Here is the account of my hospital and recovery experience if anyone is interested:
Ok, so I’ve been my positive upbeat self but to be true to my blog and to you if you really want to know, here are the details. I’ll try not to be all over the place with topics as I can say for certain that I now know what it means to be “wonky-headed�. This too shall pass…or so they say.
Wednesday morning Chris and I were at the hospital early. We actually got up at something like 4:30, couldn’t sleep, and walked to the hospital. It was a brisk maybe 10 minute walk but it was nice outside. At seven we were shown to the little room in which I would meet my doctors and wait. My parents got to the little room at about 8 and it was snowing like crazy! As Chris mentioned, a guy from the ENTs office asked me to sign another form saying that I might need a spinal tap and possible some other lovely form of skin graft from my leg and mentioned that his wife had an AN several years ago. I’m telling you God placed specific people in our path from Day 1. Anyway, after that guy was a anesthesia Drs., two, one of which was the head of the dept. and I was later told I had the “A� team, and knowing now I agree. Anyway, very nice folks but no time to waste. We were told it was time to say “goodbye� so with a kiss and a wave and an “I love you� in my non-hearing ear from my mom
, I was wheeled out. Down the hall and into a room, the size of, oh I don’t know, maybe the fellowship hall at church? It was filled with shiny equipment and lights. I mean, unbelievable amounts of equipment. They moved me from my comfy bed to the gurney, I positioned my angels around me (thanks Gayle!), made small talk with the Drs. as they put that mask on my face. The Dr. told me to take several deep breaths and that was it.
The next thing I know I was being wakened from a very deep sleep and the cobwebs and pain, oh my goodness. It was 6:30pm. I was being asked if I had pain…um yeah. A “9″ I called out. I can’t seem to bring myself to say I’m having the worst pain ever because, what if it gets worse? Does that make any sense to anybody but me? Anyway I asked how long I was under and they said “11 hoursâ€?. I immediately started calling for Chris, I was so scared for him, knowing he would be worried to death. “Go tell him, go tell himâ€? They told me because it was shift change, what lucky timing, I wouldn’t be able to see him until 8:30pm. I looked at the sweet RN and promptly told her jokingly that I knew who she was, she was the one with the “vomit vacuumâ€?. HA HA I admitted I’d read lots of stories about this surgery. I can’t tell you if she smiled or laughed, she just kept being nice to me. The Dr. came in at some point and told me about how the tumor really stuck to the facial nerve and that he would be very surprised if I didn’t have a bout with temporary facial weakness/paralysis. Because the nerve was working now was a great sign that no permanent damage had been done. Oh and he thought the tumor was “benignâ€?. I just assumed that was a given so now I wait for the official results on that. About quarter after 8 I asked the student nurse for the phone because I wanted to call Chris. He gave it to me and went to ask about calling long distance. He came back a few minutes later saying that it would be a collect call and wasn’t my husband in the waiting room?? I started getting agitated at this point. At 8:40 the student nurse came in and said he was going out to find my family and I told him to “hurry upâ€?. About 5 minutes later the Dr. came in and said he couldn’t find my family, did I know where they were, what is Chris wearing, blah blah. He left and at 8:50 here came the Dr. and Chris and my parents, they’d all run into each other out in the hall. And thus my…â€?where have you been?â€? Ok, so I’ve told you that part. I had a couple of injections of morphine over the next hour and I was properly numbed up so it felt fine to visit with my family although I did make them all stand at the end of the bed, together, because to look anywhere but straight ahead made my head spin.
Wednesday night and Thursday early morning were very long. I was in Neuro Critical Care Unit and was not only poked and prodded but waken every hour to have a light shined in my eyes, smile, and move my arms and legs. I had pressure cuffs on my legs that alternated pumping up to keep from getting blood clots. Those “leg warmersâ€? were my friends until I checked out several days later. Sometime in the night I got tangled up with the tape on my oxygen tube thing (they had to tape it to my bandage because my ears were covered up) and when I called the nurse she just removed it. I was basically seeing double at that point, having trouble focusing, and dizzy. I had a huge bandage all the way around my head with a nice big knot on the side like they tried to make it look nice. And it wasn’t bad. I have a 2-3″ stitch scar on my belly from the fat graft that held more wound pain over the week than my head. I felt up to eating and hadn’t been nauseous so I got a breakfast plate, a Denver omelet, potatoes, and a danish. I was surprised it wasn’t clear liquids of some sort but…ok. I ate a little. By noon the nurse had me standing and when I proved that I could walk to the potty with help I got my catheter out. Oh the little joys in life. By afternoon a room in the Neuro Acute Care unit opened up and after a quick bath and removal of all the little stick-on leads and artery line, I was moved. (The Art Line is like an IV only it goes in the artery and they can easily draw blood there and it also measures my blood pressure every second. I’m sure it does more, I don’t remember it all though)
My new room was also private and “new�. The wing had only been open for about a year. It had a nice chair and little fold out love seat for Chris should he choose to sleep there. I was down to 2 IVs and after I proved that not only could I walk to the toilet but could also use it enough to make them happy, 1 IV came out and the other was left in (not being used) until check-out. Chris and I walked several times and while the double-vision was getting better, the dizziness was still constant. I’d developed a pressure sore on my left hip from laying on my left side throughout my surgery. It was a big “hot� knot with numbness down to my knee and up to my behind. Ice packs have kept it at bay but its still sore today. Walking really helps everything but it also makes me very tired and ready for a nap. Thursday and Friday were about the same, just more walking. Each morning starting from the first, teams of doctors (learning hospital) from the neurology dept would come at 7am sharp. One would speak, ask questions, ask me to do things like stretch out my arms, touch my nose, “what day is it� “where are you� “smile� “squeeze your eyes shut�, the others would all nod and write things in their books and off they’d go. Fifteen minutes later the ENT docs would come and do the same thing. After that I would see a doctor in the afternoon on rounds. Admittedly they did look familiar but I really couldn’t tell you if they were the same doctors each day or not.
