Just an ordinary day...Sorta

Today has been a day of many highs and many lows. Here is why...

Once again I have decided I need to put off school again for another term or two. Despite my desire to prove I really am superwomen I have taken the advice of family and friends whom all have said today is not my day! My heart longs for that diploma and to be able to experience a day when I don't have this unfinished business over my head. Of course when I do have it finished I won't know what to do with myself that I will probably just have to start school again to feel normal. Oh, well it is a huge let down, but it is best that I be 100% over the next couple weeks as we begin the decanulation process.

One of my highs of the day, (besides getting a full night sleep without MR screaming in the middle of the night) was finding out our beloved African nurse has returned from his trip home after 5 months! We have our Ishmail back and I can't wait to show him all of Payon's new tricks! Of course, I still am upset that he went to Africa saying he'd be back in the middle of Jan. only to have Jan come and go without a word. He is lucky the agency allowed him to come back! All that aside it will be nice to have him back and the smell of fish flow through the house, (okay the fish not so much).

Then the mixture of highs/lows was our doctors appointment down at DuPont with our pulm. I asked him all the questions an eager mother should...You know...What will the day be like for decanulation? What do we need to do now to prepare for a sleep study? What happens if his decanulation fails? Would you be shocked if Payson had to stay trached another year? You know all those questions. His response was that the day of decanulation we would have the scope to check his airway, he'd go back to the PICU and once he was awake from sedation we would have the honor of taking out his trach for the final time. As I typed that last sentence tears began to flow just imagining the elation, pride, happiness, fear and more that words will fail to ever describe on "that MOMENT". I guess I will finally be able to sigh, close my eyes and say this nightmare is over! Oh, what a joyous moment that will be! Okay back to the information: I was told in order to prepare for the sleep study we need decrease a setting on his vent, but that was all we really could do. If decanulation fails, (which can rear its ugly head within minutes of removing the trach or the latest my doc. had was 36 hours) we will get another chance to decanulate in August before we have to wait another year. He informed me that he wouldn't be shocked if Payson failed...did you hear that? It was my heart falling on the floor! He also wouldn't be shocked if Payson had to keep his trach in another year. Payson is a one of a kind case and there is no generalization for him, but we haven't had any red flags telling us to slow down or stop so we will continue to move forward. My fingers are crossed and my conversations with God sound a lot like a car dealer bargaining table. Yet, no matter the outcome I have a peace whatever direction this journey leads us, (doesn't mean I won't cry and stomp my feet b/c I promise you I will do that if it doesn't go the way I hoped for)!!!

Of course the day didn't stop there...MR had to have another dinner melt down. With Sara's help I decided I'd had enough of the "I can't eat", playing with her food as if it was a sandbox and/or tossing it about pretending she'd tried it. So, we gave her an option: eat or have a staring contest with the one piece of chicken all night. After an hour of tone deafening screams, stomps and begging to get out of her chair she ate that lone piece of chicken. Afterwards she came up to me to hug it out. Believe it or not she wasn't mad, but it almost seemed as if she understood who was boss, (even if it is for tonight). WooHoo!

As I end the day I got the notification from this little girl I have been following...Kate Mcrae (Click on her name to go to her site).
She has brain cancer and is fighting for her life even though there is little hope. It is a sobering reality that it could be much worse...one I can't begin to fathom.