How do you say thank you to someone who has saved your child’s life?
How do you thank someone for using every ounce of their stored knowledge, of experiences past both good and bad that play into current circumstances?
How do you say “thank you for not giving up, even when it seemed like we were fighting an uphill battle”?
Are there enough words to express your gratitude to the team of doctors, nurses, and ANP’s who stood beside your baby’s bed and called out orders and brainstormed new ideas and found impossible to find veins so life-giving meds could be administered in the face of overwhelming septic shock? To thank those doctors for taking the time during one of the scariest episodes of your life to explain a little bit about what was going on so that in your fear you could try to absorb and understand a little bit of the chaos surrounding you?
i don’t know how to do this. I do not know how I ever CAN thank them all for what they have done.
Our team here on 5West, in the ANP unit, has been a team of miracle workers.
My daughter was seen in the ER on Sunday May 5th, admitted into a room at 7:05. Her typical sepsis workup began, albeit a little slower than usual due to a packed house. My mom instinct had started going crazy somewhere around O’hare on our 3 hour drive north, and by the time we were sitting int he room for an hour with no more than a nurse coming in to get basic history, I was near panic. Once the PA, Matt, came in, he quickly assessed my panic level coupled with Kendall’s wonky presentation, and went to get his attending. Even through this time, the belief was that we were still dealing with sepsis, and plans were made to admit us up to our regular floor (11West). Labs were run, X-rays were taken, and vitals were cycled. And cycled. And cycled some more. At this point, near 9:30, we had two nurses in our room (I’m not sure if it was shift change, coincidence, someone else’s instinct, or just part of the sheer miracle of that night). Both nurses were quite unhappy with the vitals, mostly the BPs we were getting on Kendall. All I knew is that she was going downhill in a way I had never seen before, and I told the nurses I did not feel like going to the floor was the right choice. Matt came back in soon thereafter and said that he could call PICU for a consult. Antibiotics were running by this point, and things were continuing to get worse instead of stabilizing. Garrett, one of our angels that night, went to find Matt and the attending (whose name escapes me), and made an emphatic plea to get PICU down there NOW. The attending came in to discuss some of the labs with me, and when I asked to see them myself, I knew something was very very wrong. I didn’t know what, but I knew my daughters body was definitely not reacting in any way that I had ever seen before. She herself was starting to be more lethargic, spiking a high temp and having what we believe were febrile seizures. To say I was becoming scared is an understatement.
Things finally began moving quickly, and we were given a room on the 4th floor PICU, but that was quickly changed to the 5th floor PICU. i am not sure how or why that change was made, other than to say that God KNEW where my child needed to be. In the elevator on the way up to 5th floor, Garrett was continuing to cycle Kendall’s vitals, and they began bottoming out in the elevator. He was very concise in explaining to the admitting team, all of whom were waiting in Kendall’s room for her what was happening, and they hopped into action.
I’ve had a medically challenging child for 4.5 years now. I know a lot. I daresay I know more about SOME things than many residents do. I know my daughter like I know the back of my hand. But I did not know what was happening right then. I do not know if every child is greeted by four nurses and two doctors and an ANP upon admittance, but Kendall was. I do not know what made this all happen – if it’s protocol, or just a smart doctor who could read between the lines of what we were seeing in the ER. But I know that we are talking about timing that was down to NANOseconds changing the outcome drastically.
The admitting team worked RELENTLESSLY on Kendall for three hours. Three long hours of horror and blood and medications and words that will have scarred my momma heart forever. Severe septic warm shock. Severe DIC. Severe acidosis. Not responding to fluid resuscitation. Extremely high levels of pressers and steroids. FFP and cryo and PRBC transfusions one after another after another. Ultrasounds to find veins and blood oozing out of every pore and stoma on her little body. Asking if I wanted her baptized right then and there. Our doctor from Special Needs coming in in the middle of the night to hold my hand and make sure I was doing ok.
