I am truly Blessed beyond all measures - I pray that does not sound to vain but thankful... For God has been so good. I have met people at rehab that have the same syndrome I have and they were here before me and they are still here. For I am reminded of what God told Moses in the book of Exodus “This very thing that you have spoken I will do, for you have found favor in my sight, and I know you by name.” I know he knows us all but I am so thankful for his favor.
My Case Management came in this morning and said base on my progress reports Insurance will not extend my stay so today is the day. I walked 500 ft unassisted and I am able to shower myself sitting down as well as dress myself with time. So it's home for me. I am excited - Mylon is apprehensive but I tell him I will be find.
So me and all of my balloons, plants and other gifts are head home (people have been so nice). We made it home with out incident and I am back in my own bed after 15 days all I can say is Amen!
First day of Rehab starts at 6:00 a.m. with my medicine. I was a big girl - stayed by myself last night - long night but with God's help daylight came. My schedule is laying on my table by my breakfast - they really plan to make me do three hours of Rehab, yea right :)
My Occupational therapist shows up at 7:45 a.m. and shares with me that she had never met Pastor Burwell, but she has met his wife (LOL). An older lady from our church you tell everyone that Mylon was her husband, the doctors, the hospital, even the funeral home. So my therapist had met her during one of her hospital stays. This morning's challenge was bathing and dressing myself. Together we got it done - I never dressing and bathing were so hard, I needed a nap.
She talked to me about resting and taking my time and not overtiring myself. She also reminded me to make sure I ask about any medicines, never take the flu shot and to basically become a germ freak... Wear a mask in crowds for a while and to carry germ wipes with me.
Following a brief rest they came to get me for physical therapy... If you ever doubt how truly blessed you are along with a visit to the nursing home or hospital, rehab should be on you list. For there people there with a minimum to maximum mobility of all ages...
Today I stood and made a round with the walker with the therapist holding on to a belt around my waist and learn to operate my wheelchair (they don't know it yet but I am not taking a wheelchair or walker home - I ask God for it and I am trusting that he will provide)....
My day of therapy ends with another round of occupational therapy. This is my weakest area. My arms will not raise above my head and the feel like they weight a 100lbs but it will get better.... My six year old granddaughter stills like grandma ina to carry her around so I have build up my strength...
Today I go Rehab - I am doing well but I am still not able to go to the bathroom. It seems silly but I want to go on my own. So I ask the Physical Therapist if I can try and she said yes! I made it with no problem but I could not get up. Huntsville Hospital has got to have the lowest commodes in the world.. It's like sitting in a hole! So they went and got a couple of nurses to help me up :( - I got what I ask for - I made it!!
Wednesday evening about 7:00 they transfer me to health south. I am a little nervous and quite a bit anxious but I convince my hubby to go home and get some rest. Big Mistake but I will never tell him!
Mother Edwards babysits today so hubby can head back to work... She helps me get up and get dressed and combs my hair.
It's a good day - just to be alive. As I write this tears just flow because he did not have to do it, but i am so glad he did!
The occupational therapist comes and my arms and hands are still not working quite right but my fingers are doing well. The two physical therapist comes in later bring their walker - I actually stood up and took some steps - and I got to sit up!!!!
Things are going really well.
Tonight is the last night of treatments and they are talking about rehab. I should be head to healthsouth tomorrow!
This my fifth and final treatment... Hubby is with me tonight and of course I have to have a new IV the two I already have just will not work anymore. But it is all good!!! After starting the new IV things went really well.
Happy Martin Luther King Day!
I am kinda sad, my kids are heading home today, but I am truly thankful for their presence this weekend. They truly were a great help to me and Dad.
We are continuing to see progress - I am now starting to hear from the nurses, family and friends just how bad it could have been! But God! Today's challenge is to eat on my own and to got the bathroom before I had to therapy on my own!
Gerlinkia babysitted today, she's a mess. I don't have to worry about to many visitors when she's around!
I did accomplish one goal - I ate on my own not pretty but I did it. The Bathroom Journey not yet, but I stood!!!
