Day 4: Post Op

Today was the day I had feared would not go well.  It was the 'transition day' - the one where they would take Ava off the epidural and transition onto oral pain medication.  It can go well or it can be hell - and the first nurse we had on surgery day in the peds unit scared the crap outta both myself and Ava about it.  I really was annoyed with her because I didn't need her putting ideas in Ava's head about how 'hard' it was going to be to get up and walk or to get off the epidural when we first got to the room after surgery!!

Honestly, I wondered yesterday how much better Ava might actually do without the epidural because she would be able to move herself so much more.  Thus, she is in CONTROL.  And if there's one thing the women in my family like, it's to be in control - it's just genetic.  Lol!

Amber and I slept at the hotel last night after Amber had a stern talk with the pediatric resident and the night nurse.  She basically had to hand-hold them into a schedule where the meds/vitals/pump changes all happened at the same schedule overnight so there were minimal times that Ava had to be awake. We left with a good plan to wake her at 11pm for vitals and meds, change the pump around 3-4am and then do vitals and meds again at 5-ish.  I woke at 7:30am, texted Ryan to see how the night had gone. He said Ava had woken up around 3:30am complaining of an upset tummy and was up every so often after that, so they gave her Zofran at 4am.  (TMI alert:) I didn't think that was a great idea, because I was 100% sure that the tummy issue she had been having all day and into the night was totally based on the fact that she hasn't had a bowel movement since the day (or two) before surgery.  That means we are on day 4 or even day 5 of constipation, which is not good for her.  She's had constipation issues ever since we potty trained her, and she had been acting the exact same way she usually does when that happens.  The epidural often causes constipation, so it wasn't out of the blue - and the epidural also causes her to not have control of her bowels or bladder (she has a catheter for urine) and they started her on some slow doses of medications to combat that.  But obviously since she hadn't had a movement, she was still constipated and thus the tummy pain.

All that to say that when Amber and I arrived to the hospital this morning, Ava was a hot mess and refusing to take her medications.  She was in excruciating pain from a headache and stomachache and I feared she may throw up the meds again, which was NOT going to be okay.  They cut the epidural in HALF and were trying to get her to take the oxycontin, which is the pain medication that she has to have in order for the epi to be turned off.  It took us 25 minutes to get her to take it.  It was crazy and frustrating - trying to convince her that taking that medicine would take away ALL of her pain.  :/

So, while we were trying to get her to take the meds, PT came in multiple times trying to get her out of bed.  I knew they wanted to try to get to her before they turned off the epi just in case things didn't go well.  So, knowing it would be a struggle, we did the stretches and got her out of bed because the OT said she had to learn to walk to the bathroom and get on and off the toilet, which was very important as they took her off the epi and took out the catheter.  Ava was convinced she couldn't do it - and to be honest, I was a bit skeptical.  The last two times she has tried to stand, it has been a nightmare of tears and screams and she only stood on her feet for less than a minute both times with a lot of help.

Here is the video of the first little bit from the bed toward the bathroom today. (be sure to watch the second video if this one makes you sad!)

She surprised the crap out of us all by actually doing it nearly all on her own from the start. While she is complaining ("Ow! Ooow!), they said to expect that and it's more that the feeling is different rather than really painful.  The ex fix is heavy and awkward and feels weird, but she's not really in as much pain as it looks/sounds.  The OT is behind her supporting her butt just in case she happened to sit down or fall back suddenly.  And because she still had half an epidural running (and really probably had the full thing still in effect because they barely had turned it down) the OT was moving the leg with the ex fix forward because she couldn't lift it.

We got all the way in the bathroom and to the toilet.  She was tired, but it seemed to gain mental strength as she went.  It was almost like, "I CAN do this!"   We learned how to support her leg so she can sit comfortably on the toilet and then she had to walk back out to the wheelchair.  She was not happy about that, but really wanted to sit down, so she did it.  And not only did she do it, she did it virtually all by herself.  Nobody was supporting her weight - I was practicing 'spotting' from the back and moving the heavy leg forward.  But she amazed us by how strong she was and how easily she picked it up.

