Heartsick

Where to begin?

Keira got her tonsils out on the 9th. Surgery went well. The tonsils were enormous, each the size of my fingernail, stuffed in her teeny weenie esophagus. The endoscopy, almost humorously, showed "the healthiest GI track I've seen in 6 months" according to the doc. K stayed the night in the PICU. She slept SO quietly and SO peacefully. No retching. No snoring. Jeff and I were so excited. This could be life changing! Furthermore, Keira set a record by coming home the very next day!

The past week at home has not been a breeze. It's been tricky to keep her comfortable and we're short on hands to hold her. Not short on willing hands so much as hands that K is comfortable with enough that her heart rate decreases, rather than increases, in their care. 

I hate to admit that I had the added stress of wanting K to get better quickly so that we could go on vacation. I want to get out of town as a family so badly. But it was actually kind of a relief when we decided the other day to postpone our trip until after Christmas. Legoland will wait. 

That brings me to yesterday. For days the boys had been wanting me to take them to the library, so I had promised to pick them up from school to take them. When it was time to go, my mom had worked an 8 hour day, so I sent her home and loaded K in the car, even though she was upset, hoping the ride would sooth her. The boys were out of sorts. K continued to be unhappy and the boys' attitudes were bad. Instead of going to the library we went straight home. So I was yelling and everyone else was in tears. 

At home, I worked to make amends. With an unhappy baby on my hip, I talked with the boys about their days. Made  plans for Liam to have some one on one time with Jeff that evening. Just when I was thinking this evening could be redeemed, my "mom alert" sounded. K was working too hard to breathe. I measured her pulse/ox, finding her pulse was too high and her oxygen too low. Seeing that I'd already given her all the meds I could, we needed to go to the ER. 

We've got this part down to a science. Within minutes, Grandma Janie was ready to take the boys and Ronin and Liam had packed an overnight bag. 

Even though Liam would be missing his date with Dad, he kicked it into gear to help out. He turned his frown upside down, so to speak. 

Then Ronin, our tough guy who rarely cries, came up the stairs in tears. I couldn't understand until the third time he said it, "I'm scared of what's going to happen to Keira." As I sat on the floor to hug him, I had a meltdown in my head. "This is my breaking point. I can't do this. It's not fair. I'm going to lose it." Somehow, by the grace of God, before a tear could fall, I was soothing Ronin's worries and moving ahead. 

Jeff and I took K straight to the ER in Boise, to be at the foot of the children's hospital and all of her specialists. Here's a secret: All you have to do to get seen quickly at the ER is utter the words "Respiratory Distress." Magic. It was an excellent ER visit, if there is such thing. The doctor told us almost immediately that he has an 11year old daughter very much like Keira. It was so nice to have a doctor who understands! He was able to meet us where we were right away without us having to bring him up to speed. He even showed us pictures of his little girl and admitted that he was spending way more time in our room than he typically spends with any patient. 

The steroids they gave her in the ER eased her breathing but we decided to admit her lest we have to go back to the ER as soon as the steroids wore off. 

I went home briefly to get some things for the night. My heart was aching. The boys have been 110% amazing from day 1 with everything having to do with their sister. I am well aware of what a blessing that is, and of how hard it can be on a kid to have a sibling like K. This was the FIRST time that I felt like this phased them. We'd had to drop everything and put Keira first. No tacos for dinner. No chance to round out the day after a difficult afternoon. I kept remembering Ro crying and asking me if Keira would die if we stayed at home. But I also remembered Liam saying to his brother, "It's ok to cry," and putting his arm around him as they walked into Grandma's house. Before I left the house, I put an "I love you" note in each of my guys' rooms. I put on my necklace with the 3 charms. One for Liam, one for Ronin, one for Keira. 

I just wanted to be with the boys last night. It's just overwhelming. As I drove back to Boise, I saw many flags at half mast, for the victims in Paris. My night doesn't even compare. So much suffering. I can even comprehend. 

I did something unprecedented last night in that I requested prayer. And thank you to everyone who has been praying. My ideas about prayer are changing. I'm not quite sure how yet, but I suppose I'm trying to exercise it more. Do you ever have that experience where something that you've been hearing or seeing your whole life suddenly becomes much more real to you? Like everything you've heard for so long suddenly rings true in a way it never did before? There should be a word for that (Is there?). Anyway, I'll be giving that more thought. I'm not going to even try to articulate it yet, lest I sound like I'm simply regurgitating a litany I've been fed my whole life. But I will tell you that in my efforts to ease my anxiety and to find peace and rest, I've slowly been reading Sabbath, by Wayne Muller, The Land Between, by Jeff Manion, and Living into Community by Christine Pohl.
Prayer has come to the forefront for me. 

This morning I'm lying in K's hospital bed with her on my chest. She doesn't sound very good, but she's not crying. I guess I'll keep on keeping on. And praying. Much love and appreciation to you all. 

