Wow has this week been a rollercoaster! As I last posted, I had my pre-op appointment Tuesday, November 26th. Dr. Griffiths was very patient and answered anything I wanted to talk about. I went in pretty sure I wanted to have rib graft done, but still wasn't certain. The Sunday before I had had a moment in which I realized that I really wanted rib graft, but had been set on medpor because of the pain and longer recovery time of rib graft. I began realizing that those were not good enough reasons since this decision will literally be part of my body for the rest of my life. By Monday, just thinking about having medpor for my ear made me feel very uneasy. I know enough to go with my gut, but I wanted to be sure there wasn't anything swaying my gut that was unconscious, so I didn't officially decide until later. Once I heard from Dr. Griffiths at pre-op that as far as flexibily between medport, rib graft and normal ear (I knew normal ear was most malleable, but not sure how the other two compared between themselves), which is stiffer. When he said medpor was much stiffer, I was sold on rib graft for sure. I know everyone say either option is comfortable to sleep on after healed, I was something with a little more give because to me, that seems more realistic. It also means that, if rib graft and medpor were both dangerous to fracture, that because medpor doesn't have as much give, it would be easier to fracture. While I'm not planning on doing anything to hurt my new ear, you never know, and I just didn't want to deal with such an increased risk of infection that comes with the medpor. I've had a lot of bad luck with medical issues the past year, so I wanted to lower my surgical risks for this as much as possible. Also, I view my new ear as a piece of artwork specifically made for me by my surgeon, and rib obvious is much more artistic than a medpor frame - even if they do carve the frame some too. Since I went with an experienced surgeon, I wasn't worried about a terrible carving job, so that aspect made the rib graft ear more appealing as well.
Dr. Griffiths also explained why he takes his skin grafts from behind the unaffected ear and the groin as opposed to the back of the head like a lot of surgeons. He explained that while it's all skin, it's like fabric - there are different kinds of fabric and they all look, feel, and act differently. Unlike the graft from the back of the head which tends to look thicker and waxier as it heals, the skin from the groin and behind the ear tend to look thinner and less waxy over time. He went over anything I wasn't sure about and was very good at explaining everything so I could understand - without sounds condescending. His voice is always soothing, calm, and soft, no matter how stressful a situation is, which is very helpful, especially since I'm on my own out here and tend to worry a lot. When I had no other questions, he took more pictures of me from all angles and then marked out the main artery on the side of my head. Next, he made a mold and a template of my good ear to use during surgery to shape the new ear, as well as to create a 3D mold of my good ear (I got to see it the morning of surgery). Lastly, he walked over from his office to the hospital with me to show me where I would check-in in the morning and give me a quick peek of the O.R. and the floor I'd most likely end up afterwards. Then I walked over to the drug-store to pick up my pain killer and anti-nausea pill for after I was discharged.
The morning of surgery I had to be at the hospital at 5:30 am (I had a 5 minute walk from where I'm staying). They did all the typical pre-surgery stuff, and I talked a little with Dr. Griffiths as well. St. Luke's Hospital is a wonderful facility and everyone is very pleasant to work with. They really have things well planned out - they even provide you with a nice tote for you to store your clothes in that I can now use for groceries, etc...instead of large plastic bags which would just go to waste when I got discharged.
