My ICU visit

I typed this up a few days ago but  it would not publish to save my life so  I just saved it but no such luck there either, so here it goes again, attempt number 2 to share with you my ICU experience.  It's one I hope  never to have to experience ever again.

On Sunday, while still in rehab, I woke up with my legs reparalyzed.  I let my nurse know and went back to sleep.  a few hours later, right during shift change of course, I woke up again and could not move from the waste down.  This was serious business and to this nurses brain meant lots of bad stuff was about to happen.  I tied not to freak out but insisted my day nurse call the doctor.  He didn't  hesitate to order an mri of my back and consulted with the attendings at the main hospital.  The rest of the day continued without incident until about 5pm when my hands started to feel weak.  I couldn't hold my phone or control my wheelchair.  This quickly progressed to full paralysis in my arms and within 10 minutes my torso lost movement.  By 6:30pm, I was on my way to the adult ICU in the main St. David's hospital.  I was paralyzed from the neck down with some mild decreased sensation to the soles of my feet and lots of tingling to my feet and hands.  I was trying to stay calm so my husband stayed calm to, but I will admit that I was terrified.

I received 2 blessings that day.  The first one was given to me by my husband when he got to the rehab center shortly after the  paralysis started to return.  I love Stan's blessings.  He always tells me how much the Lord loves me and how pleased he is with the choices I am making in my life.  Next he told me that the Lord was aware of the pain and suffering I was experiencing and though I would regain my ability to walk a gain, it would be in the Lord's time.  I  needed to  turn to my Heavenly Father in pray and turn to the scriptures.  I needed to be willing to ask for help from those around me, especially when so many people are always offering to help me.  My Heavenly Father encouraged me to accept all the help that everyone keeps offering, allowing others the blessings they receive from serving.  I will be ther 1st to admit that I am not very good about letting others help me.  I want to  do things myself, even after 10 years of dealing with this disease. I have been really working on that though.  After I starting having the ascending paralysis, Stan really wanted me to have another blessing but he felt he was too close to the  situation tell me what the Lord was saying rather than what he wanted to say so he asked Bishop Kriese to give it.  Bishop's blessing told me I would be healed in the Lord's time and  I  needed to put the work into getting better but the healing process had already started.  I needed to stay faithful, which I did all week.  While there was reassurance in these blessings, they didn't keep me from being totally scared.   I have learned that when blessings come in the Lord's time, that usually means that I will have a trial that I have to go through before the healing comes to pass.  I did a lot of praying to my Heavenly Father during those days in the ICU and learned more about the atonement of Jesus Christ.  Each time I go through one of these medical trials, I learn a little more about the  atonement of Jesus Christ.  I am so grateful I have a Savior who willingly suffered everything that I have to suffer in my life time so that I don't have to when I am overwhelmed and to the point I can't take it any more.

They had to watch my breathing very carefully because with my entire body already paralyzed, then next thing that would go would be my diaphragm, which would mean I would have to be put on a ventilator.  They did a test every 2 hours to see if my diaphragm was getting weak.  By the 4th or 5th test, I was at the bottom limit for diaphragm involvement.  I couldn't take a deep breath at all but I was maintaining my oxygen saturation at the lower limit of normal.  I got a little bit out of breath when I talked and I was sleepy a lot.  I did best when I slept.  My saturation was better then and I was just more comfortable so then nurses wanted me to sleep as much as possible, and so did Stan.

Monday afternoon I had to go get a spinal tap to test for a bunch of things.  I had had an MRI of my spine on Sunday afternoon when it was only my legs and hips involved that was normal, not even any "MS Lesions", new or old.  They had already decided 2 weeks ago that this could not be caused by MS because of the lack of spasticity and that continued to be true.  My body was completely flaccid.  Interestingly, even my neck, which for all intense and  purposes doesn't seem effected because I can still move it,  is no longer tight and spastic like it usually is.  That part is really nice actually.  I would like that fact that I have no spasticity if I could actually walk and move my body around.  "Body, you did not need to go from one extreme to the other, you really didn't."  I don't know why I just bothered trying to tell my body that little bit of advice.  I don't know about your body, but mine never listens to me.  I was never a rebellious teenager, but I have a rebellious 40+ body.  I wish I would have been a  rebellious teenager if this is the trade off 😁

Ok, now that we took that little detour, back on track.  After I got back  to the ICU from the spinal tap, they started another round of IVIG.  It's a good thing you can't really have too much IVIG because this was about to be my 3rd course of IVIG in less than a month, each one bigger than the  next as far as total dose.  Dose 1, my regular home dose is 90gm given over 2 days, dose 2 was 111gm, given over 3 days, then the dose in the ICU was 165gm over 3 days.  The very strange thing is that I tolerated the 2 hospital infusions better than I tolerate my home infusion every month.  My home nurse and I have been looking at a bunch of different variables between what they do in the hospital and what we do at home to figure out what the difference is and how we can replicate that at home. Within 30 minutes of the 1st IVIG completion, I started to be able to move my fingers a little bit.  I slowly regained use of my hands, arms and torso as the night progressed.  Nothing from my legs or hips though.  I'll take what I can get though.  I got another bag of IVIG each day for a total of 3 days and each day I got more movement back plus the areas that had already started to move got stronger.  It felt amazing to move again and I thanked God so much for the miracle that he gave me for it felt like a miracle to me.  I know the blessing told me that I would regain use of my body again, but when you are laying  in a bed and someone is having to feed you, roll you over, dress you, undress you, brush your hair, brush your teeth, rub the sleep from your eye, scratch  your nose, EVERYTHING, then when you start to move you hand even just a little bit, it is a miracle.

 My 1st dose of IVIG was 5 days ago as of the time of this writing, I am still seeing improvements every day. They are small improvements; slight increased movement to legs, or maybe a little more strength to my torso or a little more coordination to my fingers (the coordination in my hands sucks.  It's really hard to write)  I try not to compare my abilities now with what I could do when I was 1st admitted to rehab on 3/29, or remind myself that yesterday was my original discharge date.  Those kinds of things really discourage me and they are defeatist thinking.

I had my PT and OT evaluations today.  I definitely can't do the things I could when I came to rehab the 1st time, but the therapist are optimistic that everything will come back  quickly.  Their evaluation on top of the blessings I have received make me confident that I will walk again.  I just have to work hard, pray a lot, rely on my Heavenly Father and the Atonement of Jesus Christ and anything is possible.

 I'll have some therapy this weekend, so I'll probably post an update at the end of the weekend to summarize everything.  I hope everyone has a great weekend