Day 19 Post-Op: Cleared to go HOME!!

So today I finally got the news that I can come home!!!  Dr. Griffiths was able to remove the scab from where the skin graft died, and was able to tell that the TP fascia flap underneath would heal up just fine.  He thought in a week or two it would be healed.  I will be flying home this Wednesday, December 18th, 2013.  I will get in late that night, but at least I'll be in my own bed that night!

I will probably see Dr. Griffiths one more time before I go home.  After that, I will be sending him pictures of the ear every Sunday so he can monitor it's healing.

I was editing my pictures for today's post, and I got the worst itch so far...it was not only the itchiest itch...but it was again inside the new ear...i.e. I can't scratch it because it is inside my body, not on the surface!  Luckily, so far as long as I just distract myself, it goes away.  My other ear is healing well, and so is my stomach incision.  It's just got a few little secondary scabs, but is mainly just red and healing now.  The stitch line in the crease between my thigh and stomach isn't quite so healed because it gets so much more movement.  It's healing from the edges and is much better, but there is about 1 and a half inches in the middle of the 6 or so inch line that is still not scabbed over.  It usually is about 1/2 inch wide, so I have to keep gauze over it to help keep it dry so that it doesn't get infected.  Surprisingly, it doesn't cause me much pain.  Sometimes it's a little ouchy right before bed, but even in the shower it doesn't hurt.  This surprises me since it looks so ugly and raw!

The new ear is just looking better and better!  I still notice it most in the 'canal' area.  I can't quite touch all skin now when I put a finger in it, and from the front, it totally looks like it goes down into my head!  The little scab right by that canal area is also looking better.  The skin on the new ear is also VERY soft, which Dr. Griffiths says means the skin graft is really good.  It's color just continues to improve too.

The past weekend, I was very tired.  I think I was also a little depressed from everything.  There was a TON of mental and physical preparation, stress before, during, and after the surgery (and trip).  Then, when I got out of the hospital, I knew I needed to stay active to help keep my lungs healthy and because it helped reduce my pain.  So, I think I just sort of crashed.  The excitement was winding down, and I was in a place where I didn't have to be so on guard 24/7.  The realization that this will be a long road to total recovery has sunk in.  I mean, yes I knew it, but everything has been so new and exciting.  I knew it would come down, so it's not really a shock that it's worn off, but I just didn't know when it was going to happen.  I knew to watch for it, because I know that no matter what kind of history someone has, depression after any sort of plastic surgery is a real concern.  It's a fine line between letting my body rest and heal, and starting to mope around.  I have to stay very tuned into my motives and feelings - physical and emotional.  So far, so good.

Now, I'm really sad to have to say goodbye to my new friends.  I wish Boise was close to home...but I'm also very excited to get home and see family and friends, my cats, my stuff, my bed, etc.  I know a lot of people at home are following this blog, at least occasionally, but I want to show my ear off in person.  I want to be present to see how they like it, I want to be able to talk to them as they see it, and of course, it looks MUCH neater and better in person.  It's SO hard to get color, light, etc correct in the pictures I post.  I do my best.

Speaking of pictures...here's tonight's update in pictures!  See everyone at home soon!!!

Comparison Photos Through Day 17 Post-Op

The best way to see the healing and progress is to compare photos side-by-side:

Here's photos of the ear from day 11 as the mold came off, through day 17.  I notice the lack of redness in the last few photos, which make it look like the canal hasn't gotten much deeper.  However, in real life, the canal is deeper, it's just hard to show in photos.  I also see a big difference in where the new ear was sewn to my rotated ear lobe in terms of swelling and how that affects how the lobe looks and sits.  Also, today's picture looks VERY clean compared to the rest.  I think a lot of that is because Dr. Griffiths was able to remove some of the dead skin from the ear yesterday.  So, while each day usually cleans up some, there is a big difference between yesterday and today because it was cleaned more than just by taking a shower.  You will also notice, though, that I think there is a little bit of skin graft in the canal area that has not taken (the area that's really dark/pussy looking).  Not sure, but since it's recent as of yesterday, I'm assuming that's what happened.  Dr. Griffiths wasn't concerned about it yesterday and just cleaned up the edges.  It's just amazing how healed up the skin has gotten!  The lack of scarring across the ear lobe is also AMAZING!!!

Here's a few photos to show off the swelling difference from looking at me straight-on.  It's looking more and more like an ear in profile.  My hair is hiding the very front of the ear in the last picture...

And here's the photos to show the progression of the skin graft area in the lower back that didn't take.  Despite the increase in skin discoloration at the bottom, there is definitely a lot less swelling in the back of the ear than when the mold first came off, especially in the last day or two.  These pictures don't show it too well, but the stitch line is a lot more healed now too.  In Day 13's photo I can really see the two sides of the skin graft that the stitches are holding together.  The last two days I can see that the two sides of the grafts have healed together, even though they're not 100% healed yet.

Surgery Photos!!!!!

Okay, so here we go!  I have some photos from surgery to show all of you!  I will put a page break in here so you don't have to see them if you don't want.  However, they are not bloody or gory.  There are pictures of the ear sewn up (just a little red where the stitches are, but you can't really even see the stitches themselves) and the carved cartilage (it's just white cartilage on a blue surgical sheet of cloth).

