Day 6: DISCHARGE DAY!

So, today was discharge day!  I slept at the hospital with Ava last night and she did WONDERFULLY.  The nurse only woke her twice - for her dose of oxy and she took it easily and went right back to sleep.  Praise God for miracles!!  Her meds were at 1am and 5am - I woke at 7am and she was still sleeping. I thought I'd doze for a bit and then we'd get up and get moving.  But when Dr. Standard's PA came in for her discharge exam at 8am, we were both still completely passed out!  Oops!

Everything looked good and the OT came in for her follow up too.  She said she could help us with Ava's first shower post-surgery (which included pin care and re-application of the sponges) so I jumped on the chance to have expert help for that!!  Ava is always very anxious about getting any type of wound (scratches, skinned knees, cuts, etc.) wet in the shower/bath, so I knew that the first shower especially would be rough.  And it was, somewhat.  But honestly, it wasn't nearly as bad as I thought it would be.  We used the hand-held shower head and she sat on the bench and just let the water run down and soak the sponges around the pins.  I took some of the sponges off, but Ava wanted to do it herself - which lasted until she got to the first pin that was stuck on and that freaked her out.  Honestly, it freaked me out too.  Pulling on the sponge that was stuck to the open wound made my toes curl a bit - and when she hollered out in pain as I was doing it, I just wanted to throw my hands in the air and say, "I'M TOTALLY DONE WITH THIS SHIT!" But I didn't.  I stayed positive and smiled and told her we were almost done in a cheerful voice.  When she stood up and we turned the water off, the OT put the towel around her and had her take a few steps toward the bed.  As she was doing that, I pulled off a few more of the sponges and pretended that they just 'fell off'.  But there were two that were totally stuck on and even when we got her in bed, they had to be peeled off, which made me a little nauseous.  Then, there were pieces of sponge and dried blood on those two pins that I had to really work to get off with a washcloth.  Luckily, my mom had arrived right before that and she talked to Ava and had her focus on looking at her and not what I was doing, which made a big difference.  She wanted to put the sponges back on by herself, which worked to a point.  She'll get better at it, but there are a couple she can't really see and it's hard to get them on properly.  They took the dressing off of her incision site, which actually looked a lot better than I thought it would.  (Dissolvable stitches for the win!)

Once she did that, we tried to get a pair of undies on her for the first time, but they were a bit snug - and the whole right side of her upper thigh and girl parts is all swollen and bruised from surgery. It's really awful looking (thank God for pain medicine so she doesn't feel that!) so we just put on a dress and called it a day.  :)

We packed up the room, got our final marching orders and were checked out at 10:30am!

We had our first outpatient physical therapy appointment at 11am, so we headed right over there.  Ava had perked up considerably after her shower and being discharged, so I was hopeful for PT.  It started out not so cooperatively, but definitely got better as the session went on.  By the end, she walked amazingly - with absolutely no help (just the PT basically spotting her) and got up on the wheelchair all by herself!!!

Look at that smile!!!  She knew she did a great job!  **I will add video here tomorrow - it's too late and I can't stay up any longer to figure out how to process the video files and get 'em uploaded**

We went to check out the pool and get the lay of the land for Wednesday when we have our first aquatherapy appointment.  I think she's pretty excited about that.  They are going to start teaching her to navigate stairs in the pool, too, so we can go home.  :)

After that, we went to lunch where we FINALLY got the care package that the Nedelka family sent us last week!!!  We had to do some super sleuthing with both the security department and the shipping/receiving department - but we got it and she was SO excited!  THANKS, guys!

We headed over to the Hackerman-Patz House, which is our home away from home for the next week.  It is a bit more expensive to stay here than at the Ronald McDonald House, but it is literally across the street from the hospital, so we can walk there for PT and to eat at the cafeteria, which is nice.  And not have to worry about getting on a bus/shuttle or putting Ava in a vehicle of any kind.  That is a huge load off my shoulders.  Our room is really nice - Amber called it the Penthouse.  We have a 'corner room' with two double beds and a roll out bed as well as a kitchenette and big bathroom with a walk in shower.  

Ava was tired after lunch and getting to the HP House, so she went to the bathroom and we got her settled back in her chair and put the extender bar back in (which wasn't too much trouble this time!), and she took a nap.  She literally was out in about 3 minutes and slept for THREE HOURS!!! 

About an hour into her nap, someone started POUNDING on the door - okay, knocking very loudly, but it felt like it was the big bad wolf shouting, "Little Pig, Little Pig, Let Me IN!"  I opened the door and said, "Shhhhh!  Wake my child, and I WILL CUT YOU!"  He literally took two steps back.  It was so funny.  Amber was cracking up.  It was the delivery of her wheelchair (the one she's been using was loaned to us by the hospital).  He showed us how to use it in the hallway and when Amber asked him a question he said, "I don't want to get cut".  hahahahaha!

So, after we woke her up, she didn't feel well, so we thought she needed to eat.  She had a yogurt and we ordered dinner at a local Mexican Restaurant called "Holy Frijoles".  Amber and I laughed about that for a good few minutes.  And Amber went to grab a couple movies from the huge stash of movies here at the HP House.  Her favorite, "Emperor's New Groove", and "Aladdin", which I thought Ava would like.  Before mom could get back with the dinner, Ava threw up the yogurt.  :(  Luckily, she was in the bathroom standing up, so clean up wasn't so bad.  I don't know what caused that, but about an hour after dinner, she threw up her dinner too.  So, we are going to have to keep an eye on that.  She isn't eating but 25% of any given meal yet, so we will see what comes of that development.  She ended up having some oatmeal later tonight and kept that down, so that is progress.

We tried to FaceTime tonight, but it wouldn't connect, so we ended up getting Google Hangout to work.  It was really fun to chat with Carter and Ryan who are at home (and Jo!) and for Carter to see Ava and talk to her.  I didn't really think of it this way, but my mom mentioned the fact that Carter has really NEVER been away from Ava in his entire life.  I bet this is confusing for him and hard for him to be without her.  Poor guy!

Amber and I went to Target with a list of things - some for Ava (like a basket for her wheelchair so we can store things and still push her easily) and some just food/drink things for the week we'll be here.  We didn't get back until late and Ava was watching the movie.  We got her all ready for bed, but couldn't get the extender bar back in....again. I have a feeling this is going to be the hardest part.  I was surprised since she had it in for 3 hours while she napped, so she was stretched out then, but it didn't seem to stretch far enough.  We've figured out a process to getting her in the right position for it to go in, but it is definitely not easy and tonight took over 30 minutes again.  It was after 11pm when she finally went to sleep, which meant she was tired and grumpy.

Looks like Ava is going to have quite a bit of company this week, so we'll see how the schedule goes - I don't want her to get overtired.  But she has friends who want to visit her and family who are planning to come lift her spirits, too!  There's another little boy who is 8yo who is having his ex fix surgery on Wed. and I've been chatting with his mother via social media for a while.  They were diagnosed at just about the same time we were, so our journeys are similar.  We thought it would be nice for him to see Ava and her ex fix and see her getting along pretty well so that he isn't so scared going into surgery.  And maybe we can then visit him a few days after surgery when he's stuck in the hospital and maybe feeling down and upset so that we can lift his spirits.

All in all, today was 2000% better - a HUGE improvement over yesterday.  At one point, when she was walking to the bathroom with her walker in front of her, I asked if she wanted my help with scooting her leg forward and she said, "I'm INDEPENDENT, mommy".  Yes, you are, dear Ava.  You have always been.  So now is a chance to really shine and let that independent streak work for you!!!  :)