Patience - and changes
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.
Eating/Medicating via Syringe
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.
Add some Music to your day
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.
First Update since surgery
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!)
Yes, that's where I'm going tomorrow. I can hear the denial and negotiating stages in my mind. Surely that's just an estimate; it won't necessarily be a full 6 weeks, right?
Well, in any case, that's what's next for me. I did think to drink a good glass of water an hour ago, but by now (11:42 p.m. now, surgery tomorrow morning) I'd probably better not eat anything more.
I've been trying to eat Oreos, ice cream, and M&Ms for days now, to gain weight since I'll probably be losing a lot of weight in the near future. Yes, I ate three ice cream cones two nights in a row. But strangely I couldn't interest myself in those treats very much, found myself eating them mostly because I was "supposed to", and could only gain about 6 pounds. An hour ago, I was still ambivalent about them. Now that I'm not going to get anything like them for weeks, now I'm thinking they sound pretty good...
I have to hand it to Lorraine. Simultaneously a loving caregiver for me, an experienced Weight Watchers success story, and a Librarian; she went looking for resources for recipes I/we can puree, put into a syringe, and pump through a catheter to the back of my mouth, bypassing my rubber-banded-shut teeth. Though it's still theoretical (haven't actually done it yet), we have a great resource (also found by Lorraine) in this YouTube video.
I love this guy's sense of humor, and aspire to having such a great attitude myself, when the time comes. My favorite part is when he says, "Clm Chwdr" and gives a big double-thumbs-up. I've already shared that with many people, and look forward to re-enacting it myself.
Appreciation to my Parents
Though I have sung the praises (and rightly so) of a host of medical professionals who have made my singing, musical life possible, I haven’t made much mention of two very important figures in the process: my parents, John and Karolyn Burdick.
Recently my mom and dad have shared a sheaf of records they kept of the process, so I can see some of the invoices (Anesthesia for surgery in 1975, $126.00!), correspondence from the Crippled Children’s Fund, a report from the Maxillofacial Review Board in 1980, etc. It all reminds me that from my birth until I left home (and certainly beyond that), they have been caring for me and supporting me through surgeries, speech therapy, orthodontia (6 years), and countless appointments, in a decades-long process of healing. It could not have happened without their persistence.
Thanks also to the support from my older brother Don and my younger brother Dan, who loaned me Brown Dog while I was in the hospital.
My mom tells a story about my second surgery, when I was almost 5 years old. On the way into surgery, as they wheeled me on the gurney through the double-doors and out of my mother’s view, I said in a very small voice, “But I didn’t want to have an operation…”
Lorraine (my wife and life partner) has said I am NOT to say any such thing this time, even in jest… Sorry, Mom.
Much love, Mom & Dad. And much thanks.
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!