§ ¶Gee, Your Hair Smells Terrific!
Inspired by my first shower in a week and a half, I had a flash back to that shampoo manufactured in the mid-1970s by Jergens called "Gee, Your Hair Smells Terrific." I had a friend who used it, and I have to admit, her hair DID smell terrific! I still remember the Who's On First-like conversation we had when I asked her the name of her shampoo. Out of curiosity, I Googled it to find out what happened to it. Apparently it was available into the 1980s but then the company stopped making it - in the US, that is. It's still being made and sold in the Philippines, and it's possible to order it online. I think for now I'll just settle for the fantasy that someone said that to me today. Unfortunately, after being all cleaned and de-frizzed, I've nowhere to go, and Aaron has a poor sense of smell!Obviously, if I showered, that means the doctor gave me the go-ahead. I almost didn't get to see him, thanks to some scheduling snafus. There was no way I was leaving that office without getting clearance for all my restrictions!
Dr. Hirsch looked in my ear through a microscope, and said that there's blood behind the eardrum - which is to be expected, and one cause of my pain. The reason my jaw hurts - I've been unable to open it very much; I couldn't even eat a hoagie the other night - is because my mouth was opened wide for the anesthesia. Jaw/joint pain can affect the ear as well. He recommended using a heating pad and taking some Motrin 20 minutes before meals. As one would expect, all the pain I'm experiencing should get better with time. It could take at least three more weeks before I'm feeling more normal. He reminded me that this was pretty major surgery - my head was cut open. There's still swelling and risk of the area not healing right - which is why I have to be careful when doing certain things, like exercising. Apparently the blood in my ear will drain out, either through my ears, nose or throat. What a lovely thing to look forward to!
The doctor took off the tape that covered my stitches, and said the area is flat and the scar is good. I'm to put some antibiotic cream on the stitches twice a day until the area feels smooth to the touch. I asked about the yellow on my neck, which I attributed to a Betadine stain and have tried everything to get rid of. Turns out it's not Betadine - it's blood in the skin. In other words, nothing I can do but wait for it to go away.
My mom came in the day before surgery and stayed until Wednesday afternoon of this week. Between Aaron and friends, I had help through the appointment today, and now I guess it's back to reality no matter what pain I'm still experiencing. At this point it's intermittent throughout the day. On Wednesday, I don't know if it was from going up and down the basement stairs doing lots of wash, but I ended up having to relax on the couch for the whole afternoon due to bad pain in my ear.
Even though I have a shaved area and hair that takes forever to grow, the rest of my hair covers it. If you look at me, you can't tell that I've had anything done there. If I were to put my hair in a ponytail, it would be noticeable. By the time I get used to not having any equipment on that side of my head, it'll be time to start wearing my processor. Now that I've gotten through the surgery and am slogging through what seems like an endless recovery, I'm starting to get a little excited - albeit apprenhensive - about what lies ahead. Activation is April 20.
§ ¶Counting the days until a shower...
Days 3 and 4 post-op were spent like this: Take drugs, lie on couch, sit on couch, go to the bathroom, sit on couch, lie on couch, try a new position only to return to the original, take drugs, try to nap in only two available positions, and well, you get the idea.I think it was Saturday when I realized that the nausea was better. I also scaled back to Motrin, which doesn't help all that much but probably takes the edge off. I went to bed last night without taking a dose, had trouble falling asleep and then woke up at 2 a.m. in a lot of pain.
The dizziness also seems to be dissipating. This morning, I decided to venture outside of the house for the first time since Wednesday. When at the store, I experienced some lightheadedness and found it difficult to focus. I guess I still have to be careful and take it easy. I'm still weak, and have this strange sensation on the left side of my mouth (the same side as the CI) that feels like Novacaine is wearing off. I also still get pain in my ear/head. Sometimes it comes in waves, while other times it's more constant. It still feels like it did the day of the surgery, like a knife or needle is going in and out of my ear. I've asked several friends who have already gone through this process about these side effects. The one bit of good news is that everything I'm feeling lines up with their experiences; apparently I'm "progressing" along just fine. The bad news is that some reported experiencing dizziness and/or pain for at least two weeks after surgery, if not longer.
