Sleepless in Salt Lake City

After ten amazing days of being outpatient, Davis' symptoms once again required an overnight stay for blood and platelets. We began with the usual, unusual routine. It was a series of delays right from the start last night. His central line kept bleeding and needed redressing, which caused delays in infusions. We changed the pre-medications to hopefully keep Davis from having a reaction. The first bag of platelets had only been infusing 8 minutes when he began with a severe reaction. As people rush around and his breathing becomes more and more difficult, time seems to slow. The eye contact of a child struggling to get enough air pierces your very soul. What an incredibly helpless feeling as a parent.

As I stand back to get out of the way, my heart melts as he just fixes his eyes on mine for reassurance.

Platelet infusion stopped, medications pushed to hopefully reverse the symptoms of the reaction. As we maintain the gaze of security, and after a while, his breathing begins to loosen and he can talk. A few hours later, we start again. Thankfully, the rest of the night was reaction-free. Once again Davis' patience astounds as he tries to sleep between the medications and frequent vital signs. He quietly takes care of any "minor" inconveniences. He calmly asks for tissues to spit the the blood clots from his mouth. He independently unplugs from the tubes and walls to walk around.

His obedient nature draws you in to feel of his spirit.

Our room this time had an incredible view of the valley and I
stared all night into the beautiful city lights...ahhh the night life.

Then 18 hours, three bags of blood, one bag of platelets, two blueberry bagels with strawberry cream cheese, three bowls of cereal and one chocolate milk later, we are on our way home!

Thank you for the anonymous,generous gift of cereal. He loves the large and yummy selection.
Thank you for the continued thoughtful gifts that provide him with many smiles, laughs and things to do.

We love you all...known and anonymous.
Until next time