Day 16 Appointment

So I am pretty much 2 and a half weeks out now!  Things are going well.  In my last post, I think my writing was a bit all over the place.  I was coming off of a 2 and a half day stay at my friend Heidi's house.  I had an AMAZING time, but I wasn't aware of how worn out I was until I got back "home" and started decompressing.  That post was written Thursday.  Heidi dropped me off and I went right to editing pictures and updating everyone here since I had been away for a few days and had not posted.  Now it's Saturday Afternoon, and I'm still recouping.  It doesn't help that there was a power outage last night around bedtime and it caused a loud alarm to go off for a while.  I don't think it was all resolved until around 1 am, and since I need to wear my CPAP as much as I can, I had to get up and deal with that then.  My foam head wrap for overnight also caused a lot of issues last night.  It usually slips up a few times, but last night it did that more than normal.  Once it slipped off pretty much entirely and caused my mask to leak really badly and hurt my nose.  Overall, it was just a rough night, and I'm still very tired.  It's hard to remember my body is still going through major healing, even though I don't have much pain.

I saw Dr. Griffiths yesterday.  He checked on everything and cleaned off dead skin, etc. from the new ear.  He also removed some dissolveable stitches that hadn't dissolved from my groin skin graft site.  He said he would be comfortable sending me home at this point, BUT there is a patch on the lower back side of my new ear where the skin graft did not take.  At this point, he believes the under layer (the TP Fascia Flap) of skin graft is probably fine and will form skin underneath the large scab that is the outer skin graft that didn't take.  Unfortunately for coming home, that means I need to stay until we are sure that no additional skin graft is needed.  It's really just a waiting game for that scab to come off so we can see what's underneath.  He did clean up the edges of the scab yesterday, but didn't feel comfortable trying to remove it all yet.  And so...we wait...

I am still very emotional a lot of the time.  Ups and downs, but more and more, ups.  I have never been near tears of joy, and lately, I get that way many times a day.  It's a very new experience for me.  I'm still just trying to soak in the whole experience and enjoy every moment for what it's worth.  I want to go home.  I miss my family and friends, pets, church, etc.  And, I really am having a great time out here.  I will really miss my friends out here when I have to go home.  I also like being able to walk to the store and downtown.  So for now, as with the rest of my stay, the word is "patience".  I need to stay present and enjoy what I have here, because when I go home it will be a while before I can come back and visit.

My ribs hurt still, but I usually don't need tylenol.  I can move pretty normally, except for the swelling that keeps me from reaching my right toes still.  Other than that, I just sometimes get some pain in that region by evening, but nothing I can't deal with.  The only real problem the pain causes is having bowel movements.  Any type of pushing I have to do with my abdominals still causes pain after a short while.  It does get better all the time, but it's definitely not gone yet.

I'm not sure if I ever mentioned it, but because I was intubated during the 13 hour surgery, the middle part of my lip was completely numb for about the first 5 days after surgery.  I was assured the feeling would return, and it has been getting better.  I don't really notice the fact that it's still a little numb most of the time, but especially if I drink through a straw, I do notice that I have reduced feeling there.

Okay, so that's all I can think of for the update today.  I'm going to leave you with some pictures from day 16 (the ones from 7:45 a.m. are before I saw Dr. Griffiths, and the others are from after the appointment), and work on my second post for today...surgery photos!!!!

7:45 A.M.

Mid-Morning

This next photo shows the area behind the ear where the outer skin graft didn't take and has formed a scab.

Two Weeks Post-Op Update and Picture Comparisons

Today is 2 weeks out from my surgery!  This week, things have been getting much easier and my pain is pretty low.  I don't take any pain killers over night, but I do usually need one tylenol in the afternoon or evening if I've been moving around a lot.  Speaking of moving around, I do still find that a certain amount of walking helps my pain.  Interestingly, now that I'm in a lot less pain, I am realizing that my rib area is pretty swollen.  I can barely touch my right foot to tie my shoe if I lean to my right!  It doesn't hurt, but I just can't do it.

I also find that I can sleep in normal positions in bed as long as I don't sleep on my right side (I have a foam cushion I keep around the new ear, held on with netting over my head).  Even with some pain in my chest, I can pretty much move completely normally now.

My new ear is constantly changing size, shape, and color.  When the mold first came off, either the reason the mold got so loose was that the ear was swollen and pushing it off, or the loose mold made the ear balloon up.  It lost a lot of swelling in just a few hours, but now everyday it gets better.  I notice it most in the dip where my "canal" (not going into my head, just a low spot to make it seem like there is a canal) will be.  The bump in front of the ear is starting to show too as the swelling goes down.  It's hard to believe that bump is the cartilage from the top of my microtia ear!  It's so neat!

Neither ear hurts much.  Some times it feels like I have dried plaster on my ears, so that when I move my head, etc. it pulls the skin a bit and just feels stiff.  Unfortunately, I am having some itching that I can't scratch, presumably from the healing and dissolvable stitches that were put in to hold the carved cartilage to my head (inside the ear).  It doesn't last long, but does come back during the day.  I hope it finishes soon!

The ear is still numb obviously, but I am aware that it's there.  Sometimes I feel like I have tape on my side and it's falling off my head.  I am getting more feeling back in my head, but where the nerve flap was taken I obviously don't feel a thing.  Dr. Griffiths did say over time I will get some feeling back there, but not completely.  But since the new ear sticks out farther, it's more important that the ear has feeling than the area right in front/above the ear.

