Back for the Broviac.

So.

We survived the week. My mini-meltdown of last week did eventually find resolution. No one was left behind, everyone made it to their respective places, my sanity and faith in humans and goodness was restored.

Karissa’s appointment. I’m not quite ready to talk about all that the details mean, IMG_4607 but the testing that she underwent last week at the appointment with the audiologist did confirm that there is indeed “ a problem” with Karissa’s processing of audible information. She “hears” things ok, but does not “listen” ok. You know on Charlie Brown where the teacher talks in a “wahhh,whaaa, wahhh whaaaaa” type of voice? That’s how Karissa hears in pretty much any situation where there is background noise. I mean, I KNEW all of this. And in some recessed corner of my brain, I knew she would probably one day be hit with this diagnosis, but to have it there in black and white on a report in front of you, to be handed a list of “how to help your child in the learning environment” tips for the teachers…ugh. It just hits a little harder than you think you’re prepared for. I mean, when she was neck deep in therapy at the age of 2, a therapist first brought up that she likely had “Central Auditory Processing Disorder”. It sounded like a nice way of saying she couldn’t process info correctly, and it seemed to fit.

Having the audiologist hand us that “official” diagnosis however was far different. Because I sat there in that little room, watching my beautiful baby girl with those huge headphones on her head try to follow the directions in the test. Try to focus on hearing the sentence in just her right ear while numbers were being whispered into the left one. I watched her go from a perky, energetic, leg-bouncing bundle of smiles into a limp, melty, strained, withdrawn, sad little girl, with hardly the energy left to sit in the chair upright by the end of the test. It was a dramatic change. One I was not ready for, really. We are going to need more followup with her neuropsych doctor, and will obviously need to meet with her teachers at school to discuss how to help her in a classroom setting (as you can imagine a room full of 3rd graders is not exactly “free of background noise”). When I emailed her teacher to give her a heads up that our conference time would likely not be enough (we get a 15 minute conference with her in two weeks), i got a phone call rather quickly from the teacher. We were able to discuss a few things right away, and her teacher brought up that she had also seen karissa do the “energy slump” in a dramatic fashion a few times. Clearly, we have a few things to tune up for her. But I am so relieved to have a teacher so willing to help her students thrive in the classroom.

We’ll get through that one like we always do. it won’t make it any easier to actually DEAL with Karissa’s cloud gathering, but at least we can be armed with more info. Figure out ways to help her succeed instead of feeling like we are all always picking up the forgotten pieces for her. Like i said at the beginning – there’s a lot of stuff to unpack from this new piece of baggage. It’s less about the diagnosis itself and more about how to deal with the unique special needs of another K. Last week was just not a good week to get the info. This week isn’t tons better, but by next week, i’ll have it all sorted out, just you watch!IMG_4722

Anyways – tomorrow morning I’ll be getting up bright and early to pack Kendall into the car for yet another trek up to milwaukee. Another lonely wait in the crazy waiting room. Another scar earned by my beautiful little girl. As far as surgeries go, this one is “easy”. We’ve been down this road plenty of times before. But for some reason I feel a sense of urgency to pray for God’s guidance of the surgeons hands, pray that her veins are open and strong enough to hold the line, pray that there are no crazy kendallisms thrown in that would throw this “easy” surgery for a loop. She is still making a recovery from the sepsis of last month. She has not slept well in a few days and is more tired than her usual tired. She quite likely has another nasty UTI brewing as she has battled lots of pain, a low-grade fever, and the most disgusting smelling urine you can even imagine in the past 48 hours. All of these things just conspire to make it a “less than ideal” situation for tomorrow’s surgery. This picture is of her going to bed the other nite, hooked up to all of her tubies – 3 IV lines for all her meds and tpn, G-tube to drain, J-tube feeds, urine drain tube (foley catheter), oxygen, pulse ox probe. She crosses her legs like that when the bladder spasms are super painful, and she will sleep like that almost all nite. She’s picking at her fingers because the skin is just peeling off of her fingers and toes, and causes more pain for her. (I have no idea why this is, I think it’s a micronutrient/metabolic thing, but not sure. Anyways – not much we do helps it, so she just deals.)

So – we need prayer. Lots of it. I’ve had the pre-op nurse tell me to pack a bag (actually she laughed out loud when i said that we normally get discharged within a few hours of this surgery), and even Ben reminded me that I better pack a bag. Any medical momma knows – if you pack a bag and have it in your car, you won’t have to stay. But if you don’t pack the bag, and you have nothing ready with you, chances are very good that you will be admitted. So i’ll pack two. Just to be OVERLY prepared so that the backwards superstitious magic we mama’s hold on to works the way it should. The big girls will be in good hands – their daddy’s. He was able to get his flight bumped back so he could be home with them all day. This will be huge for their emotional wellbeing. They are all extra crazy/clingy/emotional when i’m not there, when we have to go to milwaukee for any reason. I was so grateful for everyone who stepped up to help us last week – but would have felt bad hefting the entire emotional burden upon whomever had each of them. It’s not easy. None of this is. Some days i get really really really tired of juggling all that I do, and just want to run away, if even for only a few hours. But at the end of the day, I know we are all blessed. We have no need to complain, because we have so very much to be thankful for instead.

IMG_4739I’m already tired. And i still have to pack. And get everything ready for the morning because goodness knows i will not be the most coherent and organized at 6 am.

We were able to get her special magical “glass slippers” to complete her Cinderella ensemble a couple weeks ago. I’ve had them hidden since then, waiting to surprise her on Halloween. But you know what? I think if any little princess ever needed some glass slippers, tomorrow would be it. So i’m gonna let her wear them.

Bibbity- Bobbity-Boo, baby girl.

 

My team of “Terra Texters” – you know what to do. Send me the funniest, craziest, most ridiculous stuff you can think of during my time in the waiting room. I don’t get to answer them all – but I do read them all. And they help me not feel like the walls are closing in on me during the long lonely waits. She’s scheduled to go back at noon, start time of 12:30. If you want a more up to date time, check the Terra Talking Facebook Page.

Don’t Stop Believin’.

 

Terra.

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Comments

  1. Praying for her surgery tomorrow Terra!!! Which tubes were which in the picture? I could sort out the O2 and pulse ox but that was all. I wish there was a cure for Mito.

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