Saturday, October 24, 2009

Out and About

Today was so much better! The post surgery pain seemed to linger for 36 hours where at first I felt stuck in bed barely able to rotate my head or shift my body from soreness and oain radiating from my incision on the back of my skull down through my neck.\t

It seems once the steroids kicked in or when I startes them the swelling went down anderapy were satyain subsided. My last shot of morphine was this morning ( or rather yesterday morning - it is 2 am right now). This afternoon the nurse took the central line IV out of my neck as I no longer needed it for morphine injections.

After my MRI scan and PT session today, I never went back to bed except for the 15 minutes to half hour I lied down after the central IV line removsl. hehe I even told not to wander the floor by myself as I had been caught doing by myself when I went to get ice water.

Very briefly they tried having me use a walker but I was too fast so we moved to one lap around the floor with a 4 prong support cane. when that seemed to go very well, we switched to a single cane which really acted as more of a security blanket. Both physical therapy and occupational therapy were satisfied that I had the skills to go home and they did not need to see me again. So maybe I will be discharged tomorrow.

I stayed out of bed and wandering around the room or in a lounge chair for the day/ In the evening Harley and I took a stroll 2 flights down onto the garden patio outside. Then we made 5 quick laps around the brain surgery ward floor. I became more independent as trhe evening progressed moving around my room as if nothing happened to me.

The only down side right now is that I have a mojor facial movement problem which at first glance looks fine but is not. I really pray that it is only a tempary setback. At first I was thinking "ok, I guess I will not be going out to eat in public anymore and confine myself to soft food and protein shakes for the rest of my life.'" But thinking about it more in depth and experiencing it brought up more serious issues. First off the problem is I am unable to fully close my mouth or smil with my lips closed. Thias causes my mouth to dry out and become parched very rapidly. As result, my speech is hindered and becomes slurred as my lips start to smack together from the dryness. Once this happens, it is very difficult to drink again only thru a straw. I have to play arounde with positioning just right so I am sucking in liquid and not air at the same time causing liquuid entering my lungs and choking me. It has caused a few complications with taking the meds but I have gotten better at strategizing. My biggest concern of course is how I would scuba dive and if I still be able to breath off a regulator safely without water pe3rforating in my lungs,

So tomorrow I DEFINITELY need to meet with the speech therapist and learn some exercises to tery and build up my facial function again. I was a little discouraged to not get a visit today so I tried to remember aome of the exercisesa from 2 years ago. I spent a good portion of the evening stretchinmg out and emia in hoplaying with my mouth and tongue. I cannot even pucker a kiss sadly. So please saend prayers and healing vibes my way that my facial function will recover.

Thanks for all your love, prayers, and support so far. Know that your actions have paved the way for miaculous things! It is amazing how quickly my recovery is moving along from this surgery. I have absolutely no doubts I will be racing up the columbia tower in march in the big climb for leukemia in honor of my friend skip whoo passed away a week ago from acute leukemia.


Unknown said...

I know that you don't know who I am but I was talking to my mom and decided to look for other people on here with her disease. I know how hard it is for you to be going through this and how hard it is for your family. I am 21 and have watched and helped my mom with this disease since I was 4. She's had 6 surgeries but only takes them out when they become too much for her or are life threatening.She's had surgery for tumors in her brain, spine, arm, uteris, foot, and leg.

She has so many that just in her spinal cord they quit counting them after 40 plus the one in her brain is growing back. She is now completly disabled but still is so happy and hopeful. She does everything possible to help everyone.

Good luck to you. If you ever want any info on stuff about NF2 and things we have learned about it let me know. With dealing with it for so many years and there not being many doctors that really are specialized in it. We had to teach every doctor every time what was going on with her. Keep strong and remember that there is a strong support group of family, friends, and other people with the same disease who will help you in any way they can.

Esther G said...

Hi Becky,
I can't do the climb for LLS but I will be there to cheer you on. I am so proud to know you and believe me you are such an inspiration to me and to friends going through a rough time right now.

Jamie said...

I am glad you were released and are on the mend! Fantastic!!!

Facial function improves with time and use. You have already come a long way! With the face/mouth/throat, I highly recommend Chapstick moisturizing with SPF15 applied liberally and continuously (the stimulation of applying it and then pressing your lips together when it's on improves closure, as does the "sealing effect." And keeping our lips moist helps with dry mouth overall.) You can massage your cheeks and gums when you brush. Manual brushing movements are also great for hands and coordination pathways. When on roids, I drink tons of water, and that helps with everything. (Tapering off roids is another matter, but I would hope that you having a shorter and milder history with them will mean a smooth ride for you.)

You can gently apply pressure in circular motions to your mouth and cheek areas, working from center outwards. And there's the old standby of annunciating the vowels and/or entire alphabet to keep things moving and strengthen mouth muscles. Doing shoulder rolls and paying some attention to your neck and shoulder muscles help too--strengthenening swallowing, even.

The best way to remain patient is by focusing what IS working mentally and physically, and viewing any and all gains as icing, rather than anticipating limitations. Be receptive to healing, while being mindful of the present moment. ;-)

You are doing great! And I am also of the school of finding high quality living in all functional states. Rock on, Beck!

Laura, Cody and Destiny said...

We are so thrilled that your surgery went so well! It is amazing that you are up and moving about so much, but I am not surprised! As long as I've known you, you have always been a strong, positive person and inspiration to all. We wish you all the best!!!!!