Change Of Plans For Surgery #28

Well, I am home from my surgeries and stay in the hospital. Got home on Wednesday afternoon and it was a long ride home trying to get through the pain. So I guess I should explain what I have been through in that one and half week stay in the hospital that was originally only supposed to be about 4 days, as well as only one surgery which turned into two. Okay, from the beginning...

(Checked in, gowned up, waiting for the IV team and holding Whiby, the white blood cell)

We check in at 7:30am and all is going as usual, including taking several, and by several I mean 5, sticks to finally get an IV in. Five sticks is not my highest, I've been stuck higher than 5 times in other surgeries. I first saw Steve, my doctor's PA and he came in to see me and how I was doing. Then my doctor finally came in, already scrubbed up cause he had just got done with another surgery before mine. I gave him a pretty hard time about not ever getting back to me after I didn't see him at my Pre-Op appt. We got some good laughs in about that together. In fact, as he was leaving, I yelled out to him: "Don't forget to come to my surgery!" haha. When I told one of the nurses who first saw me after my surgery and I made it back in to my room, I told her about that and she thought it was awesome, actually praised me for it.

I don't think I have ever been put out faster from an anesthesiologist in all of my previous surgeries than I did at #28. Usually, I feel the sting of the anesthesia (yes, it stings pretty good. for those of you who have had surgery, you know what I'm talking about) and I get a few breaths and blinks in before the lights go out but this time, I felt the sting start, looked at the nurse who was holding the oxygen over my mouth and that was it. I mean seriously, never that fast before, never.

I wake up in the recovery room and of course, as usual, the first thing out of my mouth is, "Did anything go wrong?" or "Were there any complications?" The nurse told me that everything was fine but when I asked what time it was, after asking for more pain meds, she said it was around 1:15pm. Fuck. I knew something did go wrong right there. I'm not stupid, not that the nurse thought I was, she didn't know, but this is how my brain went, and it worked quickly: They were late with my surgery and they didn't finally come get me till about 10:15am, then wheeled in to the operating room and I'm put under from the anesthesia probably by 10:30am, the surgery was supposed to be about 4 hours plus an hour to wake up and all that jazz in recovery and the nurse said it was about 1:15pm? Even if they got done with the surgery in 3 hours that would put me in the recovery room around 1:30pm plus one more hour for recovery puts me at around 2:30pm waking up. So the surgery was only around 1.5 - 2 hours? Yup, something went wrong or did not go as planned. And I didn't find out just what had happened until I was finally back in my room at the OBC...

I am just in my room now at the OBC with my mom and my doctor comes in and gives me the lowdown on all that happened...or more like did NOT happen. Turns out there wasn't nearly enough skin in my tissue expander to even get close to doing what they had hoped. I immediately began crying as soon as I heard that news come out of my doctor's mouth. He told me that they decided to just work on my neck some more and make it more mobile, flexible and have more contour. I continued to cry as my mom held my hand, tears running down my cheeks. Ever since my accident I lived with the most contracted neck, a chin basically non existent that was attached to my chest, staring down at the ground and looking up at people. But I have also been battling the problem of this lower lip. Every time I would go in for a neck surgery, that

bottom lip would pop back into place and we would all get so excited and then days later it would start pulling out again. Don't get me wrong, my lip is nothing like it used to be, but it is still pulled inside out and bothers me a great deal. Since my neck flap last year in August, I thought we had made such advances with my neck that now I was so focused on finally getting my lip fixed. And to have the expectations that it might finally be fixed going into the surgery and waking up to find out that they couldn't even get close to working on the lip was devastating to me. So I just went in for another neck surgery, my 5th to be exact. I also was told that I would have to go back into surgery the following Monday to replace the allograft they had placed underneath my

chin and on some of my neck with my own skin was just another bomb dropped.

So my one surgery to fix my lip turned into not just one surgery to work on my neck some more instead, but two surgeries and my 4 day stay in the hospital was going to turn into 2 weeks. I was highly upset and cried a great deal. I'm used to disappointments like this but it had just been so long since I had one, that I couldn't remember how to deal with it, not that I ever really dealt with any of my complications without there being tears.

(The right side of my neck and the allograft after Surgery #28. You can see there's quite a bit more contour to my neck)

(Front view of my neck and allograft after Surgery #28.)

