The Faces of Guillain Barre 2017: Day 28- Denise

Sunday, May 28, 2017 0 Comments

Little did I know that my life was going to change dramatically in the very near future.  It was a beautiful Friday (June 24th) and I was so excited as we were getting Ava (our 8 month old Grandaughter) at 10 am and were having her for the weekend while Jake and Erin went up north.  Beth (my youngest daughter) and I took her out for breakfast at the Lancer and then to Dunc’s (my husband) work and then to my work. Beth watched her while I drove my bus run in the afternoon and ended up watching her after supper also as I was not feeling very well and ended up going to bed.  Saturday was much of the same.  I was a bit dizzy and figured my vertigo was kicking in again.  Spent most of the day in my bedroom.  Sunday morning Beth had to go to work so Dunc stayed home from church to help me with Ava.  Jake (my son) and Erin (his wife) got here about 11:30 and after a short visit took Ava home.  I was glad as I went back to bed.
Monday morning I still didn’t feel well.  I took my sugar and it was 10.6 which was a lot higher than I like.  Angela (my friend) came to visit and I told her how I was feeling.  Dunc was out of town til Wednesday.  Tuesday morning I was feeling worse.  I took my sugar and it was 13.2!!  Okay time to go to the Dr.  We were suppose to leave on Thursday for Chicago.  I definitely had to feel better.  I had diarrhea and some vomiting so was thinking I had a flu and that was why my sugar was up.  Called Dr. Zuliani’s office but no chance of an appointment that day and they were closed on Wed.  Went to the Walk in clinic.  The Dr. There started me on Janumet right away and ordered a bunch of blood work for me.  I left there and had a nap.  That night was Kobe’s (my grandson) grad so Beth and I went to see it.  I felt rotten but I knew I had to go.

Wednesday morning I went for the blood work and then back home to take it easy.  I was not feeling any better and decided I couldn’t leave on Thursday to go to Chicago.  We went to Lindsay (Daughter and her husband) and Brian’s for Kobe’s grad dinner at night and I didn’t eat much.  Thursday and Friday I spent most of the time in bed.  I had a fever,  still vomiting and diarrhea.  By Saturday morning I got Duncan to take me back to the walk in.  They had my blood test results back and sent me to the emergency to have some special test done.  After 8 hours and a few tests I was diagnosed with a UTI.  The Dr. put me on a strong antibiotic for 10 days and sent me home.  By Sunday I still  felt so sick that we decided instead of going to Chicago, I needed to stay home and get better.
Dunc was home to take care of me but the antibiotic made me sicker.  I didn’t feel good at all.  That whole week was spent mostly in bed.  By the following Monday Dunc left for New Mexico and I still had 3 days left of the antibiotic.  By the Tuesday I couldn’t even swallow the pill with out gagging. I quit taking it.  Wednesday I started to feel a bit better.  Lindsay asked me if I wanted to go and get my nails done with her on Thursday and I jumped at the chance.  We got our nails done and went to wendys for lunch where I got a baked potato and a small frosty.  Then we went shopping at Giant Tiger.  By then I was pooped out and needed to rest.  The next day we were leaving for our family reunion at Martins (my brother) and I was so excited because all my kids were coming and that was a first.

