when the icu feels like home.

For those of you who actually try to keep up with my crazy random postings, this is going to start getting confusing. I posted my november 1 post that i had already had mostly written, and am now trying to fill in all the days between now and then, but I also need to update about Kendall’s current craziness, so my intervening posts may have random “future” information sprinkled in. Anyways – just go with it. Ignore the time space continuum and just read the stuff and don’t try to make sense of it. Got it?

Anyways – at the current moment I am sitting on the vinyl bed/couch in PICU room 501 of our home away from home up at Children’s Hospital of Wisconsin. And the fact that i am ECSTATIC about this particular room and this particular couch bed (aka Boxes o Bliss) speaks a little bit to the altered reality that is my life. I am excited because this room is huge. You don’t feel closed in by machinery and walls. There’s space to breathe. And this couch – it’s ONE PIECE!!! Well, three actually when you pull it out – but it’s like – the same size! i’ll post a picture on the terra talking page to show you what i mean. Even though I didn’t get to sleep until a little after 3 am, I got some of the best sleep i’ve ever gotten on the boxes o bliss, even without my eggcrate foam pads. (I didn’t bring them because I don’t anticipate we will be here that long!) It’s the little things I’m telling you.
But i realized last night, as I was pushing Kendall’s wheelchair and pulling my suitcase behind me as we walked to her room and the HUC announced “Patient has arrived to room 501” and cheers of “Hi Kendall!!!” echoed through the halls, that it felt a little bit like being home.

That is a weird thing to say, I know. And I know that there are some of you who will TOTALLY get that sentiment and others of you who think that’s an insane statement to make. And the truth of it probably is a weird combo of both. It is not normal for everyone, but somehow, it has become our normal. It is normal to have called ahead to request that one of “Kendall’s nurses” be assigned to her before we were even on the road to the ER. It is normal to be able to discuss labs at 1 am and recite med lists alphabetically while simultaneously helping the nurse hook kendall up to all the monitors. It is normal to feel a sense of relief that we are here, and settled, and that the weight of whatever has been bugging my baby for the past few days is no longer squarely on my shoulders.
So this is where we are at.

the plan for today is to get an MRI to make sure we aren’t missing an infection (as the local ER doctor suspected and Kendall certainly seems symptomatic of), and if not, to run some other labs to make sure we aren’t missing something. In case this is confusing – i’ll try to recap. I realize that many times on Kendall’s page, and even on the blog, I often skim over or just don’t address at all some of what she actually deals with every day. I don’t like focusing on her pain or all the things she can’t do or all the medical stuff she actually has to deal with every day. I realize that for some people, recounting every single medical procedure their child endures is part of how they deal with it – but for me, it’s just part of life. when I am forced to stop and list things out or analyze just how very much we are doing for our medically complex child at home, it breaks my heart a little. So i’d rather just keep my head down and barrel through. She endures it without complaining, so shouldn’t i too?
Anyways – she deals with a lot more than what most people know. Probably more than most people will ever know or understand. The things Ben and I have learned to do at home that are beyond “hospital level of care” sometimes shock me. It is just what we have to do, so we do it. And sometimes it shocks me a little bit when i realize that her day to day care is more than even what could be handled by our local hospital, or even the regular patient floor here most of the time.

But if you recall back to her last big hospitalization in October – she was having a lot of random pains that seemed to shift from her visceral organs (which was the focus of our investigations for a while) to her joints. She refused to bear weight on her left foot and we X-rayed it every which way looking for a break. It was very ankle-centered, but didn’t “look” bad so we just shrugged our shoulders. Then it was her hip. Then her other hip. Then her elbow. Then the other ankle. Then her shoulder. Then “just everywhere mommy”. It was nonstop but there was no “thing” we could pinpoint or say “ahhhh yes, this is why this hurts. We can fix it by doing that.” At the time she was still on the Dilaudid which would help the pains, and we were ok with that. And then she finally weaned down from the Dilaudid to just the Ketorlac (basically it’s like IV ibuprofen). And that helped keep things under control. She started two other meds for “pain control” so we started weaning down the Ketorlac in an attempt to keep her tummy happy (long term use of it can start to cause Gi bleeding). And as we were weaning that anti-inflammatory pain relieving medicine, this particular wrist issue started getting worse. Our default response is to kiss it, tell her she’s ok, and then otherwise leave it be. She is not a kid who gets babied a lot or has her every ache and pain attended to. We would literally be chasing our tails all day long!  “rub a little dirt on it” is basically the adage we parent by!
So after a couple days of consistent complaining and her starting to guard it more and not use it at all, we were a little suspicious. We gave her the Ketorlac and that seemed to keep the pain under control better, but we still had no idea what, if anything, was wrong. Monday morning she woke up and it was HUGEnormously swollen. At that point I started to suspect maybe she had a small hairline fracture somewhere so after a packed full Monday morning, we trudged to the ER.
The problem with a kid like Kendall is that you can’t just look at her and say “oh, well since it’s not THIS obvious thing, it must be nothing.” Her body is notorious for throwing out red herrings to have us chasing down one trail while really the problem lies somewhere else but her body doesn’t interpret or give “i’m in trouble” signals appropriately. And the thing is, the stakes are starting to get really high with what could go downhill if we guess wrong. Again, i think I kind of downplayed how very very desperately sick she actually was in September, but it was crazy. It was hard to watch. It is harder still to try to process through all of that and some of the baseline changes she has had and try to find a balance between wanting to break down and cry, and keeping a positive attitude that it’s hopefully just temporary setbacks.
And as a completely open and honest aside here – I can tell you that it absolutely slays me to have people telling me that. I know that most people who say things like that:”Well hopefully she bounces right back. It’s just temporary. She’ll be back to her old self in no time.” – I know you mean well. i know you say it from a place in your heart that wants to not think that bad things can really happen to kids/people you know. I know this because i know I have been guilty of saying it before. But sometimes, in the throes of the storm we have all come through over the past couple months – it doesn’t comfort me. It makes me want to lash out, actually. Because I have watched this kid fight like HELL to get through what she’s gotten through, and it’s been really really really scary the past couple weeks but i’ve had to hold it all together for everyone else, and for myself, and for Kendall. This fight took a lot out of her. And while yes, her spunky fighting spirit is still there, her body is still VERY tired and weaker than I even like to admit to myself. YES I hope she continues to improve from that. And hey, maybe this random joint stuff is even part of why she hasn’t fully regained her strength/endurance.  But unless you are currently walking in my size 9’s, you don’t know. And this little vent is truly not directed at anyone or anything that’s been said in particular. I’m not saying it to make anyone feel bad. I’m saying it because it’s part of my committment to being more open and authentic on my blog about how I feel going through this journey. And right now, today, this is how i feel.
my kid tried to die twice in the last two months and that sucks. It’s brutal on the spirit. No two ways around it.
BUT – I do realize that she did not die. And she is still here, fighting, kicking, being sassy.
she’s not doing that lightly. She’s doing it because she is amazing. And because God has a much bigger plan for this girl than any I could ever dream up. And when i hear things like the flippant “oh she’s on her way back. She’ll be fine soon! Etc. Et al..”, it makes me feel like that’s downplaying her amazing intense battle. That’s really what it comes down to I guess. I just want people to understand that this kid literally fights for every day of her life. and she does it awesomely. She makes it look easy. she does it with an attitude of joy that i could not even hope to have if I were in her shoes. But she does it.
So that’s what i focus on. It doesn’t mean I don’t still sometimes need to process through the scariness of what we’ve witnessed the past couple months. But I choose to put a positive face on, and look forward with hope, because that is how she lives her life.
I realize I’m just kind of ranting here and I hope you’ll forgive me for that – blame it on only getting four hours of sleep last night. But I just kind of wanted to get that out.

