Sunday, July 29, 2012

Special moments.

This morning, as Wyatt woke at 4am, it felt so much like when he was little. His demeanor very close to that of a toddler these days, as I told him it was very early in the morning and it was still time to sleep. He responded quietly, his words broken, but so innocent, sweetly with assurance, "No. I don't want to." As I laid there, closing my eyes and hoping that he may get the hint and decide to sleep for a couple more hours before waking again, he began thinking and talking aloud. He tried to speak, random thoughts, really. At one point he asked if he was going to get any gifts today, which I responded, "Not that I know of." I asked if he were to get a gift what he would like it to be and he said "I want to see the Muppet's." "Where would we see the Muppet's?" I say in my sleepy state, "Do you want to watch the movie today?" "No, you could take me to Hollywood" he slowly responded. Hmmm, that could be quite a trip!

Last Monday we began another 2 week course of IV antibiotics (Zosyn) and started another round of a different IV anti fungal (Micafungin). Throughout the week the foul smell that was coming from the thick mucus and at times seemingly seeping through the boys pores has began to dissipate. (Thankfully!) The new rounds of meds have helped in that way, along with fighting back the fungus. The frequency that he requires suctioning has decreased, his cough has lessened in intensity and what's flowing from his G and J tube drains are returning to what we would expect at this stage. For the time being, we seem to have this infection piece under control. It's only a matter of time before it all starts again, but for now we'll be happy with our small victories.

When awake, Wyatt is confused a good portion of the time. It's becoming increasingly difficult for him to talk, his body and muscles tremor a lot when moved, including his tongue and mouth. His speech can be hard to understand and often times he stops mid sentence, rests for awhile and then will try to finish his thought minutes later. His muscles are becoming weaker. The bipap and additional 3 liters of O2 continue to sustain him. On a vascular level, the perfusion to his extremities is poor. His fingers stay dusky in color and are now bent under. I'm able to straighten them, though there is a noticeable resistance and rigidity at all times.

He likes for someone to lay next to him in bed to watch movies together. And often requests it. I'll then find him policing me, peeking out the corner of his eye throughout the movie, making sure I'm watching and my attention isn't drifting. And he's been known for pausing the movie to 'call me out' should I pick up my phone! (Though, he now lost his ability to use the remote control.) While he's been confused a lot and disoriented, I found this morning at 4am he was the "clearest" in thought than he has been recently. We spent an hour talking as he would inch closer to me in bed to snuggle and holding my hand before falling back to sleep for a bit. These moments are special.

The girls have been trying to enjoy parts of summer. Maggie spent a week at church camp this month, while Jilly spent a week at Grandma and Grandpa's going to vacation bible school. They've been spending a lot of time at their grandparents' houses this summer, overnight stays and finding fun things to do. We've let them decide when and where they want to visit and how long they want to stay here at home versus away. It's very hard for them to watch their Brother going through these changes too. Maggie knows what's happening, is conscious of it and is torn about whether she stays or goes. And Jilly, well, she understands as much as a 6 year old should.

We appreciate the outpouring love and support from all over. It's certainly helped to sustain us during these times that seem impossible and inconceivable.

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1 comment:

  1. We spent an hour talking as he would inch closer to me in bed to snuggle and holding my hand before falling back to sleep for a bit.

    *****

    How many times have I thought of your words here, of the almost...sharp?...sweetness of these times with your precious son. More than a lump rising in my throat, a feeling of being torn in fragments by the beauty and the pain, tugging on each other.

    What a love-steeped home...

    Oh, oh, oh. So much thinking of you,

    Cathy in Missouri

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