Going Home Thursday

I had intended to post updates while I was in the hospital, but things have been a little crazy.  Plus, I have had a lot more trouble with my hands this time.  It has affected my writing and definitely my typing and many other areas I have yet to discover.  I'm sure it will be an issue with my sewing. 

When I moved over to rehab, I was pretty weak.  After all the evals were in and we got a response from insurance, it was decided I would get to go home on the March 14th.  That would make my full hospitalization 3 weeks long.  Now, I have been in rehab for 11 days and I am doing better than they expected, so now I get to go home on the 12th, after Dr. Latorre refills my baclofen pump.

There has been several things different about this hospitalization.  First of all, the movement to my upper body came back slower than normal.  It took 3 days for me to start being able to move my hands, then once I could wiggle my fingers a little bit, it took more than 24 hours before my arms were strong enough to feed myself. 

I had my evaluations at rehab 6 days after the onset of paralysis.  Usually, I don't have too much trouble with the slide board transfers on my eval day.  They are a little challenging due to weakness, but I know the technique well.  This time, I could not transfer on my own.  I needed help to get from the bed to my chair.  I still had the indwelling catheter in, so I didn't have to worry about transferring to the toilet just yet.  Toilet transfers are much more difficult than bed transfers.  The slide board doesn't fit onto a toilet seat very well.  During my 2nd or 3rd admission for ascending paralysis, I discovered it is much easier to just slide directly over to the toilet from my wheelchair rather than trying to use the slide board.  I have been doing it that way ever since until I can do stand-pivot transfers.  However, my catheter was discontinued around 6pm on the 1st day, but I was already done with therapy, so I had to I&O cath from bed.  It didn't take too long before my transfers were much easier.  They still weren't easy though.

The other thing that was different this time is the staff has been more knowledgeable about my diagnosis.  There was a rather extensive medical journal article published recently about Functional Motor Disorder, which is just another name for Functional Neurological Disorder.  Recently, the staff here had a journal review of the article.  This means they have all heard of it and actually have some information about how it is treated.  This time my therapy has been a bit different.  We have tried to do  more movements that are "natural" so my brain will use the proper pathways and not the messed up pathways.  We are going to continue using this PT method in outpatient PT.  I am also going to start cognitive behavior therapy to start trying to eliminate the messed up "software" in my brain so it will only use the proper "software"/pathways.  Hopefully this will decrease the severity of the paralysis episodes and put more time between the paralysis episodes.  Ideally, I would like them to eventually stop, but I know from the blessings I have received that the time for that has not come yet.

The other big news I have is I have a new calling.  I have been serving as the Relief Society secretary in our ward for the last 8 months.  I was supposed to meet with a member of the bishopric the Sunday I was admitted.  When my paralysis started, I called the executive secretary and told him I wasn't going to be at church the next day and asked if they could do the interview over the phone.  I got a call about an hour later from the 2nd counselor in the bishopric releasing me as secretary then calling me as 1st counselor in the Relief Society presidency.  I was a little nervous about a calling with so much responsibility, but I know that the Lord is aware of my situation and the new Relief Society president is aware of it also, since she is my ministering sister.

I found a book on Amazon called Overcoming Functional Neurological Symptoms.  It is suppose to help with reprogramming my brain and helping me access the normal pathways in my brain and eliminating the abnormal pathways the FND has created.  I just started working on it.  It is actually a workbook, not just a self-help book.  I will also be starting cognitive behavior therapy specific to FND that will hopefully help eliminate those abnormal pathways.  I am starting things off by keeping a daily journal on how I feel both emotional and physically as well as documenting the things I do.  We are hoping we can find the trigger for the paralysis episodes. 

Devotional from a prophet of God

Here is a little video clip about the devotional in San Antonio we attended.  I didn't know there was a Q&A with the prophet and some youth.  That would have been so cool to attend.  Jeremy would have asked him "Where is the sword of Laban?".  There was a Q&A with the stake president and  our youth a few months ago and that is what Jeremy asked the stake president.  He answered by quoting a scripture in the Book of Mormon that simply says "I know not".  I can't remember the reference but I will ask Jeremy later and come back and add it.

This is beginning to be a habit

I know it seems like I only post when I am in the hospital or when something is wrong, but that is about the only time  when my life slows down long enough for me to write.  I do want to find more time to write because I want to write my life store but I don't want to post that entire thing on my blog.  There are so many people wanting updates though that I thought I needed to start updating again.  I also have been writing out my weight loss story and I do plan on posting that.  I'm going to post that in sections because it is 6 pages long in Google Docs.

