Wednesday, September 10, 2014

Recovery

As you all know, I had my surgery on September 4th (so, last week). It went well, albeit longer than anticipated. Mom, Annalea and I drove down to UVA at 4am as I had to check in by 5:30am. We got there, mom and I were taken back fairly quickly, and then we waited. I, of course had to pee and I wasn't allowed go till I was offered a pregnancy test, since I am of child-bearing age. Understandable, but we were so confused as to why I had to wait (and get in my gown first), till it was all cleared up. The 'robe-type-thing' was actually rather comfortable. I don't know if they have a one-size-fits-all or if they just make them larger than needed so they blow out like a balloon when filled with hot air, but it overlapped in the back and had lots of little places to attach the tube for blowing hot air into the gown. I think it's called 'Bear Paws' or something like that.

For those who have been fortunate enough to never "see" the inside of an OR, the reason for this is they have to keep the room chilled - bright lights, clothing layers (for the doctors, nurses, etc) and temperature requirements for certain equipment - so, unconscious, inert body = opportunities for dangerously low core temperatures. Thus, the hot air robe.

Next: The Waiting Game - and IV (I spent most of my time waiting trying to warm up the back of my left hand - I figured, surgery on right side? IV in left hand. And I'm dehydrated, cold and anxious - have fun trying to stick a needle in my veins...). The IV went in the first time, but why numb the hand? It doesn't work. Just say, 'this is going to hurt a little' and get on with it.

Next: 20 Questions (often the same) from multiple people. "When was the last time you ate?" "Drank?" "Took medication?" "What's your name? DOB?" "What surgery are you having done today?"
I saw a regular PACU nurse (recovery room), the anesthesiologist resident (who did most of the explaining of what would happen in the next hour or so), an ENT resident, Dr. Kesser and another ENT resident,  one of two of the OR nurses, and I think that's it.

So, this is what I was told would happen, by the anesthesiologist resident (who's from Germany and who's girlfriend is from France - or at least studied in France). When they get ready to take me back, they would push a 'cocktail' into the IV (my IV had lots of ports to they could 'push' or insert meds without having to stick me again) that would make me feel a bit woozy. Then, they would wheel me back to the OR and get me situated on the table and push the anesthesia. After I was asleep, they would put the breathing tube down my throat and get started.

Dr. Kesser told us he thought the surgery would take about 4 to 4.5 hours. We knew the OR was booked for 6.5 hours just in case (the nurse had told us that earlier).

Well, I remember the 'cocktail' and mom leaving, and vaguely remember them getting my bed ready to roll out of the room, and then __________________________ nothing. Nada. No descriptions of the inside of the OR I'm afraid. Oh, well. It's not like I haven't seen the inside of one before - just been, you know, 11 years.

First memory after surgery:
"Oh sweetie, your really sweating. Do you want to change to a cotton gown?" Head nod and a possible mumbled "yes" but not really sure. Don't remember how she switched gowns, or if there was anyone else in the room. Oh well. "Do you want us to bring your mom and sister back?" "Yeah."
Lots of other conversations happened and apparently I was a lot more talkative than normal, but I don't remember most of it. I do remember hearing my surgery had been 8 hours long. So, just about double the time. Apparently I did really well (mom kept getting updates from the OR nurse every couple of hours) and Dr. Kesser felt he could get all of the Cholesteatoma and do reconstructive surgery all at one go. So, that took a bit more time. Also, he opened up my Mastoid bone area, which is where I had cholesteatoma before, to check it out (it was fine, so Dr. Lee did a good job with the first surgery). That proved a bit more difficult than normal because of the way the blood vessel I have going through there is positioned. So, that took more time.

I spent 4 hours in the recovery room, though it did not feel nearly that long. At first, I did well. Then I started feeling nauseated and dizzy, so they pushed some more pain meds and something to help with the nausea. I wanted to go home, but they did talk about having me stay the night (that's apparently the norm for 8 hour surgeries). I knew the hospital bill would already be a lot and didn't want it to be any more than necessary. And, I didn't want to spend the night in the hospital. I knew I would be more comfortable at home, with mom (who's a nurse). After things settled down a bit, they unhooked everything from me and I dressed (with help) and was wheeled to the bathroom. After successfully navigating the bathroom on my own, my IV port was removed and I was discharged.

