Day 9: Post Op Appointment Day

Today was a fairly calm, easy day overall.  Ava decided that she wanted to try to only take Tylenol (regular dose like she has for a headache or fever at home!!) instead of any other pain medication because she is convinced that the oxy is what is making her sick.  So, we started our day with a little bit to eat, took Tylenol and Ativan and we headed to PT.  She did well, but the report was that her knee flexion was about 15 degrees less than on Monday when they measured last and she seemed to 'fight' her a little more on it - probably due to a little increased pain without the heavy-duty pain meds.

We came back to the HP House and they had big platters from Chick Fil-A (WOOT!)  Tasted like home!!  Ava ate SIX NUGGETS, some fruit and a cookie...which is the most she's had in a long time. That was awesome! And it stayed down, praise Jesus.

Our Post Op Appointment with Dr. Standard was after lunch, so we headed over there.  They did an X-ray to be sure that the femur has been distracted enough from the hip socket so that it will heal in the right place and that there is enough space between it and the hip socket.  A bit shocking to see an xray of your child with all this metal. All those pins inside her little body.  :(

The PA's and Dr. Standard all talked to us.  They took the time to answer all of our questions and silly concerns.  I asked when we could go home and he said that as long as we have PT set up at home, we can go anytime.  So, I need to follow up with CHKD tomorrow to see if they can fit us in earlier next week so that we can go home sooner.

And I need to figure out what we need to do to modify our home slightly so that she can get around in her walker/wheelchair.  She's getting better at getting in and out of it as well as using the walker.  We finally got a walker that is the perfect size for her - wide enough for her and the fixator, but short enough for her height.  :)  We can stay here at the HP House through Sunday night, but our room goes to another family on Monday morning, so if we don't go home then, we at least have to move to another place.  That could be more trouble than it's worth....although I'm not sure I'm ready to take on going home quite yet.  There is something really comforting about being here with all these other people who have fixators and walkers and wheelchairs and crutches.  At home, I know that we will be running into all kinds of obstacles and I'm not sure we are ready for that quite yet.  And the comfort of knowing that Dr. Standard and his staff are literally ACROSS THE STREET is super nice.  5 hours seems like a long way to go right now.

After the appointment, we hung out with Nana & Papa more, they gave Ava some presents - things to keep her occupied during the summer months inside - and played games.

We had dinner and then it was time for shower and pincare.  I've been dreading it all day, quite honestly.  Ava is so incredibly anxious about it.  We tried a few of the different suggestions but none really worked fabulously.  We did get a shower stool that was smaller and that helped her sit more comfortably, I think.  Mom was here to help me and she washed Ava's hair first and we just let the water fall down on the pin sites.  Ava put on her sleep mask so that she didn't have to look at the pin sites and when we got to the point of taking the sponges off, I guided her fingers to the sponges and she pushed them off.  But she cried through pretty much the whole thing and was all tense and upset.  I hate that for her.  I hate that she is so upset over the pins and the thought of them. The two knee pins seem to bother her the most - and they seem to seep the most, which means the sponges have stuck to her with the dried blood.   So peeling them off is uncomfortable and makes her freak out. Unfortunately, there was a tiny piece of sponge left stuck to the pin - and right at the opening. :(  So I had to really slowly work to get it off and that took a little while.  If she wasn't so anxious, I would have just rubbed it off quickly, but I want her to trust me, so I had to go really slowly and stop every time she said to stop - which mean every time I barely touched her.  Finally we got it finished.  I wrapped a towel around her so that she couldn't see anything and she walked out to the middle of the room where I had all the supplies set up.  I set up a Google Hangout with Daddy & Carter (and Belle and Jo were there!) so that while I was drying the pinsites (with a hairdryer on cool) and applying the sponges, she would be distracted.  It actually worked pretty well.  So, we'll try something similar tomorrow, maybe.  Either a movie or a Google Hangout with someone else!!

Bedtime tonight was okay - mom left to drive back home at 8pm and Nana and Papa left shortly thereafter.  Mom was only supposed to come up Sunday and leave on Monday.  But I think when she got here and realized how much work it was to do every.little.thing, she decided to stay to be an extra set of hands.  And I think she was worried about me being here by myself when Amber left on Wed. It was nice to have three people to manage everything - if one of us needed to go get something or run and get dinner or go to the store, it wasn't like the other was left alone.  And honestly, today was the first day that I felt like I could have possibly maneuvered Ava in and out of the chair, toilet, bed by myself.  So it is really amazing to have all this support.

Ava had a little soup to be sure she had something in her stomach before bedtime, we did her stretches (while she watched a little of her movie) and then it was lights out.  But she couldn't get comfortable tonight and cried big, fat tears that she really wanted to sleep on her side. She was so tired and just couldn't get comfortable enough to actually fall asleep. It has been really hard for her to learn to sleep on her back without moving all night long.  Honestly, I'm not sure I could do that either!  I sat beside her bed and tried to get her relaxed for a while and nothing seemed to work.  She was having some muscle spasms, so I heated up a bean pillow and put it on her leg.  She fell asleep fairly quickly after that, but it was about 9:45pm by then.  I went back over to check on her and take the heat off and she was asleep with her hands both criss-crossed on top of the fixator.  "Hallelujah" was playing on the ipad next to the bed and I just lost it.  I wanted to call them up and say, "Get this thing OFF my baby!  Just take it off.  TAKE IT OFF!"  But I know I can't.  I know this is what has to happen now, even though it sucks.  Going to the bathroom is going to be a struggle, sitting on the toilet with this thing is a pain, taking showers is an hour long anxiety attack for her, getting comfortable in bed is going to be a struggle, getting anywhere is going to be a struggle.  The whole freaking summer is just going to be a struggle.  I have no idea yet how I'm going to go back to work and be gone for 4-5 hours at a time for a newborn session or cake smash session. Who is going to help her to the bathroom or hold her leg in the right position?  Who is going to be sure she takes her medication at the right time or doesn't try to walk too much or fall with her walker?  While I want to go home (of course!) and it makes me tear up every time she looks at me and says, "Mommy, I want to go home.  When can we go HOME?", I don't know that I am strong enough to handle this at home....with everything else around.  A 5yo boy who doesn't really have a clue what all this is and how to be careful, Ryan's new job that is pretty demanding and seems to have long hours, my sessions that are fairly lengthy and not at all consistent, making meals, getting everything set up for her to be able to get around our house....ugh.  This past 8 days, I've been 100% focused on HER.  How does this fit into our daily life and schedule?  I just don't know.  And so I sit here in the dark, by myself for the first time, wondering how this is all going to really work.  And I have no answers.