Please know that i’m not saying you can never say things like that to or around me. for the most part, you’ll get my standard response of smile and nod in agreement. Because of course i am the most staunch believer in my girl’s ability to “bounce back to herself in no time”. Of course I believe that and hope that and pray for that. But i’m also the one who sees the ups and downs, the throes of pain and the elations of success at accomplishing that baby step. I am the one who pours myself into making sure that she has more good days than bad, that someone stays a step or two ahead of the craziness of her little body, that while we all paddle furiously under the water, all you see is smooth feathers and floating on top of the water.

i’m so far off topic i’ve confused even myself…

anyways – that’s where we are today. Hoping for an easy answer, an easy fix, and possibly even getting home tonight if there’s no other red flags. Just a speed bump on the road to recovery. But it’s still the unknown. And at the end of the day, I’m the one who has to decide if I’m comfortable taking her home again with unknowns, and not knowing if she will continue to trend in the right direction, or if she will crash, and having no reserves, crash hard. I feel like sometimes that term is overused. It loses it’s meaning. I don’t mean that she will be lethargic and tired. I mean that her body will not even have enough of the right hormones available to keep her heart beating in rhythm, to keep her blood in her veins and arteries so her blood pressures remain stable, to make sure that oxygen is pumped efficiently to all of her important organs. These are the things that go wrong when Kendall crashes. It is scary and it is our very possible reality.
Taking her home requires that I have faith in a God who is bigger than my fears. It means surrendering to whatever might lie around the river bend. It means that as much as I try to retain control over every little last aspect of Kendall’s body via her labwork numbers and her vital signs and her trends in BP/HR, that i have to admit that I do not have control, and in fact, there is no such thing as control.

So….
We wait. Wait for MRI to be ready for us and wait for the contrast to be pumped by her heart through her veins and wait for the machine to take pictures between magnets and wait for the pictures to be interpreted and wait for answers and relief and a plan.

And even though it feels better to be here, in the safe walls where the medicines are and the machines are and the big ipad that tells me what her body is doing via labwork is, it is not really home. I miss my other babies and I miss the neverending laundry and the semblance of normal we were just starting to put together. I miss the semblance of normal our lives were a couple months ago.

But if you have to be stuck somewhere, this is a good place to be. My other babies are in good hands too. I am SO so glad that right before I got the call to head north, I had spent over an hour with Kaylen, having “Special mommy/kaylen time”. She thrives on that kind of thing, and I am so grateful I was able to pour attention and love into her for a little while before this trip.
Anyways – i’m not even really talking about anything anymore, just spewing out random thoughts as sentences.
I think maybe I need coffee. and some chocolate. I knew I should have grabbed that bag of halloween candy on my way out the door….

I’ll update Kendall’s page when I know more. And i’ll be backdating a couple posts here too. (You’ll probably have to click over to the actual blog and scroll down – they don’t auto-post to FB when I backdate them!)
And I think that’s about all I have to say about that today.

 

terra

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Comments

  1. {{{hugs}}} I don’t think it’s possible for people who haven’t truly feared the worst for their child, with the medical challenges that support that fear, to truly understand how empty certain platitudes can be. I know it comes from a good place but that is hard to remember in the moment. “God never gives you more than you can handle” is the hardest one for me to receive graciously.

    Klaw’s challenges have become easier as he’s gotten older in many ways but that “crash” you describe is like a specter hiding in the shadows.

    Even though I’m not commenting regularly, please know I’m reading & keeping y’all in my prayers. <3
    Dana K talked about…Recognizing Your Privilege Isn’t Enough