Post-Op Day 35/Post-Revision Day 24: Ups and Downs (and Ups)

My appointment last Wednesday gave me a shot in the arm, or rather the hand, literally and figuratively. I was extremely tired and weak, like I’ve never felt before, the morning of my appointment. Drinking my breakfast in bed, showering, and getting dressed absolutely wiped me out. When I got there, I received about a bag and a half of IV fluids through the back of my hand (my teeny collapsing veins are nearly impossible to find in the crook of my elbow) and some encouraging words from my surgeon and his assistant. They told me to see my primary care physician if the intestinal issues didn’t resolve. They also gave me permission to eat soft foods without chewing!!!!!!! They were hoping that adding some bulk to my diet would help the GI stuff and the greater variety would give me more energy and renew my gusto for life.

After the appointment, Mom and I headed to Boston Market for some real food. I got the Side Item Sampler (three sides and a piece of corn bread) with mashed potatoes and gravy, creamed spinach, and mac and cheese. I managed to get about 1/3 to 1/2 of it down. It was very odd trying to get the fork in between my elastic bands and swallowing non-liquid food. It was slow and messy, but absolutely wonderful! I was already feeling better since receiving the IV fluids (I cannot emphasize enough how much of a difference hydration makes), and the warm, savory, wholesome (i.e., high-Calorie) foods helped a LOT. Things no longer seemed as bleak or endless.

My first solid foods at Boston Market!
My first solid foods at Boston Market!

The weekend proved to be very eventful, with the main attraction being Mike’s mother’s 50th birthday. I was able to eat a wide variety of foods including bread, ravioli, French onion soup, a breadstick, macaroni and cheese, taco meat, cake, flank steak, mashed potatoes, asparagus, pizza (without the crust), more French onion soup, corned beef and cabbage, and shepherd’s pie. The ravioli proved to be quite challenging; Mike and my mom laughed because they had just about finished their meals when I proudly announced, “I’m done with one ravioli!” I got the hang of eating, though, and am getting better at it every day.

Ravioli... yum!
Ravioli… yum!
Mike's mom's birthday gathering, minus her sister who is taking the picture :-) There I am in the middle with Mike, smiling more normally than I have previously.
Mike’s mom’s birthday gathering, minus her sister who is taking the picture 🙂 There I am in the middle with Mike, smiling more normally than I have previously.

One unfortunate thing that happened over the weekend was slipping on the snow/ice/slush. I didn’t fall, but when all my muscles tensed up to keep my balance the muscles on the right side of my jaw/face spasmed painfully. It continued to spasm throughout the weekend, keeping me awake through much of Monday night. Tuesday morning, I wasn’t feeling well enough to perform my clinical duties; fortunately, the first years (with our supervisor’s assistance) handled everything just fine. (I later met with my supervisor to discuss a slower integration back into clinic; she doesn’t want it to be something I worry about from week to week).

I was feeling well enough, however, to go to class on Tuesday and Wednesday. I bought a digital audio recorder over the weekend and recorded my professor’s lecture on Tuesday. It was a much-appreciated suggestion by the priest at the church I attended during undergrad; now I can focus on paying attention and drinking/eating during class rather than doing all of that in addition to taking detailed notes. I have yet to go back and listen to the lecture and type up the notes, but I know it will have worked just fine (there are a few others in that class who also record the lecture).

I saw my PCP yesterday afternoon regarding my intestinal issues. She thinks it’s probably a combination of things (long-term use of NSAIDs, mostly-liquid diet, starting to drink coffee again, etc.) and isn’t concerned about infection since I haven’t had a fever and haven’t had pain or discomfort. She ordered a sample kit just in case the issue doesn’t resolve, but since it’s starting to get better she doesn’t think I picked up C. diff or anything scary like that at the hospital. She gave me some ideas on how to restart my medications post-op, and also suggested probiotics (which was suggested to me by one of my childhood best friends as well) via yogurt and/or supplements (specifically Culturelle).