Thursday evening I went to bed really early because I wanted to get lots of rest.  Dunc had packed the car before he left and the kids were taking care of the food.  So I didn’t have to worry about to much.  I woke up lots that night.  I was sick and still had diarrhea and then my bum was numb.  Next time my right hand was all tingly with pins and needles and it wouldn’t go away.  When I woke up next time my left hand pinky and ring finger were the same way.  When I woke up just before 6am I felt a dull ache between my shoulder blades.  I felt absolutely horrible. I was alone and didn’t know what to do.  I text Duncan at 6 am and asked him if he was awake and surprisingly he said “yes”. (I didn’t know it was 4 am in New Mexico and the reason he was awake was he had to catch the 4:30 shuttle to the airport)  I told him what was going on with my body and how I felt and he didn’t answer me right away. I just laid in bed waiting.  Then he phoned me and told me that Bethany was on her way to get me to take me to the hospital.  He had called her while I was waiting.  So I just laid there till she got home and she helped me put a sun dress on and helped me get to the car.  I felt weak and so out of it.  Once at the hospital I told them my symptoms and they took me in right away and did an EKG. Then put me in a room and so started all the tests. I had a chest x-ray, a cat scan, a few more EKG’s and lots of blood work.  I don’t remember much of what happened that day as I was in and out of sleep.  When I had to go to the washroom Beth had to help me as I was very shaking and unstable on my feet.  My poor Duncan as he was traveling home and so unsure of what was going on with me.  He couldn’t wait to get home.  His plane landed around 3 in the afternoon but the traffic coming in from Toronto was terrible.  It took him till after 6 pm to get home.  Just before he got home I text him to tell him that the Dr. Had come to see me and that they thought I had “had a minor heart attack or that I was going to have one!”  Wow, that was scary!!  By this time my kids were all wondering what to do.  Lindsay and Bethany didn’t want to leave and go to Beeton because they wanted to stay with me, and Amber (daughter and her husband) and Jason didn’t know whether to skip Beeton and just come to the Hospital and Jake and Erin were about 15 minutes away from Martins when Duncan called them all and told them to come to the hospital.  At one point I woke up and looked and all my kids were standing in a half circle around me.  At that point I thought “Oh boy, I must be really sick!”  I felt like I was burning up inside.  I was so hot!

I guess later that night they moved me to the cardiac floor in the hospital and they still weren’t convinced it was a heart attack.  Dunc never left my side that night.  In the morning I barely remember but Amber and Lindsay came to visit and each brought me flowers.  That is all I remember.  Duncan explained much later to me (a week and a bit later) that later that day between 3pm and 6pm I was really struggling to breathe.  He said it was like watching me drown and there wasn’t anything he could do to help me. He said I looked at him and said “Your scarred” so I must have seen in on his face. There were 3 cardiologists that didn’t know what was wrong with me.  They said it wasn’t my heart but said they must be missing something.  Duncan called all the kids back and Martin (his brother) and his Mom.  He feared I was dying and he wanted everyone there.  His mom chose not to come back but to stay home and pray.  She prayed that someone would be able to figure out what was wrong with me and that they would help me.  Martin was talking to the one cardiologist that he knows and he said he was going to get a colleague from ICU to come and see me.  Her name was Dr. Zhang.  She came in and did a few little tests and with in 10 minutes said I am not a neurologist but I believe she has Guillain Barre Syndrome.

She took me to the ICU and intubated me.  I was totally unaware of anything.  Thank Goodness!!  But God was there and he was taking care of me!  Dr. Zhang got me stabilized for the night and in the morning Dr. Chang another ICU Dr. had called Hamilton General Hospital and spoke to a Neurologist there and he said he would take me on.  So I was sent by ambulance up to Hamilton.

So began my 8 days in Hamilton General.  I can only write what I have learned from my family about this as they kept me heavily sedated the whole time.  “Snowed“ as they called it.  I had the life support tube in my throat, a pic line in my neck and a feeding tube. They ran many tests on me I heard.  I had an hour and a half MRI on my brain and spine (which I am really grateful I have no memory of as I am sure I would have panicked for that), an echo-cardiogram, an abdominal ultrasound, a lumbar puncture which confirmed I had GBS, more x-rays, and lots of blood work!! I had all my family spending time with me. In pictures I cant believe it was even me.  I was up there for Duncan s birthday on July 23rd and he told me I gave him the best birthday present.  I asked “How?” as I don’t remember anything and he said I opened up my left eye half way and that was so exciting for him.  Brian brought him  and Martin up a cupcake to celebrate.
I was moved back to St. Catharines on July 25th.  I was put in room 4 of the ICU.

