Baby K and the Hot Pink Spica

That's her band name and they sing a dance hit that goes, "bump up the Valium, bump up the Valium, bump up the Valium. Dance. Dance." 

Get it? Ha! I crack my stir crazy self up! 

Actually I'm not too bad currently. I took a break and went and got a brief massage of my neck and shoulders. Then I went to the Carters store to get a couple of new things for Keira. I hope buying shirts and skirts 2 sizes too big is enough to fit over her cast. Otherwise, she's going to go through the next 6 weeks wearing only a hot pink bodysuit. Fashion for the likes of Lady Gaga. 

When I got back from my little outing, Keira was asleep listening to Bruce Springsteen on Grandpa's phone. Nice. She knows what's good. 

Let me backup. We got here at 5:30 on Monday morning. The surgery went well. They only had to do 2 of the 4 possible procedures: the bilateral hip osteotomy and the hip adductor lengthening. They did not need to do the hamstring lengthening or the hip socket reconstruction (I forget the fancy name for that one). They essentially cut off the top of her femurs and fastened them into the hip sockets at a 45-ish degree angle. This will hopefully prevent future pain and allow her to bear weight on her feet, even if she never walks. 

Due in large part to our concerns, the anesthesiologist used an epidural block for pain and left it in until this morning, hoping this would decrease the need for narcotic drugs. They also put her on the PICU, largely because we requested it, and that has helped put us at ease. We feel like we know many of the staff here and many of them remember K. 

It's really nerve-racking to be the sole advocate for a person for whom you can't be certain exactly what they need or how they're feeling. Furthermore I am no medical professional, so my understanding of the options are limited.The staff has relied heavily on my intuition. On the upside, this could result in better patient care assuming that I am very into an accurate about what my daughter is feeling. On the other hand, I could be quite wrong, requesting interventions that are unnecessary. 

It's been rocky. It's been very hard to control Keira's pain and she slept very very little until last night, when they "bumped up the Valium," which seemed to help. 

She doesn't seem any worse without the epidural. And she's less fragile because we aren't worried about messing with her epidural line that is so small it's like a hair. 

I love the doctor on the unit here. He's very compassionate and candid. Today he visited and basically admitted that they had screwed up because they had been trying too hard. They were being so careful, kid-gloving everything based on her history, that they'd missed the mark. He said the answer is likely as straightforward as treating her like s typical kid and increasing her med dosages. He said it's like they were all working off of old wives tales. 

Once again, we're so thankful for Keira's fan club. Everyone's kind words and gestures are so helpful. K's therapists have all checked on her, too. Yesterday, her feeding therapist came and brought her a Kermit doll. Keira clearly recognized the therapist but gave her a crystal clear "no" face. Like, "you've gotta be nuts if you think I'm doing any work right now!" 

The boys are staying with Jeff's folks and are having a good week. Ronin told his grandma, "I want Keira to get better, but not for 11 days." He loves being at their house! 

I anticipate that we'll be here a few more days. We have to be confident that we can manage K's pain at home. 

Speaking of Death

I've found myself thinking about death a lot lately. We get a great snapshot of Keira and I can't help but think, "This is the one I would enlarge and put up at her funeral if she were to die soon." Or I find myself imagining not bringing her home after her surgery. Or I think of how it would be a relief to not need a different house...if Keira passed away.

Morbid, right?

They say marriages are seriously put to the test when a couple is raising a disabled or chronically ill child. Jeff and I have felt really lucky and pretty secure in our relationship. We had a disagreement this week that made me think, "This is one of those pivotal discussions. This is where some marriages turn south."

Jeff came home from work and collapsed on the couch. One of the very first things I told him about my day was that one of Keira's "buddies" on Facebook is having uncontrollable seizures and isn't expected to live much longer. Jeff responded by telling me that he didn't think that I should be conversing with these CMV families so much on Facebook anymore. By which he meant, he couldn't handle hearing about what these families are going through.

Initially, this felt pretty insulting. I've laughed and cried with many of these families and, in some ways, they are the only moms that know what this experience of ours is like. However, I do realize that Jeff has to hold it all together so that he can be our family's breadwinner. He has to be able to absorb the stress of a full caseload and managerial duties and it doesn't help to come home to hear about another of Keira's peers who is sick, or hospitalized, or dying. To him, it feels like I'm saying, "This could be Keira." Which, I guess I am, in a way.

I'm not quite sure how to make sense of these thoughts, and it feels a little disjointed to be celebrating Easter Sunday the day before Keira's surgery. However, we had an excellent sermon this morning that's helped me put a couple of pieces together. We were reminded that life comes to an end, but "death loses." We were challenged to think about how we ought to live, if we are not afraid of dying. This reminded me of an important point of view that I hold without even thinking about it most days. I'm not afraid of Keira dying. I could be lying to myself, but I really don't think that I am. I not horribly depressed (most days) or panicky. I'm able to enjoy Keira's happy smiles and encourage her itty bitty baby steps in development.

Jeff pointed out to me not long ago that the things that seem to take up most of my brain space are projects that aren't finished. The task may be very important, like getting Keira through surgery, or not so much, like cleaning out the office so that Liam can have his own room. I tend to perseverate on unfinished stuff until it's finished, which isn't always healthy. It makes the endeavor seem more daunting and weighty than it really is. I want to see resolution. But the problem is, even when something is resolved, there is always something else on the other side. All that to say, it's hard for me to not know how things are going to go for Keira. I don't want any more surprises. Will she outlive Jeff and I? Will she die of pneumonia at age 12? Will she live through this surgery?

You could say that sounds fearful, and I may not disagree. But I believe things will be okay no matter what and I will sleep tonight.

We had a wonderful Easter. Keira enjoyed the nursery at church, then the ruckus of boys doing an Easter egg hunt at Grandma's. She enjoyed eating some of my coconut cream pie and made it quite clear that she prefers the coconut custard layer over the whipped cream layer, thank you very much. She came home and played with her new colorful bell-mobile. Then she and I took a long, relaxing bath (her last for awhile) and I tucked her into bed.

Keira definitely isn't as fragile as she once was, but she also isn't in a place to whether this kind of trauma (bilateral hip surgery) easily. It is still extremely effortful for her to coordinate sucking and swallowing. In fact, she won't take a bottle at all on days that she is more overwhelmed. She's not great at "managing her secretions" (for example, she gags/retches on postnasal drip or excess saliva). Her airway is often restricted at least partially as evidenced by her snoring. She doesn't have seizures that we know of, but we've been told her brain is so susceptible that it could erupt with them at any moment.

Tomorrow, we will wake up at 4:30 in the morning to head to the hospital. No matter what happens, our story will be one of victory, not defeat. We choose to live like we know that the resurrection is true. Happy Easter.