Due to my unsettled stomach, we were given some barf bags (ingenious little things) for the car. They are composed of a plastic ring around the top of a long narrow sack, with a little overhanging rim that has little notches cut out of it. So, when you puke, you just twist it off and hook it in a notch and, Tada! Spill proof. I did throw up once in the way home, but thanks to the meds I was given, it wasn't acidic.  That was quite a relief, I must admit.

My first night home, I slept in bed with lots of pillows propping me up. All the other nights and days have been spent in the recliner. Mom took the pressure bandage off from around my head on Friday afternoon. I have a little brush burn line across my forehead from that. Sunday I got my first shower since Wednesday night. Mom helped because I have to keep a cup over my ear to prevent getting my bandages wet. Sunday night was awful. I had been doing a bit better during the day, but had more trouble falling asleep. I did fall asleep sometime after 12am and was awoken by pain around 4:30. I took a pain pill and tried to relax to relieve pressure build-up in my ear and across my cheekbones and ridge of my nose. It didn't work. I tried laying down in bed. Didn't work either. I got a cold, damp washcloth. No help. I tried to cry to relieve the pressure, but physically was unable to cry. I finally knocked on mom's door at 5:45ish and started bawling. That helped quite a bit. Mom stayed on the couch the rest of the night and I finally got some restful sleep.

Yesterday went better again. I'm actually starting to feel bored. And not sleep so long in the mornings after breakfast. I slept in bed last night (with just a little elevation). And now I'm writing this up.

I have an appointment on Friday and will know more after that, but right now, because he was able to do reconstructive surgery, Dr. Kesser believes I may be able to just have a CT scan in 9-12 months rather than a follow-up surgery :) We'll just have to wait and see...

Tuesday, August 19, 2014

Negligence... Sorry

Well, it's been over two months since my last post - and I apologize for that. Admittedly, though I may not have had time the 10 days or so after Michelle left, I have had time since returning to the States that could have been spent posting here. Oh well. The task seemed daunting and rather than just committing to one post a day, I ignored my blog completely. So, I do still need to finish writing about my travel time with Michelle, but that will have to wait for another day. No, this post is an update about my cholesteatoma.

On July 25th I had an appointment with Dr. Kesser at the ENT clinic with the University of Virgina (or UVA). It went really well. I feel positive about his experience and expertise and hope to make a full recovery. He was able to use my CT scans, which was a great relief, meaning I didn't have to have any more testing done before scheduling a surgery, and I now understand what I'm looking at in the images. Woot! Essentially, the Cholesteatoma is throughout my mastoid bone and has filled the space behind my eardrum, encompassing the three little hearing bones. Thankfully, it looks as if the growth has not spread to my cochlea and there is a nice thick layer of bone between the growth and my brain.

Surgery is set for the 4th and the procedure will be much like my previous one - though a bit more intensive, as the growth is more widespread.

How I understand the process of my surgery:

-incision made behind ear and ear flipped over to the front.
-remove eardrum (which has a puncture anyway)
-clean out cholesteatoma (not sure how all this will be done), avoiding the facial nerve and nerve connected to taste buds if possible
-inspect hearing bones: clean and replace if damage allows, permanently remove if damage too severe
-create a tissue graft from incision behind ear to replace eardrum
- pack ear canal and replace ear, closing off incision
-bandage outer ear

Then, 9-12 months later I'll have a routine follow-up surgery to check for new growth. If there is no new growth, and if the hearing bones had to be removed, Dr. Kesser would perform reconstructive surgery and put in a prosthetic in place of the bones.

All in all, there is a possibility of decreased hearing for 9-12 months but the prognosis is positive and it would not be permanent. Unless the surgery is botched or the growth has spread to the cochlea since the CT scan - then it is a possibility, but not probable with the known evidence.



Tuesday, June 10, 2014

Venice: Day 5

Today was our last day in Venice :( We've had a great time and are sad to leave, but I think we are happy with our time here as well. We started our day by rising at the crack of dawn to see the sunrise, and though we didn't have the best vantage point, we still saw a different side of Venice. Only people who were up to see the sunrise and those getting ready for the day (restaurant owners, trash collectors, delivery persons, etc) were up and about. All the  shops were closed and it was silently calm. Well worth the early wake-up call. And, of course we went back to bed for a few hours afterwards. When we rose for real, we ate some breakfast and walked around some of the lesser explored parts of Venice before getting ready for our gondola ride and dinner.

