Days 15-19: Home!

I have a feeling that the updates here will start to be weekly more than daily as we settle into our lives and try to balance again.   We drove home after PT on Wednesday - Ava did pretty well, actually.  I knew that stopping to use the bathroom would be a challenge, but I didn't anticipate quite how much TIME we would lose doing so.  I simply cannot get that wheelchair in and out of the car multiple times, and she really needed to stretch anyway - but parking and walking with her little walker all the way in a rest stop building and to the bathroom was tedious.  I never had occasion to wonder before, but WHY oh WHY are the handicap bathrooms at the BACK of every restroom???  Just further away for someone using assisted devices to have to get.  :/

We made it home, though and Ava has been doing pretty well.  We are still battling pin care and showers and re-application of sponges every day.  There is some scabbing and dead skin that needs to come off around the pin sites and she really fights me on that.  But I don't want there to be any chance of infection, so I feel like I need to get those things off.  She is sleeping pretty well and doesn't seem to have much pain during the day, so that is a good thing.

Up and down the stairs at home is tricky.  She does well, but it still just looks precarious and scary to me.  So we are trying to limit her to downstairs for the day and upstairs when it's bedtime.  But the shower is upstairs and she really needs to nap in the middle of the day, so it's more like twice a day.  Here is some video of the process.

We had our evaluation at CHKD PT the morning after we returned - bright and early at 7:30am (ugh!).  I really like the PT we met who will be doing land therapy 2x/week.  And we will have 1 day a week in the pool.  I feel like she should do more than 3x/week, but am going to go with it for now and then perhaps ask for more in a few weeks depending on what her numbers look like.

We had the first pool therapy on Friday and it was definitely different.  It's 1:1, which is awesome, so the therapist is 100% focused on Ava and watching when she's cheating.  LOL  The pool has a drop down floor, so Ava just walks on it and then it moves down and the water rushes in.  Very cool!

This weekend, Ryan's mom arrived to help take the burden off for the week of transition.  I have a lot of 'catch up' work to do with my photography business...clients waiting to see their images, clients waiting to get their prints/files, clients who have been waiting on me to get back to shoot their sessions, etc.  I feel totally 'out of it', but slowly making my way back to caring.  Not that I don't care about my clients, but when you are 100% focused on a child's every physical need like this, it is exhausting and leaves absolutely no room for anything else.  I thought I would have a few hours up there each day - or even every other day - to edit or something.  But I honestly did NOTHING the entire 2 weeks I was in Baltimore.  There just was not time.  The all-encompassing nature of this process is overwhelming. Thank God for my friends and all those who signed up to bring us meals.  It has been wonderful this week not to have to worry about getting to the grocery store and preparing dinner every night.  Thank you, thank you, thank you!

Day 12, 13, & 14: On the Mend

Sorry for the delay in getting anything new posted.  It was a whirlwind trip for me to go home and come back this weekend and I have been trying to catch up ever since.  I also apologize for all the crappy iphone pictures.  As a professional photographer, you would think that I would be using my 'big girl camera' to document this journey.  And I have, somewhat.  But trying to carry that on top of the wheelchair, walker, water bottle (for her), snacks, pool stuff for PT and anything else I happen to need just hasn't happened.  :)

After my session at home on Sunday, I popped Carter in the car and we drove back up to Baltimore.  I wasn't planning on bringing him back with me, but after 3 days of Ava literally crying at nighttime about how much she missed him, I felt like it would really be the boost she needed.  I wasn't sure how he would do on the drive, but he honestly surprised the heck out of me.  He didn't really complain at all - even though we took the scenic route (up US17 to US301 instead of taking I-95) and it took a full 5 hours.  Only once did he say, "I didn't know it would the *this* long to get to see Ava."  Ha!  He did feel sick a few times on the way - he tends to get car sick - and right as we got off on the exit into Baltimore, he threw up a bit in the bag I had given him a bit earlier.  Poor guy.  But he seemed fine after that.  I think it's the curved exits that really get his stomach turning.

I hadn't told Ava that I was bringing him, so it was a huge surprise.  She was SO excited and couldn't stop saying how it was the 'best surprise EVER!"

They played together for a while before bed and she went to sleep easily and happily that night!

