Wednesday, May 27, 2015
Wake Up and Be Different!
I feel like I should apologize, but snuggling and getting Bryer back to her happy self (and kindergarten graduation, the end of school, and a birthday in our family) has taken priority. Sorry I've been hogging it all and soaking it up myself!
Bryer is 2 weeks post-op today, so here's the update of our 'Wake Up and Be Different' inspiration...
I was so hoping she wouldn't be awake yet in recovery when they came to get me to see her after her surgery. I wanted one more picture of her sleeping before she woke up different. Here she is in all her sweetness - complete with Barbie (thank you Joanne)!
Her eyes fluttered a little, so they called that good enough and wheeled her to her own PICU room. Seeing her little body in such a big hospital bed brought back some sad memories, but this time I knew it was going to be good - no, great!
Who wants to wake up to a red light in their face? (Or nurses taking vitals and poking at her?) Note to all my nurse friends - I am sure that you don't do this to your patients! Right?! I am sure that you use their toe, which is so much easier for movement, isn't a light in the face all night, and does just as good of job. (Of course, maybe I'm wrong and it just had to be on the finger of her good hand and no other place would do.)
After a good few hours post-surgery, she finally (kind of) woke up. I was so happy to be the one in her face for her to see when her eyelids finally lifted! Good morning beautiful girl!
She came out with pink casts with only her little piggies sticking out. (No polish allowed in the Operating Room - they have to be able to test her color and oxygen.)
The first 24 hours was REEEEALLY rough. Anyone else have pains with their Wake Up and Be Different goals? Bryer was really feeling it!
This is the pesky little 'Q Ball,' that was supposed to be administering pain meds through a catheter in her hip, straight to the most painful site.
After her screaming in pain - and nearly 24 hour post op, I started checking out the Q Ball for myself. It didn't seem to be getting any smaller, but the nurses assured me that they've never had a problem with them in the 5 years they've been using them. I decided to take it up with the doctor. Seeing Bryer in so much pain was unbearable. Jason even had to leave for a bit, it was too much for him to watch.
It turns out that mother's intuition is right - the meds were not being administered via this contraption. After they figured out a combo of other pain meds, she started to feel like Waking Up Different was worth it. (Hopefully by this point in May you are also feeling like your goal is worth it!)
Heavenly Father knew we needed to feel Him close by, in real life, something very tangible. By this point I was thinking, "What have I put my sweet little girl through?!" God sent real, live angels with dinner for the first 3 nights - the most critical nights that we needed to be right in Bryer's room with her.
I was especially touched by the wives of these med students that are already sacrificing so much, but are willing to do whatever they can to help ease this process for us. It helped that they were followers of the blog, so I felt like they were old friends that understood what we have been through to get to this point. More evidence that God hears us, knows us, and will send help, even when we don't know that what we need is a hot meal to get us through the next night.
By day 3, Bryer was up for listening to music - a perfect sign that our little girl was pulling through the hard part! Here she's listening to one of her favorite people sing on a CD of preschool songs - her speech therapist, Amber. Amber's voice was a lifesaver when it was so painful to move Bryer around, but she was getting so bored laying in bed. The famous and wonderful Dr. Yngve (in blue) was a good sport to pose for a picture with her, along with Dr. Carmichael, the resident doctor (in red).
By the 3rd day, she was happy, on minimal pain meds, and we made a trip to the hospital toy room!
While we played, she reached out with her left arm to put a ball onto a track. She reached out her left arm further than she ever has before - and then jerked it back, immediately realizing that she did something that felt different. It didn't take the same amount of effort to reach as far as she did!
More exciting positions - unless I have her sitting on my lap (pre surgery) with her legs flopped out to the side, her legs like to squeeze together.
The staff and med students from the hospital were amazing!
After some minor worry on my part that the outfits I had tried so hard to find, wouldn't fit over her bulky brace, Jason went dress shopping so we could say our good-byes. Here's her limited wardrobe for the next few months.
2 more days in a hotel until she was clear to fly... And more tricks while we hung out in Houston! She can fold her arms! Before surgery, her arms were too tight to reach very far across her body. Lots of good brain connections are made when she crosses midline, so we're excited for her to have arms that can relax!
One of the funniest new tricks is that she is moving her right arm around more now - and that she finds it stuck in her hair now. She tells us, "Uh-OH! Hair!" Simple miracles really, like getting your right hand stuck. Who knew that could be so exciting?!
Finally the flight home... Which was an adventure all by itself!
What I really needed a picture of was Bryer in full brace and casts, riding on my lap in the wheelchair, with Jason, our 6' 7" escort flying us through the airports with wind blowing through our hair, trying to make the next flight. A few times I thought for sure the footplates on the wheelchair were going to cram some lady's ankles as he screeched to slow down, and then speed around her. We made it though, with Bryer and I laughing the whole way and Jason broke a sweat by the end.
Since we've been home....
We've gotten creative with making her brain work to learn her new body. Since we can only deal with her arms for right now, we're trying some new things to help her become more aware of her right side. With it being loose, now we can make it work without it tightening up so fast. It used to be that the harder she concentrated, the tighter her right hand and arm got.
I have been putting an oven mitt on her left hand every day. We started with 30 minutes and are up to 45 minutes now. At first she didn't like it at all, but now even when the timer beeps and she knows it's time to take it off, she wants to leave it on. She has learned to turn pages of her board books, reach out to touch objects, and do some beginning actions to songs with her right hand!
One night the kids were having a movie night and I caught her with her right hand in the bowl of popcorn! Another night, she had tipped over in her brace on the couch, and used her right arm to prop herself up so she didn't go completely over! All simple steps, but things that will lead to essential brain connections, and all things she didn't do with her right side before!
This week we had to go to have her brace altered a little bit. It was the first time she'd been out of it since surgery. I couldn't believe how floppy she felt! Her legs feel like jell-o. The re-set button has been pushed, and she's ready to train her brain with some new connections! (Jugging fish oil for brain food, using essential oils, and taking magnesium for muscles)
Through it all, I have been so touched to hear how you all are doing with your Wake Up and Be Different Goals too! We have loved the phone calls, texts,visitors, thoughts, and prayers. I will try to stay more on top of the blog as she progresses.
She will get her pink casts off in 2 weeks and be fitted for afo's (foot braces) and can start putting some weight through her feet. That part may be hard with her hips set so wide with her brace. The brace will stay on 24/7 until Aug. We are getting good practice with wet washcloths to be sure she's not the stinky kid! :-)
One more thing... I'm looking for those of you with pictures in your Wake Up and Be Different shirts - or those of you that set a goal, I'd love a picture of you in action, working your goal. I'm putting together something for this coming week! If you haven't already, email your picture to firstname.lastname@example.org or share them on The Briar Effect Facebook page, or tag me in them if we are already friends.