Doctor visit today...THE LOOP

Sorry these are so far away...obviously I didn't take them. You can tell that the swelling, for most people, is "gone" and from this distance I look pretty normal. You can see in this sideways one, compared to the one the day I got home...that incision along my neck is healing FAST!

Ok, first post surgical check up with my surgeon, Dr. Lim.

All is well, healing very nicely. Better than expected. Incisions have almost all closed up. Starting to get some tension with gritting teeth, it's more of a fullness I can feel than a motion or twitch that can be seen. Swelling is down all over, still in the mouth and driving me crazy but that particular part will come when the muscle is moving and shapes up how it should. The area around my jaw is still swelling and is expected to subside over the next couple of weeks.

He gave me meds for sleeping, thank you GOD!

The spot behind my ear that has been weeping, dripping clear fluid. I have been concerned it was a salivary gland issue. At first, he believed it was just wound healing. When I mentioned how I've been watching it and that it occurs more when I eat, he agrees it probably IS a salivary gland issue (they took out part of my parotid gland for the graft space). It is unlikely that it is gustatory sweating...if it is it can be fixed with botox. He thinks it is more likely a salivary fistula and when everything else heals over, a quick outpatient surgery can fix that. So, while it is SUPREMELY annoying, I am totally ok with it as long as we have a plan for stopping it at some point.

I can drive, I can travel (Jason can unclench ;) LOL). Sadly, I am still on my soft diet only. I could cry, I really could. And I was informed that pizza is NOT, in fact, a soft chew food. Bummer. I am not clear to return to yoga yet, which isn't surprising. I can walk and exercise very very lightly for a few more weeks but nothing more strenuous. I CAN HAVE A MASSAGE!!!!

All in all, we are looking really good. It is encouraging to see him so happy with the progress, I see him again next week. He went over exactly where the muscle is placed, so I know where to be careful. He did confirm that the muscle is attached in 3 separate locations around my mouth to give a more natural line of pull. The synkinesis of my cheek (the part that jumped/twitched when I raised my eyebrow) has stopped, which was expected. But he believes that just the fact that that particular muscle never lost it's nerve feed completely may give me a more full appearance which would be GREAT.

Waiting out Irene

All ok on our front so far. The storms blew in last night and are still going. There is damage up to 10 miles away from us already from the tornadoes this thing is spinning off. We are prepared to ride it out, and also ready to hit the closest interstate if we have to leave and can do so.

I'm excited for my appointment with my surgeon on Monday. We will be checking the graft and discussing movement therapies for me now, I think. Just ready to get this show on the road other than just sitting and waiting. I am not a waiting type.

Really thankful for all the thoughts, cards, and flowers I have gotten. It's so nice to be loved and thought of.

Can't stop itching, can't start sleeping

I guess it's a good thing that my biggest complaints are that my face itches and I can't sleep. I mean, I'm no longer using any pain meds but I canNOT sleep to save my life. It was 2am when I finally called the nurseline at the hospital just dying to know what I could take. They suggested I take my Dilaudid. I kept repeating to them and to Jason that I do NOT want to take narcotics if I'm not in pain. Using meds for off uses is what gets you introuble. Not going there. I finally got a callback from the doc and found out I could take the Melatonin I had. Didn't help much, I only got about 3 hours of sleep. I'm trying not to nap today so I will be exhausted tonight.

I'm just too uncomfortable to sleep. My right shoulder and hip are just too uncomfortable to think about anything else. And I'm serious. I would gladly have dislocated my own shoulder or taken ALL ofmy surgical pain at once to have that annoying feeling stop. Nothing helps. Nothing stops it. And I did try absolutely EVERYTHING.

The itching is minor, but it is on the tissue UNDER the graft. The tissue I can't scratch or get to for any reason at all. It is supremely annoying, but forgettable after a bit. It still feels like they implanted something foreign in my face, something not even flesh, it just feels not mine. And I'm curious how long that will last. I guess hopefully once all the swelling goes down. We will have to see.

I am so terribly thankful that I ate whatever I wanted before surgery. I am dying for real food. I am now at a point where everything I want I can't have, and the things I can have make me sick to my stomach to even think about eating them. Like, Jason has offered to bring my favorite shake ever home from errands today...and I'm only minorly excited about it. Not even really excited, just accepting that I might be able to convince myself to keep that down. It is so depressing. Ridiculously so.

After al stitches and drains are gone!

It felt so amazing to have that final drain pulled and all my sutures removed yesterday! I can finally get dressed like a normal person, without needing another set of hands to handle the drain while I put on shirts. I managed to shower once while it was still in. But it was quite a production.

Today, apparently, we had an earthquake. The first in this area since the 1800's. And we didn't feel a thing. Took my first outing to Panera Bread so I could eat soup among other soup eaters and not feel cheated (even though I was lusting after Jason's greek salad). And Zoe got to eat all my bread. I have no pain or nausea meds on board today and I think I'll be fine without them. After eating, it was definitely time for a nap but I only slept an hour and a half, so it wasn't a marathon healing-exhaustion nap.

The swelling is coming down a lot. I can feel all the structure around my eye socket, close to my nose, and most of my mouth has been released from swelling. Except for the muscle attachments my lips feel almost normal. No more feeling like they've been sanded down with paper. Most of the swelling is at my jawline and under my neck now. My chin is really sore to the touch for some reason and I am so glad to find out that that tough "ridge" we felt in my face was actually the drain tube and is now gone. Got the doc to tell Jason to relax and LET ME SLEEP if I want to for heaven's sake. He has been so good about managing my meds, though, so I must thank him.

I feel almost normal today, oddly enough.

