Saturday, August 17, 2013

Running into another week.

That's it. I'm running away! To a small island, in the middle of nowhere, by myself. Where the sun is warm and the sand is soft. The air smells of the ocean. The waves come rushing onto the shore in a rhythmical fashion, creating sounds to calm the most frazzled of minds. Just me. By myself.

I could never....but it sounds sooooooo nice, doesn't it?

Right now the stresses of a week filled with a lot of unanswered questions is weighing heavily on our house. Most of the time I can deal. And this week, from the outside looking in, it probably seems like we've been doing just that. I've been trying to ignore all that was not going "right" this week. But eventually it gets to the point you just can't ignore it sometimes. The overwhelming feeling of feeling overwhelmed. That sums it up.

Those darn emotions.

Wyatt's body has been hit again by yeast. It was a week long process to get a plan ironed out of what we were going to do about it and put into place. You may remember I mentioned my concern a couple weeks ago when we started to treat the gram negative bacteria in his urine again. It was a valid concern. I could see evidence of the yeast before that round of Zosyn was even finished. It's what he does these days...you fight back one or two or three bad bugs to give the others a free pass at multiplying and starting a big bad out of control bacterial party. We're unable to wipe out the large amounts of bacteria and fungus that are present within him. And if we did, we'd only have bigger and badder bugs ready to party with even more limited options to fight them off with. So, instead we need to try to control them. Unfortunately, the boy's body is a bacterial and fungal party house.

Right now I feel like we're chasing our tails. Constantly. And it is not as fun (or funny) as when the dog does it.

Wyatt's cough that comes from deep within his lungs has returned. We've been suctioning as he needs, but the "junk" comes from deeper than I can get to some of the time. His nose started bleeding Wednesday and doesn't look to have fully stopped yet. He has a small amount of scattered petechia across his face from the force of the cough. His G/J tube stoma is also oozing blood. Wyatt begins to bleed when he has an infection and his body just can't get it together enough to clot. It's one of his "signs" that we've learned often means we're walking a fine line. It stresses me out as I've seen this kid go quickly from small nose bleed to much more than just a small nose bleed. He's been sleeping a lot, but has been waking up for short moments here and there. There are a few other things he's been doing that I can't quite figure out. I'm not sure what to make of it yet and am trying to sort it out before questioning the doctor again. It's known that Wyatt has broken too many rules in those medical books for the doc to know what exactly is going on in this boy's body anymore. Most of the time it's a hypothetical answer or a best guess or a theory...which we've learned to accept.

Tomorrow starts another week. That's good because another day was just not going to cut it. We need an entirely new week!



Thank you so much for the continued thoughts, prayers, love and support! Please know we appreciate it so much and send much love in return.
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