On Monday, we had to 'check out' of the Hackerman-Patz house.  I didn't realize how long we would need to stay (apparently, there's not a hard-and-fast rule, so it varies) and they were totally full and couldn't extend our stay another couple nights.  We called the 'child life specialist' a few times on Thurs/Fri and again over the weekend to see if we could get a room at the Ronald McDonald House, but she never called us back.  I was a bit annoyed (okay, a LOT annoyed) that she couldn't be bothered to even return our phone calls. Even just to say sorry, we can't fit you in.  We called the RMH ourselves, but they said that without a referral from her, they couldn't even tell us if there was a room available.  Well, if she won't return our calls, how can we do that?!?  Ugh.  We ended up using the remaining points that Ryan has from his traveling a few years ago to stay at an Embassy Suites.  We reserved a wheelchair accessible room, but it's about 25 minutes from Sinai.  Ryan packed the car(s) while Ava and I were at PT in the morning and then he and Carter and his dad and Janet all came to see Ava in swim therapy.  She's still working on stairs and getting better every day.  She tends to 'cheat' on her counting - so someone kind of has to stay on top of her during therapy.  The therapists are at a 1:2 or 1:3 ratio, so it seems like they are stretched a little bit.  I don't know how they can really know if the kids are doing the appropriate number of exercises if they have more than one to monitor.  Sunni will tell Ava to do 30 knee bends, but I think she isn't really doing them all.

Ryan was working remotely from Sinai that day, so it was hard to balance him watching her, helping us, and then also working.  He happened to have a conference call he had to be on, so we got lunch and headed to the car.  It would be Ava's first car ride with the fixator and I wasn't sure how any of that was going to work. We struggled and struggled to find a car seat that would work with her fixator and there just simply isn't anything out there on the market.  Finally, one of the other moms whose daughter had this surgery a couple years ago said that what they did was buy a booster and cut the arms off.  The thought had never even crossed my mind before!  But it seemed like a simple enough task, so Ryan and his dad bought a hacksaw at the same time as they bought the car seat and went to fixing it on Sunday night.

Getting her loaded in the car felt really rushed on Monday afternoon, because Ryan had to hurry and get to his conference call and I was trying to fit everything in my car, while Carter was yapping away at me and I was trying to get Ava in her new seat comfortably.  She did awesome getting in the car and we propped her leg up and she was ready to go.  I was worried about the bumps, but she did GREAT. No pain!  That made me feel very good about the plan to come home this week.

We got to the hotel and I realized that I had no idea how to manage her, the wheelchair, etc. because I don't have a handicap placard for my car!!!  You have to get them in the state where your car is registered and we didn't get the paperwork signed from the doctor to present (in person, of course) to the DMV until this week.  So, I parked in the spot, got the wheelchair out, got Ava out of the car and into the chair, pushed her up to the sidewalk, got Carter out, had him stand with her, and then moved the car to a normal spot.  What a PITA!  The wheelchair accessible room is BARELY big enough, by the way. Actually, I'm finding it surprising how many places are handicap accessible, but BARELY.  Like, the bathroom door that is just wide enough for a wheelchair to wheel in, but not to turn around in.  I'm not sure how a person could wheel in, turn, close and lock the door, and get themselves onto a toilet.  :/   A whole education on accessibility is coming with this journey, too.

Anyway, we ended up getting dinner at the hotel in the restaurant (for a hefty price) because I couldn't stand the thought of getting into the car and driving somewhere, getting out of the car, into a restaurant, leaving there, putting the chair back in and out of the car, etc.  Too much work!  Ryan and Carter left around 7pm to head back home.  Luckily, traffic was sparse, so they got home a little after 11pm - and Carter slept most of the way home.

Ava and I slept in until 8am this morning and then it was time to get ready for PT.  We had breakfast downstairs (free breakfast for the WIN!).

I had to figure out how to get her and the stuff she needed to PT.  I ended up having to leave her sitting outside by the carport at the hotel while I drove the car up - the wrong way.  The signs were posted 'do not enter', but I did it anyway because her seat is on the driver's side and I needed it up against the curb.  LOL!  Heaving the wheelchair into the back of the SUV was crazy.  There is no way I will be able to do that every day. We're gonna have to figure something else out.

Anyway - we got to the hospital and I decided to valet the car just so I didn't have to deal with finding parking.  The nice thing was that the valet guy totally got the chair out of the back for me!  PT was fine and Ava worked on walking up and down stairs with a crutch.  I am still somewhat dubious of that, but they say it's the best way.

After PT, we went to have lunch with Cooper and his family.  His surgery was exactly 1 week after Ava's, so he is still in that 'I can't do it' phase.  But he's also a boy (and big and strong normally!) so I could see a little of the competitive edge when Ava started telling him the things she could do.  He perked up and acted like he wanted to do them too.  So she totally called him out and challenged him to a race.  We went to the atrium area and let them wheel themselves around a bit.  He wasn't sure he wanted to race, but quickly started having fun.  They raced, they got out of their chairs and walked, and I really think it was good for both of them!

