Morning Update – Oct. 2

A PA from ortho came by to check her leg this morning. Everything looks good. That’s best news of the day.

Megan is doing well. She can actually keep her O2 up on room air as long as she keeps calm. This is good considering she keeps pulling the air supply off. She is done with all these things connected to her.

Last night she was opening her hand very well. This is a great sign. She still has coordination issues but is doing a pinching grasp. In a lot of ways her movement growth reminds me of her ability growing as an infant. That is probably a similar kind of process for her. The difference is the speed is much faster. She is making connections every time she falls into deep sleep.

I explained it to her like her brain is a big city and there are roads connecting everything. When she needs something a messenger is sent to the building with that information or ability. Most of the buildings are just fine but there was a big earthquake in her head and a lot of the roads are damaged.

If she tries to do something and can’t it’s like the messenger trying to get to the building found the road was too damaged to pass. The messenger tells the people in charge and they tell road repair to fix it or find a new route. When she goes into deep sleep the road crews all head out to try and fix things.

When she wakes up from a good, deep sleep the road crews have either repaired or made new routes for all the things the messengers reported. This means she can move muscles she couldn’t before. It takes some concentration because the messengers are learning the new routes but over time they get better at the new routes and it gets easier.

This is the problem when she doesn’t sleep. The road crews don’t finish their job and worse the regular maintenance crews that are just cleaning the roads and buildings don’t do their jobs all the way either. This last part leads to what is called “ICU delirium.”

Last night was another hard night. Maybe the worst. She fell asleep well but then woke up around 12:30. After that she didn’t get back to sleep till they got her some different sleep meds at 5:30.

At one point last night she asked me to call mom. I told her mom was sleeping so she asked me to call dad. I told her I am dad. So she said, “No my dad. Call my dad.” I explained I am her dad and she shook her head and said, “No you aren’t. Call my dad.”

I thought “she can’t see me in this mask” and pulled my mask away. She still didn’t know me. I told her stories about us and she still didn’t know.

Finally I realized I didn’t have my glasses on so I put them on and she recognized me.

This morning she knew me right away, but it has to be terrifying for her.

Prayer needs:

• sleep
• sleep
• sleep

Honestly that is the biggest thing. She has a procedure today to place the feeding tube and she needs other healing but without being able to start getting regular sleep at night she won’t get better.

Talitha cumi but sleep well first.