I go back to see Dr. Griffiths tomorrow morning, and will hopefully find out more about when I get to come home.  I should also be getting the flashdrive with my surgery photos on it.  I can't wait to show you them, the pictures of the carved cartilage are amazing.  Overall, I'm very pleased with my ear so far.  It's gross and swollen still, but it's only been 2 weeks, and I know it can take about 12 months before the swelling is all gone.  Still, the shape is surprisingly smooth compared to other ears I've seen this far out from surgery.  I did know that going in to this, even with an amazing surgeon, ears can turn out badly since everyone is so unique.  I felt like I was making the right choices, but you never know.  So, I hope for good results and keep myself prepared for any results.  So far, everything has far surpassed my expectations!

However, now that the ear is looking more like an ear, I am experiencing a bit of an appearance crisis.  I am really glad now that I had that photo shoot.  I REALLY like looking in the mirror and seeing two ears and therefore more symmetry in my face, but it's extremely weird to have such a different look to my head after living one way for 25 years.  It wasn't a big deal when the ear was really swollen and didn't look much like an ear from the front, but now that from the front they look pretty similar, it's weirder.  It's definitely going to take some time getting used to.  I take a lot of pictures of my ear (since that's the only way I can see it up close) and try to take a look in the mirror straight on after I use the restroom so that I can work on adjusting to such symmetry.

The other interesting thing is my eyes.  I will try to ask Dr. Griffiths tomorrow.  Basically, my right eye was always squintier than my left when I smiled.  But, since surgery, it's backwards!  My right eye stays open a LOT better now, but my left eye closes up.  I'm not quite sure what to make of that.  I always seem to have one squinty eye, I wish I could just have both eyes all the way open when I smiled!

I'll know more after my appointment tomorrow, but everything has been healing well so far.  Now, it's mainly just a waiting game with the swelling...which is a VERY long game!  I can't wait to come home and see everyone!  I am having a great time out here and will really miss Heidi, Rosalee, Heidi's Husband, and Heidi's friend Amanda.  I have enjoyed seeing a little bit into deaf culture (VERY surface, but still, it's nice to see that way of life).  Having unilateral deafness is interesting.  I am very much part of the hearing world, but I can relate to a lot of deaf problems because, basically, half of my head is deaf.  I understand more about what it's like to be deaf than I thought I did prior to this trip.  I have also learned more about how much my BAHA has totally transformed my shyness.

Heidi, Amanda, the girls, and I went to a large craft fair.  I was still early in my recovery and I didn't put on my BAHA.  I basically spent most of the time walking ahead by myself.  Occasionally I'd get frustrated that I couldn't really hear and partake in their conversations, but then I'd feel that I was content and enjoying being in my own little world.  Afterwards, I realized that if I had had my BAHA on, I don't think I would have been all by myself.  I would have been participating with my friends.  However, since for 24 years all I knew was deafness on one side, I realized I managed to basically "brainwash" myself into believe I like being a loner and going into my own little world in crowds and becoming a wall flower.  I have never - not even at that craft show after having a BAHA for a year and a half - considered that that contenedtness was more about my hearing loss than my personality!  That was a big revelation for me.  I've noticed that in the past year I've become extremely talkative and outgoing and really really love talking to people, but I've been going through other major life changes and blamed it all on those things.  I'm starting to give more credit to my new ability to hear for that transformation as well now.

Well, I always have things to update, but I can never think of them all, so I will end here for today.  And of course, here's some pictures from this week.  I've been staying at Heidi's house since Tuesday, hence the reason I'm behind with my pictures!  Enjoy!

Sunday's Gift: Ear Mold is Off! Pictures!

I had a great day out with Heidi yesterday.  I was out for 8 hours, and still felt pretty good at the end.  Every time my alarm woke me up for pain killers I was pretty sore in the stomach.  When I sat up, that movement was the worst.  However, after I was vertical and started moving around, everything loosened up.

 Because it's been so cold here (in the single digits during the day), and I have to keep my ear warm to keep up the blood supply, I had to take hats (yes, hats plural) and a hood on and off a lot to keep it warm.  By this morning, the mold was looser than the day before (it was already loose yesterday, every day it gets a bit looser, from wear and decreased swelling).  I was in the mirror and scratched below my ear lobe (there's room there now that the swelling has gone down), I noticed that the mold pulled away from my lobe about a centimeter.  I called Dr. Griffiths to make sure it would be okay overnight and wouldn't push on the ear, and he thought it should be fine.

Then, I got in the shower with my shower cap that I have to wear to keep the ear dry.  When I gently teased the cap off, it pulled the mold more.  By then, the mold was mainly just attached above the ear in my hair.  I called Dr. Griffiths back because now I was really concerned about the night.  We talked about options, and decided I would see what I could come up with in terms of putting a sock or something around the ear with my winter hat over top for the night.  I could also try to keep the mold on and slip the hat over that.  A few hours later, I realized my head was hurting by the top of the mold because, since that's what was keeping it attached, the hair there was being pulled and hurting my scalp.  I pulled the mold all of the way off.

I had a long photo shoot with my cell phone and my ear after that.  Around 7:30 pm Dr. Griffiths called back.  He decided it would be best for everyone if he and his wife picked me up and we all went over to his office and checked out the ear and got the right foam for me for the night.  At the office, he checked out the ear.  He said it looked great, just swollen - a little more than he likes, but that's probably because of how loose the mold was, as he relies on the mold to help keep some of the swelling out.  Then, he took out the stitches and removed the foam from behind the other ear where he had used the groin skin to cover the skin graft he had taken to cover my new ear.