The Dutch Classic and Other News

It’s been a crazy few weeks, although I s'pose that’s not saying much.

The biggest news is that Keira is going to have surgery on Monday. The ENT found that Keira’s tonsils are not only enormous, but have no tone, so they are literally hanging in her throat. So, grossly, she may actually be gagging on them and THIS could be our answer for why she is retching/vomiting so much at night. Jeff and I are both very optimistic that this could lead to some major improvements including fattening her up and getting her to sleep better. We can’t wait. K will also undergo an endoscopy on Monday to take a look at the status of her fundoplication and make sure there aren’t any ulcers or other abnormalities contributing to the situation. I’m also very thankful that the ENT has ordered, of her own accord, for Keira to stay in the hospital, at least overnight, in the PICU. She recognizes that there is some concern that with a sore throat, K is especially at risk for pooling fluids and aspirating. The boys are excited because this affords them at least two nights at Grandma Janie’s. My one wish is that this surgery had been scheduled sooner. Our plan had been to leave on November 20^th to take the kids to Southern California for Thanksgiving. I want so much to get out of town. I’m hoping and praying for a quick recovery for Keira. She doesn’t typically bounce back in a hurry.

Keira, overall, is doing pretty well these days. She's doing amazing things in therapy; working so, so hard. She’s chewing like crazy in feeding therapy, kicking AND holding rings SIMULTANEOUSLY in swimming, crawling with her arms and experimenting with a gait trainer in PT, and participating in group by activating her switch. Really fun stuff. 

We continue to monitor her very closely to try to keep her well regulated. Halloween is a good example. Keira dressed up like the cutest little cheerleader you ever saw. In my mind, it was a little tribute to all of you, “Team Keira,” who are consistently cheering her on. She seemed to enjoy the process of getting dressed up, taking pictures, and rustling her pompom. However, not long after we’d left the house to meet up with some friends, she was retching and throwing up. So, we divided (as we’ve sadly become accustomed to) and Jeff took her home for a quiet night while I tried to keep up with the trick-or-treating Tron and Master Chief.

We met with another new specialist, which was an interesting experience. He’s a physiatrist and my understanding of that is that he’s the one who will be in charge of Botox or Baclofen, or other medications/interventions to help with muscle pain and spasticity associated with CP.  The pediatrician told me she wanted to know what I thought of him because some parents didn’t like him. Interesting…

So let me start by saying that I’ve heard of lots of parents who’ve been told things like, “He’ll never walk,” “She’ll never talk,” “He won’t live to be 5,” etc. etc. Fortunately or not, we’ve never been told anything like that. In spite of her grave symptoms, doctors are very tentative and careful to avoid discussing prognosis or the D-word at any cost. Nobody has ever directly said that Keira won’t do this or that or that her life expectancy is limited. For me, that’s unsettling. 

So anyhow, we meet the physiatrist. I thought he was awesome. The appointment was a brief exam but mostly a conversation about how life with Keira is and could be. He asked about how Jeff and I are holding up. He asked how the boys were doing, because having a sibling like K can be life-altering in good and bad ways. He addressed the fact that Keira is “medically fragile” and that she could come down with the flu and not survive it. Or perhaps we could walk into her nursery to get her up one morning and she wouldn’t be breathing. He talked about how, as she grows, she is likely to have more and more muscle pain and we’ll have to watch out for scoliosis. He asked if we have a wheelchair, ramps, lifts, and other things to help make our life easier. He suggested that we fill out an advanced directive. He suggested that we meet with the palliative care* team the next time we come in to meet with him .

Long story short, I thought this doctor was great. He was gentle and kind and wore mismatched crazy socks, but was also so refreshing in his candor and honesty. I suppose I can see, though, why many parents would not like him. And just because I liked him, doesn’t mean it was easy. After 30 minutes in the room with him, I kind of felt punched in the guts. 

One more story… The Babboe bike is coming TODAY! I’m so excited. We’re taking it directly to the bike shop to have it put together and tuned and I’m hoping for warm enough weather to take Keira on her first ride on Sunday. Last I heard, the bike was almost completely funded through R Life Gives. Thank you, everybody!

So here’s the thing. A while back, the bike company informed me that our bike would actually say “Babboe Dog” on the side of the wooden box. They wanted me to know that, free of charge, they’d be sending me a different decal to cover that up.  So, yesterday I went to the post office to pick up a package. Turns out it was our replacement decals for the bike box.

Oh. My. Goodness. I could not stop laughing. Is this serious? Anticipating a company trademark, in no way did I expect our replacement decals would be the “Dutch Classic.” It is blue and white print that is large enough to wallpaper the box from top to bottom on all sides. As if the bike weren’t a spectacle on its own. The jury is out on whether or not we’re going to go all in and use the decals. It makes me giggle just thinking about it.  I’ll keep you posted.

Much love to you all.  

*My understanding of palliative care is that the goal is to keep a patient comfortable with the assumption that there is not going to be a great amount of recovery