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.                                                                                                                                             

The end is in sight

It has been a really long couple of weeks.  I was 1st admitted to the hospital on March 24th.  I have been in the hospital for 4 weeks and 3 days now.  1 week prior to this admission, I had spend 24 hours in the hospital with chest pain that  turned out not to be cardiac related but the beginning of an asthma exacerbation.  I am scheduled to go home on Friday.  I can't wait.  5 weeks of  being in the hospital is a really long time.  It's my new hospitalization record.  I hope it stands for a long time.

Over the weekend, it seems like my strength increased a lot.  On Friday I started being able to stand from my wheel chair and then pivoting over to the toilet.  It was pretty challenging at first, but it is pretty easy now.  It seems a little silly that the staff has to supervise me since they just watch to make sure I am ok.  I couldn't really take any steps on Friday on land or in the pool but today I was able to walk about 20 feet both within the  parallel bars and with a walker. 

Tomorrow my PT and  OT will  have a meeting with my rehab doctor to discuss my progress.  They are going to recommend that I be allowed to be independent in my room for all of my activities in preparation for discharge on Friday.  This week we are going to continue to work on arm and hand strength by working on my quilt block, leg strength and flexibility, core strength, fine motor skills and lots more.  When I go home, I will have Rehab without Walls which will come to my house for a few months to do therapy and continue working on all of these things.

I'm sure everyone is tired of  hearing about the hospital so I can start writing  about other things.  I also plan on starting to write some of my like history in this blog.  I have a booklet with life history prompts and I plan on  using those prompts as my post title and then my entire post with center around that prompt.  Maybe one of these days I can just make my blog into a book with some minor editing.

Progress Report

It's been a few days since I updated this because it's been just the same thing going  on every day here.  I've been going to PT and OT and getting a little bit stronger each day.  Today we added pool therapy.  Here is a break down of the things I couldn't do when I got out of the ICU but I can do now.  Some of  them are pretty small things, but are a big deal for me.  They are big steps toward independence even though they seems like such small things.  First of all, I can  roll over by myself and position myself in almost any sleeping  position.  I still have a little bit  of trouble if I need to position pillows under or between my legs but I can  get into a comfortable position on my own.

2nd, I can sit on the edge of the bed without falling over.  The last day that I was in ICU, the therapist had me try to sit on the edge of the  bed and  I  could not hold myself up.  I still have a little bit of  weakness in my trunk that shows up at various times, such as when  I am trying to stand, when I was in the  pool, and when  I am trying to bend over to pick  something  up from a sitting position and coming back up (like if I drop something)

3rd, I can transfer from my chair to the bed and vice versa independently.  I started doing  this  independently only 48 hours prior  to going to the ICU.  It's the quickest way for me to get in and out of bed.  This became possible only because my trunk became strong enough to hold myself upright.  I used a slide board to do this transfer.  The slide board created a bridge between  the chair and the bed or whatever else I am transferring to and I slide across the bridge.

The biggest thing is I can stand a little bit.  This allows me to do a stand pivot transfer to the toilet from my chair..  Using the transfer board on the toilet is really hard since it isn't an even surface and it is very slippery.  Now I can stand perpendicular to the toilet, pull my underwear down and swing my hips over to the toilet.  This gives me a huge amount of  freedom when I am out in public.  I won't have to carry my slide board with me when  I  go places or have to figure out  how to maneuver in a handicap stall that is just a little bit too small.

Overall, my strength is coming back too.  When the doctor does a neuro exam,  they assign a number to each  extremity for strength ranging from 0-5.  A score of 5 is a normal, strong extremity with no deficits.  It's been a long time since I have scored a 5 on a neuro exam.  A score of 0 means the extremity being examined is paralyzed, no spasms, no muscle tone, completely flaccid.  When my right leg is paralyzed from my MS flares, it never scores 0 because I always have spasticity and high muscle tone.  It was usually 1 initially because I had muscle tone and spasticity but no voluntary movement.  When I was in ICU last week with my full body paralysis, my neuro exam score was 0 on all 4 extremities.  Today, I scored 4- in my arms, 2 in my L leg and my Rt leg is a 1+.  These numbers are a huge improvement from my ICU time.

I have 1 more week in rehab and then I get to go home.  It seems like I have been here forever.  I am so ready to go home.