When I woke up there all I could do was blink my eyes.  Nothing else on me would move.  The nurses told me to blink once for yes and twice for no when they would ask me a question.  I can remember thinking I had no way to know if I needed anything as I couldn’t feel anything.  My medications were reduced so I was awake allot.  Duncan said that it had to be the best day ever since I got sick since I was awake so much.  One thing that scared him was the alarms that would go off.  My bloop pressure one was the worse. It went over 280!! They didn’t know if it was because I was in pain or because of anxiety.  My pulse would also send the alarms off.

Unfortunately when I looked at anything I saw everything double.  I couldn’t laugh but I wanted to.  People who came in with glasses were the funniest because I would wonder why they were wearing two pairs at the same time.  Duncan asked me if I saw double and I looked at him and saw 4 eyes, 2 noses and 2 mouths.  Very strange.  This lasted a good couple of weeks.

I got known as the Ice Princess!  I had the temperature turned down in my room as cold as it would go.  Duncan went out and bought me a fan for my room and I had it blowing on me all the time.  I also had to have a cold cloth on my head all the time.  And no covers at all!! Just my hospital gown.
On Friday July 29th they lifted me with their mechanical lift and put me into a wheelchair to see how I could do in it.  It was so uncomfortable!  I couldn’t hold my head up so it was bouncing around like a bobble head.  Duncan held it up for me for a bit and then they put a neck pillow around my neck backwards and that really helped.  My shoulder was in so much pain I couldn’t stay sitting in the chair.

On Sunday July 31st they reduced the amount of oxygen coming through the Trachea and I had to do some breathing on my own.  I was off for about 20 minutes.  That was really scary!  On Tuesday Aug 2nd I was able to sit in the chair for 1.25 hours which was amazing!  I was also able to go longer with little assistance from the ventilator.  I actually went 2.5 hours which they thought was amazing!
On Aug. 4th I was able to go 11 hours on assisted breathing!  By the time they switched me back to the ventilator I was exhausted. I found this extremely hard to do.  I felt I couldn’t catch my breath near the end.  It literally felt as some one was pulling really tight on an imaginary corset and I couldn’t take a deep breath.  I couldn’t talk to tell them how I feel so all they look at is my numbers.  Which include oxygen levels and pulse rate and blood pressure.  As this went on everyday they would stretch the length of time longer and longer.  I would look at Duncan, Bethany or Lindsay whoever was there at the time and I first look at them, then the ventilator and then to the nurse trying to tell them that I wanted to be put on the ventilator and they would all tell me the same thing that your numbers are great.  Your doing great they would say!!  I just wanted to tell them, “I don’t feel great and I want to breathe!!!!” but I couldn’t talk.

Friday Aug. 5th was a day I wont forget.  The neurologist sat at the chair at the end of my bed and told my family that I was chronic and I would be months (a year at least) in the hospital. I had no reflexes no movement and basically no hope from how he sounded.  Well, he just didn’t know who he was talking about!!!  My family had a meeting with the Dr.’s and the nurses and were told what they can help with when it comes to my care and what they can’t do.  They were told it was going to be a long recovery time and not to expect anything quick.

Aug.  9th I had a spa day.  Bethany and Lindsay (my two daughters) came and gave me a really nice sponge bath and washed my hair.  Wow!  It sure felt good.  Its nice having a PSW and a Nurse for daughters.  I went almost 16 hours on assisted breathing.  I felt like they were pushing me so hard.  I don’t like this at all.  I am able to wiggle my fingers a bit.  That’s pretty exciting!

August 14th – today was exciting!  I actually raised my arm a bit off the pillow!!  Funny thing is I just wanted to show off that I could raise my arm and when I went to show Lindsay and Brian, it went up and then flopped over on my stomach.  It scarred me as I didn’t expect that.  Lindsay laughed as she knew from my reaction I didn’t know that was going to happen.