I had another follow-up with my surgeon today. He is very pleased with how everything looks and how my energy and mood has improved since last week. He removed the elastic bands so I could brush my teeth very well inside and out, which I love. It’s tough going from using a Philips Sonicare toothbrush twice a day to using a baby toothbrush a few times a day with limited access. He told me that I can fly with Mike again at 6 weeks post-maxillary op, which will be January 29th (YAY!!!). He also told me that I’ve graduated from weekly follow-up appointments and won’t see him again for 3 weeks. At that point, there is a good chance that he’ll release me to my orthodontist’s care. It’s hard to believe! And bittersweet… I’ve grown really fond of my surgeon and his staff and enjoy seeing them regularly.

They gave me before (11/05/2014) and after (01/14/2015) x-ray images today. Technically it’s an i-CAT cone beam 3D image or something, but anyways… the “after” images are 27 days post-op, and 16 days post-revision.

Before--notice the open bite. The white streak coming up from my upper jaw is the root canal in my right canine.
Before–notice the open bite. The white streak coming up from my upper jaw is the root canal in my right canine.
After--check out that hardware!
After–check out that hardware!
Before
Before
After
After

The screws seen between my upper and lower medial incisors are actually external; the elastic band in the middle goes around them as opposed to on the surgical hooks on my arch wires. My surgeon says he removes them with just a screwdriver (!) and that they usually come out at 6 weeks post-op. Maybe they’ll come out at my next appointment!

Before
Before
After
After

I want to give my mom a huge THANK YOU for taking care of me, even though I’m almost 26. She’s been with me most of the time since I came back to school. She has offered to do anything and everything I don’t feel well enough to do: drive, grocery shop, carry my school supplies to and from class, prepare food, do dishes (and I don’t have a dishwasher!), take out the trash, do laundry, accompany to my appointments… she even rips up bread into tiny little shreds and butters them so I can swallow them effortlessly. I know Dad would be here if he could, but he has to hold down the fort at home with the family optometry business. He gives me excellent moral support via phone call, text message, and email 🙂

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Post-Op Day 26/Post-Revision Day 15: More Complications

I’ve had some lower GI issues since I stopped taking the Lortab (liquid hydrocodone + acetaminophen). Imodium took care of it for a few days at the end of last week, and it eventually took care of things today. I had to miss class, though, because I was running to the bathroom every 5-10 minutes and started to feel so weak and tired. No fever, though, and no GI discomfort.

While my dietitian cousin assures me that this kind of issue is not uncommon for her patients on a liquid diet, my surgeon tells us that this isn’t normal for his patients. Regardless, I’m losing a lot of fluid and electrolytes. My next follow-up appointment was originally scheduled for Thursday (the day after tomorrow), but when my mom called to ask about my issues today my surgeon decided that he wants to see me ASAP tomorrow. He’s planning to give me IV fluids to try to get me “over this hump”. Hopefully they’ll have some ideas about how to re-calibrate my GI tract.

I also want some ideas about how to get all of these fluids in when resuming a normal life! It is extremely difficult. I wake up and have to drink 8 fl oz of juice (or Gatorade or something similar) and a “small meal”. By the time I’m ready to head to campus, I have to drink another 8 fl oz of juice. By the time I get to campus and class has started, it’s time to drink another 8 fl oz of juice and another “small meal”. Part of what makes it difficult is that I can’t use a straw yet, and I still dribble a lot when drinking. How do I pay attention/take notes in class or work at a computer when I’m drinking so much?!

When I was feeling really discouraged about resuming my normal life while drinking so much and so often, Mike reminded me that it’s only impossible if I think it is. He said, “You just have to change your routine a bit until you’re healthy is all. You can’t do what you normally do because your body isn’t doing what it normally does.” I knew I could count on him to put it into a different perspective like that.  I just need to figure out this different routine!

I’m doing better emotionally. Still crying once or twice a day, but that’s a huge improvement. I saw some family friends on Sunday, and it felt so good to laugh and smile (although later that night and yesterday my muscles were quite sore!) with loved ones.

**Edit: I tried sleeping flat on my back last night rather than propped up on pillows. It was a better sleep than the previous few nights, so I’m going to keep it up. I also put a towel on my pillow to help with the drool situation side-sleeping, which seemed to work.

