Tuesday, May 1, 2012

The roller coaster (of life.)

The spring weather has been erratic in our area of the country. One day Eighty degrees and a day or so later its only Forty. It leaves me wishing for more predictable spring-like temperatures. I suppose Wyatt and the weather have something in common these days, their lack of stability. We've been trying to adjust and re-adjust as needed recently, both in our wardrobe choices each day and for our boy.

It's been a couple weeks since my last update. We've been laying low, watching concerns appear, deciding what to do about several and trying to live life around the changes we're witnessing. I've always thought I handled change pretty well, I even greatly enjoy change in some areas of life! Though, change with the boy is something that quickly causes an extra layer of stress and worry now a days. Wyatt began presenting with rather involved motor Tics within the last month, which are greatly bothersome to him. Repeated stretching and rolling his head and neck in circles, his arms stretched out and his hands turning in circular motions, his legs rigid and shaking forcefully. We're not at all convinced they're all actual tics and not seizure activity, but either way it's clearly neurologically based.

Part of this weekend has been a struggle, as his anxiety is high(er) and he's struggling with sleep. He's uncomfortable, his mind running and just not able to organize his body into a sleep cycle...again. After trying to convince him his CVL dressing was perfectly fine and not needing to be changed, but still hearing him ask repeatedly if we needed to change the dressing, we decided at 11:30pm to gather our supplies. Hoping that having it completed would relieve his mind enough to allow him to fall into sleep. It didn't quite work as we had hoped, he fell asleep to only wake quickly to a coughing/gagging fit. He's had this cough/cold for nearly 3 weeks now, a stuffy nose, losing his voice daily and coughing throughout the day and night. Just as I begin to think he's nearly over it, it starts all over again. We've been doing saline nebulizer treatments to help provide moisture and thin secretions, turned up the heater/humidification on his bipap and added nasal sprays to try and help. I sit here now listening to the "Glub. Glub, glub, glub." of his bipap tubing that has a small amout of trapped condensation within it.

We saw Dr. R last week, who also promptly noticed the changes in our boy. A couple weeks ago I was hoping that the blood transfusion he received would give him the boost that his body needed to turn things around a bit. A few days later I talked with Dr. M again, the palliative care doctor, about increasing his methadone dose, as his complaints of pain were very frequent and this is something that we've talked about with her previously. Unfortunately, an increased methadone dose doesn't come without very serious risks for our son. We noticed a difference in his pain levels initially with the change, but the last few days I feel as if we've heard just as many complaints as before. He appears fatigued and moving at a "slower" pace...both mind and body. Neurologically things are clearly amiss. In our appointment with Dr. R we increased his IV Keppra dose and added an anti fungal to swab throughout his mouth to help lessen the yeast covering it. We discussed blood flow (or lack there of) and its effects. We were also able to talk with him about the proposed urological surgery. We haven't come to a decision yet if we should move forward with another surgery or just make do. I'm not sure there's a right answer...making these decisions isn't easy at this point. The surgery won't necessarily "fix" what's going on, but is purely to reposition the catheter placed within the bladder for his comfort. But certainly the surgery will provide more discomfort well before any comfort can be had. That's precisely where my hesitation lies.

Wyatt was obsessing over a roller coaster app on the iPad the other day, which isn't unusual. He couldn't get enough of the stomach turning simulation...up, down, right, left and complete loops over and over again. Roller coasters have been a fascination for him for as long as I can remember. Which I find ironic, you know, as our day to day life is very much like a roller coaster! Often there are blind twists and turns that I never see coming until we're in the midst of them. (And he says he'd never ride a roller coaster...)

Yesterday, as he was watching this week's episode of The Amazing Race, he declared in his current whispery, gruff and crackly voice that he really wants to be on that show "when I grow up." Just like he tells me every week after watching. Oh, my boy. How I'd love to watch you racing around the world on The Amazing Race someday!
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  1. There are no good words. I wish.

    Thinking of you - thinking of Wyatt.

    You are not forgotten,

    Cathy in Missouri

  2. I didn't know you were having such a tough week. Praying for rest, Wyatt and family.