I've taken a couple of baths but still haven't been able to wash my hair. My head is NOT happy! We might attempt to do it over the sink tomorrow night. It'll be a laborious process, since we'll also have to dry the left side without getting my stitches wet. Needless to say, I'm counting the days until I can take a shower!
Advanced Bionics was nice enough to send two Bionic Buddies for the kids so that they can better understand what I'm going through. Bionic Buddy is Advanced Bionics' mascot - he's a monkey who has a CI himself. The kids each got a Bionic Buddy coloring book called The Adventures of Bionic Buddy, as well as a DVD (basically a narrated version of the coloring book). Samara asked to watch the 11-minute DVD today and then wanted to watch it two more times. She probably would have watched it on an endless loop if I hadn't turned the TV off! She brought Buddy to school yesterday and slept with him last night. One night when Aaron tucked Samara in, he mentioned that people take their CIs off at night. She promptly took off Buddy's CI and put it in a safe place. In the morning, she immediately retrieved it and placed it back on his head.
§ ¶The bandage is off!
Day 2 post-op: This may actually have been worse than yesterday. I've slept the majority of the day, and when I'm awake, I feel nauseous and dizzy. When Aaron came home from work, he took my bandage off. My ear feels weird - it's all dry and crusted on the inside and black and blue and itchy on the outside from being bound. Aaron says the shaved area is small and less than the width of a razor blade. All I know is it's bigger than I thought! When Aaron took the bandage off, Samara said, "Now she looks like a real mommy again, but not by the ear."We called the doctor's office to ask a couple of questions. Apparently I'm not allowed to wash my hair until after I see him in a week! I wasn't expecting that. Aaron's going to try to find some "dry shampoo," but still - eew.
§ ¶Surgery
This is my first time on the computer since Tuesday. For those of you who know how addicted I am to email, you know that means I really haven't been feeling well! I'm still out of it but will attempt to provide more details about my experience so far.I actually slept fairly well the night before. We were in bed by 9:30, and I slept more or less until 4 am, when Aaron woke me up with his violent coughing (he has a cold). I got out of bed at 4:45 to shower, as I'm not allowed to for 48 hours. We were in the car shortly after 5. The last time we left the house at that hour, I was in labor with Doran!
We went to the Ambulatory Surgery waiting room, and a few minutes later, I was called into admitting. I cracked sarcastic jokes throughout the morning, but can't remember what they were. Aaron said at one point that we should write them down. I joked, "Yeah, and make people guess what was said before and after anesthesia."
What I do remember about the morning was that it involved waiting - lots of waiting - which only fueled my nerves more, and resulted in many trips to the bathroom. In the pre-op area, I had to strip down to a hospital gown and socks with traction soles. One of the nurses asked if I wanted to watch TV. I asked if it was captioned. When she said no, I think she realized the irony. Not that there's anything good on TV at 6 in the morning anyway. Aaron said listening to the local news repeat the same stories over and over again was maddening.
We had paperwork to fill out and questions to answer, and more waiting. Normally when moved to the anesthesia room, patients are on their own from that point forward, unless they're a minor. Aaron was able to come with me as my interpreter. When they started wheeling me down there was one of the times I got emotional. I had already said several times that I didn't want to go through with the surgery because of the surgery itself. There were curtains that separated each patient, but I could see the people diagonally across from me. One of them was a young man who was literally green and looked like he was on his deathbed; Aaron overheard them talking about him getting a transplant. Clearly there were other people there for much more serious procedures than mine.
The anesthesiologist walked back and forth my cot a few times, having difficulty reading the numbers on the wall, and then he realized I was the patient he was supposed to see. I told him he could keep on going. I made it clear that I wanted anti-nausea meds in the IV as well as warmed saline so that I wouldn't shiver uncontrollably upon waking up. We told him that I vomited violently after my trauma surgery and wanted to avoid that experience this time around. An IV was put in my arm.
Dr. Hirsch then came by with one of his residents or fellows (not sure which). I said I had a bunch of questions but most could wait until after. He said to go ahead and ask them now since I would be feeling the effects of the anesthesia afterwards. My main question was how much hair was he going to shave. With a straight face, he said half of my head. More seriously, he said it would just be a small area and not noticeable.
