Today is Wednesday, December 23, 2015. It’s currently 7:20pm. At this time three weeks ago, I had been in the recovery room for two hours. I am currently sitting behind Amy as she drives us (and our dog) to my mother’s home in southwest Los Angeles County, about two hours away with current traffic. This may be a long post, since I’m still not allowed to talk much with my elastics on and I really don’t want to fall asleep and screw up my circadian clock. More on that later.
Before I say anything more, I must give a huge THANK YOU to everyone who has sent their best wishes and to all of our friends and family that have directly lent their support – Eric and Bill, who made the recliner disappear in a snap and were gone before I could even finish my morning round of meds to get outside and thank them; Mary and Jim who came up and, like Mary Poppins, had so many projects (that neither Amy nor I were physically capable of doing in our current conditions) completed in a snap; my mother, who has devoted over two full weeks to my care and left her life at home on hold despite everything going on during the holiday season and made this surgery possible; my brother, who made sure our mother’s house was not destroyed in her absence by her circus of animals; and most of all, my wife Amy, who has proven she has the patience of a saint and has shown me a level of love that is rivaled only by God him- (or her-) self. Despite being 33 weeks pregnant (as of today), she has continued to be my rock, can understand me and get (or provide through her support) me what I need when I can’t even say it out loud. She has been there, day and night, through everything. No words can express my love and gratitude for Amy and what she has given to me, not just in the past three weeks but also in the past several months leading up to the surgery, with my schedule filled with long days at work, one doctor’s visit after another, obligations as a volunteer member of the Board of Directors of the Desert Tortoise Council, among other things. I have to stop this line of thought now, as the love and gratitude I feel is overwhelming.
I knew Amy was writing a blog to keep everyone updated, and I finally had the energy to read through it today. I think you’d agree with me that she’s done a marvelous job! In this post, I’m going to jump between different subjects to provide my perspective and fill in some gaps (and there’s a big one that I’ll share in a future post that Amy chose to leave out so that I could address it – I’m not exactly sure why, but I’m not going to second-guess her decisions like a Monday Morning Quarterback while I was largely out of it for three weeks!).
Update on the Past Few Days. As you can see from Amy’s recent posts, I had been doing pretty well. While I initially ditched the recliner around the week 2 point, I went back to it after just five nights. I found it was just too tempting to sleep on my side (which I’ve been doing exclusively for the past four years) when sleeping in a normal bed, and I find I still can’t sleep flat on my back (it’s not doctor’s orders, I just can’t). I hope this odd phenomenon will change soon. More on that later, in a future post. For now, I’ll just share that it turns out the recliner was the best option for me and I actually (generally) sleep a lot better while in it, though it still took me about 1.5-2 hours to fall asleep each night. I’m not sure what I’ll be sleeping on during our holiday vacation (but most likely it will be a bed) – wish me luck that it goes well!
So, I was doing a lot better up until about ~40 hours ago, when I should have fallen asleep after lying in the recliner for two hours. I’m not sure what exactly was going on, but I was at least “80% wide awake” until about 4AM. Maybe my brain was wired from trying to deal with insurance issues earlier that day (more on insurance in a future post). Maybe it was wired because I took 1.5 teaspoons of tramadol just before going to bed. I thought Tramadol was supposed to make me sleepy, but I hadn’t taken more than a teaspoon per day (and that during the middle of the day) for the past several days. Maybe I was just not comfortable because my jaw had been broken in six places less than three weeks earlier and I had a bad night.
Around 4, I finally fell asleep, but only very lightly. At 4:45, our dog woke me up. He had been in a 90-minute repeating cycle all night long. He’d sleep peacefully for about 15-20 minutes (25 if I was lucky), after which his breathing would get heavier and heavier. Over the course of the next 45 minutes, he would make all the apnea-like sounds (e.g.., heavily strained breathing, snorting, not breathing for a few seconds…) that I would make if I tried sleeping on my back before the surgery. For those of you that don’t know us, neither our dog nor I am overweight – our apnea is due entirely to other reasons. After those 45 minutes, our dog would then spend 20-30 licking himself. In a very quiet room, when you happen to be super-sensitive to noise (at that moment, I’m not normally so), it’s torture. I got up at least four times to get him to stop whatever he was doing. I don’t think I got more than 15-20 minutes of very light sleep at a time between 5am and 8am. I then got about 40 minutes of decent sleep before I had to get up to get to an acupuncture appointment at 9:30am. So I figure I got about 2-3 hours of light sleep that night.
