In the thick of it...

The hospital has sleep rooms that families can request to use. There are a finite number of rooms and more parents needing sleep than rooms available. Priority is given to the family of patients in one of the ICU settings. On the first request, you are typically granted two nights. Subsequent requests are granted on a one night basis.

We were allocated a family sleep room for two nights starting last night. Abbey and I slept in the sleep room while Deana slept in the PICU room with Max. I had not slept in two nights so it was good to get some rest. The family sleep room is a simple room with a bed and small bathroom attached. No windows so it is dark, quiet and made for sleeping.

Deana and Abbey will sleep in the family sleep room tonight then at 9PM we will submit a request to get in the queue for another night.

This morning Max is still running fever, heart rate is elevated, breathing is good. Blood levels are declining so he may need more blood or plasma today. The surgery team (primary team on his care now) said he won't be leaving the PICU again until he goes home. His primary pain management (an epidural aka spinal block) was removed overnight because his fever has persisted.

Max is very low key and lethargic. Experiencing some pain. The misery of high fevers. No sleep. He really needs to sleep. With no sleep, there is risk of seizures. We've been able to hold that demon off so far. He shudders from time to time from the pain so we prompt them to give him more meds.

They'll run labs on lots of things soon - hematocrit, clotting factor, white blood cell count, urine culture, blood cultures - to see what his blood is doing and whether there may be infection showing up.

He's in the thick of the fight now.

Us? We eat, take turns resting, comfort him, and stay on top of doctors and nurses to make sure he gets what he needs.

We're holding it together. This is what we do.