The appointment didn't bring much good news. Mom was losing weight and was more fatigued than usual. Her speech was also digressing. So they gave us a lot of good recommendations for her and then the really bad news came. First of all her lungs were now at 31% of normal predicted value. Not good. Also, they recommended a PEG tube to be inserted into her stomach for feeding. She could still eat soft foods but she just wasn't getting the nourishment that she needed. We got an order for suction equipment for the extra saliva that she couldn't swallow. Also, she needed to be using the oxygen more. All in all they ended with giving us hope. Telling us that these are normal things we would be dealing with and that she could become stable and manage for quite some time like this.
Ok, positive thinking.... that is how we left it. We would be going to more speech and swallowing therapy and some physical therapy as well. It was fine. All fine.... and dandy.
August started off with Mom and Dad's 48th Wedding Anniversary! Mom got all dressed up and Dad took his Bride out to dinner with some close friends. It was so sweet. Dad started taking pictures of her, telling her how beautiful she was. I just smiled and waved, laughed and told them not to be out too late!
Mom looked great too. After they left, I went inside and cried. I cried because Dad couldn't and neither could Mom. I cried for both of them, we all knew, even though no one said it, it would be their last Anniversary together. So, I cried.
The month filled up fast with Mom and her leading men. She saw the doctor for the surgery in putting in her PEG tube. She saw Mr. Bill at Physical Therapy, Dr. Mason. Then the actual surgery. And follow up appointments.
It went really well. Just like that she had a feeding tube sticking out of her stomach. We got issued special formula that we quickly nicknamed her "juice" and we started feeding her. A week later, she was in the ER, not able to breath. Her right lung was collapsing. Things just started happening so fast at this point. We made another appointment with the neurologist and then again with the Oregon Lung Specialist and what was coming back to us was not what we expected to hear.
Time for a sit down with the head doctor. "What was REALLY going on here?" I am a realist and I wanted to know just what I was facing. No more surprises!
So he told us. Mom had the Bulbar onset of ALS. Which is why she was at first given a three to five year life expectancy. Now, that was changing according to how fast the ALS was progressing in her body. Now she had a three to six month life expectancy.
Whoa! Hold on! We just went from a few years to a few months! Just like that! We were doing everything they told us to do and more. Mom was seemingly great, except for the breathing part and eating part. Ok, that stuff is important, but months!
Not only that but she was just diagnosed a year ago this month! (August)
That being said, I knew where I needed to be. Dad knew where he needed to be. Right by Mom. My brother came down every weekend and stayed with us. My husband came as often as he could. My kids came over and hung out to just be there, in case she wanted to tell them something, anything.
We were family, a tight one at that. We ate all our meals together as often as we could and Mom and I spent all our time talking, laughing and doing whatever she wanted. Sometimes that was just sitting quietly together, sometimes we chatted up a storm and followed it with showers of laughter. We were just girls together. I kept house for her and she made sure I got all the cobwebs and dust specks that I missed.
Summer was over, and it wasn't much fun. Fall would be better, it just had to be.
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