My brain is still in protective mode. I cannot fully digest all that happened that night, or the days that came afterwards. The doctors and nurses on this floor working to pull my daughter Kendall back from the brink of death deserve medals, TV shows, million dollar checks. Far more than any “survivor” deserves their fame and recognition, these doctors and nurses and ANP’s deserve it. They are the reason my daughter is a survivor. Through the acidosis, ARDS, septic shock, DIC, necrosing tissues, intubation, bedside surgery – and so many more issues I cannot even think of right now – this team stayed by Kendall’s side, by my side, by my husbands side. When her sisters came to visit her, wondering why their sister was so sick or why she had tubes coming out of her mouth and every orifice of her body seemingly, they were by their sides too.
I am not sure I will ever be able to fully put into words how grateful we all are to have our Kendall back.
I need to find some way to thank them, to grab them all in a huge hug and tightly hold them to convey my utter gratitude that goes so far beyond words. I know, though, that most of them would just scuff their toe in an “aww shucks” gesture. It’s what they do, right? It’s why CHW is #4 in the nation. Because every day, they save lives. But on this day, they saved my daughters life, and for that, we are eternally grateful.
I will forget names – I am sorry, it is somewhat a blur still. But these are the ones who stand out the most to me for all they did, and are still doing, for Kendall Quinn.
Dr Atwood – you stood in the back of the room with me calmly calling out doses of epi and norepi in a desperate attempt to get Kendall’s BPs up out of the “palp” range. Your calm demeanor and easy way of explaining to me what was happening without overwhelming me meant the world to me. You could see the fear in my eyes, could see me begging you to not let anything bad happen to her, to make it all better – and you resolutely answered that challenge.
Dr. Bane – you knew that art line needed to go in and you weren’t gonna let DIC and her crappy veins defeat you. You sutured that line into my fully awake and aware child’s arm and you were calm and collected the whole time. You brainstormed new meds and fluid bolus doses with speed and confidence and were instrumental in stabilizing Kendall that crazy night.
Kari – I cannot say thank you to you without tears filling my eyes. Not only did you help stabilize Kendall that night as the ANP on duty, but you worked tirelessly over the next few days to make sure she did not go down again. You watched her labs, listened to her lungs, watched her monitors, and helped guide the team to the right decisions. you have a quiet fierce strength about you that was just what my daughter needed.
Lindsey – I have not seen you since that night – but I know your amazing skills as a PICU nurse were a LARGE part of why she survived that night. Your ability to set up a quad fuse in 38 seconds flat amazes me still.
I know there were two or three other nurses in and out of our room that first night, along with a pharmacist who was probably getting a week’s worth of exercise running back and forth. To all of you – thank you.
Katie – another ANP hero. You were raked over the coals on rounds more than a few times, but you hung in there. You put all your knowledge to use trying to make sense of Kendall’s crazy labs that most definitely did not make sense. You knew when to push and when to let Kendall rest. you knew when to placate a very nervous mom who just wanted to spout random medical issues at rounds, and when to just let me talk and then flash your beautiful calm smile and move on to the next topic.
Jill – yet another ANP hero. the exasperation in your voice as we were ordering our 27th (or thereabouts!) dose of pentobarb for my child who refused to stay sedated made me realize that you were all in. You wanted her to rest and heal almost as much as I did, and that is saying a lot. You are amazingly smart, and I am so glad you were on our team.