To my surprise, I actually felt pretty good during most of the following day. During the appointment with Dr. Gunson, at one point, he asked me to stand up at my own speed, after I was ready and was not feeling dizzy. I hadn’t had that sensation for so long that I frankly thought it was odd and chalked it up to either him being over-cautious (which he naturally is, which is another reason why we like him so much) or that this is just his standard protocol regardless of who the patient is and how he or she is doing.
During the appointment, Dr. Gunson also measured my ability to open my mouth at about 20 mm – the same as the first reading I had approximately two weeks earlier, and this time I’d had the benefit of being able to do a week of exercises. While I’d like to see more progress, I recognize Dr. Gunson put me in some very, very tight elastics for the 24 hours following that first measurement. At first they didn’t bother me much – my teeth just stayed very, very shut. After a few hours, however, I began to feel all the muscles in my face tighten up, and by the time he took them off the next day, my ability to open my mouth was drastically reduced. He let me stretch for about half an hour, during which time Amy said it looked like I got it back to about the same 20mm opening as the day before, but no official measurement was taken and I remained skeptical. I also then spent another week with the elastics in (thankfully not as tight) before I was allowed to do the exercises. My point is, elastics protect the bite and prevent relapse (i.e., bones moving to where they shouldn’t be) but cause a secondary evil (tightening of the muscles). Also, while they are kind about it, neither Dr. Gunson nor his staff have much sympathy for my perceived lack of progress since most patients at this time only have a 7-10 mm opening. Also, progress is just going to be very slow. If I’m lucky (and work very hard, which frankly is very difficult to do, both physically and mentally), I can increase the opening by a paltry one to two millimeters per week.
Dr. Gunson also adjusted the cheek augmentation during the appointment. He confirmed that I hadn’t done anything to flatten or modify them in any way (always a concern of mine since I have to sleep with my head somewhat to the side, and I often wake up with at least a portion of my cheek resting softly on part of a very soft pillow). His office staff person let us know that this can cause more swelling in the following 1-2 days. More on this below.
After the appointment, we returned home and I expected to fall asleep from exhaustion, but I didn’t. At best I was a bit groggy, but I was definitely ready for bed by 9 and we had the lights out at 9:45. I fell asleep within 15-20 minutes (hooray!) and generally slept deeply. At one point in the middle of the night, I woke up drenched from a night sweat. Those happen to me occasionally, but usually only at the end of a flu or cold and I know, after that time, I’ll feel a lot better. I have no explanation for this night sweat (nothing about the temperature or the blankets, etc. had changed, and I hadn’t felt sick). Not only that, but I was also extremely groggy and didn’t feel much better. After waiting 15-20 minutes hoping I could just ignore it and fall back asleep, I realized I wouldn’t be able to do that. I didn’t have the energy to get up and change, so I just took off my bathrobe (which I’ve frequently slept in as I often get up at least once or twice a night and I don’t want to get cold when I do so – any feelings of cold, hungry, or tired are multiplied by 10 when recovering from this surgery). Fortunately that was enough to let me get back to sleep.
Except for that one episode, to my surprise, I slept soundly until 5:45am. At that time I woke up feeling fairly well, I just had a craving for something warm to drink. By 6am, it was still very dark and I didn’t want to wake Amy, but the need to drink something warm became too strong to try and ignore further. So up I went, and from our kitchen window, I could see the faintest hints of dawn. I was only somewhat tired but otherwise felt good, and I began getting a hint of what it would be like to get 8 nearly solid hours of sleep from 10pm to 6am and how amazing that must feel. Knowing I needed more sleep given what happened the previous night (and I’m still recovering!) I went back to bed.