Then before I knew it, it was time to go off to surgery. This was another time when I got emotional. Aaron and I said our I love yous, which seemed to happen all too quickly. In the OR, they started putting electrodes on me, and then I was out. Waking up in recovery was a lot more smoother than I anticipated - at least compared to my childhood memories of being woken up after having tubes put in. They gave me pain meds and anti-nausea drugs several times as they didn't seem to be working. I also had a few ice chips. I kept saying I wanted to see Aaron, and eventually, was brought up to the holding room.
In the holding room is when I felt even worse. It felt like the whole left side of my head was bashed in, but all I could think of was how nauseous I was. I had a few waves where I almost threw up, and two times I did. Every time I sat up, I had to sit back down again. Dr. Hirsch visited a couple of times. I slept for a while. The drugs didn't seem to work. We aren't sure if I wasn't given enough anti-nausea drugs because they thought the surgery would be shorter, or if I'm just especially sensitive to anesthesia. I want to find out what was used so we know for the future (but hopefully there won't be another time!).
I almost ended up staying overnight at the hospital, because it didn't look like I'd be able to get out of bed or do anything without puking. I really wanted to go home, because I knew if I stayed at the hospital, I wouldn't get as much sleep with them checking on me all the time. Eventually, I was able to walk to the bathroom and back. At that point, I was feeling better and was able to get dressed and be discharged soon after. We left the hospital around 6:50! I certainly didn't expect to be there that long, nor have such a reaction to the surgery. I'll have you know, by the way, that posting this very flattering picture of me is something I do reluctantly!When I got home, Samara was a little shy to see me with my bandage, but gave me a hug anyway. Aaron referred to it as my "funny hat." I asked if she wanted to cut off all my hospital bracelets. She was so excited to be given a task - especially one that involved using her scissors. She made me a get well card. Apparently Doran was puzzled when my mom went in to get him that morning. He even scooted over to my room to look for me - aww. He was in bed before I got home yesterday and when he finally saw me today, he got upset every time he looked at me and wouldn't let me hold him. Later on, he graduated to smiling at me. I still haven't held him yet, though.
Aaron dropped me off at home and then went to get my medications while Mom heated up some of her chicken soup. I had a little bit but then felt nauseous again. It was a horrible catch-22. I had to take the anti-nausea pill to quench the nausea, but had to wait until I could actually keep it down. I couldn't take the painkiller without food, but obviously couldn't keep any food down without the anti-nausea pill. I took the anti-nausea pill and then took a nap on the couch. Aaron woke me up around 9, at which point I had some soup and crackers. My jaw really hurts, so I can't open my mouth very much. I managed to finish that and take the painkiller, and then went to bed - maybe around 10.
It hurt whenever I moved my head during the night but I slept fairly well until, again, Aaron woke me up with his violent coughing. I sent him out of the room to take some medicine. I got up twice to eat some crackers so that I could take a painkiller, and other than that, slept most of the morning. I finally got some real food in me around 12:30-1, and tried to stay up for a little while before crashing again. I'm very weak and feel dizzy and it's hard to focus. It's hard to know how much of this is attributed to the medicine, lack of food, etc.
Dr. Hirsch called soon after we walked in the door last night. We were able to ask him a couple of questions, including when I can lift Doran. The hospital said no lifting above 10 lbs for a while. Dr. Hirsch said I can lift him earlier, but if I pick him up from the floor, it has to be gingerly and with my knees so I don't tense up too much. We'll have to figure out what to do next week but for now, it's one step at a time. The bandages come off tomorrow evening. I see the doctor next Friday, the 31st.
I feel so much better now that the surgery is over with, but now the next step is getting through this recovery. As I type this, it feels like a knife is going in and out of my ear. I'm trying to switch from prescription painkillers to Motrin, and holding off on the anti-nausea pill, to see if that helps with clarity.
§ ¶All done and finally home
This is a quick post. We were told to arrive at 5:30 this morning, which we did. We were also told we'd see anesthesia around 6:30 (actually 6:45), and Lisa would go into surgery around 8 (on time). On the phone yesterday they said the surgery was 2-2.5 hours long and recovery would be 1-2 hours. It turns out the scheduler was wrong on the first part - the surgery is really in the 3-4 hour range. On the plus side, someone from AB was there and helped them test out the implant extensively before they closed.Lisa spent the full time in recovery and then needed to stay in the holding area until we left at 7. The long time in recovery and holding was due to her heavy nausea - something we warned anesthesia about based on our prior experience. All their precautions didn't seem to help and Lisa needed 3 doses of anti-nausea drugs. After a couple aborted attempts to sit up, we finally were ready to leave.