Post-Op Day 22/Post-Op Day 12: Emotional Rock Bottom

I owe everyone an apology for not keeping up with this! Here’s what’s been happening since my revision surgery:

I had a follow-up less than 24 hours after my BSSO revision surgery to check on my bite and see if it seemed relatively stable. I have hardly ever had as much pain as I had after my surgeon un-banded my teeth. He wanted my jaw to completely relax and settle without influence of elastics, but everything was still so tender after the surgery. Fortunately that pain was transient with the help of Lortab, Advil, and the cold “jaw bra”. They said that my bite looked really good so far, and wanted to see me back in 3 days.

I actually showered and put on some nicer clothes on New Year’s Eve. I was able to stay up and celebrate the arrival of 2015 with my parents and Mike, and even made it through an out-of-tune, slurpy/drooling rendition of Auld Lang Syne gathered around the piano. Mike and I were able to share a midnight kiss (our first ever New Year’s kiss), which was so wonderful (even though my lips were numb and swollen).

Happy 2015!
Happy 2015!

The next follow-up (Day 15 post-op/Day 3 post-revision) had only good news as well. My surgeon was very pleased with my bite, even after it relaxed without bands again (much less painful this time); however, I was still swollen so only time would tell if there would be another relapse. Additionally, I had gained something like 5 pounds and was retaining a LOT of water… my feet, ankles, and knees had never looked so puffy! Blame it on the sodium in my diet, the NSAID, steroids, and sedentary lifestyle. They put on two elastic bands in the middle/front in case I had another breakage (apparently I’m notorious for breaking the middle bands…) He and his assistant were getting ready to leave for Guatemala on a week-long mission trip to do cleft lip/cleft palate surgery, so I would see his partner at my next follow-up. After the appointment, I had to say goodbye to my sweet Mike. He had to get home to his life after having spent two and a half weeks with my parents and me. Mike took SUCH good care of me, making sure I drank every hour and had a small meal every two hours. He also took care of me emotionally, reassuring me when I was feeling frustrated and being perfect when I hit a steroid withdrawal low after my first operation. I truly believe that Mike played an absolutely essential role in my early recovery. I feel like neither words nor actions could ever express my gratitude.

After that follow-up, everything gradually fell apart. I lost my appetite, couldn’t stand anything creamy (there went most of my Calories and nutrients from Ensure Plus), and eventually could barely take clear fluids like Gatorade, water, and broth. Everything seemed to make me gag. Then on Day 11 (yesterday) I lost it. I cried on and off for something like 4 hours and just could not stop. This also happened to be the day of my follow-up with my surgeon’s partner. I was just so upset about everything, especially missing Mike. He was going to fly down to accompany Mom and me to the appointment (Dad had to work), but the weather forecast was too poor and it wasn’t worth driving 2 and a half hours both ways for a short appointment when the weather forecast looked like that (Damn it, winter! You used to be one of my favorite seasons! I have always been on your side!). I was an absolute mess.

Fortunately, I was able to keep it together and didn’t cry at the appointment. The follow-up was mostly good. I really like my surgeon’s partner; he and the assistant were sympathetic and had good suggestions for me. They assured me that the depression is normal (which I already knew, but it’s nice to hear it from the professionals) because of the steroid withdrawal, and that I should start to feel better on Day 14 (which will be Monday the 12th). The surgeon suggested some clear meal replacement/supplement drinks that aren’t creamy but have lots of Calories, carbs, and protein. They didn’t have much to say about my feeling like I was going to gag at everything, but instead stared at me while they encouraged me to drink 16 fl. oz of apple juice on the spot. When people in white coats tell you that there are no options but to just push through and drink, and they stand and stare while they wait for you to do it, you do it! The surgeon said that my bite looks really good, and that my “projection” looks “ideal” (I guess projection is how my jaws and chin look from the side/profile view). Yay! Looks like things are stable! Unfortunately, I had lost something like 15 pounds since my previous appointment (probably more like 10 since the weight gain was mostly water retention). They were sympathetic, but firm in that I need to just push through and make myself drink. It is what it is, I guess!