I was in the O.R. for 13 hours! The last few hours my Mom was getting nervous and called the hospital switchboard about once an hour to get updates. She made friends with the operator, who also raved about Dr. Griffiths (as all of my nurses did as well - both his work and his personality). After surgery, I went into a vicious coughing fit for about 2 hours. Dr. Griffiths hung around for about 90 minutes because they weren't sure what was causing it and couldn't get it under control and he was concerned. I only remember waking up during the last 30 minutes. They tried giving me oxygen and it didn't help. Finally, someone decided we should try my CPAP machine, it helped some but my oxygen stats still were in the 70s and low 80s (yes, I know, I come out of anesthesia really well to remember these details - it also never makes me at all nauseous, even with all the aggressive coughing). Once they fed the oxygen through my CPAP hose, I got better pretty quickly and was able to go to the floor. Unfortunately to transport me, the CPAP had to be stopped. I was coughing pretty bad again by the time we got to the 5th floor, but once they got the CPAP back on it started subsiding again. However, by then my chest pain was really bad from all the coughing (on top of the pain I would have had anyway from the surgery). The severe chest pain from the rib graft method is not in the ear - the ears don't hurt much at all. The pain is from the ab muscles that are cut to gain access to the ribs. Since basically all movements engage the stomach muscles...voila, intense pain. They do run a very tiny catheter to the harvest site to pump numbing liquid to that site, but the muscles surrounding the area that covers hurt still. I had asked for more morphine before transport, but they said I'd be up in my room shortly and it would be easier to wait. I shouldn't have listened. Once on the floor, my nurse - who was very young and had a terrible bedside manner with no consideration to the pain I was in and the trouble I was having answering all of her questions because of the pain and coughing - and that one caused the other which caused the other - would not answer my pleas for pain medication until we made it through her assessment, which took me about an hour. by then the pain was really bad. Eventually I did get the morphine, but she still seemed oblivious to how much I was hurting and not aware of how she was handling and touching me to reduce causing me more pain. Since I am alone out here, I knew I'd need to stay alert enough and up front enough to do all of my own advocating, so even though I was groggy and hurting a ton, I did manage to talk to the charge nurse and switch nurses.
The next 24 hours were rough. It took us about 36 hours to find a good pain medication combo to start getting "ahead" of the pain. Until then, we were scrambling to try to keep up with it so I was in a ton of pain. Unfortunately the second night, since we still didn't have the pain meds figured out, at one point I was in a lot of pain (A lot of times my head would shake from the pain and/or I couldn't keep my body from continually tensing up from the pain, so I just spent a lot of energy concentrating on breathing as deeping as I could without groaning from pain and relaxing my muscles on the out breaths). My butt also hurt a lot from laying in the same spot for so long ( moving requires stomach muscles so moving is near impossible at first, at least until you figure out some tricks that work for you - the nurses are clueless). I stupidly tried to scoot myself up a smidge to reduce the pain in my butt and ended up causing excruciating pain in my chest. Before attempting this, I had already had my nurse paged for pain meds (that was my only night I had an incompetent nurse - he sounded developmentally delayed and it took him about 10 times longer to get anything done - the other nurse knew that and she was really my nurse all night - all that waiting when the last hour before your next dose of pain meds is excruciating, and a really slow nurse is NOT good). I repaged the tech because of how bad I made the pain. Unfortunately, between the floor I was on in general not being too familiar with ear reconstruction surgery, the fact that my nurse was almost mute (personally I think it should be illegal for him to be a nurse it was so bad), and none of the regular nurses were working because of the holiday, the two techs that came in to help me scoot up didn't know I had had any surgery on my stomach and didn't understand why I began whimpering, trying to keep myself calm so that I didn't cry because I didn't think I could handle the pain that would cause. I didn't know they didn't know, so it was a disaster. I began taking tiny sips of air in and not being able to do much else because of how much pain it caused, which made me begin crying, which only made it worse. Meanwhile, one tech was trying to figure out how my CPAP machine worked (which wasn't even a concern in that moment) and the other one didn't know what to do - probably because she didn't understand how my current condition could be caused from a sore butt from lying in bed. Unfortunately, my oxygen level was going down, my pulse was going up, and I couldn't