We went back to the hotel and just relaxed most of the afternoon.  Ava insisted on walking from the car all the way in and to our room (on the 2nd floor way at the back of the hallway).

It was still a tearful mess for shower and pincare today - I'm really needing that to start to get better.  I can't deal with the anxiety and whining and freaking out over the littlest touch right now.  She's doing so well for everything else....it feels like this is the last big hurdle and then it's just learning to manage PT appointments, the car, the bathroom, and daily living. Okay, well, maybe not the *last* hurdle, but it feels like the biggest one right now.

It's already gotten so much better in a week, I'm definitely hopeful that by this time next week, we will have adjusted home and worked out the kinks.  Wishful thinking?  Perhaps!

The plan for tomorrow is 1 hour of PT and then 1 hour of pool therapy and then we are hitting the road and heading HOME!!! :)

Day 11: A good day

This is going to be a short one - with no pictures (gasp!) - because today was the first day I spent without Ava in quite a while.

Ava decided she *really* didn't want to take the oxy last night, against doctors orders.  She hadn't been in pain all day with only taking Tylenol, so I agreed.  Unfortunately, it went about the way I expected.  She was awake and uncomfortable every hour or two nearly the entire night.  Finally at 4am, I convinced her to take the oxy so that she could go to sleep and stay asleep.  I think the extender bar stretches her more than she thinks - and sleeping on her back is still such an issue for her.

The good news is that she woke up in the morning feeling good and not sick at all!  We all slept in a bit and I took some time to talk through all the things that Ryan needs to remember while I'm gone.  I have a newborn session scheduled in VB on Sunday and I simply cannot put it off another week.  We even got Ava showered and did pin care before 11am.  She did really well today.  Still very anxious and worried, but there were not nearly the tears and freaking out that there has been in the past.  There was only one sponge that was 'stuck' (that pesky pin closest to her knee) so she did great getting the other ones off without too much anxiety.

Ryan, Ava & I played a game of Quirkle - which honestly was a lot of fun.  :)  And then it was time for me to leave.  I admit to getting a little teary saying goodbye to her - and she looked at me funny, ha! - but made a hasty exit and got on the road.  I know they will be okay for 24 hours.

Nana & Papa are still there, so I don't feel so bad leaving Ryan & Ava.  I know that if he needs something, they can run to the store or get food or anything like that.  Plus, they can give him a 'break' if needed. Makes me not worry so much while I'm gone for sure.  I know Ava is having fun playing games with them - it's a nice distraction for her.

I ended up hitting nearly all the traffic possible from Baltimore to Norfolk....and I was so frustrated.  I guess it was good to have 5 hours in the car with nothing to do but think and decompress.  But since I hate traffic so much, it wasn't relaxing at all.  I got to my moms and Carter gave me a big hug, which was awesome.  When I put him to bed tonight, he said, "I love you, Mommy.  And I really missed you."  Kinda broke me up a bit.

I am thinking about taking him back with me tomorrow as a surprise for Ava.  If Ryan can work from Baltimore on Monday, it might work.  And I know she would LOVE that.  :)

Ava and I FaceTime'd tonight at bedtime and I coached Ryan through her stretches.  She is hopefully off to dreamland now....I'm sitting on my couch for the first time and it feels great.  Can't wait to be home for good soon!!

Day 10: PT and R&R

We are still struggling with morning nausea.  I am not sure if it is simply that she's exerting SO much energy just to get out of bed, go to the bathroom and get in her chair before eating a good breakfast or if it is anxiety related or if something else is going on.  Yesterday, Ava decided she didn't want to take the oxy anymore - so the only dose she had was a half-dose right before going to bed so that she could rest comfortably.  But today and tonight, she hasn't had any - only Tylenol every 4 hours.  I don't really want to wake her in the middle of the night for it, but I might.  We'll see.

So, this morning, we thought we'd see if laying in bed for a little while, munching on some cheerios would help settle her stomach before getting up and around.  It was my first morning alone with her, so I got showered and was getting ready to take her to PT when she started feeling sick again. I was so frustrated.  What is going on??  Why can't we get this under control?