We made that into quite the process, just for the pleasure of it. I had looked up directions for both the gondola ride and the restaurant, but that was pointless. Google maps, you let us down... We got lost within the first few minutes because the street we were supposed to turn onto was not located where it was shown... hmmm.... Thankfully, we had our handy-dandy foldout map and  got there with time to spare. Of, course it was at this point that I realized we needed both copies of our voucher (one for the gondola and one for the restaurant) and the second was back at our apartment. So, I walked into the nearest hotel and asked if I could have a photocopy made. The person at the desk gave me an unpromising look and I asked, "Can I pay to have a photocopy made?" He looked over the voucher and took it back to the copier, and didn't charge me a centime.

The gondola ride was lovely. We were in a 'fleet' of 5 gondola's and we had an accordion player and opera singer serenade us (they were on another of the gondola's and once we entered the smaller canals and the acoustics came into play, we were quite glad of this. After the gondola ride we decided to find the restaurant and then walk around a bit. I'm glad we went to the restaurant first because we couldn't find it... for a long time. We finally asked at a hotel and they gave us directions and as soon as we exited, we couldn't agree on what we had been told - so we went the way Michelle thought, then the way I thought it was - we finally found it and it had been right under our noses the Entire time. Figures. Granted, nothing is straight in Venice and is was tucked away a bit.

For this day, we have two videos - and, you may notice some similarities between the two...
So here's our Sunrise and Gondola Ride link and video


And here's our Get ready with us link, but it won't let me embed the video right now - will try again another time.





Venice: Day 4

Today was a 'free' day, aka we didn't have anything scheduled - we just decided what we wanted to do and did it. So, we went up the bell tower on the Island of San Giorgio (rather than the one at San Marco square) at the suggestion of our host, Laura. She had said that the view is better, the line was smaller (uh, non-existent), and it cost less. It was well worth it. We also ended up just sitting on the steps by the water for awhile as well. After taking the water bus back to the main islands of Venice, we made some lunch and got ready to head to Lido and the beach!!! We didn't get there till about 6 (we were waiting for the wrong water bus, but oh well) and stayed till about 8, so the water didn't feel quite so much refreshing as just cold, but we did get in (don't worry - I didn't get my head/ear wet). We had a wonderful time other than when some creeper started bothering us (well, mostly Michelle). We tried to be polite at first and just walked away, but he kept following us. Finally we got out of the water and laid on the beach to dry off. And he came and put is towel down next to Michelle. He proceeded to touch her arm - she said "Hello" and he took his hand back. Moments later he touched her arm again and she said, "Can I help you?" and he left his hand on her towel. I saw this and told him to move his hand - about 10 times. I finally said "Take your hand off her towel" and he finally listened. You'd think that he would get the hint by then, right?... Michelle and I were in the process of discussing what we would do if he touched her again (Michelle said, "You will have to bail me out of Italian jail because I swear I will punch him"), when he touched her arm again. Michelle busted out in her Spanish and was telling him off and he just down-played it saying, "okay, okay. I won't touch you." But he had gone too far long ago. At his point I said, "No, it's not okay. You need to leave." And he continued to say, "okay, okay, I won't touch her. I'll just lay here." We wouldn't have it. I said, "No, you need to get up and leave. Now." He did, but he took his good old time about it. After he left we had a pleasant time walking around, taking pictures and filming.

So, here's the link to our Bell tower and beach day



Monday, June 9, 2014

Florence Day Trip

Today we took a Florence day trip. At first we were a bit worried that we would regret leaving Venice for a day, but I think it was well worth it. So, in the morning we got up and ate breakfast and left about an hour before we needed to be there in case we got lost - and we didn't. In fact, we got there in less time than Google maps said it would take - woot. So, we walked around a bit and then met our contact at the rendez-vous point. After getting our train tickets and bus tour voucher, we got on the train and spent the next two hours traveling to Florence. Once we got there we got on the bus and rode around and up the side of a mountain to a nearby village. Then we got some lunch and hopped on a different line for a slightly different tour. On our last 'hop-off' we got off at the Piazale Michelangelo which has a grand view over Florence. It was amazing. While there we saw a Ferrari that you could pay to test drive... but we didn't do that. One, Michelle can't drive manual and I sure as heck was not going to drive a Ferrari with my limited manual practice. Plus, it was just a tad expensive...