speak to tell her what was happening. My nurse showed up just in time and around the same time I started to be able to take longer inhales. The techs also started to piece the puzzle together and realized how much pain I was having in my stomach. The female tech held my hand for a while, which helped me keep myself fro getting too upset again. All I really wanted at that point was to cry. I was exhausted, I was in a lot of pain which still wasn't under control, I was frustrated with my nurses that night, and I was scared out of my mind of how much pain certain actions caused me - and of course breathing was one of the really bad things pain-wise. I also knew I needed to work on getting bigger breaths so that I didn't wind up with pneumonia. Later that night, my stats kept dropping when I would fall deep asleep so someone came in to put oxygen prongs in my nose. I was asleep and he woke me up trying to force the tubes behind both my ears. I flipped out. First of all, I have a mold on the reconstructed side that isn't supposed to experience any sort of pressure - I even had to keep my head turned sideways anytime I rested my head against a pillow. Second of all my left ear has gauze behind it from the skin graft site. I did quickly get him to realize I had a mold over my right ear, but he wasn't understanding me when I said it couldn't go over either ear since he couldn't SEE anything from the front that would prevent it from fitting over my left ear and just thought I was cranky and didn't want to wear the mask. It took a LOT of explaining quickly to get him to stop trying to push the gauze out from behind my ear! When I spoke to Dr. Giffiths on the phone in the morning (he was due to come see me soon, but I was still fighting for the right med combo in the morning and the nurses were being really slow while I was laying there whimpering from the pain and they didn't seem to understand how long I had been in that much pain (I had started asking for something else around 3am, and when I finally got fed up enough to call Dr. Griffiths it was 6am, and they had JUST started to try to help me get something different). Before I could even complain about how scary and frustrating and painful the night had been, he said he had heard about some of it, apologized it was so bad, and asked me how the rest of the night went. I didn't whine, but I did calmly tell him how many scary mishaps the staff made because no one seemed to understand why I was there. Dr. Griffiths brainstormed with me and we had the nurses put a sign on the door explaining the abdominal pain and that both ears need to be left alone as well. We also got me a list of all the different meds that were available to me since the nurses hadn't been too good at telling me what I could have and what I was getting (again, having someone with me probably would have helped with some of these issues). He also suggested a new game plan with the pain meds to try and get ahead of the game since we were still behind.
After that, nurses started improving and I was more aware of the fact that I needed to be very clear and specific with everyone who walked in my door about why I was there and that most of my pain was in my right abdominal muscles - not my right ear. After that, the holiday was over too, and a lot more of the regular nurses were back, which also helped. Most of them knew a little about what my procedure entailed. By that point I was also figuring out how to maneuver out of bed without causing unbearable pain as well.
My biggest advice to parents who have a child who is going to have this procedure is to help your child figure out how best to control their pain. Medication is wonderful, but for me, medication made the pain bearable, but still very painful. But, I am a very logical person, so anytime my pain went up, I would consider what I had done recently, what medications I may have or not have had recently And, what helps make their pain better. As an adult, I found this to be very helpful. I figured out the exact steps in which order made it easiest to get out of bed, to walk, to start my urine (yes, that was VERY hard for me, for the first 48 hours each trip to the bathroom entailed about 30-45 minutes trying just to start my flow. By the time I left it took about 5 minutes), etc. With small kids, you can do some lifting carrying as well, but obviously I had to do everything myself (and having someone help pull me up was excruciating because it pulled on my stomach muscles anyway). Towards the end, I also found that I need to keep my right elbow tucking by my side and keep my right forearm at about 90 degrees to the upper arm or else my pain skyrockets. Kids may not make all these connections on their own, and it's great for me to list some of what I found out, but in the end, everyone's body is different, and things that work for me probably won't work for someone else. So, please help your children figure out patterns. If their pain goes up, track what they were doing before hand. If a movement to get up hurts them, ask them to brainstorm to try things a little different the next time and help them remember to keep that change for the following time. These types of things helped my pain immensely!