This video (coming out of the bathroom to get to the chair) shows how far she came from the first video (bed toward bathroom) in just under a half hour.

So, we went back to the playroom once she was settled in her chair again and we did crafts for a while. The oxycodone really helped her - zoned her out for a little bit, which was good after all that PT/OT activity.  We drew, played Guess Who, and she started to perk up a lot!  Then, it was lunchtime.  As a treat, we brought a straw from 7-11 that has a mustache on it.  She thought it was hysterical and for the first time in a couple days, I could see a glimmer of her personality come back.

We have been using the pain scale of 1-10 with her since Thursday.  We found that she couldn't articulate how something hurt (sharp, throbbing, constant, etc.) but she could quantify it with a number pretty well.  She said her headache this morning was at a 6-7 and her tummy a 5 and her leg a 4.  But after the first dose of the oxy, her headache was 'double zero' and her leg was 'triple zero'.  I would say that is a HUGE win!!!  Hooray for oxycontin.  LMAO!  She said, "When I go back to the room, can I walk again?"  Wow!  I was shocked.  Especially after how hard it seemed, but I think she really likes being in control of her movements and being able to get up and walk once she realized that she could do it!!

After lunch, we gave her a sponge bath and washed her hair (with a small tub of water with a cup to pour - not an easy task!) and she drank more of her lemonade with her mustache straw.  :)

At 2pm, they cut off the epidural completely and she got her next dose of the oxy.  We went back to the playroom for a while, but it wasn't long before she said she felt like she needed to go to the bathroom. A first for her so far, but PT/OT weren't there to help us, so we had to figure out how to get her there and support her.  It was really hard - and she doesn't relax easily or quickly, so we had to stay crouched around the toilet supporting her weight and her leg in the same position for a really long time. But it worked!  Which was fantastic because once she got her bowels moving, I think she started to feel a whole lot better.

Right as we were finishing up in the bathroom, someone from anesthesia finally arrived to take the epidural out.  She had been anticipating how awful the removal of all that tape would be, but it wasn't nearly as bad as she thought.  One wire down, two more to go before we can get out of the hospital!!

The next thing to come out was the catheter, which she thought would be awful, too, but didn't end up even hardly feeling it.  Taking the tape off of her leg where the catheter was hooked to was the worst part, by far.

We had a WONDERFUL day nurse today - Madison - we'll be writing a review somewhere for her for sure.  She was very patient and very sweet and accommodating all day.  Ava is a bit high maintenance and she was the first nurse who didn't seem to really be bothered at all by it - she didn't make us feel like it was a huge hassle (even though sometimes she was!).

We spent a little more time in the playroom making bead crafts and then came back for dinner and to get situated in the bed.  Another 'I have to go to the bathroom' request got us a bedside commode, which was nice to not have to get her all the way to the bathroom again - especially overnight.

The evening had a few episodes of pain and discomfort from positioning, needing to pee (trying to lift her and support all those pins and things to get a bedpan under her - and then out - was awful) and then trying to get her to relax to sleep.  Finally around 10pm, she was fairly settled for the night.  They will have to wake her every 4 hours for the pain meds - and we will have to do the same when we leave there.  So I'm not sure how that will go.  Ryan has the night shift again tonight because he is leaving tomorrow to head back home.  He has to be physically at work on Monday for the week.  So, Ava requested he stay overnight again tonight - and she knows that he can lift her and get her to the toilet if needed, which I think made her feel more safe and comfortable.  She was tucked in and sleeping when we left tonight.

Mimi (my mom) is driving up tomorrow to visit for the day and spending the night and will go home on Monday.  Ava is super excited for her to come, I think.

So, today felt like the LONGEST DAY EVER - but not necessarily in a bad way.  I am very encouraged by all her progress and the fact that she tolerated the oxycontin so well physically and mentally and that she found out that she can actually walk with that walker so much better than she thought she could.  Hoping that tomorrow brings more of the same.

They may discharge her tomorrow, but I'm going to push for an extra day in the hospital just for me to feel safe and secure getting her around, in and out of the bed, on and off the toilet, etc. since Ryan has to go back home.  We'll see!

Finally, thank you to everyone for your prayers today.  Obviously, something worked!  :)