Lisa will post more tomorrow. Thanks to everyone for their well wishes and support.
§ ¶T minus 1
The surgery is tomorrow, and it's all I can think about. If I had trouble sleeping last night, I doubt I'll have much luck tonight! The hospital called this morning to give us instructions. They requested that we bring my living will/power of attorney. Now that inspires confidence!The surgery is outpatient, barring any complications. The doctor indicated a while back that it's an all-day process. We're to be at the hospital at the ungodly hour of 5:30 a.m. I'm the first one slated for surgery. I may want to shower before we leave, because I won't be allowed to for a while.
Roughly around 6:30, I'll meet with the anesthesiologist. I'll be in the OR by 8 am. The surgery will go to about 10. The time spent in recovery is unknown at this point; it can take 1-2 hours and depends on the anesthesia. Recovery could last until 2 p.m. - under a normal scenario.
I'll have to take my wedding rings off, as no makeup or jewelry are allowed. They recommended packing an overnight bag as a precaution. I'm to have a light dinner tonight and nothing after midnight. I had to stop alcohol and other medications (except for Tylenol) a week prior to surgery.
Mom is coming in this afternoon to help with the kids. Aaron will be with me at the hospital. At least we know from past experience that I have the ability to lipread him when taking heavy painkillers!
Wish me luck!!
§ ¶Timing is everything
Thank you for all the letters of support since I announced my news. It's hard to believe that my surgery is in a few days!Two weeks ago, I actually got an email from my surgeon alerting to me to a recall. I came thisclose to having an implant that has a higher chance of failure. Not exactly something you want to hear so soon before surgery! The company is pulling all units made with parts from one of their suppliers and replacing them with units made by the better supplier (one year cumulative survival rate of 97.5% vs. greater than 99.5%). Aaron and I have since found out more about the voluntary recall and are choosing to proceed with this implant as planned. I'm actually getting the new variation of a tried and true implant that's slowly being rolled out: the Helix. The new difference is the shape of the array; it's pre-curled so that it has a better potential to hug the middle of the cochlea where the nerve fibers sit.
There are three main CI manufacturers, and deciding which one to use is an overwhelming task. Right now, they're pretty much all the same in terms of performance. Aaron was very helpful in utilizing his tech-know-how and ability to parse scientific documents; he helped me wade through all the information I'd accumulated and was able to objectively recommend which company to go with. One company uses disposable batteries, which are appealing, compared to ones that have to be recharged and replaced on a much-too regular basis, but we tried not to look at surface features like those that can potentially be changed. Rather, we focused on the part that will be in my head. And that’s what it boiled down to: Advanced Bionics' technology is more advanced and has more potential in the long-run. It's an individual choice. I wouldn't presume to judge someone else's decision, and expect the same courtesy to be extended to me.
If all of this sounds well and good, but you're shaking your head in puzzlement because you don't know exactly what a CI is, check out this link (it'll explain it far better than I can!): How Implants Work.
And here's a web site that has a simulation of what CI processed speech sounds like as compared to regular sound, varied by channels [Disclaimer: I have no idea how accurate this is, nor do I understand how anyone can truly know what it sounds like to us!]: CI Simulation (Note, I’ll be getting 16 channels, with a boost to 120 in the near future).
The thing is, my hearing aids help me so much that on a regular basis, I hear something new. The other day, I was able to figure out what song was playing on the kids' CD. Another time, I heard something Samara said when I wasn't looking, and confirmed with Aaron that I’d heard correctly. Every time something like this happens, I rhetorically ask, “Who says I need a CI?” Aaron keeps reminding me that it'll give me more clarity. When Aaron and I were first dating I described my hearing as being a glass that's half full with dirty water. With an implant, the water will be clearer, and will fill the glass more. However, it won’t be a full cup of Evian.
Yesterday, I took my left HA out so I could get to an itch. That was nothing new. But as I put the earmold back in, I realized that in a few days, I'll no longer be wearing one in that ear. That'll be the first time in almost 33 years. I imagine it'll take some getting used to!
Aaron will post to the blog after my surgery to say how it went. If I'm up for it, I'll do it myself.