We caught the last bus of the day and got off near the train station with two hours to kill. So... we went into a couple of stores and Michelle found this adorable 'girl' necklace (it's literally a little girl made out of beads, material, and little metal arms and legs) and earings. And I saw one I liked but decided not to get it (I needed to curb my spending a bit) and Michelle offered to get it as a belated birthday present (how sweet)!

We decided it might be best to spend the rest of our time waiting in the train station as we weren't doing so well with just window shopping, which led to an interesting and surprising encounter with a bachelor party from Rome. So, this was all happening behind my back, but Michelle saw it all. A group of guys (who were the epitome of attractive) got off a train and 'pow-wowed.' At this point neither of us knew it was a bachelor party, but she could tell they were a hesitant about what their next move was. She told me that they were all kind of looking around and they looked at her, then at me, then around again, then at her, then at me and at this point zeroed in on me (who knows why). One of the guys walked a bit closer to us then returned to the group and said "I think she speaks English."
So, at this point I see a guy come over to us and squat down next to me (we were sitting on the floor). I knew none of what I just described above, all I saw was a guy coming over with what looked like a packet or clip-board. My first thought was, 'Oh great, he's going to ask me to sign something.' But no. He starts off with, "My friend over there is getting married and we have these pictures we have to destroy," (they were just some photocopies of two people - don't know more than that), "and the way we can destroy one is if a girl gives him a kiss and a hug." I'm taken completely by surprise. I was not expecting this and my first question was, "Like, on the cheek?" and he replied, "Where-ever you want. You are free to kiss him here (he pointed to his neck), here (he pointed to his cheek), or here - but that's usually for funerals so that might not be so good (he pointed to his forehead)." I looked at Michelle and back at him and said, "Ok." So, he took my hand and led me over to his friends - specifically the groom-to-be. And, I was so flustered thinking, "He doesn't know I agreed to a kiss on the cheek. What if he goes in for a kiss on the mouth," that instead of being confident and like, I don't know, offering my hand and saying, "Hi. I'm Krista. Congratulations. So, hug and kiss on the cheek, right?" I just went right in for the hug. - facepalm- It ended up being fine, but gah! So, then he asked if I had any lipstick (which I didn't) so he asked if they could take a picture of me kissing him. I said 'sure'. And they took a picture of me kissing his cheek. He and all his friends were really respectful the entire time, so even though I was flustered and it was quite a new experience for me, it wasn't a bad experience in the least. Huh, who'd a thunk.
Finally it was time to get on the train and return to Venice (yeah!) and we returned to see Venice by night. It was beautiful.

Link to Florence Day Trip


Venice Day 2

Today we went on our Island tour of Murano, Burano and Torcello.
This tour started near San Marco Square as well. While we were waiting we met a nice couple who we talked with both before and during the tour.
Murano is were the glass-makers live and work. Our tour included an opportunity to watch the glass-makers work. Then we made our way to their gallery - um.... wow. The first floor was amazing and expensive. The second floor was spectacular and EXPENSIVE. After exploring that island for a bit, we got back on the boat and went over to Burano. This is were they create lace. We saw one woman working on a piece and another woman explained the process of creating lace - each person only knows one stitch, so most pieces are created by several people. Again, we got to explore a bit but needed to make our way back to the boat - and we were the last ones - oops. The last Island was really just to walk around. We took some fun pictures and just meandered around a bit. After we returned to Venice, Michelle and I walked around and did some shopping (of course) and eventually made our way back to the apartment for dinner and an evening in again - we didn't want to be up too late because we'll have a big day tomorrow.

Link to Murano and Burano Island Tour


Venice: Day 1

Our first day in Venice was spectacular. We got up slowly and then meandered our way over to where our walking tour started near San Marco Square. This was the first part of our Venice Walking and Boat tour. Our tour guide explained many things - how Venice developed, former governments, and architecture. We also had a tour of the S. Marco Basilica (which is ornate - marble and gold again). After that we walked around some of the less traveled areas of Venice (not the entire 'island' as we only had two hours). Venice is just unique and I love it. After the walking tour ended we had a few hours until our boat tour, so we went back to the apartment for lunch and did some exploring. Finally, it was time to head over for our boat tour and we got a bit lost. We did find our way, but time was running close, so we ran across San Marco square and made it with 5 minutes to spare - and the tour guides weren't even there yet. Whoo - time to catch our breath. The boat tour was just as interesting and beautiful as the walking tour. After, we went back to the apartment for supper and the rest of the evening.

Link for Venice Walking and Boat Tour