Wednesday, September 30, 2009

Amazing Woman = My Mother

Longest. Week. Ever. Oh wait - it hasn't even been a week yet. So, it all started with the call I have been dreading for years now - Arnold calling to tell me that Mom was in ICU after having to be revived. WHAT?! This wasn't supposed to happen anytime in the near future. Sure I know all the "realities" about MS, but she's always been a miracle, never fit in with the norm. I leave work, get in the car with whatever we could grab and speed home. The whole way I remember thinking that this can't be happening, she'll be ok, she always is, I couldn't believe this was happening. We get to Victoria and I find out Dad had to revoke her DNR, but had since reinstated it and that we basically had no idea what was happening with her, but her fever was over 102 with no signs of decreasing.

So the back story - my mother has had symptoms of Multiple Sclerosis for almost 40 years. It all began with dropping plates while setting the table for dinner when she was about 19 and not knowing she had dropped them until they hit the floor. She went on to marry my Dad, and then in 1979 gave birth to my brother, shortly there after she was officially diagnosed with it and then in 1983 they found out they were having me! Unfortunately while she was pregnant with me she was falling pretty regularly and so they decided for my safety it was time to put her into a wheelchair and she basically never made it out of the chair. Mom has had been an amazing example to anyone who is suffering with something like MS, because she never gave up. She is a fighter to the core. Over the last year or so her health has really deteriorated, she has probably been in the hospital more than she has been out of it. My Dad decided a couple of months ago that he was doing her more harm that good by keeping her at home and after that hospital visit we made the really rough choice to put her in a nursing home.

For anyone who knows me you can imagine how much that tore me apart. Jess and I were trying to figure out if it would be possible to just pick up and move back, but we knew that that was really not a good option for us. We have a life and a home and jobs in Austin, so we were stuck in a really unhappy place. However, the plan was to get her strong enough to be able to handle staying at home with Dad and then bring her home. The hardest part about the whole situation was that she really HATED the nursing home, but we had just run out of options.

So we visited with her - cried a lot during the visits, but they were very limited and she was still running a very high fever and was basically in a coma with a tube down her throat helping keep her airway clear. Poor Arnold was sick with the flu and unable to even come to hospital for fear of getting all of us sick so we were down a very important person. I also found out that Dad revoked the DNR because she was unable to breathe in the ER after they had been moving her around for tests while she was having multiple seizures. The 2nd day of this was Monday - we got up at 5 so we could be at the hospital at 6 for the first visit - things were looking pretty bleak at that point. The doctors had no idea what was causing the fever, it wasn't her bladder as it normally is, and they could not get the fever to come down. At some point in the morning Dad and I were approached by the Palliative Group from the hospital - they are basically hospice for the hospital - they help get information from the doctors and then make suggestions. However, the most important thing we found out from them was that they were certain she was not going to come out of this, to say our goodbyes and come to peace with it because she wanted to be let go when it was her time.

Fast-forward to later that night - my mom's sister Sara (who I was named after), my Uncle Rick, my Grandma, my Aunt Susan and her hubby all came to see her that night. Everyone left and the next visit we talked to the pulmonary doctor who said that basically her throat is so broken down from the MS that she would not live much longer unless we did a tracheotomy at some point in the near future, which we knew she would not want. Dad and I were sitting in the waiting room talking with Aunt Sara when we decided Arnold needed to be a part of the conversation regarding what to do next so we called him and I called Jess - we all talked and decided we had no option but to follow through with what she wanted so we are sitting here and a nurse comes running out of ICU - Mom was having trouble breathing and she needed to know how far we wanted her to go to keep her alive. So we figured that this was her way of making it easy on us and we told them to let her go.

I have never cried so hard in my life. I couldn't handle it so they went in to be with her while Jess and I stayed outside. However, like I said before - my mother is an AMAZING woman who is a fighter. They took off the oxygen and she had trouble, but she fought through it and was breathing better off the oxygen than she had been before. They had told us without the oxygen she would pass away relatively quickly, but she was doing so good that they the only way we could stay with her was to move her to a regular room.

Another amazing thing happened - once she was in the regular room her fever started to drop... slowly, but by the morning it was steady at about 99*. Aunt Sara, Dad and I stayed with her that night, basically just watching her breathe and being shocked by all of it. However, she was still totally out of it and struggling to breathe. After speaking with the dr that morning we took her off the meds she was on because it was a waiting game - she wasn't going to make it, there was no way. We were all at peace with it, knew that it was just her time, but apparently she knew better.

Over the last 2 days she has not been on any meds other than morphine and she has slowly come back to us. She pretty much always remembers Dad, but she doesn't always know me. If you explain to her she seems to understand who we are, but it is still a little hard to know. However, the most amazing thing of all if after days of not talking she is desperate to talk to us - she was able to tell us she wanted "home health at home" which is impossible, but it means one very important thing - she understands what is going on.

Tomorrow we hope to restart her on her meds and see how far she can bounce back. I know that every moment she stays with us is a gift, our fighter decided that she wasn't ready to go and we are going to try to let her make some decisions on her own if she can tomorrow.

I'm at peace with all of it now, I know that whatever happens we are all going to be ok and that she absolutely knows how much I love her and how amazing she is. She still doesn't know who Jake is, but as her memory returns I hope that piece will fit. However, she loves him deep down and he had always been drawn to her even with the little they have been able to interact with each other. I hope that whatever happens, we make the right decisions. I pray that the Lord will clear the way and give peace to all those around her and most importantly to her.

Thanks for all the prayers and support. I'm too tired to go back and read all of this, so if you make it all the way to the end that you will forgive all the spelling/grammer/etc errors.


  1. Update: Mom has taken a turn for the worst - she is having trouble breathing and has fluid down in her lungs. She is yet again blessing us by making our path very clear.

  2. My heart breaks for you Sara. I am praying that the Lord grants you and your family peace and that your mom doesn't have any pain or discomfort. What a neat testimony you guys have of her life that is truly a miracle. I'm praying that whatever happens, you will feel the presence of God wrapping His loving arms around you all.