx's function to stop food and liquid from going down the windpipe - and so am repeatedly drawing bitter and astringent liquids right through the cords and into my lungs. It hurts! And I worry, am I causing damage here? I'll be asking my doctor tomorrow.
Yes, today is Lorraine and my 17th anniversary. I am so thankful for her, and what she has meant to me, and what we have shared. That includes a lot of good times, of course, of music, and family, and friends.
It also includes times when one or the other has been sick or low. Lorraine is getting to see all the best parts of this current medical project; all the yuckiest sights, and dealing with depressed, cranky, and impatient me. We've talked about this kind of thing over the years -- acknowledged to each other that sometimes we really are saying under our breath, "...in sickness and in health, in sickness and in health, etc.") as we do what we need to do to take care of each other.
And we do take turns with this, thankfully. I remember saying those words to myself when Lorraine came down with the Norovirus as we were driving home from Southern California last Christmas. And so on, into the past; and so on, into the future. I don't take it for granted, and I know she doesn't either.
And while I'm on the topic here in the blog, I don't take the care and support I've received from others for granted either. My sister in law and my brother have both taken turns watching over me and helping me feed myself these last two days as I cry and groan and burp (a lot), when Lorraine couldn't be here. I'm still at a loss to say thank you to all of the staff at Overlake - even though I have my voice to use now - and to all the family and friends sending love and support. Before I'm done there will be a lot more thanks due. I'll keep trying to keep up.
I love you, Lorraine.
I'm a verbal person; I can often have a lot to say. Thursday morning, waking up from surgery with my mouth rubber-banded shut and a tube through my vocal cords, I was doing all I could to inhibit any intention to speak. Very soon after waking I asked for a pad of paper and a pen, and started to write notes, some for me, some for Lorraine, and some for the nurses and doctors. Everyone was very patient with me, which I appreciated: Counting up now I find that I wrote over 20 pages of notes in the morning and afternoon of that day!
My notes had several purposes that day. There were a few really important requests and questions that I don't think I could have communicated otherwise. There were interesting and occasionally goofy observations about what I was experiencing. There were thoughts about the ramifications of the Alexander Techniques, and practices of patient care. I'll be writing more about those over time.
Along the "goofy" lines, there were also songs that popped into my head throughout the day related to things I was experiencing.
At one point I was feeling especially appreciative of the care of the nurses, and very much aware of all I couldn't communicate, so I wrote (in a somewhat garbled way)
"You know I can't smile without you...
... And I wiggled my restrained hands back and forth to "dance" the song, and Lorraine translated for me. They seemed to appreciate the thought.
I thought of a lot of other songs, but I'll just include a few of the better ones.
- On having my jaw and chin and nose all cut up: "Well, I feel so broke up; I wanna go home".
- Re-wrote some words to a Flock of Seagulls song: "6'-2" in a 6-foot bed" (Originally "Six Months in a Leaky Boat")
- The Ramones, "I wanna be sedated"
- Yesterday morning at home, knowing my surgeon said my swelling was going to get worse before it got better, I re-wrote a bit of "Red Rubber Ball" by The Cyrkle.
"And I think it's gonna be a while,
yes, the worst is yet to come,
my morning face is swollen like a red rubber ball."
So is this all meaningful? I don't think especially so - but it kept my spirits up and thoughts distracted at some times when I needed it. Even the attempt at having good spirits helped me and Lorraine and, I think, those working around me, too.
Facial Reconstruction Stuff
First thing to say is that all is well. I've been home since yesterday 1:00 p.m. After two nights in the ICU. I look like hell, but thankfully none of you can see. My surgeon let us know that my swelling will continue to get worse through tomorrow, and then start to improve. Oh, joy. And then, 80% of the swelling will go away within a couple weeks and the rest take months, I believe.
There's a kind of horrific fascination in looking in the mirror. In addition to the swelling, there is also blood and other fluids that I don't have a lot of control over right now. I'm not supposed to put any pressure on the area, positive or negative (i.e. blow or suck), so I can't blow my nose or clear much away that is there. And yet, being home, able to wash my face (gingerly), take a shower, etc., did so much for my morale.
I have to hand it to all the professionals and the staff at Overlake hospital for a lot of reasons, and here's just one: Thursday when I was awake, talking, and walking they all said I looked so much better. Yikes! What did I look like after the surgery? Best not for me to know, I think. But thank goodness there are people who can handle that, and do, day in and day out. And, the way that they affirmed me, just when I was feeling incredibly self-conscious, really helped me feel better. My room in the ICU was set up so that I couldn't see myself in the mirror until I was well enough to get out of bed. This is probably an intentional part of the design?
I've been thinking for three days now about how much I'll share of the gory details. I've come to feel that, if a main part of my purpose is to give guidance and affirmation to others who may follow along with similar surgeries as mine, it's important that I acknowledge at least some of the issues that they are going to face as I have. So I think I'll pick and choose my topics, include some important ones, like how they took the intubation out, and skip some others, like dealing with a catheter...
Then there's also the amount of energy I have to give. I can hear my many medical-professional friends saying I should be sleeping/resting. Yes, everything is harder, take more energy, I get tired. (And then my grammar and text suffers, too.) Bit by bit. (But there's so much to say!)
Dr. Adam Burdick has been a professional musician for over two decades. Teaching, conducting, and performing in various music genres, he is also a perpetual student with interest in a wide range of topics. He loves to ponder and share his discoveries with anyone interested!