In short:  New ear gets covered with the TP fascia flap (a layer of skin that has all the nerve endings in it), then a graft from the skin behind the existing ear.  The graft area behind that ear is covered with skin from the "groin" (to me, it's the skin in the crease between my right stomach and thigh).  The groin graft area is pinched together and sewn up.  That skin will stretch back out over time.

The best news (besides that everything is healing okay so far) is that I can wash my hair tomorrow morning!!!

Also, while I was at his office, he showed me all my pictures from before, during, and at the completion of surgery.  It was SO cool to see the carved rib cariledge!!  I had high hopes from what I had seen on his website, but of course, you never know how exceptional the cases online are.  My framework was way beyond what I could have imagined!  I didn't really look hand-done it was so smooth and perfect!  He pointed out the specifics of how it fits with my other ear.  I don't have much of a "rim" after about half-way down on my other ear, and the highest point is actually farther in, and he pointed out how he matched that.  It was also exciting to find out that in addition to using my existing lobe by rotating it down in the back (which pretty much all new ears take advantage of), for me, I had enough ear at the top of my microtia ear, that he was able to rotate it down and use it for the front middle part of the ear that sticks out!  I'm so happy that he was able to, and took the time to, use even more of my ear than normal.  The skin from the front of my microtia ear was also used.  It was interesting to see the photos from surgery and have him explain it all to me.  He pointed out that there were 3 tiny stitches in the top front of the ear from where my microtia ear had tiny little pinhole openings in it.  It's cool how everything was put together and how creative these reconstructive surgeons are!  The stitches are only across the top of the lobe and then across the side of the ear.  He also zoomed in and showed me some of the "3Dness" of the ear and about how deep the spot where the canal should be will end up being when it's not swollen.  My ear is also has a deep ridge at the top, so he told me about how deep that was too (I just can't remember the exact measurements).

After seeing the carved cartiledge, I saw pictures with the skin over top and stitched up, and it looked really good!  At the moment, my lobe is sticking out at a weird angle and I was a little worried, but once the swelling goes away, it will be normal looking (I asked him to confirm as well).  I'm very excited for the finished product!  I trusted that I would have a good outcome and that I was making the right choice FOR ME (NOT everyone, just me), but now I'm relieved that I am getting results to go along with my gut feelings.

So, I will post more tomorrow when I have my actual appointment and know more, but for tonight, here's some photos from today.  As will some others, I am putting them under a "break", so that if a healing, swollen ear will bother you, you don't have to see it.  It's not bleeding, but it is pink in a lot of places and the area where the stitches are has dried gunk around it.  Enjoy!

Disappointment and Frustration with Waiting

So I didn't get to see my ear today.  Dr. Griffiths thought I would be more comfortable leaving the mould on for a few more days, and that it would come off easier Monday when the swelling was down more.

last night I was anticipatory about the possibility of seeing it today, and did some profile checks against my pre-operation pictures that I had sent him.  I was shocked when I compared the picture of me with my head back to present.  Before, my Microtia ear was much farther forward and higher than my normal ear.  Now, they are pretty much even!!  I thought that was pretty cool!

Unfortunately, now that I am 9 days out from surgery, I am starting to have itching.  Although it's more of a really intense tickling sensation that almost hurts it tickles so much!  last night it was mainly around the lobe and the skin below the ear.  I couldn't sleep until I gently set a soft blanket on this skin, which totally made the feeling go away.  It still had that sensation this morning, but was mainly gone for the rest of the day...it's back now and worse than ever!!!!  I don't know whether to laugh or grimace...it's such an odd sensation!

I was disappointed after the appointment and very stir crazy from staying inside as the weather's been cold (my ear has to stay warm for blood flow so that the skin graft takes and it can heal well) and from the pain.  I couldn't take it anymore.  Dr. Griffiths had told me that downtown Boise was only about 6 blocks away, so I bundled up with my 2 hats and coat hood.  I looked goofy, but I just wanted to make sure my ear heals well and I can come home ASAP.  I found a nice place to have a good, cheap lunch and walked around until I felt like I just couldn't take one more step I was so sore and the movement hurt.  I walked back to the Foote House (I had timed it so I knew about how long I would need to get back so I wouldn't get so worn out I couldn't make it all the way back).  It felt so good to get out!!!  Tomorrow I will go somewhere with Heidi, her daughter Rosalee, and their Friends Amanda and Talia (I think Talia...can't remember for sure I will update later).  We're not sure what we will do yet, but we know of options, we just have to decide!  I'm looking forward to getting out again and being with friends!

I just want the mould off now so that I can lightly touch the ear to help with the weird sensations!  In the meantime, I will continue setting blankets on it lightly so I can sleep.

As far as healing goes, I can bend over frontwards even easier today.  I can also sit up from a leaned back position more like a normal person.  I can also reach up with my right had farther and easier with less pain.  A few days ago I really couldn't lift it up at all, so this is great!  I still just have to be guarded and watch how I move and what I carry with that arm.  My lungs are still hurting, but it's improving slowly.  I just try to do my breathing exercises like I should.