So, on Sunday, we had an amazing opportunity.  President Russell M. Nelson came to San Antonio to speak at the Alamodome.  We left the house at 2pm and  got there and into our seats by about 3:45.  He wasn't speaking until 6, so there was a lot of waiting around to do.  There was a lot of people there.  One of the speakers said there were over 23,500 people there.  Elder and  Sister Bednar spoke.  Sis. Bednar's talk was about 5 things she learned living in Texas.  They lived in Texas for a while before Elder Bednar became president of BYU-I.  Several of their grandchildren were born in Austin around the same time I was having my children. Bro Ochoa of the 70 and his wife spoke.  Then Sis. Nelson spoke about what life has been like since her husband's call to be prophet and the change she has seen in him.  The President Nelson spoke.  His talk was a lot about the gathering of Israel both here and in the afterlife. 

So while we were there, my central nervous system decided to go haywire again.  When the prophet came in, I could stand.  I listened to all the speakers and waited until the general authorities were escorted out of the Alamodome.  I went to stand up when the prophet was exiting the stage and my right leg was paralyzed.  Since it was only the 1 leg, we thought it was going to be a normal MS flare and not an episode of ascending paralysis.  Monday morning when I woke up, my left leg was also paralyzed.  Now we were facing something new.  I have never experienced the paralysis onset like this before.  We weren't sure if this was an MS flare with bilateral paralysis or the start of another episode of ascending paralysis.  I didn't have any weakness anywhere else.  Stan stayed at home for an hour to see if I was going to get any weakness but decided to head into work around 9am.  I emailed Dr. Westgate to find out if she  wanted me to go to the hospital or go in to see her.  She emailed me back around 11am with instructions to go to the hospital.  I had just decided that I needed to go there anyway because my arms and  torso had started to feel weaker.

We got to the ER and they took me back to the room right away.  The ER doctor came in pretty fast too.  He had already looked over my history and my records from my previous hospital admissions.  It was already decided that I was going to be admitted.  I just had to wait on the attending doctor to come see me and for a bed to be assigned.  It took about 3 hours before I got up to a room.  By that point, I could only shrug my shoulders a tiny bit.  We were really surprised that they admitted me to a regular room this time and not the ICU like the last 2 times.  I got to my room around 6pm, got my dinner ordered.  Stan had to feed me.  After the boys visited and went home, I tried to go to sleep, only to wake up about 15 minutes later choking on my secretions.  I couldn't swallow my own saliva and I was having trouble breathing.  The ICU manager came up to my room and stayed  with me until the doctor could come evaluate me and they could get me transferred to the ICU.  The ICU doctor saw me as soon as I got to the unit and decided I was didn't need to be intubated yet and they wanted to wait to see if I could turn things around with the 1st dose of IVIG since it was currently infusion.  They did some breathing tests frequently over the next several hours.  I stayed borderline until partway through the next day.  I was finally out of the woods breathing wise by early afternoon.  I still required oxygen though.  I wasn't allowed to eat or drink anything except for 1-2 ice chips per hour because I couldn't swallow without choking.  That lasted until the next afternoon when   I was allowed to start with soft food and slowly advance my diet.  I finished my IVIG on Thanksgiving early in the am (like 4am.)  By the time the doctors rolled around at 9ish, I was able to lift my arms off the bed a little bit, move my hands, move my torso some and wiggle my toes just a tiny bit.

I've been out of the ICU for 3 days now.  I can raise my hands over my head well enough that I can braid my hair.  I can lift my torso off the bed.  I can turn myself with help.  I still have very little movement below my waist except that tiny twitches I have in my feet and my upper body is very weak.  I can't open my milk cartons, or some of the bottles, like soda bottles, but I am getting stronger every day.

The plan is for me to be transferred to the rehab hospital as soon as insurance approved the referral.  I'm going to call on Monday and find out when they estimate an answer.  I know I only have 60 days of inpatient rehab per year and I have used about 34 maybe, so I still have 26 days, almost 4 weeks worth.  I shouldn't need more than 2, maybe 3 weeks.  I usually bounce back really fast from these once I start going through PT/OT, especially

When the neurologist saw me in the ICU (not my normal one, but the one who saw me the last time I was here), he did make a few recommendations for me.  He thinks I should go see a neurologist at one of the teaching hospitals in Houston or Dallas once I am able to travel.  Dr. Westgate, my regular neurologist, has mentioned this once already to me, so she has been thinking this way too.  She hesitated though because the one I saw in Houston prior to seeing her said that my symptoms were being caused by stress.  I have no doubt that stress makes my symptoms worse, but they are by no means the sole cause of them.