After the appointment, my mom and I went to the mall to have dinner and get some of the meal supplements that the surgeon suggested. I was able to separate the broth from the noodles/meat/vegetables of the chicken noodle soup at Panera and had some iced green tea (after the 16 oz of apple juice!). I laughed really hard at Panera, and it felt so good; I nearly started crying about laughing because it felt like so long since I had laughed like that. Walking around was absolutely exhausting. I’ve never felt tired like that in my life. It felt so good to get in the car to head home. We had to stop on the way home due to the weather and for me to take a rest-stop–it seems that since I’ve stopped taking Lortab I have the opposite intestinal problem (sigh). We eventually got home safe and sound, thankfully.

Today has been a little better. I’ve been able to take in more fluids (chicken and beef/vegetable broth, Gatorade, Ensure Clear, Ensure Active) and Calories (Welsh rarebit!) but am still off of the creamy Ensure drinks. I cried quite a bit during the first half of the day, but am doing better this evening. Mom suggested we play some games, so we played the Rudolph version of Operation that Mike and I gave her for Christmas and The Game of Life (Mom won both games, of course). We had some good laughs with it.

Since stopping the Lortab, I’ve had more trouble sleeping. I’m sick of sleeping on my back, but sleeping on my side is uncomfortable on my jaw and also leads to an uncontrollable drool situation that is not at all sleep-inducing. Then when I finally surrender and get comfortable on my back, my chin starts tingling and spasming like crazy! It’s really annoying, although I suppose the tingling is a sign of nerve healing? It would be lovely if I got at least partial feeling back in my chin. It still feels numb and a bit foreign.

I’m very apprehensive about going back to school on Monday. Mom will be with me for a while to help take care of me, but I just can’t imagine sitting through class and work feeling like this (physically, emotionally, and mentally). The surgeon’s assistant suggested starting with only class the first week, then half-time work plus class the second week, and then full-time work plus class the third week if I feel up to it. I hope that works out. If it weren’t for the revision surgery, my recovery wouldn’t be this far behind. Oh well.

Well then. I think that’s about it. I didn’t intend for this post to be so long, but there was a lot to tell and catch up on! I’ll try to post some photos tomorrow or the day after.

**Edit: I owe Mike a HUGE thank you for his patience with me during this steroid withdrawal depression. He has been amazing and loving even though I’ve been an absolute pain in his butt driving him batsh*t crazy.

Also, thank you to everyone who has sent flowers, care packages, and cards. They really mean a lot and brighten my day ❤

Post-Op: Made It to the Other Side… Again!

Hello! I am going to try to get this in before my most recent dose of Dilaudid (narcotic/opioid) kicks in.

I made it to the other side and am feeling okay (thank to medications). We did not have the same post-op low blood oxygen level scare this time, fortunately. Also, I did not wake up with an NG tube (yay!) and they removed my nasal trumpet in recovery when I was still coming out of the effects of anesthesia.

I wonder if it might be interesting for some of you to know the step-by-step story of what it’s like going to the hospital for surgery. Before the 18th, it was something I was totally unfamiliar with.

First, I checked in with somebody in a pre-op/surgical waiting room. They gave me my ID bracelet, took down my parents’ and Mike’s names and phone numbers, and escorted me and two of my guests to a pre-op room. There, I was weighed and asked to give a urine sample for a pregnancy test. I changed into a gown and the nice little anti-skid socks provided by the hospital and relaxed in bed while many people (my surgeon, my pre-op nurse, the anesthesiologist, some lady from hospital registration, another nurse, my surgeon’s assistants, and maybe a nurse anesthetist…am I remembering everybody?) came to ask me questions and have me sign papers. They started the IV on the back of my hand/wrist with some solution with ringer’s lactate (sugar-salt water) and an antibiotic. Last time, they gave me an Afrin spray to open my nasal passages (since I would be intubated through my nose). This time, they used a syringe and dribbled some kind of pharmacological fluid into my nose (slightly less pleasant). Mom, Dad, and Mike rotated through the two guest spots so that they all got some time to be with me before I was taken away and so that they were all able to eat some lunch.

Then, somebody injected a lovely something into my IV that made me feel like I had had a few glasses of wine. I said goodbye to my two guests (today it was Mom and Mike; last time it was Mom and Dad). They rolled me in my hospital bed down a hallway into a very cold room (the OR). I can’t see very well without my glasses (probably not such a bad thing) so I didn’t see any of the instruments in the OR. There were familiar faces–my surgeon, his two assistants, the anesthesiologist, a nurse–and they assisted me in scooting over from my bed to the operating table. They covered me with warm blankets (so soothing!) and stretched my arms out on “arm boards” I think they were called and gently strapped me down. They injected something else into my IV (I think?) and put an oxygen mask over my face. They asked me to breathe deeply and said I’d be going to sleep soon.

