unexpected.

you think sometimes that you are prepared for life. Prepared for the curveballs that may or may not come your way. You have emergency bags or emergency plans or emergency numbers in safe places, places you are prepared to get to in case something unexpected comes up. And this is all good and fine and sometimes it comes in handy and you avert the big crisis because you prepared for the unexpected.

But sometimes, even if you think you are prepared for the worst case scenario, it still creeps up on you at 4 pm on a random rainy tuesday afternoon in October.

Maybe you are sitting in the lobby of the hospital and you hear a code called in the area your child is having surgery in and you just know it was her. Maybe you run up to the waiting room where the desk person is frantically searching for you and your name is being paged overhead simultaneously and the doctor is being paged simultaneously and you try to hold yourself together as you walk to the elevators. And you tell yourself everything is fine as you walk into the unit and you even believe it for half a second before you round the corner and see your child’s code light on outside her room and many many people around her room and a doctor intercepts you halfway down the hallway and pulls you into a private room and invites you to sit down.

It is then that you know that none of your emergency preparedness actions are going to be enough. Whatever is about to come out of the doctors mouth is going to be so unexpected that it will hit you in the gut with a ferocity with which you will never be prepared for.

And then the doctor tells you essentially that your child died on the table, right below his hands, but it’s ok because it was only for a minute or three and she is ok now, she is back, and everything is ok. But he is shaken up and you find yourself trying to comfort him because the actual reality of his words haven’t sunk in to your brain yet, maybe you don’t want them to sink in, and because surely he couldn’t really mean YOUR child he must be confused. But he takes you by the arm and walks you to your child’s room because she IS awake-ish and is moaning your name and has people surrounding her, holding oxygen masks above her face because the cannula taped into her nose is at max capacity and still isn’t giving her enough oxygen to keep her vitals stable. and you will go to her, this child of yours who likes to defy odds and bring new meaning to the word “unexpected” and you fall on her and hold her and tell her it’s ok, it’s all ok, you’re here now.

The next few hours might come as a blur to you. you have to tell everyone that she is ok but that she is still not “stable”…

This is unexpected.

it was supposed to be an easy surgery. A quick stay.

And now it’s all topsy turvy and there really aren’t any answers and you have no idea what will happen in the next few minutes or hours or days.
Unexpected.

i am not even sure I have fully processed for myself what happened yesterday. Her nurses tell me it was scary, and that it’s ok that i’m scared and nervous and unsure of what happened or what comes next. But mostly I just look at her and I’m glad she’s still here. Still sassy. Still fighting, like she does best. I have been fighting some kind of wicked cold/sinus/viral crappiness and i think it’s almost a blessing. My head is so full of snot that it’s hard to think through it all, and that’s probably a good thing.

What I do “know” right now: The running belief is that she had a massive pulmonary embolism. Likely a clot or part of a clot dislodged from somewhere in her body and momentarily blocked her pulmonary arteries. This caused her to go into v-tach – ventricular tachycardia. A crazy erratic heartbeat that was not in any kind of rhythm and was doing essentially nothing to pump blood. As a result her blood pressure plummeted to nothing and her sats took a major nosedive to nothingsville.  I am told that we are extremely lucky that the anesthesiologist on her case is one of the only men in the entire state who could have brought her back so quickly and assuredly. His skillset happens to be best suited to cases where this kind of thing is a likely possibility.
So they stabilized her. Brought her upstairs still very much needing support. I am shocked that they extubated her but I think the main goal was to get her out of the OR and up to the capable hands of her ICU team who knows her.
We aren’t POSITIVE that it was a clot. It could have been air, it could have been her body just reacting to the anesthesia, it could have been just the direction of the moon and wind. Even though we don’t know the reason why, or have any real reassurance that it won’t happen again, we have her back. She is stable. And that is as good as we can ask for right now. It is good enough.
We have imaged the likely places a clot might be hiding out, and see none. she is receiving a large dose of blood thinning medication every day. Her pain from the sepsis seems to be being better controlled, and we are so happy for that. She was very very sick, sicker than i think any of us realized while she was going through it even. And we are looking at a pretty long recovery, full of ups and downs. Her doctors tell us that we shouldn’t feel discouraged, that her baseline may eventually return to normal. That  this doesn’t mean she’s lost major ground. It just means right now, she’s recovering. Right now, the unexpected will continue to throw us for loops. Right now, stable is as good as it gets.