Around 9:30, I woke up very, very groggy but I couldn’t get back to sleep – apparently I was finally done. By 9:45-10, I joined Amy in the living room. I drank my breakfast and took off my elastics to do my exercises. By 10:30, I had been unable to shake the feeling of being cold despite turning up the heat several times and crawling under blankets, so I took a shower. (Backstory: Dr. Gunson’s office staff cleared me to take a shower about one week earlier, which is so much better than a bath because I would always get cold during the bath no matter what I did. Dr. Gunson’s standard paperwork advises taking only short, warm [but not hot] showers for a long time after the surgery, once you are cleared to take a shower.) Since nobody had recently mentioned the “don’t take long, hot showers” thing in a while, I thought I could disregard this advice, and I could not have been more wrong. I stood in the shower for 5-10 minutes just enjoying the feeling of warmth all around me. I then started actually getting myself clean, but by the time I’d finished just washing my hair (doesn’t take long), I began getting dizzy. I immediately started making the water cooler, but apparently not fast enough. Within another minute, I had no choice but to sit down (Dr. Gunson’s office is very clear – if you’re dizzy, you MUST sit down!). With the (cooler) water hitting my back, I sat on the tub floor for several minutes, light-headed, trying to catch my breath. After I thought it might be safe to stand, I stood up, only to immediately become dizzy again and go back to sitting. I must have waited another 5-10 minutes before I was actually strong enough to stand up slowly. I decided my shower was done even though it wasn’t complete and began to dry off. By the time I was dry, my breathing was under control and I felt better but I was cold, again. So I decided to get back into the shower, at a mildly warm temperature, and finish getting clean as quickly as I could. Within a few minutes I was drying off again, but utterly exhausted. I moved to our bed and called Amy to ask for her help getting my clothes so I could get dressed before I got cold. She did so with such amazing love, patience and support, and I was so tired, that it overwhelmed me. (I’ve also learned in the last few days that the combination of anesthesia and major surgery can change one’s personality and can make people far more emotional – more on that in another post).
After getting dressed, I laid in bed for a long time trying to regain my strength. The timer to tell me to brush my teeth and put my elastics back on went off while I was still in the shower, but I couldn’t get up for a very long time without getting dizzy.
While waiting to regain my strength, Amy’s family (two sisters, their husbands, their two newborn babies, and Amy’s parents who recently became grandparents with the birth of these two girls) got together and Face-Timed us to include us. I was very happy to see everyone, but the thought that we’re not there enjoying this very special time with them now solely because I had this surgery crossed my mind and was very hard to take. Seeing them all together, seeing the joy in the baby’s face whenever anyone said just about anything to her, seeing my other niece as a newborn, and wanting to be there and be a part of it was so overwhelming at times that I had to signal off-camera to Amy to take me out of their view so that I didn’t cause a scene, and at one point I had to ask Amy to leave the room entirely before I broke down completely.
By the way, exercises and facial movement have been a lot harder today. I can’t visually pinpoint the swelling caused by Dr. Gunson adjusting the cheek augmentation yesterday, but I can definitely feel its effects. I have more pain and a whole lot more general discomfort in my mouth and the bottom half of my face. Throughout this process, I’ve gained a much deeper appreciation for the problems that swelling can cause. I’m used to ankles and wrists swelling after some kind of injury, and I’m used the pain that the injury can cause, but that would go away relatively quickly after immobilizing it. Unfortunately, it’s just not possible to immobilize the muscles in your face, especially when you have to do exercises three times a day. And this kind of swelling is like nothing I’ve felt before – it actually causes pain, and facial swelling can be extremely uncomfortable. I cannot find words to describe this phenomenon appropriately.
In conclusion, I learned today what they mean by “setbacks happen” (and it’s pretty literal – you go back to how you were before, not being able to care for yourself) and one more aspect of what people mean when they say “this is the hardest thing I’ve ever done.” (I’ll discuss other aspects, and why some of them were a surprise to me, in a future post). If I could do it again, I wouldn’t have a choice – I had to have this surgery done when we did. But that doesn’t make losing out on this very special time with my family any easier.
FYI, in future posts, I’d like to provide a synopsis of my perspective of my recovery timeline (with photos) as well as a discussion of surprises (both pleasant and otherwise) and other observations I’ve made. While we’ll continue to post updates on my progress, the focus of these particular future posts will be to provide one more perspective of how recovery can go after undergoing such a major surgery so that anyone else thinking about having the surgery done that stumbles on this blog may benefit. I know how much my family and I benefited from other people’s blogs before the surgery (and still do).
We just arrived a little after 9pm at my mother’s home. Time for this long post to end and for Christmas to really begin!
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