Overall, things are still going well.  I'm overly emotional most of the time still, and a lot of that has to do with the pain medication.  It makes me feel TERRIBLE, especially in the mornings for the first couple HOURS.  I feel grumpy, depressed, discouraged, exhausted, etc.  I just have to keep moving and it goes away and I can fight through the rest of the day.  My memory is weird, and sometimes I feel really alert and I am, sometimes I feel really alert and I'm not, and sometimes I feel really not alert and am not alert.  It's frustrating because I know it's the medication and I can't work or think my way through it.  I just have to accept it.  Constipation is still a major problem from it too.  I also feel very bloated.  my clothes are fitting tighter and I was beginning to worry I had gained about 10 pounds, but I had Dr. Griffiths weigh me today, and I haven't gained any weight at all, which was a relief!  The pain killer also makes me hate food and makes it taste bad.  I know I'm hungry because my stomach will be grumbling, etc, and because of all the drugs, pain killers, etc, I want to make sure I eat some everyday, but it's difficult because of how I feel.  It's not like me to be starving and not be able to think of a single food that sounds good, or even acceptable!  I just can't wait not to need it!

So, for now, I just have to stay strong and stay patient.  Patience, patience, patience!  I have to take care of my health, and remember to have fun too!  :)

Improvements and Setbacks

Wow, the word rollercoaster is all I can come up with!  Tuesday I was feeling very worn out and a little down.  I realized I've been working really hard and keeping very busy, not only because I had a lot to do, but because I knew if I cried or got anywhere near upset, it would cause me intense physical pain.  I survived my time in the hospital by staying very stoic and strong because I knew that's what I needed to do.  I needed to start feeling and processing that time now that I was on less drugs and better able to breathe, etc.  It's taking time, but I'm moving forward well.  Tuesday I took a .4 mile walk to Walgreens to pick up some things to make myself more comfortable.

I'm constantly trying to figure out what I can do to decrease pain, and I had figured out that keeping pressure near my rib graft harvest incision helped the pain a TON.  Especially if I need to lean forwards or strain my stomach muscles for things like having a bowel movement.  If your child has rib graft, I highly recommend experimenting with pressure over the rib graft area.  I was surprised it didn't make things worse, but so much better!  To be more specific, I use my right hand (my incision is on the right side).  I push in all the way from my fingers all the way down to my elbow wrapped around my chest, right below my breast (I actually don't push over the incision, but above it).  For me, I need the most pressure applied by my palm.

By Tuesday evening, my body was sore and worn out from using my abdominals so much.  Wednesday I felt a lot better.  I was able to move around in chairs and scoot to the edges to get up and down much easier.  I could bend a little bit forward instead of pleaing while keeping my upper body up and down.  Then, by the evening, because my rib harvest site pain was getting so much better, I was realizing that the pain in my back was actually getting worse and not better.  When I called Dr. Griffiths, he asked me to go to the E.R. because I might have developed a blood clot in my lung.

Luckily, no blood clot.  However, I did have some fluid in my lungs and that was causing a bit of lung collapse.  Not enough to be called pneumonia or a pneumothorax, just enough to cause me pain.  Basically, I just have to use my incentive spirometer more.  While I was in the E.R., however, I was finally able to break down and bit and cry and work through how scary my stay at the hospital had been (particularly the night so many people came into my room and tried to stick things behind my ears or touch my stomach).  I talked to a wonderful nurse and Heidi came to visit.

By Wednesday I felt a lot better mentally and physically.  I started realizing that the first 1 - 2 hours after I pull myself out of bed are horrible.  I'm stiff and sore from the night, and VERY tired and groggy and irritable.  I usually want nothing more than to lock myself in my room and sleep forever.  But as long as I keep moving, I do wake up and feel a LOT better.  I spent the afternoon hanging out with Heidi and Rosalee.  We had a really good time and by evening I was feeling awesome.

Today is Thursday....YAY!!! This is my first post in "real-time" since surgery!!!!!!  Last night I got to sleep IN A BED!!!  Propped up, but still, a BED!!! I slept well, and when I got up in the morning, I went back to sleep IN MY BED!!!  I've been taking my it really slow today, trying to finally relax now that my emotions are caught up and in real time.  I'm finally able to just let my self site and relax...considering it's been over a week since my surgery, it was about time!  My rib harvest site is continually getting better.  I can now gently bend over without holding my chest.  I can get in and out of beds and chairs pretty easily (not all the way normally, but easily)  I haven't had much of an appetite today, but I'm taking it easy.  Plus, I haven't done much today.  I try to just keep liquid and protein going to keep me healing and hydrated, as well as keep my stomach less irritated from all of the medications.  I'm hoping to be brave and try going 6 hours instead of 4 between my pain killer doses.  I also was able to find no-rinse shampoo that was pre-loaded in a shower cap.  I was getting sick of my dry shampoo, so I tried that.  I basically was able to rub it into my hair really easily avoiding my ears, yet getting all of my hair cleaned.  Since it's no rinse, it's obviously still leaving gunk in my hair that real shampoo wouldn't, but I have to say my head feels much lighter, cleaner, and fresher than with the dry shampoo!

I will be relaxing the rest of today, and enjoying another night in a bed.  Tomorrow afternoon I go back to see Dr. Griffiths.  If my earlobe looks not too swollen, my mould will come off tomorrow!  If not, I will go back Monday for the reveal!  He told my at pre-op that after the mould comes off, he usually has a pretty good idea of how long someone will have to stay out here.  I don't know if I'm more excited for the reveal, or to find out if I get to go home before Christmas.  I'm nervous, but preparing myself to love my new ear, no matter what it looks like.

So, things are going really well over all.  Nothings perfect and wonderful all the time, but overall, this has been an incredible week and a half.  I never could have imagined how much this would change my while life, and I am speechless about how much I am growing and changing for the good!  And yes, even with setbacks and hard times, I am completely satisfied with my decision to have rib graft ear reconstruction with Dr. Griffiths.  I will continue to update you on that opinion as my ear heals!