Next thing I know, a nice nurse in recovery loudly said my name and told me that it was over and things were fine. There is a bandage on my head, wrapped around my forehead horizontally and wrapped from the top of my head to under my chin vertically. There are elastic bands holding my jaws together (one in the middle from a screw embedded way up in my top gum to a screw embedded way down in my bottom gum, and one on each side) and the muscles are so irritated that my teeth seem practically sealed shut! The nice nurse gave me several small doses of pain medicine as the effects of the general anesthesia wore off, so obviously he is one of my good friends now, haha. My parents came to see me, and then rotated so that Mike could see me, too. Last time, this is when I kept wanting to drift off to sleep but people kept loudly commanding me to take deep breaths (to get my blood oxygen levels up). In recovery, I was fairly aware of what was going on, but it was easier to keep my eyes closed. I had my parents fooled 😉

After a while (not sure how long I was in recovery–1 to 2 hours?), my bed was rolled to my private hospital room where more nurses introduced themselves and set up my IV for more fluids and more pain medication. (Last time, I was taken to a step-down unit). Every so often, somebody comes in to take my vitals (blood pressure, temperature, pulse, blood oxygen). My nurse comes in every few hours to give me more Dilaudid, have me do an antiseptic mouth rinse, and escort me to the restroom. I have an oxygen mask to use as I desire. Mostly the cold air feels good on my face, which gets achy from time to time and has weird nerve sensations (today my chin feels like somebody is pressing an electric toothbrush against it). My parents were here for a while, but went to a hotel for the night to get some good rest (they’ll be driving us home tomorrow). Mike is staying in the hospital with me again, for which I’m very glad and grateful. It’s such a comfort to not be alone in the hospital.

I can’t wait to get that cold “jaw bra” on tomorrow after they remove this dressing from my head. It’s going to feel absolutely glorious.

Tomorrow, I’ll give some more details about the “de-briefing” that my oral-maxillofacial surgeon gave my parents and Mike post-op and will post some photos as well. The drugs are kicking in and I feel this enormous, unstoppable urge to sleep. Thank you everyone for your thoughts, prayers, and positive vibes. Much love to you and yours during this holiday season.

Post-Op Day 11/Pre-Op Day 0: Something to chuckle about

Before we leave for the hospital, I wanted to share one of my favorite YouTube videos that makes me laugh every time. Over the last week and a half I’ve felt this way several times, and not only right after anesthesia 😛 I can especially relate to the sitting up and roaring, then collapsing exhausted, asking if this is real life, and asking if it’s going to be like this forever. Bless this kiddo’s heart.

10 Days Post-Op/1 Day Pre-Op: Feeling More Chipper

The depression from the lack of steroids has gone for the time being, thank goodness; it’s absolutely debilitating. I am not at all looking forward to going through it again, but at least I’m prepared for what it will feel like.

I’ve finally (FINALLY) found a couple of staple foods to get in some major Calories: Welsh rarebit (just the Stouffer’s cheese sauce thinned with a little milk and chicken broth) and peanut butter-chocolate-banana milkshakes. I also have found that Gatorade is much more appealing than juice at this point. My parents and Mike have been frustrated at what little appetite I’ve had, and I’ve been frustrated, too. It’s not that I don’t want to eat and get good nutrition; it’s just that my cravings change so much from day to day and even hour to hour, and I often have very little appetite for liquified food.

Today I felt well enough (after being in and out of sleep for several hours in the morning/early afternoon) to go with my parents and Mike to find some snowy owls. I think the shower and fresh air were good for me! Yet, the cold air caused some unusual and uncomfortable (but brief!) sensations in my face. Then, after eating my Welsh rarebit, a dear friend came by for a quick visit. She became my best friend in 7th grade, and it was lovely to catch up and hear about her family.

