Today is surgery number...wait, let me count them...11.
Sedation number 14.
In some ways, a procedure like this is less nerve wracking as parents than it used to be. Trouble breathing and hospital admission are no longer inevitable. In other ways, it’s more nerve wracking than it used to be. Keira has come to show us that there is so much she understands and in her own way, she is a better communicator. That means she has the ability to understand in advance, to some degree, what is going to happen and in return feel anxious about it. It’s when she gets really upset that we are reminded like a punch in the gut how fragile she really is.
Bless her heart. This is how our morning went.
4:50 am: We wake her up and change her diaper. She gets to stay in her PJs. No food or drink allowed, so thank goodness it’s far too early for her normal breakfast anyhow. We load her up in the car. I cover her with an 8 lb weighted blanket, given to us by a friend, hoping this will help sooth her. There’s pretty much only one reason she ever gets into the car when it’s still dark.
5:10 am: We check into the hospital and find a seat in the waiting room. Dad is here to make Keira smile. We get a well-timed note from a friend, who’s little girl, Annie, loves Keira. She wants to come over sometime soon to read stories to Keira, who smiles when mention Annie’s name.
6:45 am: We are finished with pre-registration and sent downstairs to pre-op waiting. The staff there is very familiar. We take a seat and Keira starts to look worried. Her mouth curls up a bit like she has a bad taste in her mouth. She looks as if she would wrinkle her nose if she could. Her tongue retracts and her breathing gets loud.
6:50 am: Called into pre-op, where K gets her own room. As we set her on the bed, she acts panicked. This is a reflex she’s maintained from infancy, spreading her arms and legs as if she’s falling. After vitals, she calms down and seems to like the nurse. She cuddles up in the warm blankets and soaked up the compliments on her hair, her nails, her glasses. We change her into the familiar gown; the purple one with dogs and cats on it. K still looks concerned, but she’s relatively relaxed and smiles as each doctor and nurse comes through in turn. We learn from the physiatrist that there’s new Botox research showing some negative long term effects on muscles treated with Botox. We decide to go with our usual mode of operation and treat today’s discomfort rather than worrying too far into the future.
7:30 am: 2 nurses come to take her back to the OR. Unfortunately, they are wearing their surgical caps, but fortunately the sight of them doesn’t make Keira panic like they have in the past. They bring an anesthesia mask that’s been rubbed with grape chapstick to make it smell good. The nurse fetched some Frozen stickers to decorate it. Jeff and I give her one last kiss and away she goes. We’ve stripped her of her glasses and hearing aids and I realize that this is the first time I’ve failed to remember to bring “Lovey,” the stuffed monkey. No matter. She seems like a pro, headed down that hallway without any visible protest.
7:35 am: Breakfast. A quick date in the cafeteria before going back to the waiting area so as not to miss the reports from the docs as they finish with her.
8:00 am: I’m texting friends and making lists. I start this post. I flip through Vanity Fair and remember that I’d like to go see Joker.
8:15 am: The audiologist has good news/bad news. Keira’s right ear continues to hold steady. Bad news is that so does the left ear, which continues to show profound loss. We may not even bother with the left hearing aid anymore, as it’s not helping much and emits lots of feedback. Note to self: Keep appointment with audiology to make new ear mold and schedule an ENT appointment to resume talks about cochlear implantation.
8:20 am: A lovely friend has offered to bring pizza for dinner and I gladly accept. A fellow waiting-room waiter talks too loudly about how she’s thinking of spending her extra several thousand dollars a month. She’s interested in ministry. The Hall Family is an excellent ministry, I think to myself.
8:30 am: The physiatrist steps in to tell us that all of the Botox shots went in well. Biceps, thumbs, lower legs, and toes. Note to self: keep next week’s appointment to refill Baclofen pump.
8:45 am: I send an email off to the Idaho Perinatal Project, inquiring about opportunities for providing CMV education at their upcoming conference. Jeff intermittently shows me dumb jokes on Reddit.
9:00 am: The orthopedic doctor says all went well. He gave her a block, similar to an epidural, that will keep her numb for much of the day. There were no issues with anesthesia or oxygenation during the procedures. Note: No baths or swimming for 2 weeks. Schedule 2 week follow-up.
9:30 am: Facebook. Angry Birds. Coffee. We finally get called to go see her.
9:40 am: Her eyes are already open when we go back and she slowly gives us a half smile. She’s very drowsy and pale, but her vitals are good.
Nurse: Would you like me to give her some Hi-cet?
Me: No, she had a block, I don’t think she needs it. Can you give her Tylenol?
Nurse: No, we only have Hi-cet.
She gets an order and brings us Tylenol. Keira’s mouth seems uncomfortable. Probably a sore throat from the tube they put down it in surgery. We feed her drops of water. Her stomach also seems a little uneasy, so they give her more Zofran. After learning about Keira’s surgery, Annie has sent her a little video greeting. I show it to K and get a half smile. She’s waking up great so it’s not long before we’re getting her dressed.
10:30 am: We are on our way home! I text the boys that their sister is in good shape. I had told them, “We’ll be gone when you wake in the morning, but if all goes well we’ll be back before you get home from school. If we aren’t home, it’s because K isn’t managing the pain well, or the medicines, or she’s not breathing well, and if that’s the case we’ll make plans.” Business as usual, and they had both declined for me to call them at school with an update.
11:00 am: She smiles as we pull into the driveway. She giggles when Grandma asks if she wants to snuggle. It’s not long before they are cuddled up in bed and I get to go take a nap.
3:00 pm: We send a picture off to Annie. Keira overseers the writing of this post, and the boys get home from school.
All is well and it couldn’t have really gone better. I suppose Jeff and I have a little PTSD from the past experiences. We were ready for ANYTHING.
Honestly and weirdly, I have the tiniest bit of something resembling disappointment. (What is that feeling called?) Because I was geared up and ready for sh** to hit the fan. Of course, we wouldn’t have it any other way. Jeff and I will take the rest of the day to decompress and relax. Thankfully, today is another day that Keira is showing us some amazing strength and resilience.
We are thankful to all the friends and family who rally around us during these repeated experiences. Today, we are particularly thankful for one special little girl who has gone out of her way to be Keira’s friend. Annie, you may never know how priceless it was, on today of all days, for Keira to be contacted in such a “normal” way by a friend. We love you!