She does have her new line in. They were able to complete inserting that. Her old crusty painful picc is removed. She is cleared to go home in the morning.
So homeward we will go. For hopefully at least the four weeks we would normally be home before returning for IVIG in November. We don’t exactly know what else to expect, but maybe that’s overrated anyways.
I’m looking forward to getting home, into a good schedule again. One of her crazy antibiotics is done, so her med schedule is DRASTICALLY reduced. This means we get some sleep at nights now!  We will look to get her back into school in the next week or so as she proves her endurance to us a little bit more. We have  Halloween costumes to get set for all four girls and I owe Kaylen a birthday party still (poor middle child always gets left out….), and then it will be Kendall’s birthday and then it will be CHRISTMAS.

And then time just flies.

So I’m going to wrap this up because the coughing is overtaking me and my head is still full of snot and I just really really really want to sleep for about a week. Or a month.

i hope this post makes sense. Thanks for trying to read it anyways~

 

peace out party people.

~terra.

The woods.

We find ourselves firmly ensconced in “the woods” of some kind. Kendall cannot seem to find her way out of the woods, and where she goes, i go. So we are wandering in the woods of septic shock, with DIC rivers, presser thorn bushes, access clearings, and gram negative bears.

My mind is still spinning from the absolute downward spiral kendall quinn has taken in the past 24 hours. i know there will be holes in this, forgive me. i’m trying to still piece it together into something that makes sense for myself.

Ok nevermind – it’s taking all day and I just need to get some of the more important details out –

Kendall was admitted to the PICU from the ER because she was tachycardic (HR in the 170-180s with very little activity), and because her blood pressures were starting to fall. This is a typical response to bacteremia (a blood infection), so the wiggle-on from the ER staff was definitely missing. I could not quiet this feeling, however, that this was more than just an average sepsis for Kendall. Something seemed very off. Luckily when her BPs started taking major nosedives, the ER docs caught on to that same feeling and Kendall was sent pretty expediently to the PICU (Peds ICU). In the elevator on our way up her BP’s continued to crash, and by the time we got to our room, the rapid response team was very quick to slide her onto their bed and get right to work.

For three straight hours we had 7 or 8 people in the room all working to get Kendall’s blood pressures to stabilize. We had one reading so low that there was no diastolic (bottom number) pressure. Medicines called “pressers” were started to attempt to force her heart to pump harder and get the blood pressure back up. Mind you I really didn’t have a total clue what was going on – Kendall’s never needed pressers before. But the head doc for our team last nite would calmly call out the orders to the others working, and then explain to me what she was doing, and why she was doing it, and what result we were looking to see on the monitors. I stood near the back of the room, in kendall’s eyesight but not in the way, until they seemed to have a bit of a grasp on getting her BPs to at least register. Then I went and stood and leaned over her bedside and just talked to her – about meeting Cinderella, and about her sparkly Cinderella shoes, and something funny Kaylen had said that day.

They started two peripheral IV’s on my baby via guided ultrasound – in her shins. Her blood was so thinned out at that point that they would just ooze. Her face started breaking out in petechiae – little broken blood vessels. Then her arms did. Then her chest did. Her legs just started turning purple from the toes up. Unfortunately at that point we were still very worried with the blood pressures that weren’t coming up. Every time the blood pressure cuff would squeeze, it would burst more blood vessels in her arm. They had to start an “art line” – an IV that goes into an artery. The doctor who was doing the procedure told me it was supremely painful, and that she couldn’t give kendall anything to sedate her because she was too precarious and they needed the art line NOW. I held my baby down while a large needle was stuck deep into the underside of her wrist, and the doctor dug and dug and dug that needle around, 5, 6, 7 times. No go. Got the big ultrasound machine, stuck 2, 3, and the 4th time more, in it went. And watery thin blood was everywhere. A wire then was guided in through the needle, and then a plastic catheter was guided over that. Through a hole in her wrist. AND THEN – they sutured it in. No numbing meds, no sedation, no pain meds.

