No Easy Day:
Although I stole the tagline from a Navy Seal book I read a while back, I feel its an accurate description of each day we're at the hospital.

On Saturday night, God graciously gave Avery, Caroline, and myself a full night's rest at the expense of Dorothy's lost evening strolling Avery. It was almost too much, as I woke up with a bit of body pain as my body wasn't used to being at rest in one position for more than a couple hours at a time.

We figured with a full night's rest, Avery would be chippy the next day, but the pain and tremoring seemed to have gotten a bit out of control. His episodes (once started) would be inconsolable, and over the last two days, we've had nurses and doctors come from various wards to try to figure out what's going on with him.

As a result, we increased and added new meds, induced bowel movements, and gave baths and hot packs to try to calm the aggravated boy. We tried everything and became tired and frustrated as nothing would settle him. Avery also seemed to be able to power through the most sedating meds once he became angry; even the strongest meds had little effect on him if he was angry.

We are still trying everything we can to console him and figure out what is causing the pain / anger. The doctors are working with us on the drugs and therapy is also getting involved. Pray that God gives little Avery patience, as he's starting to become more and more aware of where he is, his situation, and his inability to do the things he used to. I sense at times he's becoming very angry and frustrated with what's happened to him and the long road to recovery. We are trying to explain to him that the time spent in the hospital is a necessary process for healing.

Last night, despite having only napped for 45 mins during the day and being obviously exhausted, he was unwilling to sleep with strong meds no matter how creative I got with the strolling. I handed him to my parents but they came back within 30 mins as Avery still refused to sleep. We broke out the serious medication at that point but after 1 hour (in the bed) he still would not sleep. Finally, after placing him back in the stroller, he fell asleep within a couple seconds. This was 12 am. By 03:20, the fire alarm woke us all up due to a triggered sprinkler at the loading dock. Since he was up, we gave him water, stool softener, Morphine, and Tylenol. I just about got him to sleep by 04:00 when the alarm went off again saying the false alarm has been lifted. He was up again and screaming, it was a tiring struggle until 05:00 (which was when his bloodwork needed to be done for PLEX at 08:00) so I kept walking him until we gave him some drowsy meds (Chloral Hydrate) and he finally fell asleep by 05:30 and slept until 07:15. PLEX ended up being delayed from 08:00 until 14:00...

The nurses and doctors tell us that sometimes they see kids get worse before they get better, so that was some comfort, but as we're on PLEX #6 today, the end is approaching and clinically he's not showing drastic differences.

This reminds me of the story of Joseph in Genesis 37. Joseph was 17 when he was sold as a slave and 30 when Pharaoh put him in power. That's a LONG time to be waiting on God, and despite his bleak situation in prison with seemingly hopelessness, he waited patiently on God for the unveiling of His plan.