Again, I am 25 and not 6-10 years old, but this procedure has involved a lot of excruciating pain. And, my instinct to cry a little to deal with it is frustrating because that would make it 10 times worse. So, I would urge parents not to choose rib graft reconstruction unless that is the method your child prefers. Also, if you know your child doesn't handle pain well, I would also highly recommend medpor. If I didn't really want this, I would be furious if I had be "forced" into so much pain. When my pain gets really bad, a lot of times I do wish I could just have them put my ribs back and not have had any surgery. However, I see tons of tiny improvements all the time, and more and more of every day I spend with much decreased pain. The moments when I want the ribs back where they belong don't last long and I try to remind myself of the end result. I usually can get my self back into a determined state of mind pretty quick. Even when I wish I could go back and not have my ribs moved, I still don't usually "regret" my decision. It's just the pain talking, not a regret with my decision. There's just so much pain I would do anything for a break and just get mad and desperate. But it also helps that I got to see my doctor twice everyday in the hospital, and can call his cell when ever I need. After I had my freak out and had the trouble breathing from being upset, he actually told the nurses that if that happened again, he wanted them to call him so he could talk to me. He is an amazing man. Everyone at the hospital raves about him and how good of a doctor he is, how nice he his, and how much of a perfectionist he is. He is confident, but I've never felt he is cocky. He never talks badly about other doctors, other methods, or people who choose to go a different route. He will discuss the differences between everyone's techniques, but not in a derogatory way, just as a way to inform me and what's what. My ONLY complaint so far is that his voice is so soothing, soft, and relaxed that sometimes I feel like he's being fake or is hiding a complication from me to keep me calm. However, after I have those feelings, I either inquire to make sure nothings wrong, hear him say something else that assures me he is being truthful, hear someone else tell me how he's always like that as well, or witness a situation that should make him mad at a nurse, but yet he stays relaxed and gentle with his voice and words (even if even I can tell they should know better). I have these fears, but I think they're more because of my baggage. He is just an amazingly good guy. It's weird, the whole time I was at the hospital, I would think I needed/wanted to talk to him to get a question answered or be reassured and he almost always called me or walked in my door as I was just getting ready to call him. The one time I called him before he showed up, he was in the elevator on his way up to check on me! Even when I call him at home at a weird hour, he always thanks me for checking with him and understands why I could feel concerned. He always ends by telling me if I need anything or have any concerns of questions, not to hesitate to call him. I can tell he means it. Someimes the way he says it makes me feel like he wished I called him even more often! The longer I know him and the more questions I ask him and the more problems I have to work on with him, the more I have complete faith in him. Of course, he's human and could mess up and I do keep that in the back of my mind in case at some point my gut tells me I should be seen and I would go to the E.R., but for the most part, I tend to worry excessively about worse case scenarios with medical issues, so it is great to have a doctor who can do such a good job not only helping to reassure me things will be fine, but to also explain to me what most likely is the cause, what to watch out for that would indicate a more serious cause, and what I can do to help manage the problem. I really can't speak highly enough about him. I'm aware that no matter how talented the surgeon is, that doesn't guarantee all their ears will be amazing. And, even if my ear is not as nice looking as I hope, (although he did tell my mom is looked really good and one of the nurse also told me it looked really good 24 hours after the surgery) I will still be completely pleased with my decision in surgeons because of the overall experience. Because of where I'm at in my life and because I had to come alone for the surgery, working with Dr. Griffiths is the best match for me....heck if the weather's bad or I can't get to his office, he will come here for my post-op visits. He is just so passionate about his work and his patients. And for me, that is more important than having the absolute best ear/surgeon available. Besides for all the pain and the nursing staff nightmares over the holiday, every aspect of this trip has far exceeded my expectations!
And with that, I will break for tonight as it's pretty late and I need to gently get back on a more normal sleep schedule. Last night I slept from 2:30am until 12:30pm. It took forever to find somewhere I could sleep (ended up sleeping sitting on the comfiest sofa ever). i had started trying to lay down and sleep at 10pm, but I had to try many different positions and locations to find somewhere I could tolerate. I also had an alarm set to wake me up every 4 hours to take my pain medication. By the last alarm, I knew exactly what to do when I heard it. It's 11pm now. I will have some food, take my meds, and hopefully be on the couch trying to sleep within the hour.