Saturday when the second group of doctors came in, one took my headdress off. He said it should just slide right off, and it did with a little coaxing and at the expense of some unreleasing hairs.
The bandage must have been on nice and tight because the minute it came off a wave a heat came over me. The docs left and I immediately took a picture with my phone so I could see it. Ewww. I have dissolvable stitches though so a little less Frankenstein-ish than staples. By the time the nurse came in I told her I thought I was going to be sick, not sure if from the blood rushing to my head from the tight bandage or looking at it. She gave me a shot of zophran in my remaining IV port and I was good to go. They told me from the beginning that getting sick would make my head hurt much much worse that it already did so I was avoiding that at all cost. Saturday I felt the worst just because all the aches and pains were real. On top of that I felt dizzy and tired and not much in the mood for walking. And I was scared to leave the hospital, not really feeling ready. After a short nap I had visitors! It couldn’t have happened at a better time and it was just that extra shove I needed to get checked out. Deana, Darrelyn, and Barb were there, in SLC, all the way from home! How awesome was that?! We visited for a while and after they left I was ready. Chris gathered up our stuff, the nurse did the discharge orders, we ate lunch, and finally when the transport guy showed up, I was pushed out in a wheelchair at what seemed like mach speed. I don’t know if he was really going fast or if it was just me but I had to close my eyes trying not to get the spins.
Chris and I’d decided to spend one more night at the hotel near the hospital just to be sure. My friend Marj and her family came for a visit (again, from home!) at the hotel. Marj and I compared war stories although her AN was treated with gamma knife radiation and mine with surgery, still so many common feelings and emotions. I still find it hard to believe that God found time to give me a friend with this illness in common long before mine was diagnosed. The sleeping part was long and uncomfortable and the ride home was long but enjoyable. Chris and I had some nice time to share how this experience has changed us and bonded us in new ways.
Here I sit, on my bed, I can hardly type another word. I’ve been at the computer almost an hour, maybe more, and my head is swimming. I’m wearing a crocheted hat that I made on the way to Salt Lake last Monday afternoon. The kids inspected the scar at a distance and Addi is still afraid to come to me. I get around where I need to but my balance is a little wobbly. Still constantly dizzy, more so when I’m tired, which seems like most of the time. I still have scabs on my hands and arms from the IVs and my hair hasn’t been washed since last Wednesday and won’t get a scrubbing until this Tuesday. Fortunately for all of you
, I can bathe. My facial features are completely symmetrical at this point but I haven’t ruled out any temporary weakness as it can still happen. I have a constant head-ache (aching pain, not wound pain) but it is kept at bay with pain killers. I mentioned morphine earlier but I had two “shots� in my IV immediately after surgery and from then until now just minimal percoset and I should be using less and less of that as the next days wear on. I expect the dizziness and balance issues to be what takes the longest to recover from. Along with the pressure sore on my hip I also have a very sore jaw on the right side, could be from the AN, could be from the breathing tube. There is also a metallic taste on my tongue, I eat knowing the taste but its just not there. Sounds funny but I’m very concerned about that coming back, I love my food.
Oh, and I’m deaf on my right side. That hasn’t been as much of an adjustment yet I’m not sure why. I think partially because I was down to 70-some percent word recognition prior to surgery. I have mild tinnitis (ringing in the ear), its actually more like moderate now but hopefully it will tone down as the noise in my head settles. Also I feel a lot of pressure in my non-hearing ear, like pressure from the inside of my ear drum pressing out. The fatigue is coming from my brain having to work so hard to keep me standing upright and focusing. I have lifting limits (none), I don’t think I’m supposed to drive, sneeze, strain, and absolutely no house cleaning
for several weeks. I go back for follow-up appointments in a month.
One part down, may the next and longer part begin.
