Many of you know that our next surgery is going to be on Laelia’s knees. Well now it looks like we are officially scheduled for it, and it will happen earlier than we first anticipated. It’s now February 1st with a follow up in early March.
So if you missed it: Knee surgery is FEBRUARY 1st! Yeah I know! We pack up to leave just a few weeks after Christmas! (Just breathe.)
This surgery is going to be much harder than her last one (which was cake). I want to explain it clearly so you all know what’s coming. I’m even open to questions. Just from writing this post I thought of a few myself and have emailed Laelia’s doctor.
But first, why this surgery? Laelia was born with arthrogryposis (joint contractures making her joints stuck). Her knees came out of the womb in flextion (meaning bent, opposite of extension, meaning straight) and bloody from rubbing against my internal organs for months of my pregnancy. We’ve stretched them for four years, casted them and put them in stretching KAFOs. We did a pretty good job too. She was born so bent that her feet touched her thighs and now she’s pretty straight. If her legs had stayed as bent as they were without all our intervention we would have put Laelia in external fixators. (And I know families who have done extensive therapy on the knees and still had to do that option.) (And yes that link for external fixators is just a Google search. 
) But because she’s now at less than 40 degrees of flextion in both knees (closer to 25 actually!), she instead will get (I don’t yet know how many) releases and then two eight plates inserted for each knee. These plates will stay in and encourage her legs to grow straight over time. It’s a process called “guided growth,” and it’s shown specifically to help kids with neuromuscular conditions like Laelia’s arthrogryposis.
The plates are drilled into the bone to be removed at a later date. We just got her hip pins out and now she gets more hardware in her bones! Yippie hurray (sarcasm).
The surgery is five hours long. She’ll be in full casts for a month followed by full leg braces to be worn 24/7 for a few weeks after that. There will be hard daily therapy in there too. That’s about six weeks of HARD (“hard” being a noun here). Six weeks of struggle and adjustment. She’ll be out of school for over half of that. Around mid March or early April she should be pain/discomfort free depending on the braces.
This is the surgery she was going to have around her next (fifth) birthday in October. Because it’s now in February this most likely means she will not have a surgery next year on or around her birthday for the first time in her life! She can actually age without consequence this next year!
With another surgery looming and the last one so fresh in our child’s mind we’ve had a few long conversations about surgery. It is always amazing to me to hear Laelia’s own perspective on something. For example I know she hates having her blood pressure taken. She says, “I don’t like when the cuff hugs my arm.” So every time they get the darn blood pressure cuff out (which is a stinkin’ lot after surgery!) she starts to cry and then she requires I hold her hand. Well she started talking about the time they took her blood pressure twice. I remember this–I was there, but my version of it is so different it’s funny. A nurse came in and wanted Laelia’s insurance card so she could go pick up our medicine for us (which was really sweet of her). I let go of Laelia’s hand in the confusion and didn’t realize that the cuff had not worked and they had to do it again. In the time it took me to walk to my purse and fish around for the card, they had already taken her blood pressure again. Laelia was fine and I wouldn’t have known it happened except for the nurse told me. Since blood pressure cuffs don’t terrify *me* and since it was already over and she was fine I assumed it was no big deal. But even though it was pain free and I was two feet away, Laelia tells a story of triumphant bravery in the face of extreme torture all alone and abandoned. It’s pretty adorable when her eyes light up and she says, “And Mommy goed away! And they did it again! Again! And the cuff was lower on my arm. And I was a big brave girl! And I was all by myself. And Mommy didn’t hold my hand!” I couldn’t help but squeeze and kiss her over and over as she told her story. Mama’s big brave girl got ice cream.
Well we don’t bring up surgery with our daughter for fun, but because I want Laelia to have a voice in decisions about herself. Of course I always hope her decisions agree with mine and are therefore the “right” decisions. But after Laelia voiced her preference loud and clear we have decided not to give her sleepy juice for her next surgery. They give this to children (orally) to calm them down before the anesthesiologist carries them away from their parents. It makes them loopy and giggly and fearless. Sometimes I joke that it’s just pediatric whiskey. But without it Laelia may be terrified going back for surgery without me. But giving her a choice in this matter may also empower her to feel in control and get through recovery better. The sleepy juice is not necessary or mandatory, but just a good idea. But Laelia doesn’t take medicine well and it’s often forced down her throat. So Laelia asked me in a very mature way not to have to do it again. She explained how brave she is now after the blood pressure ordeal. I’ve explained the consequences of this choice, but she’s unwavering. It makes me very nervous.
Plus I’ll miss that little drunkard!
I have this list of things I would love if people prayed for regarding Laelia’s next surgery.
1. That Mommy can keep it together. We just did surgery (whine). Now we’re looking at two more trips to Philly and a hard surgery before our timeline. Ugggggggggggggggggh. She’s just now taking regular baths after her last surgery! She’s still in bandages! Don’t I get some sort of tropical vacation between surgeries? I remember that in the Mommy handbook somewhere…
2. That Laelia is once again first up for surgery that day instead of waiting and freaking out all day. (It all depends on the ages of the other children getting surgery that day. If Laelia is the youngest she’ll go first. If not then she may freak out all afternoon.)
3. That she can remain calm without her sleepy juice while carried through the double doors into surgery.
4. Pain management. Oh please oh please. And on a personal note for my marriage during pain difficulties. Laelia’s pain has a way of tearing at her parents’ hearts and making emotions raw. I think Charles would claw out his own eyes rather than let his daughter feel pain, even if it’s necessary and part of her therapy routine.
5. Casts–swelling, itching, painful, heavy, skin breakdown, fear of them slipping, pulling her legs, etc. A month of casts, followed by…
6. Leg braces worn 24/7 for weeks. This may be harder than casts, and I know she’ll beg us to remove them constantly. This is when life will get really hard. Also we live 3,000 miles away from the people making and adjusting the braces. So I hope they are done correctly the first time. And that will be a first and is unlikely.
7. Rest.
8. Peace. She’ll be scared.
9. Travel mercies. It’s two or three airplanes one way, and takes all day. Flying with a post-op child on pain meds is the worst.
10. Travel expenses. (Surgery itself will be covered by Shriners.)
11. And lastly, although it should be more important but it’s against my policy of living day to day, I ask that this surgery be successful. That her future walking is helped by this surgery. We’ve had a couple unnecessary surgeries before finding this surgeon that I’m still upset about. But I trust this guy. But just because it’s the best surgery from the best surgeon doesn’t guarantee success. I hope this helps her one day walk easily and without assistance. Although I realize that may never happen. I just pray it is the best for her.
Thanks so much!
