Home away from home.

For those who don’t know – Kendall was re-admitted to her home away from home here on PICU 5 up in Milwaukee on Thursday night. At this point we are still unsure if it is an infection trying to brew that we caught super early, or if it is a delayed and “abnormal” reaction to the IVIG treatment she received on tuesday.

She started acting “off” on Wednesday afternoon, was definitely off on Thursday morning, and was a certifiable “hot mess” by Thursday afternoon. She spiked up to 102.8 fever, very high heart rates and blood pressures, and was becoming inconsolable from pain – so I ran around like a chicken with my head cut off for an hour waiting for babies to get off buses and hoping Ben could cancel his work trip in order to fight rush hour traffic and get home. My mind immediately began playing back the track of her doctor telling me “she will not survive another infection back to back” – and i was struggling to keep my panic in check while trying to stay calm enough to get the big girls and their logistics settled down.
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Thank God for good friends, for gas tanks that manage to run on fumes, and for a husband who can drive like a bat outta hell when one of his baby girls needs him. At the end of the day, the girls went to a friends house, Ben made it to the hospital with me and kendall, and as smooth as things can go in a situation like this, they went smoothly. It was So hard to run out the door, the girls had just come in off the bus all ready to tell me stories of their day, and instead i was waiting at the door so they could kiss their febrile, cranky sister goodbye and i could tell them to sit inside quietly with the door locked until daddy came home. They all had such stiff upper lips, but kaylen’s little lower lip quivered just a little bit as she was saying goodbye. i hate that they all have to know this kind of “fear” – are you coming home with sissy tonight? how long will it be until daddy is here? when will we see you again? – and yet have learned coping mechanisms to shove the fear down, sit at the table and get right to homework. My dear friend sharla who has stepped in and become a second mommy to my girls over this past crazy year was able to run and rescue them so that I could have Ben at the hospital with me. At that time i had no idea if Kendall was headed towards another bad crash or if it was just something “simple”. I had no idea if the hospital was going to follow Kendall’s protocol or if i was going to have to pull the momma bear routine again. Sometimes you just need poppa bear to come in and set some people right.

Thank the Lord we did not either of us have to get to that point. Edwards was already on top of everything by the time we got into a room thanks to a proactive phone call from our Milwaukee team explaining the severity of Kendall’s last few infections and that we just cannot tell ahead of time what is or isn’t Kendall “doing ok”. They started her protocol procedures immediately, gave Kendall extra comfort meds and Ben and I were able to focus on just praying over Kendall and getting logistics worked out. I was able to drive myself back home, get gas in the VERY empty car, and pack calmly for what is hopefully only a couple day stay. I went with the theory that if i packed for three weeks, we would only be here for three days. I got a small lecture about eating a real meal from “someone”, so I stopped to eat, and by the time I got back to Edwards, the milwaukee transport team had an ETA within 30 minutes. once I saw them get her all shifted over to their machines, I took off so I could be at the hospital ahead of them. I figured Kendall would sleep the whole trip up, but would be asking for me once she woke up when they stopped, and that is exactly what happened. We got about 30 minutes away from CHW and the skies just opened up into a torrential downpour! I was trying again to be calm about the fact that I was in one vehicle with zero visibility while my baby laid in the back of ambulance somewhere behind me, barreling towards the ICU, and I had no idea if she was still stable or if she was pulling crazy stuff. Again, the peace that passes understanding washed over me and I just knew she would be ok. Somehow, some way – she was going to be ok.

I pulled in to the garage, parked and unloaded our stuff, and began the long slow walk up to our unit. I knew we were in a room far away from where we were last month, but it was still a little hard to not start breathing a little hyperventilatery when i had to be buzzed in. I turned the corner around the welcome desk and down the hallway came one of our beautiful amazing nurses, one i am blessed to call my friend, running and jumping to come give me a hug. Its the kind of place you never want to be “excited” about being, and yet if you have to be here, its so good to be among friends and family. right then, I knew we would be ok. I knew i would get “some” sleep that night because once I answered all the questions I had to for check in, i knew our nurses would be able to handle anything Kendall threw their way.

And then the next day we had our angel nurse rachel back on the case – and when a new to us attending asked if we could transfer kendall up to the floor for observation, her firm and emphatic “no we can NOT” that went along with the horrified shakes of their heads “no” from the other rounding team members who know kendall again gave me such a peace that no matter what – we would all be ok. We were in the right place. It is hard and expensive and drives me CRAZY sometimes to make this drive – and yet, there is no other place. For better or for worse, milwaukee is where kendall belongs when she cannot be at home anymore.  I cannot put it into words for those who have never walked this path of medicalities before. And for those who have – you know exactly what I mean.

