Head to toe.

In an attempt to catch up on what went wrong last week and why we are still trying to correct some of that, I’m going to do a head to toe assessment of what some of Kendall’s issues were and still are. Some of you may not understand this at all, and some of you will understand more than even what i am trying to put here. Forgive any mistakes/inconsistencies – I am sure they come out of my exhaustion and inability to understand some of what was going on last week when it was changing minute by minute. This may end up turning into a multiple part detailed description of what went on, and it may end up just being more of a “bullet point” list of things I need to remember for future reference.

This will be Part 1.

It started last Sunday morning when we went to get Kendall out of bed and noticed her TPN pump had malfunctioned overnight. It had not pumped more than maybe 50ccs (not even 2 ounces) into her overnight, but had not alarmed at us to let us know something wasn’t flowing through. Now normally this would be an issue, but nothing we couldn’t work on her from at home with extra fluids and glucose gel, things like that. However, this was simply compounding the issue of her already being slightly on the dry side from a day of walking around at a festival the day before and being dried out from that.  I set her down out of her bed and she instantly was wobbly and clumsy and complaining of leg pain, but it wasn’t anything that didn’t make sense due to the pump issues/lack of fluids.

By the time we got downstairs, she was whimpering in pain, and within an hour her pain was pretty bad. I called our nurse and we talked through a few things to try, but neither of us thought it was much more than dehydration/blood sugar issues. Very shortly after trying our intervention plans, though, Kendall’s fever had elevated to 102, and a few minutes after that, she was at almost 105. At that point I started packing things up to head up North – still thinking it was just dehydration and she would likely cool down in the car on the way up (which is essentially what she did last time we went through this, maybe three weeks ago).

Things were ok right up until about Ohare (an hour-ish into the trip), when she started this crying that i’ve never really heard her do before, but it definitely seemed pain related. I was getting more and more worried as the miles ticked by, and when we pulled into the CHW ER and i could not find a parking space, I started mildly panicking. At last a spot opened up, I got Kendall packed into her chair with all her attachments, walked in to the ER to get in checkin line, and stood behind four or five people there with “older kids with coughs”. I’m not kidding. I started full out shaking at that point from nerves? Panic? Frustration at people who were wasting the ER’s time when my kid was most definitely doing something VERY wrong? I don’t know. But luckily a triage nurse spotted us, got my name, pulled Kendall’s file from behind the desk and got us into a room.

Even once in a room, things were moving at a snail’s pace (typical for the ER), and my anxiety level was climbing. Our nurse recognized this, started pushing the doctors to come in quicker, make decisions quicker – but it still seemed like it was dragging on. I still couldn’t put my finger on what was wrong with Kendall, but i knew it was headed in the wrong direction. The doctor knew she was going to admit Kendall, and was actually questioning whether she needed the PICU or not, but was leaning more towards the floor. At this point we had no labwork back, it was just that Kendall was leaning towards sepsis and this doc knew a lot of the Special Needs program kids go to PICU. Then the nurse started taking her blood pressures quite frequently, going to talk to the doctor, coming in to bump up fluid rates, doing more BP checks, and I finally said – I need to see her labs. I took one look at her labs and knew something was very wrong and said there is NO WAY you can send her to the floor, they are completely unprepared for her if she crashes. Our nurses (by that point we had two of them in there constantly checking things) were both emphatically agreeing with me that Kendall needed the PICU and she needed it NOW. Finally we got everything loaded up and headed up.

I know God’s hand was on her even then, because our one nurse who transported Kendall had just gone through a very similar situation with his wife not two months before this. (It turned out to be major dysautonomia, one of the many things Kendall deals with.) But he kept cycling her BP on the portable machine that traveled with us. The trip to the PICU should take roughly five minutes. Kendall started crashing in the elevator. We pushed her to her room where her BP was 50/0 (yes zero, it couldn’t find a bottom pressure after having dropped and dropped and dropped for the past hour in the ER), and that’s where things get fuzzy and crazy in my memory. I remember a LOT of people in Kendall’s room working on her. I stood against the wall where I could see her and she could see me and just focused on her eyes and prayed that God would make this all better. Without trying to be overly dramatic about a situation that WAS truly dramatic – it was literally like a scene from the TV show “ER”. There were orders being called out by one main doc, another doc working on the other side of Kendall, a Nurse Practitioner entering orders on one computer and four nurses working to set up multiple IV sites and lines on Kendall. Fluids were being hand squeezed into Kendall, epinephrine and norepinephrine were started and continually being bumped up as there was no response. Her BP’s were being taken every three minutes and they were continuing to drop. Throughout this time Kendall was still alert, but was starting to talk gibberish/hallucinate. One of the doctors had to start an arterial line on Kendall. Typcially this is done under sedation – but we couldn’t risk that for Kendall. She got some numbing medication on her skin – but the digging and poking and prodding with a long needle, deep into the underside of her wrist, 12 times – that was all done wide awake. And then they had to suture it in. It was about that time that we were ALL promising Kendall any playdoh craziness she could dream up. Anything to get her mind off of the spurting bloody horror show going on, get our minds off it, feel like we could make it better for her somehow.