I woke up about 4:00 a.m. on Sunday morning - Thanking God for what He was doing in my life. I think I may have scared my daughter-in-law, she asked if she should call dad. I told her no, I was just having a hold my mule moment. For when I realized I could actually raise my arm, I could not help but praise. For this was just the Second treatment and we could already see progress.
I was so excited I actually got the cell phone in the position so that I could call Mylon - he was shocked that I had dialed the phone myself.
With it being Sunday my daughter-in-law wanted me presentable so she got me bathed and dress in something a little more attractive then a hospital gown. They didn't want me by myself so they had an exchange so she could go home and get some rest. One of my friends, Tina stayed with me on Sunday and help me with lunch and kept my visitors company. After worship service, Mylon came and stayed and all the kids got there in the afternoon.
I didn't think it was many, but apparently the nurses did because that night I was having trouble relaxing and when I had issues with the bedpan I just broke out in tears....I just felt like was bothering everybody and just in general being a nuisance. Ranita tried to reassure me that I wasn't being a bother but I just felt that way. So in comes my nurse with two signs asking me to pick, I told her I didn't like either choice, but she informed me that I was exhausted and if I was going to get any better I had to rest. The signs were "Do not Disturb" or check at the nurses station before entering, I chose the lather.
Treatment was uncomfortable - it kept beeping, I stayed Awake - I kept Ranita awake - A long night!
When he woke on Saturday morning - I had not gotten any worse thank God and he could see a little improvement which excited us both. The Doctors and the nurses had said some people continue to get worse even with the treatments and not to look for any improvements until at least the second treatment.
He left about 8 to get a nap and change clothes. While he was gone the room got really hot and the phones both start ringing at the same time... I was trying to get to at least one of them without much luck. But I finally got one answered, of course in comes the doctor and my brother. I am sweating and breathing hard. They both think I am having a panic attack - I can't convinced them that I am just tired..... It was actually quite hilarious.
So after they both left, the nurse came and said what happen? She said are you alright? I told what happen and we both laughed. She said he had prescribed Xanax for me. She said do you need this and I said no, I am good.
It was a good day, my god sister spent most of the day with along with my children and grandchildren and the hospital room stayed full most of the day with family and friends. My BFF came in from her conference and spent the afternoon with us as well. I most admit the company kept my mine occupied and off of what was going on with me.
As we begin another day wondering what's going on God has given us both peace. He has assured me that I am healed and He given Mylon peace and an abundance of ideas and questions for the doctors :) I didn't realize it at the time but he was meeting with them every morning at 6. This morning he informed them that if I didn't start getting better he was transferring me to Birmingham or Vanderbilt. If you know my husband this was not a threat but a promise.
So following their morning meeting and my normal morning visit from the doctor on Staff I begin yet another series of tests. We begin with an electromyogram (EMG) - a procedure that measures and records electrical activity from the muscles and nerves with mild electrical shocks to stimulate the nerves. Followed by a spinal tap. by know Mylon has worried the doctors with his ideas and my family and friends have started texting him their ides... Both of these tests are used to find symptoms or signs of Guillain-Barré syndrome or myasthenia gravis.
My morning ended with my fifth MRI - by now I am out of songs and scriptures verses. They have given me a button to push if I am having trouble but I am to weak to mash it - so I once more seek the Lord for comfort and release.
By the time I return to the room I can't even feed myself. My husband contacted my friend Sharon the night before at general conference and she calls. I tell her that I ok and to stay at her meeting - she is adamant about coming home but I finally convince her to stay at least until Saturday - I really did not want her to see me this way.
Once more I have to give Praise and thanks to God for the support of family and friends. Mylon's mom, siblings, nieces and nephews came every night - their support was remarkable. My poor brother had not only me to check on but his wife, my sister was also having surgery today. Praise God she did well!
As I previously mentioned I was in a semi-private room, so my roommate was released to health-south right after I returned from my MRI and me and hubby shared a laugh. They could not find her tennis shoes, they searched for them quitely loudly. They finally called the daughter -with the speaker phone on. She declared she knew momma shoes were there and if they were gone someone had stole them. Mylon lean over and asked me "why did I still the woman's shoes :) " they finally found them under the bed.
