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.

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Comments

  1. My heart goes out to you. You are one strong mommy. Little Kendal is in my prayers. Glad she is doing better . Much love and.prayers…xo

  2. Thank you for posting this, I have a medical background working with special needs children. I would never ask exactly what was going on in respect for you because at the wrong moment that can be too much. She really is a little miracle. Way to go on staying positive!!!!! She fights so hard bc she has a family that fights just as hard as she does beside her. God bless!!!

  3. Wow…
    I’ve been there for rapid responses for my daughter with Mito, and I can guarantee this is hard. And painful. Mom, you probably feel like a dented can of pineapple right now. I offer virtual hugs and real prayers for you and Kendall. Rest and love on her and your other girls.

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