Wednesday, October 12, 2011

Home again

We finally got discharged from Children's last night around 6 and made it back home to our place around 7.  It was so nice to be done with all the hospital stuff and back where we all belonged. They took great care of us at Children's, but it's still not the most fun place to hang out.

Ethan's doing okay, but definitely is having a harder time recovering that we anticipated. I told Daniel last night that I'm really glad we had exhausted every single other option and knew this was absolutely what we had to do, because it's tough to watch Ethan be in pain on Monday and Tuesday and now just tired and not wanting to do much more than sitting.

Last night I was too exhausted to deal with a nighttime pump feeding (how quickly you lose the ability to deal with sleep deprivation!) so we held off until this morning. Probably a good thing, as Ethan finally broke down last night and spent a good 30 minutes just sobbing. Not because of pain or discomfort, just because of all he had been through in the past two days. I can't imagine being 4 and not understanding what's going on or why you're there or why you hurt. I remember being angry and frustrated after the four surgeries I've had in my life, and I was old enough to know what's going on every time.

The feeding tube does seem to be working well now, and it's WAY easier to use than the NG tube was. No checking tube placement or worrying that the tube is in the lungs or that it's too far out of the stomach.  I just program the pump, load the bag and plug Ethan in.  Definitely less stressful and worrisome than before. I'm running a small amount of food into him right now while he watches TV, then we'll start with nighttime feeds tonight.

On multiple occasions over the past week, people have asked me how I'm doing with all of this.  And I keep having the same comment, that I'm tired, but fine.  I don't know if this is how all parents feel, but I just feel like in the midst of the surgery and recovery and treatment, I don't have the time or energy to deal with my own emotions. I have to be paying attention to what's going on and advocating for my child and taking care of his needs. I'm sure there is some stress and other emotions lurking in the back of my brain, but the "what I need to deal with right now" part of my brain is not letting those through. Also, there's the fact that when you go to Children's, it's pretty likely that you're going to be surrounded by kids who are much sicker than your own. The girl that was in the same room as Ethan had been there for a month.  A MONTH at Children's.  So our two days there and Ethan's surgery didn't seem so bad after all.

In other news, Vivian has spent the past 4 days going from being alone with Daddy to being spoiled rotten by lots of relatives up in Canada to being back here with me (briefly) to being home alone with Grandma, to hanging out at the hospital for hours...and you can probably imagine what that ends up with in a 2 year old.  Reprogramming of the toddler desperately needed!  Poor kid though, she understands even less about what's going on than Ethan does.

So, spending today at home trying to get Ethan back on track and catch up with the laundry. Oh, and admire all the piles of random things that my mother-in-law folded while she was here.  She's not one to sit still or rest, so between chasing Vivian around and entertain her, she tidies up, and since my home is already pretty tidy, she's reduced to folding anything that isn't folded. It's both useful and entertaining, all at once.

No comments: