Monday, August 22, 2011

Peg Tube Adventure

ALS is a crazy disease! From the moment of diagnosis your life is sent on an uncontrolled roller coaster ride. With that said, no simple surgery is ever simple. 

Wednesday night, in preparation for the Peg Tube, we as a family sat down and endured a heart wrenching discussion.We made end of life decisions, offered prayers of thankfulness, spoke of blessing others with organ donations, and found peace in the true meaning of family. We prepared ourselves for "what-if" scenarios and pleaded for grace. Wednesday night offered restless sleep for all. 

Thursday morning was quiet and calm. Mom was enveloped in peace. It was apparent that God heard our pleas. When we arrived for check-in we were greeted with a smile and a sterile waiting room. Mom was prepped quickly.

The anesthesiologist came in to greet us and with him he brought such a calm inviting spirit. He was gentle and eased every fear my mom was holding on to. He promised her that he would be by her side the entire time and most importantly that she would wake up! He administered her IV and within seconds my mom looked directly at him- eyes wide open and said "I like this" in the clearest voice I have heard in months! We all laughed... and looking back I wish I had been video-taping the scene. It felt so good to hear her voice! We said our goodbyes in the midst of tears and waited. 

Within 45 minutes we were greeted once again by both the surgeon and anesthesiologist. They gave a glowing report and said mom rocked the surgery! Interestingly, we were told that mom's stomach is in an odd location and was hard for the surgeon to find at first. Her stomach is located right underneath her belly button. This caused the tube to be placed a lot lower than expected and unfortunately offered more discomfort. 

We waited 2 hours and 45 minutes to see mom after the surgery. It felt like forever but she was worth the wait! 

Doesn't she look beautiful? This picture was taken as soon as we saw her. She is glowing!
Mom experienced a significant amount of pain after surgery. Because of this, she was kept for observation and not discharged until late Saturday afternoon. Thankfully, the doctors were able to manage the pain and she was able to get the rest she needed while in the hospital. 

We can't express enough our thankfulness for all of the prayers, flowers and cards. Knowing that there is a huge community of believers, friends and family coming together in love to support my mom and my family is incredible. We feel your love and some days that's exactly what gets us through this nightmare!

Now, we are on a new journey, a new start, a new normal. We have all accepted it and embraced it. We are moving forward and believing for great things!

Thursday, August 18, 2011


Hi friends, 

Just wanted to pop in to let you know that my mom will be having her PEG tube put in today. Her surgery is scheduled for 12:00pm at St. Joe's Hospital. As with everything related to ALS- nothing is ever easy or uncomplicated. Please say a prayer for peace and guidance today. I will update as soon as I can. 
Much love,

Tuesday, August 2, 2011

Through The Looking Glass

My Beautiful Mom! 

It was a cold, wind piercing November morning. I remember bundling myself up in a soft gray Abercrombie Pea Coat and climbing into my little red car. I was off to spend the weekend with my grandma. We were going to celebrate my birthday! As I began to drive tears streamed down my face. This was the first birthday I was celebrating away from my family. It had been a rough first semester at the University and I craved the comfort only a mom could give.  As I arrived my grandma strolled out her front door with a suitcase in hand. I was perplexed yet oddly not that surprised. She proceeded to tell me that my cousin Josh had sent her a package. A package that was very large and waiting in Kansas City (3.5 hrs away) conveniently at the airport. I was told that she arranged for us to stay the night and that we better get going as this package wasn't going to just sit around all day. :)   I suppose at this point I should have known this was a ridiculous story. But, this was my grandma. My grandma would drive across town just to save a penny. So I bought it. I took her suitcase and neatly placed it in the trunk. I admired her spunk and off we went. After all, we were headed on an adventure. How could this be anything but fun? 

The drive was long, full of interesting conversation and strange music. As we pulled into the airport my grandma directed me towards the arrivals and asked for me to drop her off at the curb. She said she would only be a minute as she was positive the package would be just inside the door. I sat there waiting, amused at the oddness of who my grandma was. In a matter of seconds I saw the package. I will never forget the overwhelming sense of love that filled the air. The shock and ultimate gratitude that rushed over me. There outside the door was my mother- standing in all her beauty.

They pulled it off. The ultimate surprise. There the two of them stood beaming with pride that their plan actually worked. After several tears of joy and screams of excitement we made our way to a quaint hotel. As we unpacked the car beautiful, delicate snowflakes began to fall.

In my mom's true fashion we spent the weekend shopping, eating, crying, laughing and making the most incredible memories. 

...It's amazing the things you remember and hold on to... 

It's been 3 weeks now since my mom has found herself intensely  losing strength. 3 weeks since she has eaten a full meal. 3 weeks since she has felt "normal". (I use that term loosely.) 3 weeks ago my mom was hit full force with an evil that has only stolen her strength and her ability to eat. 

It feels as though things are starting to happen at a rapid pace. I still can't come to grips with the fact that she can't eat. She is taking in barely enough to survive the day.

My mom... the life of the group who always planned her days around the next great meal- the Starbucks and dessert stops while shopping... now has no desire to eat. I can't wrap my mind around what is happening.

She needs the PEG tube...