Dr. Scanlon – I am convinced that any other doctor, for those first few hard horrible days, would not have been able to do what you did – save our Kendall. I know I probably shouldn’t be giving you any more of a big head – but then I think, no. Your supreme confidence in your skills, your knowledge, your training, and your instinct ARE a large part of what saved her. You told me on rounds one morning that she was the sickest kid on your team (probably on the entire floor), and that she was taking up much of your brain space trying to figure out what we were missing. I knew then that we were going to be ok. Any doctor who works THAT hard to figure out a kid is a spectacular, life-saving doctor. I saw you standing at her door, just looking in at her monitors with that furrowed brow, cup of coffee in hand, a look on your face that told me your brain was going three hundred miles a minute through the vast files of knowledge in your brain of “severely septic kids”. Your gentle way of leading us up to the moment of intubation was just what we needed. It wasn’t a shock, it wasn’t a “bad thing”, it wasn’t a sign of things getting worse. It was just what we needed to do right then. And then your concern over how much more she was working, how much sicker she was getting – I could see these things on your face. You told me from the beginning – “I’m a straight shooter. If she’s not getting better, I’ll tell you. I’m about as subtle as a two- by-four.” I am sure there were moments you thought you would have to walk into our room with that two by four. But you never let ME get panicked. You never made me feel like you weren’t 100% in charge of her care 100% of the time. You knew she was a fighter and you let her prove her fight to us. And when she needed support, you gave her the support she needed. I will never forget the look on your face that last night you were on service – you were also on call. As I was growing more concerned, you were too. I don’t think you were ever more than a few feet away from her room that entire night. That comforted me in a way I still can’t put into words. Maybe it should have scared me to know that you were just as worried as I was – but comfort is the feeling i remember.
You took the info you observed, the info from the ANP’s and our nurse, and you even took input from me – some scared to death momma who just wanted desperately to try to retain some sense of control or understanding over the events spiraling out of my control. You listened, and you explained and you used crazy analogies that even I could understand and you helped me gain back some modicum of control. I didn’t understand her blood gases, but I understood that she needed more boxcars. In a word – you were nothing short of amazing, and I will forever owe you a debt I cannot repay. You saved my baby’s life, and I know it was God working through you. Do you know how many people were praying for you and over you those nights? I hope you do. I hope you are never faced with having to place the life of your child in the hands of someone else. But if you ever are, I hope that that someone is as wise, confident, and amazing as you are. These words are so inadequate, Dr. Scanlon, but thank you. Thank you for giving me back Kendall.
Saving the most emotional for last – dear Rachel.
In spite of the efforts of everyone else – Kendall would not be here in the shape she is in without you. You are so far beyond smart I cannot even think of a good word for it. It is that wisdom that comes from your years of experience, but even more so from some place deep inside you, that is why Kendall is still “Kendall”. When I think of trying to tell you thank you, I pretty much just start crying. There’s so much to be wrapped up inside those words. You took my little girl on for the challenge she was and you fell in love with her like she was your own and you fought as fiercely for her as I was. You offered your thoughts to the team and got things done for Kendall that I didn’t even know how to ask for. You knew what she needed hours before anyone else even thought of it. You talked Ben and I through every little thing that was going on, shared your experience with us, helped us find our “PICU voices”. You could see how much she was struggling to breathe, and how much we were struggling to accept that she was not doing good and you helped the doctor and ANP’s walk us through what we all needed.
When I walked out of the room as the intubation was going to begin, we hugged and I told you “take good care of her” and you said “ i promise i won’t let anything happen to her, i’ll take care of her”. And we both cried a little bit. You knew how much I needed that hug, how much I needed to know that someone else was there and understood. When we came back in to our baby looking very different with the tube in her mouth and the machine breathing for her, you explained everything to us, you helped me brush her hair, you helped me realize it was still Kendall in there, she was just asleep. You spoke to Kendall through her intubation as if she was awake and conversing back with you. Your care and empathy for my child and for our family were amazing throughout that horrible time. When Kendall would wake up above the sedation and be fighting against that tube, you would instantly lay near her head and whisper things that I can only imagine were things about princesses and peaceful dreams. When I could not take the sight of her fighting and arching against that tube anymore, you took over as the voice and hands my child needed to hear. You would stroke her head as if she was yours, and for those moments I am so very grateful. When my heart was breaking in two as a momma and I needed to look away, you stepped in and took my place. Throughout that week, you did for Kendall what i could not do. You helped make her better.
