Friday, April 2, 2010

Catheter Procedure

I have so much to say about the last 36ish hours, but I have no idea how to put it into words. I'm sitting here starring at the computer screen trying to figure out how to word it. Dr. Shroff requested we meet with a neurologist so we spent yesterday morning doing that. He came up with a couple syndromes/disorders/diseases that I have been tested for and ruled out, but he wants to run more tests that would fully eliminate them. We haven't had the chance to talk to Dr. Shroff about what she wants to do yet. To me it was just one more doctor to add to the other 150 I've seen in the past, I've become immune to meeting them and I feel like I am just telling them a script because I've had to repeat it SOO many times. It's nothing personal, it's just all that I've been through.

As I wrote in my previous post I was going in for a procedure, and I did. We left yesterday after my appointment with the neurologist, and returned "home" this afternoon. I was expecting to be there much longer than we were. It was a two day so I thought that would mean two nights and you come back the next morning, guess I was wrong considering I'm already back. The procedure I did is known as the three day epidural catheter, but Dr. Shroff and Dr. Ashish decided we should try two days first and see how I react. The target of this procedure was feeling. That's pretty much the target of this trip. Dr. Shroff thinks I will have feelnig by this weekend, and I was speechless when she said this. I am hoping I do, but I do not expect to have feeling this weekened. I am determined beyond belief to have feeling back, but I do NOT know when it might happen.
Dr. Ashish placed the catheter in the epidural area, but the stem cells get absorbed pretty much right away into the spinal cord. The main focus was the dorsal root ganglia because this is where the cell bodies of sensory nerves are. It makes sense if we are trying to get feeling. After getting my catheter in Dr. Ashish taped up my whole back, and then I rested on my back for four hours with the foot of the bed raised on bricks. After the four hours I was allowed to move around a little and I walked across the hall and visited with Gabe and Matthew because Gabe was getting a procedure done too. Dr. Ashish came in while I was over there and told me I was ready for my second dose and it was "punishment time again" this meant I was stuck in bed and not allowed to move for x amount of hours. The second dose I was only stuck in bed for two hours on my back with the foot of the bed raised again. Usually with the three day they have you rotate on your sides and stomach, but because we are REALLY going after sensory I was on my back the whole time. It's hard for me to explain exactly why that is, he explained it to me, but I don't really remember the correct terms. I was allowed to sleep in whatever position I wanted to.
When we got up in the morning I had an omelet and toast :) and met with a physio just to keep my legs going. After breakfast and fast physio Dr. Ashish gave me my last dose of stem cells through the catheter and I was in bed for two more hours on my back with the foot of the bed raised with bricks. When my two hours were up a sister (nurse) removed the catheter from my back and I was free to go. So far I haven't noticed any changes, but we are hoping that within the next couple days something will be different. I got over around 200 million stem cells in the past 36 hours. That is jaw dropping to think and really get your head around.
A couple of us went out to dinner, and boy was it nice to all be together again. We were laughing at old memories from last trip, and just hanging out. It was nice AND my first time eating Indian food since we left here. I sure missed the butter naan. I'm with a part of my family again, and I can't find the words to describe that feeling. On the walk home Raven, Ashley, and I were talking about how it feels like just yesterday we were here, and the last four months just kind of flew by now that we are actually here. It's a strange thought, and hard to understand unless you've been in that same type of situation, but it makes sense to us.

There's been a lot going through my mind about everything that I've been through lately and I want to let you all know how lucky I am to have all the support you guys give me and how fortunate I am to be able to do this treatment. When you are lying in a bed for days it's hard not to think about everything, where you come from, where you are going, and what this thing called "life" really is. It's difficult thinking, but interesting at the same time and sometimes it's necessary to just sit and pause for a moment. Don't miss the little things along the way, they are the most important :).
It's getting late so I'm going to try and sleep now! Good night and good morning :)


  1. We Goldbergs are all praying for your complete healing and for you to regain your feeling and all your senses.
    Keep writing all of your wonderful words of wisdom, for we all need to learn from your journey and appreciate the importance of each day, and for those who support all of us and for the love we all share.
    Thank you for sharing yourself with all of us and for your insightful, postive thoughts.
    God bless you Monica! We are thinking of you and pray for your good health!!
    And enjoy your time with your wonderful friends there! (Hugs to you and your Mom!!)

    -Sue Goldberg and Glenn and Anna and Erin too!

  2. Monica-Tay Tay and I are sitting here getting caught up on your very busy schedule since you've arrived back "home." What a whirlwind and obviously hard to describe. You're giving us such a gift to share what you're going through. It makes us understand it a little bit better and you don't feel so far away. It was great getting to spend more time with you when you were home. We miss you you. All our love, The Deatons.