someday – my tougher than nails kid is going to walk into a tattoo shop and ask for the most painful tattoo/piercing they have and get it without even flinching because she is hard core. I sat there cringing in pain for her. Wishing I could take it away, even half of that pain – anything but looking into her red, burst blood vessel, pain filled eyes and telling her it would be ok. For almost two hours I hunched over that bed, whispering in her ears about anything and everything that came to mind. I’m pretty sure I promised her the playdoh ice cream fun factory for being such a brave little girl for that art line. (Have i mentioned how much I hate playdoh? but right then and there, I would have given her all the playdoh in the world just to have her be ok.)

anyways – we got a call from the lab that her blood cultures grew gram negative bacilli in 6 hours. Even the PICU doc was shocked. It makes sense – gram neg bugs are notoriously brutal, and with how very sick she got so very fast, it’s not surprising that it grew out so quickly. We have gotten no further information on it as of yet, but I believe that the same bug is also growing out in her urine.

So she is sick. Very sick actually. I don’t like to admit this but she did have me scared last night. I have not seen her that sick since she was a baby. And even then , I didn’t know any better about how very sick she was. To use the past tense does not mean she is “better” now. The doctor was very cautious to choose his words on rounds this morning. She is showing some improvement, but is still nowhere near out of the woods from the “scary part” of this infection.  Well, at least, according to them she’s not. I know Kendall though. I see my baby girl in there, fighting with all she’s got. I think we are definitely approaching the edge of the woods at least.

She is coagulopathic – her clotting factor labs were horridly out of whack. This is part and parcel of ‘DIC”. Don’t google it. It basically just means increased risk for bleeding. She is still severely acidotic and her body is not doing a good job at all trying to correct it’s acid imbalance. She’s too tired. She was in gram negative warm shock last night, and throughout the day has made very very slight improvements to get out of that. she is not actively required fluid resuscitation (large amounts of IV fluids being pushed in very very fast in an effort to fill her body up with enough volume to stabilize blood pressure.

I’m exhausted – i’m not even sure if this blog post makes sense because I am falling asleep trying to type it.

We are so grateful for the family and friends who have made the trek up to see us today. And for those of you who support us from afar, we thank you. I’m not sure what else to say about kendall at this point because I don’t honestly know where or when or how to wrap it up. She is sick, very sick. She has made some slight improvements with a ton of supports in place. she will likely need those improvements to go with the TV show Kelly ripa owned.

^^^ I’m leaving that last sentence in there because I typed it as i was falling asleep – this is the kind of exhaustion i am dealing with people! Our doctor keeps telling me to go take a nap, lay down, get rest. But I cannot rest right now. I am WILLING Kendall to get better by my own sheer determination. And all of your prayers. If I go to sleep she might think it’s ok to not keep pushing forward. and that is not acceptable. She is going to get better from this. She has no choice BUT to get better.

What we need to do now is get her off of presser drips. We are in the slow precarious process of slowly weaning her down off of those. That process SHOULD be complete by the morning. Once we get her off of those, and her BP stays stable, we can start dumping her full of lasix to draw some of the four pounds of water weight she has gained out of her tissues. Her kidneys are still not super excited with life and are putting out this sludgey brownish orange drainage (I wouldn’t even really call it urine cause there is so little of it). It likely has old blood in it from the DIC yesterday. As one of her doctors told me – if you can see this bad of purpura and petechiae on the outside, imagine how bad it looks on the inside. We are also working to correct the massive lactic acidosis she is in, which will require us getting on top of her o2 saturations, blood gases, and sugars. Once those things are under control, we can switch around all of her med lines again and then start running antibiotics through her broviac and see if we can clear any bugs hanging out in or near that line. And THEN – once we have a better handle on the infection – we can go home!!! 😉 yayyyy!!!!!

so i may be a little ahead of myself with the home thing. But you really never know. She’s just as capable of rebounding quickly as she was of dropping so quickly.

I’m going to go try to take a quick little catnap. I am not even sure what all this says but i’m going to hit publish anyways. Hope it has helped out a few of you with your questions – if it didn’t, let me know how I can!

Your prayers are still so desperately needed, welcomed and appreciated.

 

Thank you –

 

the atkinsons

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