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