Friday afternoon, I was still a little uncomfortable from the spinal tap but just waiting on the test results. A first-lady friend stopped by to check on me and give Mylon a little break. Her visit was followed by the visit from other close friends and my god mother. I tried really hard to make conversation and the share with them that I was healed but they just couldn't see it yet.
Late Friday evening the Doctor came in and told us that everything looked like Guillain-Barré syndrome. He was 90% sure but it would be at least Tuesday before he got all the the test results in, but he did not want to wait that long to start treatments because I would just continue to get worse.
I didn't know then but a large number of people with Guillain-Barré syndrome ended up in ICU on ventilators and feeding tubes.... He tested my reflexes and I had absolutely none. He told us he wanted to do a blood test and based on the blood test results he would start treatments.
As we waited on the blood test results some friends visited (they of course were surprised by the change in me from Wednesday when they came by and today, they said "what happened" I could not help but laughed.
My night nurse came in around 9:00 and said the room next door was available for me. So everybody gathered up my stuff and moved my things. I had stood up earlier that day with the help of two physical therapist so I just knew I could stand and get a wheel chair under me... not happening.... Me and the nurse ended up on the bed! so she decided we better just move me in the bed (LOL).
About 10 that evening she came back and said the doctor had ordered five IVIG treatments (IVIG stands for intravenous immune globulin; it is a sterile solution of concentrated antibodies extracted from healthy donors which is administered into a vein.) for Guillain-Barré syndrome, beginning tonight.
My first treatment begin around Midnight and took about four hours. Mylon stayed with me, not sleeping much at all. The nurse came in around 2 and told him you say you preacher will God's got this and I have her so go to sleep.
This is really awful I can't remember who sit with me while Mylon ran home to get a few things for me...But I do know that I have been blessed with an awesome support system. My friends and family are a wonderful group of people who I can never completely thank for all they have done for me!!!!!
I was continuing to get worse, this morning my left side was starting to show signs of growing weakness. I always know when my husband is worrying, he gets quieter then normal. The Doctors were saying they could not figure out why I was getting worse - all the test showed me to get in good health. They were giving us no answers.
You always wonder if you are doing things right, you always ask could I have been a better friend, a better parent - I still don't have any answers but I do know that I am blessed with loving children do nothing that I have done but because has bless them to love me as I love them. For it was truly a wonderful surprise to wake from a nap to see my oldest standing by the bed. It made my day....
The doctors have decided to do another catscan and multiple MRIs on my brain so I am wheeled out for those tests. By now I must admit things are becoming a little blurry and the hours are running together. My god-sisters and friends were waiting as I returned from those tests. My god-sister Kat had been with us in ER but we didn't want to worry Lorna, because she was and had been sick herself but of course she didn't believe what Mylon and Kat were telling her, she had to see for herself.
Still no answers - everything looks normal, but like Job, my tears poured out to God!
As I continued to get worse and lose mobility in my left side my husband stayed by side and I thought played on his ipad as I slept, but he was searching for answers. He was inputting things like "I walked yesterday, I can't walk to day", "I am getting weaker by the hour", "both my feet are tingling", etc....He stayed with me most of the night, but the nurses convinced him to go home.
I wasn't sleeping at very long interval - but as I cried on Wednesday, I prayed on Thursday Night. For I knew God as a healer and even if he chose not to heal me I needed him to give me the peace and strength to understand and deal with whatever my end would be. As I prayed and Mylon prayed at home, I truly believe that God touched and spoke with us both. God gave me peace and assurance that I was already healed, just trust Him and I received a prayer from Mylon that ended with Habakkuk 3:17-18 "Though the fig tree should not blossom And there be no fruit on the vines, Though the yield of the olive should fail And the fields produce no food, Though the flock should be cut off from the fold And there be no cattle in the stalls, Yet I will exult in the LORD, I will rejoice in the God of my salvation.…" I will walk by faith not by sight!