I know you do this all the time. I know you are one of the most amazing nurses this hospital has. I know you don’t think you did anything outside of the ordinary – but for me, you did. For my daughter, you did. You are the reason she never floated too far out to sea away from me in those drug-induced dreams while she was sedated and her body was fighting a huge battle. I will never ever ever be able to thank you enough. You will forever be a part of Kendall’s story. Not a day will go by when I do not think of you and hope you are blessed. I cannot even find the words within me to utter my thankfulness for you and all you have done. All I have to offer are the sobs of a momma who is so relieved to have her baby back from the depths of that bad place, and the undying gratitude. Your fierce but quiet strength, your calmness in times of chaos, your beautiful smile no matter what was going on – these are the legacies you will leave us with from this stay. I pray that my daughters all turn out to be as amazing and wonderful of a person as you are.
At the end of the movie “Saving Private Ryan”, the main character returns to the graves of the men who died saving his life. He says to them, as i say to all of you who saved Kendall’s life this past week:
I tried to live my life the best that I could. I hope that was enough.I hope that, at least in your eyes, i’ve earned what all of you have done for me.
Thank you is not enough, but it is all I have.
Thank you for saving Kendall, for bringing her back to us. For helping her survive in the face of some really crappy odds, and do it courageously and with the ferocity we see her live every day of her life.
As we say on the Kendall Krew, Keep on Keepin’ On.
forever gratefully yours,
terra.
the crazy mom in W508.
So when I left off part 1, I had just crashed on the couch and Kendall was stable-ish.
She continued to need high doses of the pressers (medications that work to keep your heart pumping and to keep your veins constricted enough to hopefully keep the blood/fluid in the veins and out of your tissues), and was receiving multiple units of FFP and cryo throughout that night. FFP and cryo are blood products that are specific components of your blood designed to help/aid in situations like DIC.
I was awake by 6 – just not able to sleep, too much activity going on, too worried about everything. We met the doctor who i will forever be grateful to for saving my baby that morning. He told me she was better, but nowhere near out of the woods. He explained to me that the septic shock had sent Kendall’s organs and vessels into a tailspin and that all the medications were working to try to keep her heart effectively beating and stop pushing everything out to her tissues. Her labs were “a mess”. She was in severe lactic acidosis which was causing some respiratory issues (for those who know, her levels were in the 40’s.). Everything we were trying to fix was just making something else worse. Dr. S did an amazing job of explaining to me what i needed to know, but making sure not to overwhelm me with things I didn’t need to know right then.
It was blatantly obvious that Kendall’s already crappy veins were not going to handle the stress of having all the multiples lines running into them. We had bi-fuses and tri-fuses everywhere, and still were having trouble having enough spots to run in all the life-saving meds, antibiotics, fluids, etc that she needed right then and there. Kendall was put on the schedule to go have a PICC line placed, possibly two. We were unable to touch her central line at that time because it had a quad fuse (four lines) lumen coming out of it running the pressers and steroids that were all that was keeping her semi-stable. Her arterial line was precarious, but oh so necessary, and only certain things were able to be run into that line. They were also running constant blood pressures off of that line because we needed to make sure the meds were doing their job. Another value on the monitors that we’ve been watching all week has been her CVP – central venous pressure. I don’t fully understand why our doctor was so worried/upset over this number, but i know he was. It somehow indicates the backup of blood in the liver because the heart is getting overstressed, blah blah blah. Anyways, we were hoping for a 7 – that is apparently “normal” in most normal folks. We were in the 100’s.
anyways – going down for a PICC line was a necessity. By this time we were having to use some strong sedatives and pain meds to keep Kendall in a calmish state, but trying to balance that with not suppressing her vitals any further than needed. When they were about to take her back for the PICC she was starting to hallucinate and kept telling me and her nurses to “get dat! get dat sing mommy! it’s right derrr!!!!!” reaching for some imaginary thing in the air above her. She was talking very strangely – and by that I don’t mean what she was talking about, but rather how her voice was. It was like there was so much pressure everywhere, she could only use single syllables in place of words. Luckily once she came upstairs from the PICC procedure, she was mostly conked out for the afternoon. But had started to be oh so very puffy. Almost unrecognizable.