Being back at the Foote House is a rollercoaster - physcially and mentally

I wasn't able to stop the I.V. morphine until Saturday morning.  I had discovered that the Norco narcotic I was given for pain was working well, and if when I felt the need for morphine inbetween the Norco doses, getting out of bed and walking a bit would decrease the pain so I could go without the morphine.  I saw Dr. Griffiths Saturday morning (he had taken out the two drains from my ear the night before already) and he removed the "cue ball" that I had been carrying around (it was a gravity flow ball to pump the numbing medication directly into the rib area where they harvested the cartiledge.  I had been scared about what pulling out that tube would feel like.  It didn't hurt at ALL!  It was maybe 2 mm in diameter.  I was excited that I was finally free of all the wires!  They even let me keep the pulse oximeter off at that point!

Unfortunately, shortly after that I did need some morphine because of all the muscle spasms (then they called Dr. Griffiths and he was able to prescribe me Valium to continue at home as well now that I was on less medications).  So, since it was up to me what time I left, we decided I would stay until the evening once I could have some hours past when that dose of morphine would have worn off to make sure I would be okay without more.  I also had yet to really walk without the walker yet.  I did several walks without it, and Dr. Griffiths also made sure the nurses had me try some stairs in the P.T. room since there are some where I'm staying that I can't avoid.  They said I did stairs better than flat ground!

Dr. Griffiths had also asked if I'd like to meet a 16 year old girl who he had done a reconstruction about a year ago.  She and her Dad were in town.  I said to just give them my number, and they stopped by in the late morning.  It was nice to meet someone who had been in my shows not long ago and who also wasn't a young child at the time of reconstruction.  I got to hear that a lot of my experiences were similar to hers, which helped normalize it all for me.  I also got to see her ear, which was lovely!  She had met with Dr. Griffiths the day before (her Dad had just randomly texted him to say they were in town and Dr. Griffiths wanted to meet), and he was actually going to do a little revision (she still had a bit of a bump in front of the ear) in the office before they went home to Washington state.  It was nice to meet someone else, and also not have Dr. Griffiths around so I knew we could talk as openly as we wanted.

For the last couple hours I was there, they even let me walk to the bathroom without calling staff!  The little things...

My friend Heidi came up a few hours before I left to visit, and then took me to fill a script and got me settled back in at the Foote House.  I cannot describe how much of a godsend that was!  I have to be SO careful to not overdo movements or I know I will wind up in the E.R. to get iv pain killers.  So having someone insist on helping and reminding me that unpacking was her job, not mine, was beyond helpful!

I found out that night that I cannot lay flat.  Once on my bed, my pain was excruciating, and then my ribs on my right side felt like they were popping in and out everytime I took a breath in or out.  I did call Dr. Griffiths around 11:30 when it wasn't getting better after a couple hours and having tried propping myself up, etc.  He said to call back if it got worse, but for the moment, just be sure my CPAP mask was on if I was going to sleep.  I ended up sleeping sitting on the couch.  I set alarms for every 4 hours to wake me up so that I can stay on top of my pain with the pain killers.

The next day I was excited that I got to sleep in a recliner and managed to recline.  It was much comfier!  However, the next day was bad.  I saw Dr. Griffiths Monday morning.  Everything is going well.  I had asked over the weekend about two little puncture wounds (or at least that's what they looked like to me) on my front near my shoulders.  When he saw them he sounded to surprised to confirm that they were in fact very tiny puncture wounds.  He thought about it and then realized they were from where they had stapled the  surgical paper to me.  They sterilize a large area around where they will be working, and then staple a paper at the outsides of that area to prevent uncovering any unsterilized area during surgery.  Note that they never hurt me, they were just a little raised and red and bruised.

The only thing that wasn't good was that I hadn't had a bowel movement in a week - before the surgery.  I had been trying colace with very little improvement, so he gave me a sorbitol slurry to try.  I spent a lot of time on the toilet the rest of the day.  I was VERY painful since I had to engage my sore stomach muscles a lot.  I was very sore by evening...even my right side and the right part of my lower back hurts bad.  I'm okay right now, but hopefully I won't have to do that again...no movements today though, so we'll see.

Last night I was not able to recline because of the pain so I sat upright in the recliner.  I was exhausted.  At one point I woke up to go to the bathroom.  I took off my CPAP mask, which I have to use hair clips to attach since I can't use the strap with my ears healing.  When I sat back down to sleep, I got the clips ready to pin on the mask, and my next memory is waking up to my alarm for my next dose of pain killers and wondering why my mask wasn't on!  When I went through the last time it was off, I felt for the clips and they were exactly where I had set them before trying to reattach the mask!  Apparently I was so tired I conked out in the middle of doing something physical!

Today has been a hard day.  I am in a good space mentally and don't think I'm getting depressed, but the last week is catching up to me.  I've been really sleeping and kind of irritable.  I realized I haven't really just sat down at all without needing to focus on something since I got to Boise.  I'm still having a hard time sitting still, but I'm working on it.  However, I do notice that when I look in the mirror and see my head with the tan ear mold over my new ear, my face already looks so symmetrical and I feel giddy and smile.  I definitely did not think that the new ear would have such an effect on how I liked my appearance.  I have always been happy with how I looked and embraced my little ear, so I didn't figure much would change.  I was actually a little worried I might dislike changing it, so I'm very pleased that I already like the uniformity of the outline of two big ears on my head!

I still have a lot of pain when I breathe, but I'm learning how to adjust my movement and action to reduce pain.  I've also realized that making noise when I'm in pain is ok and actually helps the pain.  Yesterday, my friend told me there have been studies that show that making noise due to being in pain can actually increase pain tolerance...

Well, I really need to just sit.  But Yay!  Finally mainly caught up!

Goodnight.

Pre-Op

My pre-op appointment was on November27th - the afternoon before surgery.  In an earlier post I did say some about what we did during that appointment, but I will be go into more surgical details in conjunction with the pictures I took after the appointment.

We started out talking about any questions I had.  Since I was still not sure about rib graft versus medpor, that is mainly what my questions were about.  I was pretty sure I wanted to do rib graft since I had started having a gut feeling a few days earlier that that's what would be best for me.  Once I heard that rib graft ears are more flexible than medpor (which is pretty rigid), I was sold.  Of course, Dr. Griffiths was still quick to remind me that I could still change my mind up until the morning if I needed to.  As far as asking any sort opinion type questions about what he thought would be best, he was so neutral it was almost frustrating.  I just wanted to be told, but he is very insistent that it's not his decision to make.  He will, however, tell you as much as you want about both procedures, the outcomes, the pros and cons, etc. so you can make an informed decision.

Next, he went over some details of the surgery.  I did tell him I only like to know the basics until after my surgery is over.  He talked about how skin from different areas is like different types of fabric.  They all look, feel, and act differently.  That is why he uses skin grafts from behind the good ear and the groin to cover the ear, instead of the scalp like many of the other surgeons.  He has found that the ear and groin skin matches better in thickness and color, get gets less waxy looking over time than skin from other places.  I thought that was interesting, as I have noticed some reconstructed ears look VERY waxy.  I didn't know it had to do with where the skin graft came from!

I also learned that one of the additional challenges with adults is the main artery that runs in front of the ear.  In children, it is very straight, but in adults, it tends to wiggle more, which makes working around it a little harder (which, as you can see best in the last photo, is why he uses a doppler to map out the artery with sharpie).  He marks it with sharpie, and also makes other marks of veins and surgical notes (hence the photos with sharpie all over).  He did tell me that my anatomy was an "interesting case" and he had never seen anyone similar.  He said it was fine and would be fine to do the surgery, but that he would just have to take it into consideration.  He sounded like he was confident and happy to take on the challenge.

Finally, he used some sort of silicone (similar to what a dentist uses to make a mold of the teeth) that he caulks in and around your good ear to make an impression of it.  Overnight, he uses that to make a mold (which he showed me in pre-op the day of the surgery - I have small ears!).  He also uses a clear film to draw all the details and "levels" of the good ear so that he can match the new ear to it.  He cuts along the lines indicating different depths/levels so that he can figure that out for the new ear.

Finally, he gave me a tour of where I'd check in the next day, the O.R., and the floor I'd most likely end up on.

He is very thorough and detail oriented.  All the people at the hospital I met (especially nurses in the O.R.) love him and mentioned how much of a perfectionist he is.  I have also seen how calm he stays all the time.  If there's a problem, typically, he'll walk to a corner of the room and stand still while thinking through what his next move should be.  Within a minute he usually comes back and has a game plan.  I like that he doesn't immediately react, but takes the time to think through his actions and what the potential consequences will be.  I really helps me trust him as my doctor.  At first, these pauses scared me because I assumed they meant something terrible was wrong and he didn't know how to break the news to me.  Now, I know what's happening and it actually puts me at ease because I know he is thinking about me specifically, my case, and what would be best long term for me and my body (not just being a cocky doctor and generalizing what needs to happen and shrugging off my worries).  Learning this about him has made it much easier to put my faith in him - which is important for me not only because your doctor can be a source of knowledge and support when you're in a lot of discomfort and scared, but because I tend to overreact and fear the worst, but with him I am able to trust his judgement.  However, I do keep my own opinion and gut feelings in mind.  If I think something needs quicker attention of higher levels of care than he is providing, I would go to the ER.  But most of the time, I am just fearing the worst, and I know that.

Lastly, you will notice that my BAHA has a jump ring hanging off the bottom of the back corner.  That is what I use to attach my safety line.  Traditional safety lines connect there through line that is basically clear, stretchy jewelry elastic cord.  However, most people find those break.  I have reinvented the safety line (http://www.etsy.com/shop/HearWithStyle?ref=shop_sugg).  I use a metal ring (like a tiny key ring) through the hold on the BAHA (which I take off, but I had only removed my safety line a little before taking these photos).  I use pacifier clips with a ring on the end to clip to clothing, and then I make beaded lines with jewelry clasps on the ends to connect the two ends.  Thus less breaking and I can match my outfit!  Honestly, if I'm going to have someone notice a line running from my head to my shirt, I might as well make it look pretty, right?

Enjoy the pictures!  I'm just about caught up.  Next up, Surgery!