So, she pretty much threw up the medication that she took - but I wasn't 100% sure of that, so I didn't want to give her another dose of Tylenol.  Off we went to PT not knowing if she had any pain meds in her body at all.  :/  From the Hackerman-Patz house, the Rubin Institute is literally across the street.  But you have to go a bit uphill to get to the cross walk and then yell at about 5 cars that BLOW by on the street, completely ignoring the cross walk sign that clearly states "Maryland LAW - stop for Pedestrians".  It should say, "If you don't stop for a child in a wheelchair and her clearly frazzled mommy who is pushing that child, carrying a walker, a water bottle, and a bag slung over her shoulder, you are a complete asshole."  But it's pretty normal now for me to expect them not to stop.  And then it's uphill again to get to the entrance.  That's *my* PT for the day.  Ha!

First hour PT was fine - she got to 45 degrees bend in her knee, which is not great, but (barely) passes muster.  She really needs to be 60-70 degrees in order to sit without support on her foot/leg (and that will help with steps).  But for a child with little to no pain medication in her, I was happy with those results.  On to pool therapy.  The prep for it today was much better.  Ava took all the outside sponges off without really much fussing.  We have to have everything off and rinse the pinsites before getting in the pool.  She is very anxious about it, just like showering in general and getting them wet and pulling the sponges off...so I expected a bigger fight.  But actually, it wasn't terrible.

She walked to the steps today and Sunni helped her learn how to get up them, sit down, and twist around to get into the pool and then go down the steps into the water.  BIG PROGRESS!!

 Unfortunately, it took us an HOUR to get from the point she got out of the pool to leave the locker room area and head back to the HP House.  I was totally stressed and exhausted....  She did okay in the shower.  I washed her hair and then put soap on the pinsites and rinsed it off.  I wrapped her in towels and we were off to the back room to dry and put sponges back on.  That's when things fell apart.  There was another little girl there (who has fixators on both thighs AND both calves!) and they were doing their pin care and reapplication and we couldn't really navigate around them very well.  I'm not as organized as they are - we've only done this twice now.  There are two blow dryers and only one really has a low/cool setting, so we had to wait on that.  And I really needed to get a few pieces of sponge off the lower leg pin and she was freaking out.  They are still seeping a little and that makes her go completely crazy.  Me trying to pick anything off a pin sets her over the edge.  So it took us a long while just to slowly do all that.  Putting the sponges back on didn't really take long - and she tolerated that pretty well, so I am hopeful for the future.  It has to get easier/faster.  I just can't take an hour of it.  And she was so tired too after 2 hours of PT.  :/

Came back to the room, ate a little something and she passed out and slept for 2 1/2 hours.

Nana & Papa came back over when she woke up and played games with her until dinner.  We ordered Chinese and I thought Ava ate pretty well.  Probably about 50-75% of what she would normally eat, so that was good.  After dinner, she wanted to try to play ping pong. I was very skeptical that she could do it at all.  But boy did she prove me wrong.  She had the BEST time playing ping pong with Nana. I have not heard her giggle that much or laugh and smile so big in...well, probably the entire 10 days we've been here.  It was so awesome!

After that, we played more games in the room until it was time to get ready for bed.  She started complaining that some of the pin sites were 'itchy', which I told her was probably a good sign that they were starting to really heal up - and maybe they'd start to look better soon too. It didn't seem to bother her THAT much, so we used heat and cool packs to help.

We've been waiting for Ryan to get here all day - he was hoping to leave work at noon, but that didn't happen, so he was set to arrive around 9:30pm and she was determined to stay up.  So I got her to the bathroom, in her PJ's, and in bed to do her stretches.  Pretty soon after, she got all teary that she 'Really, Really misses Carter."  She started crying that she wanted to go home.  Or why couldn't Carter come here to visit her.  It was all I could do to keep it together.  I saw Nana get up and walk away, so I don't think she was able to hold in her tears.  I hate seeing her so upset and the 'I want to go homes...I miss Carter and Jo' stuff really hits me in the gut.

When Daddy finally arrived, I thought it would be a quick hug, chat and off to dreamland.  Well, that didn't happen.  She cried to him about missing home and Carter again but we got her extender bar in and she seemed pretty settled.  They all left the room to chat and I sat by her bed to see if I could help her fall asleep.  Well, the itching/spasms only got worse.  I tried to get her to take the Valium, but she absolutely refuses.  ("It tastes like the most horrible stuff I've ever tasted, Mommy!") so I sent Ryan a text to find the nearest drugstore and get some Benadryl.  It took him a while and she just couldn't go to sleep.  She said "This and missing Carter are the worst things" Finally she fell asleep about 11pm.  She's going to be TIRED in the morning for sure.

Not sure how we can make mornings and nights better, but we need to figure something out and fast. All in all, it was a pretty good day.  This evening was fantastic - her napping was great for her and she was happy and did well until bedtime.  I'm a bit worried about leaving tomorrow for 24 hours.  I need to get home, see Carter and do a newborn session on Sunday before driving back up.  But I've really been the one constant here since day 1, so I don't know if I feel super comfortable about leaving.  Hopefully it will go okay....

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.

Day 8: Pool Therapy

This morning, Ava woke a bit on the grumpy side, and was sick to her stomach soon after getting up, going to the bathroom, & taking her medicine.  We are still struggling with figuring out what is making her vomit - I'm coming to the conclusion that it may be the oxy.  Which sucks because it's the pain medication that we've been giving her...and that I spent a crap ton of money on just a few days ago.  :/

We had PT at 9am and water therapy in the pool at 11am.  She did a good job at PT and I thought her walking looked pretty good.  She's getting more and more comfortable with the walker - but that means she's taking risks I don't always like.  And walking a tad too fast sometimes.  LOL!

They gave us an hour in between PT and the pool to get ready, which was good and bad.  Ava is still so anxious about touching the pins or taking off the sponges.  She cried that she wanted to leave the sponges on so that she "didn't have to look at it" again today.  I posted on FB for suggestions this afternoon and will be trying out all of them until we find one that sticks for the future.  We had to get all of the sponges off and rinse the pinsites before getting in the pool.  The sites are still looking pretty gruesome to me.  The worst part is the seeping.  Blech.

You can see the long incision on the left and the greenish bruising that is still there.  She's still swollen a little pretty much everywhere on that leg.  The abrasions around the pins near her knee (right picture) look like they have stitches in them to me.  I'm planning to ask at the appointment tomorrow.

Transferring up onto the chair lift was even a bit of a nightmare because of the footrest and the hard surface and her anxiety.  I felt like there was really nobody there who could guide us through this first session and that was really hard.  I kept waiting for someone to help us...or step in and tell us what works best...or something and there just wasn't anyone.  The good news was that she loved the water and it didn't seem to hurt her (which was her fear - that the pool water would hurt the pins).

She loves the water and the pool usually, so I am glad this was a positive for her.  She got tired toward the end and didn't want to finish her exercises but generally did well.  It was cool to watch her walk in the water and bend and stretch in different ways without the weight holding her down.

After getting out of the pool, we had to figure out how to maneuver her tired body to the shower and wash off, wash her hair, get out of the suit, dry off, get dressed, dry off the pin sites and then reapply the sponges and gauze.  All with a little girl who is highly sensitive, anxious, and did I mention EXHAUSTED from 2 hours of PT? She was in full meltdown mode...in the middle of everyone.  I try not to worry about what others think, but it's hard to not just want to say, "SUCK IT UP - look at all these other kids!  They aren't crying and freaking out!!!"   But I did my best to stay calm and measured and work with her and remember how new all of this is to her and how scary it is and how she's only 8yo and she's never had anything more than a paper cut to deal with in her entire little life..... By the end she was so tired she couldn't hardly hold herself up, but I am not really speedy yet and getting the sponges on - and the back hip ones she has to be standing for or I can't figure out how to wedge them in without her screaming.  :/

We got back to the HP House and it was time to say goodbye to Amber.  I can't express how much it has helped to have her here. We all joke that she's the smartest of all the Bradley kids, but I'm pretty sure that it's really not a joke. And her extensive knowledge of hospitals, medications, dosages, side effects, etc. (all the stuff she knows as a pharmacist) was absolutely amazing to have.  Plus, it was nice for me to have some comic relief every once in a while and someone just to chat with and 'take a break' with during those long hospital days and nights.  After mom left to take Amber to the airport, Ava got ready for a nap, so it was time to put the extender bar in.  For the first time, we actually had MORE space than we needed between the posts.  Ava wanted me to take a picture!  Where her fingers are holding the bolt, it's supposed to fit in the next hole you see on the bar next to it!!

Ava slept for about an hour and a half and I finally had a chance to do a few work related things that have been waiting since my hasty exit from Virginia Beach.  I have briefly thought about KGP and my clients a few times, but honestly have not even had 30 minutes to open my computer and do anything except write this blog.