My discharge and first day home. After the fact

I only knew the night before that I'd be leaving the next day. I was scared to be going home to tell the truth. I didn't get to post too many times in the hospital. Part of that was spending 4 days in ICU, and the other part of that was getting sent back for emergency surgery 2 days after I left ICU. I always felt like my body was playing catch up.

Too much swelling and a TON of pain when some sutures were loosened/removed, and one of my surgeons called 'enough is enough' and sent us back to the OR. I was notified 30 minutes prior to being taken into pre-op, just enough time to get Jason settled on the home front and then coming in. He got there just in time. They found two areas of thick swelling that could have turned into a clot, but one other surgeon feels would have eventually resolved on its own. It is unclear whether it would have killed the baby graft before it resolved so I'm glad we went back in. Thank you, Dr. T!

As usual, I had a REALLY tough day about 3 days after the second surgery. There will always be one day in the hospital where I trust/like pretty much no one and I am and pain in the butt as a patient. I had great nursing staff, and Dr. H ushered all the other docs out and then pretty much let me have a nice little lecture on how things were and why they were that way. After a good night's sleep and my favorite nurses on staff that night, I was feeling MUCH better and more cooperative the next day. So...tough day down, no lives lost.

Discharge went smoothly, they removed all but one drain, I packed and we got out. It was SO good to leave that hospital room. I went home and hung out with my parents and Jason a bit. Then went to bed. Sleeping would be challenging. A belly sleeper back in my own bed...we had to rearrange a lot of pillows. My mom took a few pictures my first morning home, then home health came by to help me figure out drain care and I basically settled into food depression. At this point, I have lost 10 pounds from my pre-op date, not all that surprising. I'm on liquid only, and there is a limit to how much tomato soup, chicken broth, vanilla ice cream, and pudding one person can eat before getting sick at the thought of any of it. I LOVE food. Even when I diet, I change what I eat I don't limit the hell out of it. This liquid crap is killing me. I find myself wanting salads, chips and guac, pretty much anything that crunches. And oooh I'd kill for pizza. A little note if you are ever on a liquid diet...blending real food will NOT get you what you want. You will very quickly discover that mutilating your food to babyfood consistency makes it taste "grey" and nasty. You will find it's the mouth feel and different tastes as you bite down on different things that makes the meal.

My parents left the Sunday after I got home, and I miss them already. I missed my Munchkin Zoe so much it was maddening. I couldn't even think of her in the hospital without getting so sad. We were worried she'd hurt me when I got home, but she handled it all very well. She asked questions about my "boo-boos", my drain, and the balloon in my face. Other than that, she was fine with it all. Not freaked out and very careful. What a sweetie.

You can see that the drain is still in, that will come out Monday. In the first pic, you can see that the swelling isn't quite so obvious, but that it's pulling all the skin around my eye and my mouth over. And in the second you see what's left of the incisions and the acutal drain. The greyish area on the middle of my face (where it's shiny) isn't bruising, it's skin that is dying from being stretched out so much. That is the last patch left. So while it's pretty annoyingly uncomfortable, it's not as bad as I thought it would be

First post-surgery post

Big thanks for all the thoughts and prayers sent up for me. I really appreciate them and I was so thankful when I woke up! I knew, whatever the results were, that I could get through that result knowing that I'd done what I could to make my life better. Now that it's over, I can admit that I was REALLY scared that something would happen and make me not be there for Zoe, and I literally felt like they gave mt that "loopy" shot in preop and I swear the next thing I knew they were waking me up.

My body is waking up slowly. First few days were all about nausea and pain; I think the staff was tired of hearing me ask "when is my next morphine? When is my next Zofran?" They had me doubled on Morphine and Dilaudid and also had me doubled on Zofran and Phenergan. None of those meds would work alone. Sadly, we figured out in a couple of days that the Phenergan was actually making me sick. And all of the meds were making me itch (it was like this last time I came out of a ton of anesthesia, too). I was in ICU for 3 days and today got moved to a regular room.

I was pleasantly surprised at how not painful it was to walk to the restroom and back. I wasn't sure what to expect, since the took a portion of muscle out of my leg. But it was really more joint stiffness and having been so uncomfortable in that god awful bed. I know those air beds must help you not have bedsores, but for someone who LOVES a firm bed it was killing me laying on that cloud.

The swelling in my face has been surprising to me, but the docs say it looks great (when I get them from Kake, I'll post the pics). The painful part has been my lips swelling (people pay for this???) and the swelling running out of room that spread into my mouth. My cheek inside has gotten so swollen that I have ulcers all along the line of my teeth from front to back...and under the canines and on the bottom, I have VERY deep ulcers where the swelling has surrounded my teeth and into the biting surface. There really isn't anything I can do to stop it, because I've tried blocking it with gauze but I can't risk altering the blood flow to the baby graft. They have a doppler attached that they are checking every day to make sure they stay on top of both the artery and the vein.

Ok...editing later. The place on my chin was a mole I threw in for them to remove. You can see the swelling was all under my neck and pulled my mouth out-of-line for awhile. In some of the pictures, you can tell how shiny and stretched my skin is from being pulled so tight. The stitches under my ear hurt the most and were pulled the tightest. All of the wires heading down to my arms were my monitors. There is one drain you can see that snakes up behind my ear, and the blue wire on the (my) left side is the implanted doppler wire that they used to listen to the vein, and they used an external doppler a few times a day to listen to the artery. Sounded like listening to a baby, and it felt just as reassuring to know all was well. There is a blue stich randomly in the middle of my cheek you can barely see in some pictures. That is the target for placing the external doppler.