A sad day for Eden...

Last night was just ok.  Eden had stomach aches and pretty bad diarrhea from the medications she is taking.  That made for some pretty light sleeping with lots of waking up to go potty.  She woke up still really tired this morning.

She got a dose of morphine around 10pm because she was crying and having such a hard time falling asleep because she was hurting.  The morphine knocked her out pretty good and I decided it was a great time for me to escape to the shower room to get cleaned up.  After coming back, I got settled in the chair next to her bed to take the first part of the night shift with her.  Around 11:30 she went from a complete dead sleep, to bolting upright in her bed.  She moved so fast it completely caught me off guard.  She was still under the influence of the morphine so I could tell she was not totally aware.  I crawled into the bed by her and started asking how she was feeling and if I could help her get comfy.  She kept trying to tell me she wanted something and it was frustrating her that I couldn't figure out what she was saying.  I finally got it figured out that she was saying she wanted to play Legos.  It was pretty funny at the time because she was so asleep and then all of a sudden we are playing. She was very cute.

So then that brings us to an update for today.  Physically, Eden is doing a little better.  This morning they took the drain tube out if her chest which will help to relieve more pain.  She still has the drain tube in her neck incision and hopefully that one will come out tomorrow.  From what we understand though, the chest is where most her pain and discomfort is coming from so taking that drain tube out is a big step in the right direction.

She got the "ok" from the ENT to eat a little if she wanted.  It's really hard to swallow with that huge tube back there but it's possible.  We got her a chocolate chip pancake this morning which is a favorite of hers.  The first bite she gagged pretty bad, but she wanted to try more.  She ended up having probably about ten bites before she was done.  Obviously they are still doing her nutrition through the feeding tube.

Emotionally though, today has been probably the worst day for Eden.  Since the time she got up this morning, she has just been sad.  She has been pretty uninterested in anything to do or watch.  She has hardly attempted to communicate with us at all.  She is mostly just looking away and not making eye contact.  She is also completely ignoring the nurses and RTs when they ask her questions or try to talk to her.  I think being here is really starting to wear on her.  I can only imagine how hard it must be to be in pain, have those horrible tubes hanging off her face and IVs in both hands.  And if that wasn't bad enough, it's incredibly hard to swallow and she has no voice or sound at all.  I'm sure she must be feeling very lonely and isolated even though either Brad or I have always been with her.  She is feeling sad and frustrated and I don't blame her one bit.  Sometimes I just need days to be sad and mad so I understand what she is doing and I'm just trying to be here for her to help her feel loved.

I was laying down next to her to help her feel comfortable and snuggled as she was falling asleep.  She was having a hard time finally giving in to the exhaustion I know she is feeling.  I asked her if I could do something for her and tears started streaming down her face and she mouthed, "mom I just want to go home."  I wish so bad I could scoop her up and take her home.  Unfortunately we are still here for quite a while, but hopefully when that tube comes out of her nose and she can talk and eat that will make a big difference.  

Oh Eden my sweet baby girl, my heart breaks for you.