This evening, we had more visitors (I was so tired that I forgot to take any pictures!) - but Ryan's sister Rhonda happened to be on a work trip about an hour from here and drove over to see Ava.  And Papa and Nana McGhee arrived this evening from Ohio to cheer her up with balloons and smiles.  Ava and I were downstairs painting (craft time at the HP House was so nice today!) when they arrived.  Unfortunately, Ava got sick again and we came up to our room to clean her up and get new clothes.  They played a couple games and we visited until about 8:30pm when it was time to get Ava settled and in bed for the night.  She ate some soup and seemed to keep it down.  But she was VERY resistant to taking the oxy at bedtime.  We called Aunt Amber for advice and she said to eat a little and drink a little and take a little less of a dose of oxy for the overnight and then we'll see about possibly trying out Tylenol tomorrow.  I'm scared to take her off the oxy all together and find that she's in serious pain tomorrow.  But I also don't want her to be sick to her stomach and not able to eat/drink (or not wanting to for fear of throwing it up!).

She has two little sores on the backs of her heels from sleeping on her back and not being able to shift much or move when she sleeps.  I guess we dropped the ball on making sure her heels were up off the beds.  The nurse gave us these air cushion boots that I'm calling her 'moon boots'.  So, she went to bed with them on tonight.  HA!

Tomorrow we have regular PT and then our follow up with Dr. Standard tomorrow afternoon.  Will keep updating!!

Day 7: PT Day 1

Today was another day of ups and downs, so not many pictures.  We started out the morning sleeping in (woke her up twice overnight for meds and she totally fought it at 6am).  We had an 11am PT appointment, so we were up and getting around at 9:30am and Ava was immediately complaining that her tummy hurt and she felt sick.  She ate a little bit and promptly threw it up.  :/  Even though it was time for her next dose of oxy around 10:30/11am, we decided not to give it to her for fear that it would just come back up.  So, the plan was for Amber to stay with her at PT while I ran to the hospital pharmacy to get the prescription for Zofran filled.

When I got back, she was choosing a movie to watch during PT, so everything seemed ok.  After the initial physical therapy day where parents are there to answer questions, they want us to sit out in the hall and not be right in there with the kids so that they can work with them without distraction or anything.  So, I sat in the hall and talked to Abby for the first time about anything KGP-related.  Felt weird to try to change my brain waves to think about clients and files and orders after truly focusing only on Ava for the past 6 days straight.  There is just no brain power left for anything else with situations like this.  I cannot imaging having a full time job and having a child with any type of disability or disease. I am not equipped to compartmentalize like that, I guess.

Anyway, Ava did a fabulous job at PT despite the fact that she hadn't had her pain medication - leading Amber to counsel me that maybe we should start either cutting back on the dose or stretching out the hours between doses.  During PT, we saw a family coming around to see the PT area.  It was a teenage girl on crutches with her parents and Dr. Standard's PA.  She had a few questions for Ava, but when they saw her walking with the walker, they were shocked that she had just had surgery on Wed. of last week.  The teenage girl even said, "I was really scared until I saw her." which made me feel really good that we were able to bring some comfort to her.  When we got back to the Hackerman-Patz House, Ava met and hung out a little while with another Perthes patient who had the same ex fix surgery one week earlier than our surgery!  His name is DJ and he is turning 9yo soon.  They played Wii together while his dad and I chatted.  He is a very athletic kid (you can tell just by looking at him!) and I can definitely tell by the way he maneuvers the wheelchair alone.  He looks strong and fit - his dad said that he was pretty much weaning off the pain medication and onto just straight Tylenol before they left the hospital!  Ava will have PT with him in the pool tomorrow, so it was nice to chat with them.

After that, we had visitors from home!  Brooke brought Lily and Bo from Richmond to see Ava (and hit the Baltimore Aquarium while they were up here).  It was really nice to see some familiar faces and have lunch and chat with friends!!

Soon after, it was time for Ava to nap - or so we thought.  She wasn't able to sleep, so she watched a movie and rested with the extender bar in for a while and I ran a few errands and got some phone calls made to arrange PT when we get home at CHKD.  I was waiting for a call back while sitting in the atrium area at the hospital and totally fell asleep sitting up, with my head back, & my mouth hanging open.  It only lasted about 5 minutes, but I probably looked crazy!!!

Ava played games with Amber and Mimi today and seemed to have fun doing that.

Today was the first day we did the shower/pin care routine by ourselves (without a nurse or OT helping) and it was not fun.  We survived, but not without a few tears....this time all Ava's, although when she said, "Just LOOKING at them scares me SO MUCH, Mommy!", I was so sad for her.  To be completely frank, when all the sponges are off and the wounds are visible, it scares the shit out of me, too.  At least two or three are still seeping, the old sponges have blood on them (dried and fresh) and I see tissue around the holes.  There are also abrasions and punctures around some of the pin sites that I wasn't really prepared for.  I'm assuming they are from whatever tools they used to drill the pins into the bone.  She is also bruised all the way from her incision down and around her labia and upper thigh crease.  It's turned to a greenish color today, finally, after being black and blue and purple...but she's still all swollen on that side and her undies are too tight to really wear comfortably.

