Wish everyday was like the weekend around here

Weekdays are like a zoo. Weekends are like a ghost town.  No constant interruptions and people coming into our room every 10 mins.  And guess what?  Mila is sleeping, taking a nap during the day, like a 2 year old should be able to do. Especially one who just had her skull cut open and part of her brain removed.   The pain meds we just gave her are helping her sleep because she was miserable before that. But at least she can rest now. We don't have to worry about her being woken up by someone who wants her to do a little dance or bring a food tray we've been trying to refuse to get for a week. 

Don't get me wrong, I still feel confident in most of the team of doctors we have and there have been some great nurses and doctors who have actually listened to our concerns. But a lot of them just don't "get it", whether they are desensitized to this thing, or it's just another day of work and following orders, or they're not exactly familiar with the extent of a hemispherectomy. 

The saddest part of all of this, and I'm pretty sure you can apply this to most hospitals because this is our third one and it's all been the same, is that I have yet to have anyone mention the importance of rest in this recovery.  I feel like when we mention it they look at us like we're crazy or just completely pretend they didn't hear it. 

Mila seems to be a rare case in that she is taking a long time to come around. But it happens, they've told us that it occasionally does. Some kids are up and moving in a couple of days.  Each case is different. 

Mila's in a bad cycle of not sleeping at night, due to pain or getting interrupted every hour or two and not being able to catch up on that sleep during the day.  Also when she's awake, Marcela and I are awake.  They want her to start moving around and be more alert during the day, to be more active in physical therapy and start progressing more being able to eat on her own.  There is no one in the world that would like that more than Marcela and I.  But I'm pretty sure most people when they don't get decent sleep or are in severe pain are probably cranky, miserable, exhausted and don't really perform their best. 

To me rest is more important than therapy.  Especially right now. I understand how much physical therapy is needed. I didn't come to the decision of removing part of my child's brain, partially paralyze one side of her body and cut part of her vision in both eyes just to have her lay around all day.

We're blessed that there is a surgery that could help our daughter and surgeons and doctors that are capable of doing it.  Thankful for modern medicines and procedures that cure and help health conditions when nothing else can. But one of the problems with the medical system we have is that too many are looking for the quick fix and routine process of potions and pills and not listening to our bodies. Which are always trying to tell us something.  Mila's is saying let me get some sleep damn it. 

Rant over, thank you for listening.