The Bishop Foote Guest House

I am staying in a single room at the Bishop Foote Guest House.  My room is small, but I have plenty of room for all of my things.  And I even have my own tv (surprised that I've never even turned it on?)  Bed and bathroom linens are provided.  Unless I specify, my sheets with be changed weekly.  I can put a sign on my door anytime I want them to come in and get used towels, or I can reuse or wash them myself (there is a washer and dryer - VERY nice machines - on the lower level/basement).  No detergent is supplied, but sometimes people leave what's left of theirs, and everyone's pretty friendly and helpful if I would need to borrow.  I am in room number 8.  When you walk in the back door, you go down one step to the right and there are three single rooms in that nook...mine is in the middle.  There are also two chairs in a little corner.  If you go straight from the door, you go downstairs to the basement where there are some double and single rooms and two bathrooms (along with linens and the washer and dryer).  If you turn left from the door, you go up 4 stairs, and in a little landing area there is fridge number one, trash, and a phone with important info and numbers listed (there is a shuttle that you can call to take you around the hospital's campus).  That room leads into the kitchen with another fridge, counters, cooking and bake ware, stove, sink, microwave, pantry, and coffee machine.  You are assigned a fridge and you can store things anywhere in it as long as you label it with your name and/or room number.  Everyone has a shelf in the pantry (the doors swing easily in and out to get in there), and then there are extra plastic bags, newspapers, etc to share.  Everyone supplies their own food, and when you leave if you have things that aren't empty, there are special cabinets to put them in so future residents and use if needed.  There's also a drawer with basic supplies like pens, markers, paper, etc. and a drawer with lots of extra kitchen linens.  There is always hot coffee in the machine - they never turn it off!  After using the kitchen everyone is supposed to clean everything they used and wipe down any spills.  All dishes must be put in the dishwasher (or left in the sink for staff to put in the dishwasher) to ensure all items get sterilized properly.  It's nice though, that I can leave dishes I'm going to reuse - such as a water cup - on the counter and it doesn't get put in the dishwasher too often (only right before someone runs it).  I made sure this was acceptable, and was told it was, by all means fine to do.

The dining room is on the other side of the kitchen, there are two nice tables and a really old piano (the keys are wood!).  From there, you enter the living room.  It is very big and all of the seating options are VERY comfortable (they are fairly new too, so they look really nice).  Lots of books to borrow on the walls, large flat screen tv.  And, the best part, is that it is ALL normal furniture, not mass bought industrial furniture, but normal everyday high-end house furniture.  It helps it feel much more homey.  There are two more double rooms in an alcove on the right side when you walk into the living room, along with a third bathroom.  The bathrooms all are very large and have lots of towels, disinfectants, extra chairs/counters, and blow dryers.  There are magazines in the living room too.  There is also a computer to use and currently there is a Christmas tree.   Gabrille Moore's office is in a room off of the far end of the living room.  She runs the house and is really nice.  She and the housekeeper (who is meticulous in her cleaning, so it's always clean everywhere - today she even took apart the top of the stove and washed everything - it wasn't even considerably dirty). are only here from 10 am to 3 pm on weekdays, but if I need anything or just need to talk, she is super helpful and you can tell she really likes her job and helping people.

It is about a 5 minute walk to Dr. Griffiths office or the hospital (they are directly across from each other about  two blocks from the Foote House.  The grocery stores (Winco and Whole Foods) and Walgreens are about 15 minutes away by sidewalk.

Everyone staying at the house is either going through treatment, accompanying someone going through outpatient treatment (many do radiation and stay here if they live a few hours away since this is the closest hospital).  There are also some people who stay here who are supporting someone staying at the hospital - even if that person never stays at the house.  Everyone is super helpful and friendly.  That's just the general Boise them though.  All the caregivers in the Foote House tell me they'd be more than happy to help me if I need something.  Today, I went to lunch and grocery shopping with Mary (who's here support her brother in ICU), and then in the evening, I dropped my room keys under the recliner and couldn't locate them (and couldn't look everywhere due to my pain), so she helped me find them.  Because I had lost them when I got stuck in the recliner, and getting out had been so extremely painful and time consuming, I didn't have it in me to get to the store tonight to get a prescription for my pain killer.  I most likely will be fine until tomorrow, but if my pain elevates and I have to reinstate two pills versus the one pill per four hours I was able to switch to this morning, I might have run out over night.  Even though she's tired and fighting a cold, she was more than happy to pick up the script for me.  Riding in cars is kind of painful right now, and since I had just made my body ache so bad, I really had no desire to go with her, and she was still happy to run up there for me.  Even though I am a long ways from home and didn't really know more than one person when I left home, I feel extremely supported and safe out here!  I have a lot of people I can call if I get in a bind (and of course Dr. Griffiths himself is only a 10 minute drive away, so I could always fall back on him if I got desperate).  Even the hospital staff are supportive.  I have been very upfront and honest about where I'm at and where I've been mentally over the last 8 months and the support has been great.  Dr. Griffiths felt the need to assure me he really believed mental illness was just as serious a disease and out of my control as heart disease.  He also asked me if I thought it might be helpful for me to get the psych staff involved while I was in the hospital.  I felt confident I would be fine and reassured him if that changed I wouldn't delay speaking up.  I also still feel like that could have actually potentially made this worse.  However, I did meet with a social worker and had a good talk with her.  Once I was back at the Foote House, I found out that the social worker had called Gabrielle (who looks after the house) to inquire about how settled I was, if I was able to get food, if I had support here, etc.  Obviously I did a really good job preparing for this trip and using my resources once I got out here and Gabrielle concurred, but it was still reassuring to know that all the hospital staff have every aspect of my health in mind.

Well, I can't think of anything specifically related to the Bishop Foote Guest House that I haven't said.  I will share more about the other aspects in later posts - and more pictures of me!  It's time to try to sleep off a lot of the pain I'm in now.  Goodnight!  Enjoy the pictures!