Tuesday, June 18, 2013

It's up to him.

Last night Wyatt began to struggle greatly to stabilize his respiratory status. We maxed out our supplemental oxygen capabilities of 10L (bled into his vent tubing), ran saline and albuterol nebs and suctioned him hoping to clear whatever junk we could, to what felt like no avail for a significant amount of time. The pulse oximeter continued to blare, alarming us to how low the oxygen saturation was within his blood. It was after a little while and a few more attempts of trying different things that the number began to creep back up to an acceptable range. At that moment, I decided above 85 was acceptable. Through the night his oxygen numbers began to stabilize, as his heart rate began to increase. By 5am his HR was over 150 beats per minute- that's over 100 beats more per minute than his heart typically beats. Wyatt doesn't mount a fever response to infection, so fever is rarely on my radar anymore these days. The working theory is that his body is so immune compromised/impaired that it's unable to react in an appropriate way to infection...like raising its temperature. Lo and behold, Wyatt currently has a significant fever. At the time it was 102-103 (temporal and axilary). Concerning and baffling, to say the least. Extra worrisome because he's had quite significant infections with no fever this last year, so I'm wondering what it took to make his body finally react in such a way. And he's still on antibiotics for the last infection in his central line. Which I realize doesn't mean much when dealing with such vast types of bacteria, but still.

After emailing the docs at 5am and then talking a plan out via phone- the cultures were ordered; Bryan drove the urine to the hospital; our infusion nurse is on his way to draw the blood cultures. While the infusion pharmacy is putting together the new antibiotics that will begin ASAP.

Right now he's wearing the nasal cannula and working hard to breath. But he asked to take off the bipap mask. He's keeping his numbers up for now. But this part is hard- I can see and hear him struggling to breath.

We will continue to treat, support and keep him comfortable to the best of our ability, but as I've been recently reminded, the rest is up to him. It's his call.

Thank you so much to those of you praying us through last night. Keep those good thoughts and prayers coming, please.
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  1. I stumbled across your instagram back in January and have been following your family's journey ever since. Though we have never met, my heart has been so touched by your courage as a mother, and the courage of your super hero boy. Know that you are in my prayers!

  2. Strong prayers, comfort and thoughts go out to Wyatt and your family. Rebecca

  3. PRAYING HARDDDDD!!!!! Please keep posting whenever you are able...I will sit and pray until I hear more. Love all of you!