Tuesday, August 3, 2010

Deep in the heart or (East) Texas...


The anxiety has been building for weeks, arrangements took a week to make, and the drive itself took 11 hours. The Dallas skyline was like an oasis in a dessert of medical mystery and fear. Answers were near and and an end in sight.

Our long awaited journey to Dallas was kicked of with some pancakes from McDonald's at 07:00 am Sunday morning. Our little patient sat in the back of the car in innocent silence hour after hour. Never complaining, requesting to drive through for lunch. Approximate 6 hours into our steamy drive Natalie was beginning to sense the something was up. The questions started leaking out; "are Nathan and Noah going to meet us there?" "what are we going to do there?" "how long are we going to be there?" We had to be honest with her about our intentions, and she took it like a champ.

Sunday evening we arrived in Longview, TX at my Aunt Roxanne and Uncle Ray's house. We were welcomed with open arms and delicious fajitas. We swam at their beautiful neighborhood pool and let Natalie stretch her little lets in the water. Perhaps this is why she requested no stopping at lunch, she had a pool to swim in!

Monday morning we were once again greeted with a breakfast spread prepared by our incredibly kind hosts. We then headed to small Zoo in Tyler. Natalie enjoyed the bird sanctuary where she got to feed birds. Then back to the house for some more swimming, and off to dinner at one of the best barbecue establishments I have ever visited.

Tuesday morning Natalie was sad to leave Longview. She didn't want to see more doctors, go sit through anymore appointments, and most importantly she just wanted to go home! We said our good-byes and headed down the highway back toward the medical oasis.

1:24 The nurse calls us back. She sets us in Dr. Sklars office and we sit...waiting. My mind racing. I'm desperate to hold on to all the details of her experience to recount them accurately when asked. I rack my brain for dates of onset, tests, appointments, even birth dates are not coming easily. Finally the man we've been waiting to see. His friendly smile puts me at ease. I relive the nightmare for him as previously rehearsed. He then guides us into a dark room. As most probably do, i get uncomfortable following strangers into dark rooms. Only I fear different outcomes than the average Joe. He shows us the familiar pictures of our daughters spine. The variation in greys sets off alarms to this trainer professional. After a careful and thorough explanation of why a cyst in the spinal cord might occur he tells us "there's no explanation for this cyst". The anxious mother in my can't take it anymore and the words jumped from my mouth like grease from a hot pan, burning my own ears when the landed. "What's the treatment, what do we do?" He says it "Surgery."

Surgery! No one willingly signs their child up for surgery, let alone SPINAL CORD SURGERY! He explains that this cyst has expanded her spinal cord to almost double it's normal size. She is in harms way if no action is taken and could be in harms way with surgery. Either way Dr. Sklar emphasizes this is not something to watch. No, "Sit and wait" has been permanently canceled from the smiley fall line-up. The conversation then shifts to experience, location, technique and approach. They will remove the back piece of one of Natalie's vertebrae, use a microscope to make a 1mm incision in her spinal cord and insert a small stint, developed by this surgeon, to allow the fluid to drain freely from inside the spinal cord to the area around the spinal cord. This will essentially prevent pressure build up inside the cord and therefore prevent pressure on nerves and keep Natalie functioning normally.

As we walked out of the office our hearts are heavy with fear and stress. Natalie skips along side us singing "I'll take you for a ride on my big green tractor" and completely naive to what lies in her future. For the moment we wait for a confirmation on surgery dates. It will most likely be within the first two weeks of September and require a week long stay in Dallas. Chris and I each take turns on the phone calling family, work, and friends anxiously awaiting to hear our news.

While this news is not the best, it is far from the worst. We have so much to be grateful for. God laid all the pieces out for us and when put together they leave a Natalie in a picture of health and the best medical team around her. We will forever be grateful for that.

3 comments:

  1. We're praying for you all. It's not the best news, but you're right that it's by far not the worse. I pray that this surgery will take care of the problem. Keep in touch, okay?

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  2. Emily, we continue to send up our thoughts and prayers for all of you. For Natalie's health. For your strength. And for a future with good health. I can't help but believe that this early detection will be the saving grace for all issues. Good to know you feel you're in 'good hands' with the docs in Texas. I hope they know they're working with Kansas' best! Keep the faith, girl. I know it's going to be alright.

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