Aug. 15th – Big day today!  I was breathing completely on my own for 30 minutes.  That is huge!!! Today was the first day I didn’t have any alarms go off for blood pressure and no panic in my breathing.
August 17th, today I was able to do two one hour sessions and 1.25 session off the ventilator.

Aug. 24th – I am getting so much more movement. I can touch my nose without smacking my self in the face, and wiggle my toes, and starting to be able to move the trunk of my body!  They tried sitting me up on the side of the bed.  Well that was pretty interesting.  I felt like a newborn baby with no control of my trunk muscles at all.  It was all them holding me up.  In my mind I thought that it would be easy.  Not so when your paralyzed.  The ENT Dr. Came in to see me and told me he was going to change my trachea from a size 8 to a size 6.  I was pretty nervous.  Well he tried but my trachea wouldn’t budge.  He said it must have some swelling around it and ordered some anti-inflammatory medicine and said he would be back the next day!  I was so scarred I made sure Duncan would be there the next day with me so he promised he would take the day off.

Aug. 25th – What a day!  I waited all day it seemed like for the Dr. To come back.  Finally at 4 pm he came in with another Dr.  He said if he couldn’t get it out then the Dr. That was with him would put me to sleep and he would take it out that way.  Well, he didn’t have to pull to hard and out it came. I thought that was bad but nothing could prepare me for him putting the smaller one in.  Duncan and Bethany were there watching and wow, I choked and gagged as he put it in.  I did not like that one bit!  Once it was in he told me that I would be able to talk but I needed to learn how.  I had to take a deep breath and then try to say 1,2,3 when he told me.  So he told me to take a big breath and he plugged the hole in my trachea and I said 1.2.3 in the smallest voice.  It was so cool.  I was going to get to talk!! After he left the Respiratory therapist got it all secured and put what they call a “cork” on it and then I could talk.  I was so excited that I didn’t know what to say!  I had waited so long to talk.  We face timed all the kids and my friend Pat (who also had GBS 10 years ago) so I could talk to her.  I talked for about 2 hours straight and then I was tuckered right out.  They uncorked me and put me on the Trachea mask.

August 27th – I asked the Dr. When I could have some ice chips.  My mouth wanted to have something wet and cold.  He said I could have them now!  I was so excited.  6 weeks since I had been able to put anything in my mouth besides when they brushed my teeth.  That first ice chip tasted like a big steak dinner!!  It was so good.  Then the nurse said I could try water and if I could drink that they could give me a diet ginger ale.  I said bring in the water.  That was pretty easy going down so next came the ginger ale.  It was like I was at a party!

Aug 29th – today I had a swallow test to see if I could swallow okay.  I passed no problem so they told me I could have pureed food.  I wasn’t sure how that would be but it was roast beef, mashed potatoes and veggies.  It was amazing!!!!  I couldn’t eat a whole lot but it was really really good.  I think I ate all the meat and a bit of potatoes.  YUM!!!

On Sept 1st I was moved out of the ICU.  I was moved into the PCU!
Sept 6th the best day ever and scariest, I got my trachea removed completely!!!  I was able to breathe all on my own.  They don’t stitch it they just cleaned it up and put gauze over it and a big band-aid. It looks like a bullet hole. lol At first I tried to talk and the hole would blow air out of it and it felt like the band-aid would blow right off.  Funniest feeling ever.  But that only lasted about 45 minutes and then it was fine!  They switched me to minced food today!!!

Sept 7th I was moved to a regular medical floor.  Physio came and got me to sit up on the side of the bed and this time I could actually sit.  I sat unassisted briefly.
Sept 8th – I was able to sit unassisted for 10 minutes and move my legs and arms without loosing my balance.  They decided to get me to try and stand but the pins and needles in my feet felt like daggers and I couldn’t do it.

Sept 9th – was able to sit for 15 minutes on the side of the bed.  Feeling so much stronger. Was taken to Niagara Falls General Hospital to start my rehab program.  This was the first time that I wasn’t in a private room.  I had a room mate! A 100 year old! She was pretty much deaf and blind so not much talking took place between us.