Throughout this afternoon and evening, her doctor kept coming in her room, checking the big lab/trends board, pacing, thoughtfully pondering the numbers on the screen, then pacing back out of her room. Things were changed and tweaked, labs were being constantly ordered and then more things were tweaked based on those results. This board thing is amazing. It spoiled me. It is a 42 in flat screen TV that is touch screen. So you can tell it you want to see all the lab results for the last 24 hours, or you want to read the culture reports, or you want to see a graph of her fever curve and I’s and O’s (ins and outs, or how her fluid status is). For a micromanaging lab hoarder like myself – it was a dream come true. I was able to see within minutes how bad her labs were, or what the doc was worried about or if her acidosis was resolving. (They told me later i’m not supposed to actually touch it, but since I managed to not break it – yet – they were willing to overlook it!)
Kendall ended up needing a full blood (PRBC) transfusion at this point, and ended up getting two full units. Considering the absolute FIGHT we had to go through to get Kendall one a few weeks ago, I knew things must be pretty bad. however, I did find it mildly humorous that the doc referenced “the anti-transfusion movement” going on at our hospital. He was seriously just an amazing doctor – he could make me laugh or at least smirk even while telling me absolutely horrible news about my child and her medical status.
I know this is kind of getting disconnected here – but it was a long crazy week! By that afternoon, Ben was up there with me, and the girls had gone to a friends house, all together, which was a huge relief. I remember that we were both exhausted and decided we would take turns being up with her and sleeping. I took the first shift, mostly because I could not keep my eyes off of her and the monitor. My mom sense was still on extreme high alert, and even though I was exhausted i could NOT let myself rest. At around 2 I think I finally came and crashed on the couch again, and Ben got up and stood bedside with her for a few hours. I know I could hear her all night whimpering and thinking – I don’t think she’s breathing right – but I could hear Ben trying to get her morphine so I thought maybe he was on the right path. i was back up again at 6:30 and saw that he had made her wear her oxygen again. In spite of that, and at 2 Liters of support, her saturation numbers were crappy. She was in pain, grunting and struggling to breathe (even though it was hard to tell because she was so pudgy from all the fluids), and very mad at the cannula on her face. she kept tearing it off and would drop to the low 70’s for her sats. The doctor and ANP’s (nurse practitioners, huge in Kendall’s care here in the PICU) were in and listening to her, and all commenting on how clear and fine she sounded, but could not figure out her crappy sats. After an hour or so of this and watching her decline so quickly, a STAT chest x-ray was ordered. Within fifteen minutes of the x-ray machine pulling out of our room, they were in with a machine setting up to start Kendall on bi-pap support. This all took a while to actually get set up, but by the time they did, Kendall was having none of the huge mask on her face. she didn’t have a ton of strength left to fight us, but she was crying which was making the pressure monitors go nuts, and her sat monitors go nuts from dropping. The respiratory tech was in here constantly trying to mess with the settings, turning this, tweaking that – nothing was helping. Morphine and Ativan were given, and the crying stopped, but she was still struggling for breath.
Dr. S came in with the whole team and explained to us that she was still working very hard, sending herself into a respiratory alkalosis (worse than the metabolic/lactic acidosis we were still struggling to correct), her blood gases (which i still don’t have a good working knowledge of what’s what) were crapping out, and that we probably needed to discuss intubation. We came up with a plan to give her an hour to prove to us she could turn it around.
I think I knew in my mind we were headed there. His words did not come as a surprise to me, but rather almost a relief. I was watching her work so very hard to breathe, and I was nervous and i was scared that soon there would be nothing left for her heart and lungs to do. I’ve seen this kid deal with pneumonia after pneumonia, i’ve watched her choke on her food and have scary moments. I’ve watched her go slowly septic and look pretty gosh darn sick. But I have never stood there helplessly watching her try to slip away from us, unable to do anything about it. I felt confident in the plan to give her a chance though, because if anyone could pull herself out a tailspin, it would be kendall. Our nurse Rachel was in there the whole hour and fifteen minutes of the “trial”, her concern for Kendall evident on her face.
