Day 2: Post Op

So, our first day post op was definitely a roller coaster.  Ava had a hard time getting comfortable and falling alseep last night - I did everything I could think of to help - we played music, had her noisemaker on, I used lavender essential oils, rubbed her forehead, and so on.  She usually falls asleep on her side, and that is obviously not possible at this point, so she just kept saying, "I'll never be able to sleep!"  :(

The nurse came in at 11pm for her vitals check and Ava had been dozing (finally) for about 20 minutes. She said that she would see me again at 4am for vitals and blood draw.  I said, "Excuse me?  You guys wake these kids up the day after surgery at 4am to draw their blood?  That is standard??"  I tried to remain calm, but had been up since 5am and the whole day of surgery and everything just caught up to me.  She explained that the doctors like to have the bloodwork taken early so it's ready for them when they arrive in the morning.  I said, "I think that's crazy.  If she's asleep, I do not want you waking her up to stick her for blood. She's barely able to get comfortable as it is." I didn't mean to get all 'Mama Bear' on them, but if she finally fell asleep at 11pm and happened to sleep comfortably and they came in to wake her for a blood draw, thus starting our day off poorly, I was not going to be happy.  I told the nurse that she generally wakes up around 6am and could it wait until then.  She was okay with that.

So, I got myself somewhat set up in the recliner next to Ava's bed and she fell asleep as soon as they left the room and only briefly woke maybe once or twice before 6am!  And when she did wake in the morning, she was happy and chatty for the first time since we got here.  She chatted with the nurses when they came in for her vitals and blood draw, she enjoyed her new Diary of a Wimpy Kid Journal that I got her and we ordered her breakfast and she did a good job eating.

We watched a movie and played games until the PT/OT (physical therapist & occupational therapist) arrived around 10:15.  She had been talking about getting out of bed since yesterday, but the process of doing so was not easy. Trying to get her up and standing was a struggle.  Her epidural is still working, but she can move her legs, so they like to get them up and mobile the day after surgery.

The rod (seen in the following pictures) is left in when she is sleeping and a few hours during the day. When it is in, the hip is 'locked' in the right place for optimal healing.  When it is out, the hip can flex and move (to sit up or walk).  So, the first step for us was to take out that extension bar.

Then, the PT/OT moved her to the edge of the bed and off the side.  She was not pleased and once standing, they really wanted her to move her feet while holding onto the walker to get closer to the wheelchair.  She didn't think she could do it and was pretty upset and tearful through the process.  :(

Her displeasure was evident once they finally got her settled in the chair.  Ah, my expressive child. 

But that displeasure QUICKLY changed to happiness when we wheeled her down to the playroom to do crafts!

I ordered her lunch at 12:10pm so that it would be in the room when she got back from the playroom. The nurse said that the therapist likes to start getting the kids back in their beds between 1-2pm, so I figured that with the 45min it takes to get the food, that would be about perfect.  We also decided that Ava probably needed something to calm her nerves and help her relax to get back IN bed with the PT/OT. They kind of want her to try to walk a bit before getting in bed.  She isn't in pain because she has the epidural, but her whole body was tense during the transfer out of bed.  She said it hurt, but it could be just that she was anticipating pain.  Since she tends to be an anxious personality in general, Amber (my sister who is a pharmacist) recommended we ask for something to help her stay calm for the transfer back to bed.  While we waited for lunch, we played games.  But lunch didn't come...and didn't come.

Unfortunately, by 1:35, her lunch had still not arrived.  She was really upset and hungry and watching the clock (as usual!).  She finally got her lunch a little before 2pm and they gave her some Ativan to relax her.

We had explained to the nurse that we wanted the Ativan to help relax her for the PT transfer back to the bed, but apparently she didn't ever call PT to come help Ava back.  So, she sat in the wheelchair for quite a while and started to get really tired and cranky.  She complained that she was tired and really 'just wanted to sleep'.  Finally, Amber went out and asked them to call the therapist so that we could get her in bed ASAP.  She came in shortly thereafter, about 3:15, saying that she didn't know that they had given her the meds for transfer - nobody had called her to tell her we wanted to get back in bed.  But by this time Ava was losing her sh*# a little bit. Overtired, perhaps overstimulated, and the Ativan that had been in her system a bit more than an hour was making her even more tired and not doing what we had wanted it to.  I really wanted her to be calm and learn that it doesn't hurt, it's just different with the extra weight and feeling of strangeness.  But she was just crying that she wanted to sleep. :(  Broke my heart and made me a bit mad at the same time.  I really was trying to keep things positive for her first time out of bed and it turned into a hot mess.

I don't have any pictures of her getting back into bed or the stretches and re-application of the extender bar because she was pretty uncomfortable and upset and I was helping to keep her calm and distracted. She toughed through the stretches and we got her settled and she dozed for a very short 15 or so minutes.

Ava has never been a still, calm, or relaxed person.  Even as a baby - so we knew that she may have trouble with this immobilization part.  She's also never been sick or injured really.  So we had no idea what to expect.  Tonight about 5pm, she was in significant pain.  She really cried in pain for about 10-15 minutes.  The site where the tenotomies were done seemed to be the worst, but she also was complaining of pain in her leg around the pin sites.  It was hard to watch her in so much pain. The nurse gave her some pain meds and muscle relaxers to help but it took just a bit for everything to kick in.

6:50pm UPDATE:  We had a little scare thinking that maybe her epidural had come out.  :(   She started freaking out and really screaming in pain.  The nurse gave her a big dose of narcotic to try to stop the pain and rolled her to the side to check her epidural catheter.  It was so uncomfortable for Ava and hard to watch.  They thought it looked 'wet', which could mean it slipped out of place, so she called the anesthesiologist.  Luckily, it was the same one from the surgery yesterday who is very experienced and very kind.  He rolled her and said it looks okay and that he taped it up 'really good and secure' yesterday, so doesn't think it could slip.  Hallelujah!  It would be awful to transition her to oral meds tonight - she really needs another day or two of the epi.  So, he doesn't know if she is building a small tolerance to the meds or if it has shifted position a bit or what.  But he gave her a bolus and turned it up a bit to be sure she's comfortable for now.

She said, "This is the worst night of my life" in the most pitiful, teary voice.  It killed me.  I hate that she has to endure any of this.  :(