So, the anxiety around showering and pin care for her is about an 8 on the pain scale.  Not that she's feeling that much pain, but her mind is perceiving it because the wounds look so bad to her.  It's so foreign and terrible for a little kid to see such a massively huge metal structure drilled into them and the bruising/swelling/bleeding/open wounds.  She cried pretty much through the whole entire thing, from taking the sponges off (about 10 of the 15 of them we took off before the shower - the ones that are not sitting up against her skin) to sitting on the bench in the shower, to putting the water on her skin and then closer and closer to the sponges and then to getting the closest-to-the-sponges off.  The bottom two were very sticky - the dried blood and guck made the sponges stick and peeling them off made my stomach do flip-flops.  Then I had to use a long sterile q-tip and/or some gauze with saline on it to get the little pieces of bloody sponge stuck on the pins.  Blech.  At that point, we had covered the ex fix with a towel so that Ava couldn't see what I was doing.  When she wasn't looking, she was pretty calm.  As she looked, she freaked out more and more.  I think she is so nervous that what we are doing is going to hurt that she can't separate that from the actual feeling itself.  :/  She even put on her little sleep mask that my mom got her for a little while to try to 'block it out'.

We got the new sponges back on (slowly!) and got her back in her chair and it was time for her medicine again.  She started feeling a bit sick to her stomach, and I thought it was just nerves.  By that time, it was dinner and we went down to get some pizza that had been delivered for all of the HP House residents.  After that, Ava started feeling even more nauseous and complained about her tummy hurting so we went up to see if maybe she needed to go to the bathroom.  Meanwhile, another little boy who is also 8yo and having the ex fix surgery tomorrow came to visit!  His mom and I have been communicating on Facebook and since they are just starting their surgical journey tomorrow, I thought it might be nice for us to meet and for him to see Ava - he also got to see DJ, which was nice.  I shared a bit of our journey with them - our hospital stay do's and don'ts as well as just general 'you can do it' pep talks as they get ready for tomorrow's big day. It does not seem like it's been 7 days since surgery day for us for sure.  But my body definitely feels it.  My back is aching in multiple places from lifting Ava and from all the kneeling on the floor to support her leg or help her walk.  Ava didn't feel like talking much, so she came up to the room with Amber and mom while I chatted with Cooper's family.

When I got back to the room, Amber had given Ava one of the Ativan's (which is an anti-anxiety med, but also helps with nausea) and it REALLY seemed to make a HUGE difference.  I don't know if it was just given at the right time or if that is going to be a good thing for us to do for her.  I saw the biggest smiles I've seen yet tonight and she was super relaxed and cooperative for her stretches and extender bar replacement at bedtime.  I told her that if she took her medicine easily tonight, I wouldn't wake her up overnight and we would just take it again in the morning when she wakes up.  She was VERY excited about being able to sleep all night - and I honestly can't wait to get to bed myself knowing that I don't have to set any alarms and I can just sleep through the night.  Woo hoo!

Here she is laying in bed with her altered pajamas (I did not anticipate how BIG this thing would be on her - we are going to have to do more adjusting to things to make them work, I think! But you can get the idea.  The blue thing in the middle is a cold pack she had put on because of a muscle spasm.

She gave me the biggest hugs tonight at bedtime and I think I needed that more than she did.  It's been a crazy tough week, for both of us, and I never imagined I would be strong enough for this.  Wouldn't wish it on my worst enemy, but it feels like we may finally be on the up swing.  Exhale.

Night, all.

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!!!  :)

Day 5: Post Op

So, our first full night and day completely off the epidural was rough.  I think Ava is tolerating the oxycontin well, (if anything it's a little high and she's a bit sleepier than we want her to be) but Ryan reported that she was up in the middle of the night having to go to the bathroom, so she didn't rest as well as we had hoped.  Navigating the toilet is a whole new situation.  Last night, they put her on the bedpan at 3am-ish and she was on it for an hour and a half!!!  Ryan stayed overnight - I probably wouldn't have let her stay there that long - but it's a risk vs. reward type thing with her.  Because moving her on and off anything is a struggle.  So, getting her off the bedpan and then back onto it when she decided she had to go again in 15 minutes probably wouldn't be worth it either.  :/  Anyway, she woke up tired and grumpy again this morning.  Complaining of a stomachache, headache, the works. We aren't sure where the headaches are coming from, but they are off and on all day now.  She is refusing to take her medicine without a fight now, too.  Pretty much all of it.  Which is really frustrating because the oxycontin she HAS to have and the valium is really helpful for muscle spasms (she HATES the taste of that one), and there is another stool softener she really needs to have, but also says tastes awful.  ($395 is what it cost me to fill all of those prescriptions tonight for when we leave the hospital tomorrow.  Gulp)