And finally, i saw the team gathering outside her door and I knew. I knew what the answer would be.
“I think it’s time we give her the break she needs. It’s time to intubate her.”
to be continued…
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.
My baby’s smile.
such a small thing – i admit i took it for granted many times.
But seeing it again, after 7 long achey days – was so amazing. Truly amazing.
I find myself torn between wanting to rehash down to the most minute details what transpired this past week, and on the other hand wanting to never ever relive this heartache again. our nurses are so good, not only with kendall’s high level of care, but with my high level of emotional needs. They tell me that I need to and deserve to fully process it – to hear the scary words spoken out loud so that I can not be afraid of them, to know just how truly miraculous her recovery is right now and will be in the weeks to come.
I think I will try to sit down and talk with the admitting doctor up here on the floor, the ones who literally saved her life that night. i think I need to. Even though i already kind of know what she is going to say, i have a vague sense of how very bad things were that night – I need to hear it said out loud and I need to say it out loud.
But not today, not right now.
Today we are working on getting Kendall stronger.
Today we are looking FORWARD, moving onward and upward!
Kendall has been receiving physical therapy in the hospital since Saturday to try to help her muscles regain their tone and remember how to work together to help her sit up, move her legs, reposition and support herself, and get back to the walking, bouncing, crazy kid she was a couple weeks ago. PT involves doing some leg exercises (she hates them) and then sitting up without the bed or pillows around her for small increments of time. She made it a total of 10 seconds on Saturday, and 10 seconds yesterday. Today we will probably try for 15 or maybe 20 seconds. I tell you this to give you a framework for how very much this infection took out of her. She is improving FAR beyond everyone’s expectations – but this will be a long road. Or so they tell me. I know my KQ though.
She has this DRIVE for life that I don’t think i would have, faced with all she has been faced with. She does not know that she “should be” pretty sick still. She does not know that an X-ray like hers would have most kids poked with chest tubes to drain the fluids and possibly still intubated for breathing assistance. She just doesn’t let anything hold her back. And I know this about my amazing little girl.
Even when she is “well”, and she has to wear her backpack around all day, or get hooked up to multiple tubes at bedtime, or can’t go outside and play because it’s too hot – she doesn’t complain. She doesn’t ask “why me” or “why don’t sissies have backpacks and tubies”. Those days may come – but for right now, Kendall is just happy with who she is, in whatever form she currently is in. She is just filled with this joy and zest for life that is unrivaled, even in my other girls. They are all amazing girls for all they go through, don’t get me wrong. But Kendall’s FIGHT to live her life is her miracle, her legacy.
I just sit through rounds listening to all of her team be SHOCKED at the amazing progress kendall has made and is making, and nod my head in an “i know! i told you so!” way. She gave them all a shock last week with how bad she went downhill so quick, and they are just as shocked this week at how good she is doing. I credit her progress to a few different things: a.) it’s just who Kendall is, no two ways around it. b.) the amazing efforts of the team here and their knowledge of how to handle a crash of Kendall’s severity, and c.) the massive amounts of prayers covering her from around the world. None of this would be possible without all three of those things.
I hope, more than anything, that as you read Kendall’s story this past few weeks, that you know that. That she IS a strong amazing little girl, that she is in the hands of some world-class amazing physicians, but that most of all, the glory and praise belong to God. I am not quite ready to mentally handle the reality of what all transpired last week, maybe in a few days or few weeks I will be, but what I do know is that Kendall’s recovery is truly miraculous. What purpose God decided to spare her for, I do not know. I hope it is because through her, many people will see God at work in their lives. I hope her story inspires you to hug your kids a little tighter, relax a little on the “small stuff”, enjoy time as a family together. i hope that by her example, you feel like you can push through that hard task staring you in the face. I hope because of her, you too are able to look adversity in the face and say “ I dare you to come after me. Just you try it.”