I have a LOT of pictures to upload and obviously more belated updating to do. I know I wrote a lot in this update, but I feel that especially for parents considering this procedure for their child, I needed to let them know of a lot of these minute details. No one told me about them and I really wish someone had. I read a lot of blogs before my surgery. Many were very good until the day of surgery and then faded off unless they encountered a complication. My goal is to be detailed and share a lot of pictures as well. I want my friends and family to experience this process with me even while I'm so far from home. I want other families and individuals to be able to hear a lot of small details about the surgery and what I found did and didn't help. I want to provide information about how I found I worked with my surgeon because in ear reconstruction, the right surgeon FOR EACH INDIVIDUAL is most crucial. While there a many many bad surgeons out there, there are a good handful of really talented ones. There are also some "really good" ones that may not be quite the "very best" in this country, and/or just not be as well known as the very best. Also, everyone's body may work best for a different surgeon's technique (and for those of you who don't know, the process varies GREATLY between surgeons since it really is such an artform). All surgeon's ears also have very signature looks, and while one family may find one surgeon's ears very aesthetically pleasing, not everyone will have the same opinion. There's also the factor of cost - not just for the surgery, but for travel and lodging. For me, even if I had wanted to use Dr. Lewin or Dr. Brent in California, I probably could not have afforded the airfare or lodging. I have also heard that Dr. Griffiths costs are about half of the cost of Dr. Brent's. For me, my insurance paid (I know how blessed I am, I feel so lucky about that!) so that wasn't an issue for me. But for a lot of people cost is very prohibitive. If they can use another doctor who also has good results consistently - maybe not as spectactular as Dr. Brent's but still WAY above any local surgeon's - then they may be able to provide their child with a great looking ear without putting such financial stress on their family. Ear's are great, but we can only skimp on so many things to afford these surgeries - especially since they aren't typically a life of death procedure.
Basically, the process of picking a surgeon is extremely hard and very personal. Since there aren't as many reports and reviews from people who have worked with Dr. Griffiths as there are for the top Doctor's in the field, I really want to help others learn about other options who might fit with their specific needs better. It was frustrating for me not to find many reviews on the different "big names" besides what those doctors posted on their own sites. I want to give back as much as I can, and this is one way I may be able to help others. I figure that I have had a boatload of help in my life - and even in affording this trip and procedure. So my way of contributing can be to help educate others to the best of my ability. Please don't hesitate to contact me if you have any specific questions about me, the procedures, or my medical providers. I will not be insulted, I will take the time to help you, and I will be honest, you have my word. It would be my honor to pay it forward by helping anyone on their own journey.
And for all of my friends and family. I have also has so so much support and help from ALL of you recently. I am so lucky to have such a large support network, but that also means there's SO many of you who want to know all about how I'm doing and what's going on out here. Also, some of you want more info. than others. I am not writing this instead of email or calling you all because I don't want to talk one on one with you all, but rather I just don't want to repeat the event details over and over because then not everyone will get the full story because I will get tired. I can also give you more complete details this way, even if we're not able to find a time to talk on the phone, or I'm not feeling up to talking one day. However, that does NO mean I don't want to hear from you all -calls, emails, texts, etc. But we can have more meaningful conversations if I don't have to spend 5 hours catching you up on this journey I'm on out here. Instead you can ask detailed questions or things that aren't clear and I can have time to ask about and support you in your life as well. In short, I'm doing this so that when we do talk, we can have more intimate, supportive talks, rather than just scratching the surface on what I do everyday and what new progress I made. SO MUCH goes on everyday right now that it can be frustrating to call home and try to recap a day because it takes like an hour or two to summarize...that's how quickly things are changing and progressing!
Okay, bedtime. I will continue bringing everyone up to speed and get some pictures up tomorrow! I have them uploaded on my netbook and edited, so it's just a matter of uploading them to the blog!
Love,
Katie