(Left side of my neck and allograft after Surgery #28)

My mom had to leave on Tuesday afternoon, the next day, to go back to work and I absolutely hate it when she has to leave. I hate being left at the hospital. I love having my mom there, sitting in the chair next to my bed. So having her leave was just another big upset added onto everything else I was upset about. But it ended up being a pretty good week. I had a few visitors, one of which was a girl that I had met over Facebook through Jen and Clay Andrew and we suddenly got to know each other purely over the internet and through Facebook and we were finally going to meet when I was down there for my surgery. So I got to meet the great Jessa Eagan Gray and it was just utterly fabulous. It was like meeting a sister I didn't know I ever had. Yeah, yeah I know that sounds cliche but it's so true. We just connected instantly and so deeply and I had the best time with her. It was wonderful. One of my dearest friends, Michael Koopman also came to see me. He's so good to me and such a good guy. Whenever I'm in the hospital, he's always there to see me. My mother absolutely adores him and always says, "If only he wasn't gay..." ha ha. Funny mommy. But Michael and I always have such great conversations and of course, we always have some good hearty laughs. I also got to see Stephanie Shufelt, a girl that I went to college with. We were never close or really much of friends at all but she connected with me through Facebook as well when I finally let everyone know of my injury and we have gotten to know each other the same way as Jessa and I did. So she came one day and we also had a blast just talking and talking. I mean, it was like we had been close friends back in college and were reconnecting. She was wonderful. My most important visitor though was one of my older brothers, Jake. It was completely awesome having him come see me. We had a good time. Then much to my surprise, Jake came back (the next day, I think?) and this time he brought one of his friends with him, Sandi. They have become good friends since the troubles in Jake's life. She also goes to Pharmacy school with him. She was very cool and I really enjoyed her company as well. They even came back that evening for a short bit! I couldn't believe it! I was being completely spoiled! Before I knew it the week had passed and Jessa AND Stephanie both came back on Saturday and hung out for the morning and that was quite a morning! Jessa brought these stick-on costume mustaches that were all different shapes and sizes and us three put on o

ne of our pick and took pictures, laughing all the way through and so hard that I thought I was going to pop a staple on my allograft. It was hilarious and I haven't laughed that hard in a long time. I also had a few burn survivor friends come say hi for a little while so that's always nice. So thank you to all of my visitors. You made my week go by faster and I didn't feel so alone without my mom being there, though I did still miss her very much.

(My now "sister" Jessa and I with our stylin' mustaches. I love you, Jessa.)

(Hahahaha!!! This one I just simply can't get over! Stephanie Shufelt is making the perfect face to go with that mustache! Whenever I look at this picture I just laugh so hard!)

Sunday rolled around and my dad was scheduled to come up for the next surgery and stay with me till I was discharged to go home. My surgery that next Monday was to replace the allograft with my own skin. Great, I was going to have a donor site. I haven't had a donor site for a long time because I've been doing free flaps, flaps and tissue expanders for quite some time now. I knew it was going to hurt, donor sites are the worst, but I forgot just how painful they are. My surgery was at 7:30am but since I was already in the hospital and IV'd up, they didn't come get me until around 7:00am.

This time, in my recovery, it took me quite awhile to wake up for some reason. They had a bit of a time trying to get me to wake. This surgery I knew would only be about 1.5 hours, not a big deal. I awoke to a big acticoat bolster under my chin and around the top of my neck and yup, the donor site was killing me. They took skin from my left lower leg, about on the shin. Back to my room I go and spent another three days there with my dad until I was discharged on Wednesday.

(Surgery #29: the Acticoat bolster. Underneath it is my skin, the allograft has been removed)

(Surgery #29: My donor site where they took the skin. You cannot see the actual donor site itself because it's covered and must stay covered for some time to protect it.)

My doctor told me he was going to have a discussion with this burn specialist on the East Coast (a doctor that my doctor worked with for a time) about options for not just my bottom lip but also increasing the size of the opening of my mouth. So we'll see what comes of that. Once again, he assured me he wasn't going to give up on me or stop working on me until I say stop. It just never seems like I can get ahead, or even catch up for that matter. It's always one step forward, two steps back, or even attempted steps forward but ending coming out of it three steps behind and this is not because of my doctor, but because I am a difficult patient when it comes to things going correctly in the surgery room and healing properly afterward, not to mention I was so badly and deeply burned that the people at the OBC hadn't seen such a burn like mine in a long time, if ever for some.

Well, quite an ordeal I had during those 1.5 weeks. The surgery I was hoping for did not happen, but I do have more movement, mobility, extension and contour in my neck so at least when the original plan did not pan out, my doctor was able to figure something else out and quick. Now, I am just hoping that nothing else goes wrong and the graft on my neck takes. We'll find out next Tuesday when we are back in Portland for a post-op appt.

I want to thank you all for your wonderful love and support. It has truly helped get me through this journey. Thank you.