I’m still quite numb on my chin and portions of the right side of my face. I have been having a sort of squeezing/throbbing sensation deep in my chin that I suspect is due to the branches of my trigeminal nerve (cranial nerve V) healing. Sometimes a light touch on my cheeks gives me the sensation of pain, which I suppose is also due to the nerve damage. The stitch on the underside of my upper lip is also giving me grief; too bad that’s not numb, haha!

My nose has finally mostly cleared, too. For about a week post-op, I had to go through several steps to feel I could breathe at night. First, I used a q-tip dipped in hydrogen peroxide to gently clean the insides of my nostrils (only as far as the cotton goes, no deeper). Then, I sprayed a saline mist into my nostrils. Next, I squirted one spray of Afrin in each nostril. Finally, I applied a Breathe Right strip. Without that routine, I felt like it was difficult to breathe (through my nose because of congestion, through my mouth because it was banded shut and my swollen lips covered the openings between my teeth).

Of course, a lot of these improvements will be back to square one after tomorrow (Monday). Oh well! It is what it is. They’ll be re-doing the BSSO portion of the surgery, then I’ll hopefully be finished (there is always a small chance that I’ll have a future need for revisions). Send positive vibes, think positive thoughts, and pray that they’ll have my tiny little condyles seated perfectly in their fossae so that they can move my mandible the correct distance to correct my overbite!

I’ll ask Mike to update the blog again as he did last time. Thanks everyone for the thoughts, prayers, care packages and flowers.

8 Days Post-Op: Complications

I had a follow-up appointment on Monday that went remarkably well! They were impressed with how hydrated I’ve been and my diet, though they wanted me to add even more Calories in because I still wasn’t consuming enough to maintain weight. Good grief! It’s really difficult to maintain weight on a liquid diet! They changed the 3 elastic bands holding my jaws together and let me brush the insides of my teeth. They clarified that they want me to brush the outsides of my teeth 4-6 times a day! They also reminded us that I should be taking in liquid (juice, Vitamin Water, or Gatorade) every hour and a small meal (like Boost or Ensure meal supplement drinks) every 2 hours. Living this way is exhausting and annoying. By the time I finish drinking and brushing my teeth, it’s time to start drinking again. I hate the taste of juice with leftover toothpaste flavor.

Another thing I’ve been struggling with is constipation from the Lortab (hydrocodone + tylenol). Colace and prune juice are helping minimally. It’s a pretty crappy situation 😉

To add to the above, the steroids given to me in the hospital are wearing off and I’m feeling more bummed out about everything. One thing that’s been making me sad lately is the fact that my lips may have reduced sensation forever, only because it makes kissing my terrific boyfriend feel different. It’s been such an important thing for me to be able to kiss his hand, cheek, forehead, or lips. Now, though, I don’t get the same tactile feedback. It makes me sad. Numbness was once the least of my pre-op concerns, but I hadn’t thought of the consequences in this context before.

Something weird and unexpected is that I’m not bothered by my different “look”. Pre-op, I was most concerned that I would be freaked out by my new face. I don’t know if it’s that I feel I look better or it looks natural, or if the numbness of my chin makes it feel like it’s not really me, or what. Bizarre.

Now for the bad news. I broke the center elastic brushing my teeth on Christmas Eve and my surgeon wanted to see me on Friday (today) to replace it. I voiced some concerns about my lingering overbite (which I expected to be mostly if not totally corrected by the surgery). After a physical examination and a scan, the surgeon determined that there had been a relapse, which he had never before seen in his decades of performing complicated orthognathic surgeries. The only reason he can think of is that there was swelling in my jaw joint when they performed the BSSO portion, because when the operation was finished everything was perfectly aligned and now (now that a lot of the swelling has gone down) when I jut my lower jaw forward everything is perfectly aligned. Solution? Another surgery. ASAP. While the incisions are not yet fully healed. So I’m scheduled for a one-hour time slot in the OR Monday afternoon to redo the BSSO, and another night spent recovering in the hospital. It’ll be like déjà vu. I’m not too bummed about the surgery (it’s easy for me, after all: They just put a mask over my face, I fall asleep without realizing it, and wake up later with a little pain and swelling), but I am bummed about having to have the darn NG tube and nasal trumpet removed again, and another month and a half of liquid diet starting over on Monday. On the bright side, at least I’ll get the steroids again? Ha.