Whatever or however Kendall and her story have touched you – I’d love to hear it. I have heard from so many of you through cards, emails and facebook messages. Your stories touch me at my soul, give me a sense of strength and pride that give me the stamina to keep going through the exhaustion – physical, mental, emotional – that threatens to overtake me many times. So please feel free to share!
I need to get to an update about how her body is holding up physically, system by system, so i’ll wrap this one up for now.
Thank you for reading. Thank you for being here, being a part of our journey.
Keep on Keepin’ On – and remember, Hope is a Good Thing.
Terra.
a letter to my dear kendall quinn~
You have tried your hardest to scare me to death this week, kq. You have done a pretty darn good job of it.
You have embarked on a journey far beyond what I would have ever hoped for you – and though you have wandered far out to sea, you have always been in sight of the shoreline where I stand. I have thought I had lost sight of you a time or two – a wave would crest or my eyes would play tricks on me and I would panic thinking “she’s going away from me”. But then I would squinch my eyes tight, will you to come back into view, give me some sign you were there – and there you would be. And there you are.
You are still floating out there in the sea of “somwhere”. I hope you are having good princess playdoh dreams wherever you are. I hope there are no monsters chasing you down, waiting to steal you away from me in those dreams. I hope you remember none of those dreams when you wake up. And i hope you wake up soon.
I miss your voice. I miss your giggle. i miss the things you say and the way you say them. Your sisters and your nurses all laugh at me because I can do a spot-on Kendall impersonation, complete with crazy made up words (like “hosta-bull” for hospital and “hucka-wipes” for your beloved alcohol wipes. But I want to hear those things come from YOUR little mouth. I miss your beautiful blue eyes, shining with just a hint of the mischief you are always cookin up. I miss the way you ask me to tuck you tighter at night when you’ve been all hooked up. I miss hooking you up at night. As much of a pain as it can be sometimes to prepare your TPN, mix your meds, keep your supplies straight, hook you up to four gajillion things every night when i’m tired and just want to sit down….i miss it all.
People tell me that our lives are crazy. That was BEFORE this new level of crazy. Now I will be happy to go back to our “normal crazy”. It’s all about perspective sometimes.
I broke down crying the other night because the thought occurred to me that you might not be awake on Mother’s Day. It’s coming up in two days. I know you haven’t had time to go shopping for me – you’ve been a little busy being a diva here. But you can give me the greatest gift ever by being awake – breathing on your own again, tell me you love me. that’s all I want.
And if you have to give it to me a day or two late, that’s ok too. I mostly just want YOU back. Back here safely on shore with me. I have waded in as far as I could, trying to anchor you to me, not let you get too far out. I have watched you endure the roughest seas you ever have, and i have been stuck here while you are out there. But i will not lose sight of you. I will not leave you. I will not let you leave me.
Keep on fightin’ baby. You got this. I know you do. You’re amazing. SO many people are praying for you, for us. It is very awesome to know that God is hearing every single one. And He is holding YOU in the palm of His hand. So i know you aren’t really alone out there, wherever you are. Like I whisper in your ear every night of your life – “I love you, Jesus loves you, and Jesus is always with you.”
“So we’re ok, we’re fine, baby i’m here to stop your cryin
chase all the ghosts from your head – i’m stronger than the monster beneath your bed
smarter than the tricks played on your heart.
Look at them together then we’ll take them apart
Adding up the total of a love that’s true -
Multiply Life by the Power of Two.”
- Indigo Girls, Power of Two
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benjamin - Amazing, Terra…Simply amazing
Marjorie Lucinda Baab - Amen and pass the kleenex! So glad Kendall is back and even plays pretty good soccer with building blocks! You’re the best Kendall Quinn!