So, I arrived at the hospital to find Ryan completely frazzled and frustrated and he and the nurse both trying to get her to take the oxy.  Not a good start to the day.  She finally took it, but was grumpy for quite a while - napped for a bit and totally ignored PT when he came in to work with her.

My mom arrived for a visit and I really thought that would perk Ava up a lot.  But alas, no dice.  :/  We got her to take the valium, but it did not help for PT, unfortunately.  She had to get up for the bathroom, so we just got her in the chair and then PT came back and he took her to the room down the hall.  

She is convinced that everything she does hurts.  Every movement, every lift, every stretch, every step.  I don't know what happened to the girl yesterday who wanted to walk again and who did so well.  Today, that girl was gone and in her place was a complete mess - whining, crying, yelling out, rude and general grump.  I admit to getting frustrated and yelling at her a few times.  I think we are all feeling the stress right now.  I am sure that getting out of the hospital tomorrow will help, but I am a bit worried about doing this on my own soon.  Ryan left this afternoon to go back home, spend some time with Carter and go back to work tomorrow.  My mom heads back tomorrow and Amber leaves on Wednesday.  Right now it takes at least two of us to get her in and out of bed, in and out of the wheelchair, and on and off the toilet.  That is a lot for me to do if she is fighting me and not cooperating and lifting herself at all and all that.  She isn't really getting the fact that SHE has to do this and that nobody can do it for her.

The good news of the day is that we got completely off the pole - no more IV anything.  They took out the port in her hand, so that is one less thing she can complain about!  And we don't have to take the pole everywhere (what a pain!) and the nurses don't have to take her vitals as often.

I could write a novel about how amazing it has been for my sister to be here.  I don't know what the frick I was thinking when I thought I could do this myself.  And I didn't really realize how much I didn't know about....well, everything.  What is normal, what is typical, how many cc's or ml's of what is needed for which thing and what NEEDS to happen vs. what someone in the hospital thinks would be easier for them.  I will write later about the pharmacy debacle, but let's just say that Amber showed me tonight that it's definitely not who you know....it's WHAT you KNOW!  She kicks some serious ass - and I am pretty sure that those who work with her probably don't mess with her.   (For those of you who don't know, she's a clinical pharmacist in a hospital where she lives in Georgia, works in oncology with chemo, bone marrow & stem cell treatments.  Yup, she's the smartest of the bunch.)  We have always been healthy.  Nobody in our family even gets fevers or has had anything more than a common cold for a few days.  We've never been in the hospital for anything (except me having my routine two chidbirths) and so this is all completely foreign territory for me.  I.had.no.idea.

Putting the extender bar back in every night has so far been a huge struggle for all of us.  We tried to do it for the first time by ourselves last night and ended up having to call Dr. Standard's residents to come help us.  Tonight, it was a huge struggle just because Ava wouldn't get her body into the right position for it.  She has to lay nearly flat, bend her left (good) knee up and relax her body for me to screw it in position.  She was not cooperating and it took at least 15 minutes with Amber, mom and I all trying to convince her to get into the right position.

Ugh.  I just cannot fight with her about all this stuff for 4 months.  I'm definitely starting to feel overwhelmed and frustrated.  Tonight, I feel more like I did the morning of surgery.  Like I could burst into tears at any moment.  Not sure if it's the fact that we've been here 5 days now, my back hurting from all the bending over/sitting on the floor, not sleeping well/enough, etc. or if I just am starting to see more of Ava's strong-willed personality than anything else.  I was super patient with her when she was in pain and we were trying to figure everything out together.  Now that it's just simply her refusing to participate and being obstinate, I have much less patience and understanding for that.  

I am off to bed now (on the hospital pull out.  She's completely out and hasn't moved a muscle in about an hour and a half since falling asleep.  They will wake her at 1 and 5 for her meds, so we'll see how that goes.  Pray for patience (for me!) and cooperation (for her) tomorrow.  We NEED a good day!!