Anyways – Kendall is hangin tough. As part of her “emergency protocol” we started stress dose steroids in the ER and are dosing her every few hours. So far, Kendall has not had the cliff dive of craziness that we would normally see if she were septic (had something growing in her blood cultures). SO SO SO grateful for that.  But it leaves us all scratching our heads a little bit because her labs otherwise “look” like she could be fighting something, but she’s not “acting” that sick. So is that because the steroids are doing their job and stopping the catastrophic shock her body has been going in to? Or is it because this isn’t really sepsis, but rather a reaction to the IVIG treatment that is mimicking sepsis because her body is still recognizing those immunities as antibodies, something to be fought and rejected vs helpers to be assimilated.
Tough questions, and no one has any magical 8 ball to shake for good answers.
All we have is time, antibiotics, and a whole group of really smart doctors and nurses putting their minds to the grind and hashing through what they know of complex kids, and what they know of Kendall and her “-isms”. The hope right now, Saturday night, is that we get a final “all clear” report from the cultures drawn on thursday night, and that the labs we draw at 4 am show that her blood counts are going UP instead of the downward trend they’ve been on. If those two things happen, we will likely make plans for discharge tomorrow, call it a bad reaction, and have a conference at some point in the next couple weeks about how we will make a better plan for NEXT infusion time to support kendall’s body a little better to make it not cause this kind of reaction.
Mostly – I will be overjoyed to call this a reaction.

If it were another infection, it would be disheartening. we had just started gaining some good momentum with getting her back to baseline. It would feel a little….hopeless? I guess that’s the word i’m looking for….to think that her body was already spitting out bad bacteria. In spite of doing “all the right stuff” for her care. I do’nt really think it is an infection. i really feel like its just her crazy body showing us that her baseline is still razor thin. she has no reserves to deal with any little thing that pushes her out of that teeny tiny zone of “ok”. that in and of itself is a hard realization.
“but she looks so GOOD!” we hear this so often. It is a phrase that is the bane of every complex kiddo’s mom’s existence.We rejoice in the good days! They are awesome! We are glad that you get to see our kiddo’s who fight day in and day out just to have a semblance of normalcy “looking good”. I pour myself into making sure Kendall “looks good”. I do take it as a compliment when I hear that – but it is really sometimes hard to hear it. Because what it doesn’t say is “I can’t imagine how much it takes to keep her looking good”, or “how is she doing on the inside to be looking so good on the outside?” Not that i expect most of you to say that! If we are out and about in any kind of way where you are seeing us in public, she probably really IS doing as good as she looks. But for me – it is hard to look at her sometimes – wanting to chase her sisters and run to Target with mommy and just wanting to LIVE her life – and have to wonder what is really going on inside? 
but this is our life right now.

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we live by faith. Faith and hope that what we see is what we get – that good equals GOOD.
I am tired and feel like i’m rambling now. i didn’t get to many of my “mito awareness” plans for posts this week – but hopefully Kendall’s real life adventures are good mito awareness for you all. More so than any facts I could spout out – I hope that Kendall’s story brings awareness to the fact that none of us should ever take anything for granted. Grab hold of each minute, each boring hour at work, each tedious trip to the grocery store, each back-breaking loading of the dishwasher – relish that each of them has a good side. That’s what my mito awareness is. As I think of friends we’ve met on this journey who are watching their children near the end of their journeys on earth, I consider myself lucky. I will think of them, and think of our own story and the stories of so many of our friends with mito – and I will BE AWARE, that life is a gift.  All of the bad times and all of the boring times and all of the amazing yippee-skippee times – they are all worthy of being cherished. Because they all make up LIFE.

I hope you are all grabbing hold of life and living it to the fullest as best as you know how.

sorry for my crazy scattered thoughts tonight! if you have questions I didn’t answer – let me know!

 

much love to you all –

keep on keepin on~

 

terra

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Comments

  1. Beautiful and inspiring as always. Oh how I do feel you on the looking “good” words. Those words can send me over the edge like few others. I see you and my other friends whose kids are clearly much sicker than Mylie is and I tell myself to be happy that she is so good. Then, I pull out old notes and see how different she is now than 3 years ago or 18 months or even six months. It ties me up in a million knots. I wonder if we’ll just hit a plateau or if this pretty freaking scary decline is going to continue at its current pace. I wonder and I worry and I pray. So, when I pray for you and Kendall, I’m praying for us too. For answers and peace for all of us.
    Nicole DeZarn talked about…What Do I Do Now?

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