during this time, Kendall began going into a worsening “DIC”. It’s not the kind of thing you want to google, but know that if you do google it, Kendall’s was that bad. She started breaking out in petechiae in the elevator on her face, and by the time we were getting her adjusted and hooked up to things and attempting to place PIV’s and arterial lines – there was blood everywhere. It was oozing out of her pores where the petechiae were, out of her stoma, around her broviac line….everywhere. Then her feet started turning dusky, then dark maroon, then nearly black. And then the blackness started spreading up her legs. Everywhere she had already had a bruise started turning this eery blackish blue color and spreading. I’m glad at the time I didn’t really realize what was happening, I just kept focusing on her eyes and face (at that time I was laying over her shoulders so they could get the art line in.

The doctors were continuing to call out orders for the pressers and fluids in an attempt to get her BP’s up out of the extremely low range they were in, I was just trying to keep kendall focused/coherent/awake. I leaned over that hospital bed in the most awkward position ever for almost three straight hours while they worked away at her. At one point someone asked me if we had religious preferences and I said no. They asked if she had been baptized and i said no. Then they asked if we wanted the chaplain to come up and do it right then and I’m not even sure where my mind was at that point but i think I had an inkling that they thought things were pretty bad and I remember firmly telling them NO – she did NOT need to be baptized because she was going to be JUST FINE. Then someone said Dr. Okun was there. I knew this was probably another bad sign. He is one of the Special Needs program docs, the one i had just talked to earlier that day on my way up to CHW. It was 2 am. We’ve been admitted plenty of times that late – and never once have any of our docs come to the hospital to help check us in or check in on us. He came and put his arm around me and just calmly asked me how she was, how i was, where was ben. I had tears in my voice and eyes as i said the big girls needed him tonite but he would be here in a couple days. He suggested that maybe i call someone to stay with the girls and get Ben up there quicker. i remember being  fiercely resolute at that point that i was NOT going to hear anything remotely negative and i said again that kendall was going to be JUST FINE and Ben did not need to come up in the middle of the night. I think I said something to him along the lines that Kendall needed positive thoughts around her right then, and any negative thoughts or unbelief in her strength could be discussed outside of her room.

i think my brain was grasping that things were going very south very fast – but some protective mechanism kicked in and is making a lot of the details fuzzyish. I think I finally collapsed on the couch around 4 am after texting ben that it was like a nightmare scene from ER and that she just needed a lot of prayer. We had gotten a positive culture called in to the nurse 6 hours after it was drawn – so at least we knew what we were fighting. Gram negative sepsis.  I knew this was not good, but my faith in Kendall’s strength and God’s faithfulness were unwavering that night as i went to “sleep”. I think we were back up at 6 am with more things going wrong with Kendall than were going right, and i remember thinking she looked like the stay-puft marshmallow man. All of the fluids/steroids/pressers had caused her veins to leak everything into her tissues – and she had gained four pounds in just a few hours (they weighed her on her bed so they knew they were giving her the right doses of all the meds they were ordering).

one of the “amazing” (only because i’m used to being up on the floor where it takes at least three months for one dose of tylenol to be ordered and sent up from the pharmacy) things about being here in the PICU – Kendall had a pharmacist right outside her door who was getting the orders for meds and running two doors down to the pharmacy, mixing or grabbing the meds, and running them back to the room. We had one huge cart and box here in her room just dispensing some of the more common meds (I’m thinking this may have been “the crash cart” but again – my brain was in protective mode over that.)

When I think back on how many people were in our room for hours after hours – I wonder who else was taking care of the other kids on the unit. It is probably a miracle beyond miracles that this kid did not code, but I think she was pretty gosh darn close to it. It makes me nauseated to think back on that night, and yet I feel like my brain needs me to go back to that night, ask the doctor the details, process through it so it is not stuffed away in some dark recess of my mind. i have a lot of thoughts and feelings about it that are all kind of mixed up but are below the surface. I am sure “the fallout” will happen at some point after we are home. For now I am still working to protect her healing space – keep it free from negativity and focused only on positive thoughts, lots of prayers, HOPE and above all healing. If I even think I need to go cry, I go out into the hallway.

I’ve digressed a little.

I think I’ve rehashed enough of Night 1 – and if you made it through reading it all, thank you. Hopefully none of it made you too queasy. i felt like I needed to get it all out. I’ll work on Part 2 now, which is more of what started to go wrong Monday morning, and a little bit more of all the medical=ese behind why she got so sick so quickly.

T.

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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