Sept. 13th – Physio came and took me to the physio room.  I was shocked when she told me they were going to try and stand me up. They pushed my wheelchair in between the parallel bars.  I had 3 physio helping.  One on either side and one on a stool in front of me.  She put a sheet around my lower back and held on to it.  They told me on the count of 3 she would pull the sheet and they would help me up to stand.  I DID!!!!  I couldn’t believe I could stand and that it didn’t hurt my feet.  I couldn’t wait to get back to my room to call Duncan and tell him!!  They did this 2 more times and the one with the sheet didn’t pull and told me I did most of it myself!

Sept 14th – This was a big big day for me!  When I got to physio I thought they were just going to get me to stand again but they wanted to see if I could walk.  I was really nervous and thought no way!  But once I was standing in the parallel bars she told me to move my right foot first and to slowly try to walk!  I walked 15 feet of the parallel bars!  She let me rest and then brought over a walker and had me walk another 20 feet with the walker.  I was Ecstatic!!!!!!

Sept 15th – Today was the first day since I got sick I was allowed to have an actual shower.  The PSW wheeled me down and helped with allot of it.  I washed my hair and was able to wash my upper body which was so great!  Unfortunately that tired me right out and when I went to physio I was unable to even stand up let alone walk.  I was really disappointed.

Sept. 19th Duncan took the day off to come and see my do my physio and occupational therapy.  He was amazed at what I could do.  He even treated me to Swiss Chalet for lunch!!

Sept 20th – I finally got my feeding tube out.  I couldn’t believe they literally just pull it out.  Again no stitches just gauze and a big band-aid.  Yay I am free of all foreign objects in my body!

Sept 28th – I was able to walk up and down 4 stairs!  This is exciting as I have to be able to climb 5 in my house to get to my main level.
Sept 29th – I got moved to Hotel Dieu Shaver rehab center.  This is my last stop before I  finally get to go home.

Sept. 30th – Well today didn’t start out the best.  I was in the washroom and somehow I ended up on the floor.  I went down in slow motion. My sore knee just buckled.  I had to ring for the nurse to come and help me off the floor.  Talk about feeling stupid!

Oct. 2th –  I am sure if someone was in the room with a video camera we could have won for funniest home video’s.  I wheeled out of the bathroom with me sitting on my walker and Dunc asked me if I wanted to sit in the chair instead of my wheelchair and I said “Sure”.  But when I tried to stand up I wasn’t strong enough to be able to do that in the walker as the seat was pretty low on it.  So Dunc said he would help.  He thought he could lift me by grabbing me at my elbows.  He bent over to do that and when I stand I come up at an angle.  I bounced the top of my head off his chest and down I went on the floor.  If it didn’t hurt so much I would have laughed but it hurt.  My sore knee went under me and stretched it beyond anything I had been able to do with it.  Had to get the nurse in again  (Same nurse as Friday) helped get me into bed.  I took some tylenol for the pain and put ice on it.  Wont try that again!

Oct. 7th – Today I get to go home for the thanksgiving weekend.  3 days at home.  I am so excited as all my family will be there to see me.  I took home a walker and a wheelchair and a raised toilet seat.  I got home just after 5 pm and by 7:30pm everyone left and I went to bed.  My first night at home I didn’t sleep to well at all.  Saturday was a good day.  Got to visit with the kids a bit and then had a nap.  Everyone came back for dinner which was really good.  Was in bed early again.  Amazing how tired I get.  Slept much better Saturday night.  Sunday was thanksgiving and we have so much to be thankful for.  The turkey dinner was delicious!! Monday was a quiet day.  I did not want to go back to the hospital.  But I knew it wouldn’t be for long.  Went back at 7pm.  I have a lot of nausea and not sure why.  Seem to get sick to my stomach atleast once a day for the past month or so.

Oct. 13th – Yeah!  I get to go home for good today!!!  I know I still have a long road of recovery ahead of me but I can do it from home and that I am looking forward to!!!