We sort through the box looking for a missing puzzle piece. Where did that thing go? It just doesn't disappear. Okay, back to the drawing board. Make sure all the outside pieces are truly outside pieces. Put the similar colors together. Look under the table. Everyone stand up and look in your seat. Check your clothing. Searching everywhere but no one can find it.
It's what our lives have been like for the past few years with Madison's health. Starting with her face drooping on one side but not all the time. Allergies that won't go away in various seasons no matter what medicine she takes. Wheezing and not being able to exercise without feeling like she was about to pass out. Extreme fatigue that led to sleeping over 18 hours a day. Mono and flu-like symptoms with a diagnosis for both. Then, trouble walking up the stairs to the point that she wouldn't and couldn't do it. Fog-like brain with no ability to focus (for an A+ student, that was hard to grasp). Dark days of knowing she was sick but no diagnosis. Being told it was "all in her head." It didn't take long for all those factors to lead to some lonely and isolating times for our sweet second child.
In January of this year, we finally received a diagnosis of dysautonomia, specifically POTS, that we accepted gladly. All of her symptoms made sense and the puzzle was beginning to form. However, it's not a simple puzzle, and even the doctors don't agree on how to treat it. Doctors at the Mayo Clinic, Johns Hopkins, the Cleveland Clinic and Vanderbilt seem to agree on a protocol treatment but patients all respond differently. So, it's trial and error until the right combination of medicines/exercise/vitamins work for you.
So you can imagine our concern when we learned that Madison needed her tonsils and adenoids out as well as a turbinate reduction (honestly, I still don't know what that is except that it has something to do with the nose). I mispronounced it approximately 8 times at Children's including calling it the terminator and turbine reduction...I'm sure they were all impressed. Let's be honest for a second - who is ever going to say turbinate reduction again in his/her lifetime? No one. So, we should just call it the terminator and be done with this silly argument.
However, Madison was awesome as usual. She enjoyed the anesthesia a little too much and to be frank, I wish they would have just let her sleep for a few days to allow her to catch up on some rest. She said it was the best sleep she had experienced in four years. That sinks a mama's heart really quick like.
Her blood pressure was adequate during the surgery but her heart rate remained low. They monitored it continually, and she came through the surgery like a pro. The kind folks at Children's Hospital let us go home the same day.
The dysautonomia complicates recovery as she already takes quite a bit of medicines/vitamins to regulate her condition. So, she has about 14 pills that she takes each morning and 4 at night. Now, we give her pain medication every two hours. With the brain fog aspect of POTS, it is vital that an adult administer the required medications so that she doesn't forget what she has taken! So, we tread up those stairs every 2 hours all day.
Can I just tell you that I would walk those steps every day if I knew my child would improve? I would do it the rest of my life. With gladness. And it makes me awfully grateful for those single parents and parents of special need kids or those with chronic illnesses or long term impairments that have to deal with this kind of stuff day in and day out for life. They are my heroes. I salute them.
Would you pray with us that Madison will improve quickly over the next week? She needs her strength to fight the POTS, and it takes a lot...mental, emotional and physical strength...to wake up each day and keep working at it. We pray that she will become the physician who finds the cure one day so that others won't have to walk this road.
