leaving.

my thoughts are random and jumbly right now, so please forgive me if this post is hard to follow. I am ecstatic that we are all working today on plans to finally be leaving this place. But what will it mean when we leave?

I had a very very very hard conversation with Kendall’s doctor on Tuesday afternoon.What he told me didn’t surprise me in any way, but saying the words out loud are not any easier. Kendall is going to die from another infection like the last two she’s had. it may not be the next one, or even the one after that. But at some point her body will succumb to the war that wages in her body between the bugs and her blood. I almost watched that happen before my very eyes this last few weeks. That Friday night that they removed her line – I don’t think i ever really addressed it here, or on facebook, or much of anywhere really – but Kendall was in a very very very scary place for that entire night. I need to do a separate post on that night because it is full of emotions and pictures and thoughts and feelings that need to be preserved but not quite ready to be processed out loud yet.

So to hear that she could die from another infection – not shocking. i’m not stupid. i get the dire straits my child is in.

BUT – I also believe in a huge God, who is one hundred percent in control of Kendall’s story. HE will be the one to write it. It is hard – so very hard – to cling to that faith. And yet, right now, that’s really all I have. Hope. And Faith.

We had another long meeting yesterday afternoon that was with more of her team and was full of much more hope. Plans were created, meds were tweaked, understandings were reached. We all know that we HAVE to buy Kendall some infection free time. We have GOT to break this current infection cycle. The cold hard truth is that there is not much we can do to PREVENT her gut from spitting out these bugs. We could maybe stop the klebsiella by killing it back with nonstop antibiotics, but we would put her at huge risk for a different bug to come roaring in and do the same damage. One of my main concerns is that there is a “hole” or leak/tear somewhere in kendall’s intestines that are allowing her body to leak bacteria out into her bloodstream at a faster rate than the average person, even the average person on TPN. And her doctors told me truthfully, there likely is. Any one of us could be walking around with tears in our intestinal mucosa that allow bugs to periodically translocate. But since most of us don’t have plastic residing in our heart to attach to, we don’t get deathly ill from it.  So kendall’s issues are likely a multi-pronged issue. She likely does have a VERY thin/weak intestinal wall from years of it’s “dysfunction”. Due to the way her body doesn’t always move food/formula though, it allows some “pooling” of lots of bacteria to occur. And lastly, when your gut isn’t healthy, your immune system isn’t healthy. So she has just pretty much become this perfect little storm of “sepsis” on a near constant basis.

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I think the biggest take-away from our meeting yesterday is that her team is committed to helping ME learn to interpret Kendall’s early signs of infection better. We KNOW she is going to spill some bacteria out. And her body HAS been showing us, albeit in ways that normally wouldn’t remotely raise a doctor’s eyebrows in the least, that it is fighting against the bugs, for a while before her eventual “crash” occurs. We may be admitting Kendall to the PICU quite often over the next few months for “tune-ups” or “rule-outs”. Traditionally, we have tried to handle some of Kendall’s little “episodes” at home, and clearly her body is showing us that it no longer has a tolerance for that. Now that is not to say that we can’t get her BACK to a good baseline, and of course that is everyone’s hope and goal – but in the meantime, we are going to need to baby her for a while in hopes that we prevent the overwhelming sepsis from occurring. Once we can get her stronger and out of this infection cycle, we will be working towards REALLY pushing her gut to tolerate enough fluids that we can look to get the line out. There isn’t a whole lot of optimism that it would be out once and for all – but everyone agrees that if we can boost her nutrition to an acceptable level, we can allow her to limp along for a while without a line. And just try to stretch out the times where she can go without plastic (and therefore life-threatening infections) in her body.

Will this all work? We don’t know. But again – we have HOPE that we are doing enough to support her body with a few new meds/better fluid support, and we her family have FAITH in a God who can move mountains and who can certainly move some little intestines.

So I am leaving this hospital a different person.  I’m leaving with a different baby. We are leaving in a very different place. Circumstances and things we’ve seen and lived through have changed us.  I used to be naive about just how “cyanotic” one could be and still be alive. I used to worry about my child’s oxygen saturations sitting in the low 90’s. i’ve now realized that sometimes you are happy with the 70’s. I used to not have to worry about things like fluid overload and kidney failure and organ perfusion.  i had a sick kid, a medically complex one even, but I didn’t have a SICK kid

And while I believe that the fighter that she is will emerge from this place and be stronger than ever – it is going to be a long road of recovery. it will continue to be two steps forward, one step back.  it will require that all the worrying and and lab-reading and micro-management I already do for Kendall gets kicked up a notch. It will likely require a few more disruptions to family plans and “normal” life. It will have some scary “is she getting really sick or only kind of sick” moments. 

But i refuse to give in to those fears, those dark places that threaten to pull me down.  I HAVE to believe and be strong for Kendall, for my family. i HAVE to place my fears in the hands of God and turn them into FAITH that the big picture is already in place. I choose to believe that there is a bigger story at play here than just my little world. The messages and cards I have received from so many of you on facebook, or in the mail – they tell me that this is true. Kendall is reaching people I could never have hoped to reach – simply by putting a smile on her face every morning. If she can do that, I can do that.

So that is what we will do. We will keep on keepin’ on.
Today has been one nonstop merry go round of discharge planners, doctors, nurse practitioners, nurses, trips to the car – I’m dizzy. Everyone is VERY on top of every little detail for going home this time because i think EVERYONE understands the stakes if a mistake is made. Kendall has two nursing agencies, five pharmacies, two therapy providers and two DME (provide medical equipment and supplies) that need orders sent to them, double checked, confirmation of delivery given.

At the end of the day though, things should be set for Kendall to finally go HOME. It is so surreal to even say those words because it has turned into Groundhog Day up here where we just keep doing the same things in the same space over and over and over again.  But sure enough, at some point late tomorrow morning, Kendall’s last dose of medication will finish, and we will unhook her from all her monitors, and we will settle her into her chair and we will walk out the doors of West 5 PICU. We will get in the elevators and go down to the skywalk and go out into the parking garage where Kendall will breathe fresh outdoor air for the first time in nearly a month. I will gingerly settle her into her carseat, and pack blankets around her for support since she’s still a little wobbly and her seat is a little less supportive than she probably needs. We will put her onto our home monitor and I will load the rest of our crap months worth of stuff into our car and we will finally finally finally be headed

HOME.

such a magical word. 

i am counting things down already. Only one more night of unrolling my mat on the boxes of bliss. only one more shower in the cramped little no-water-pressure shower in the family room. Only one more super ridiculously overpriced coffee, Only one more night hearing the reassuring, constant, steady-toned beep-beep-beep of Kendall’s heartbeat nonstop.  And yet – it’s only one more night of the “safety” of the big towers with all their medical monitors and devices. One more night of having our very own pharmacy steps away, with all the magical medicines that will keep my baby safe and alive if she tries to pull sassy stuff. One more night knowing her awesome team of doctors is just down the hall in case we need ANY little thing.  One more night of my big ipad on the wall revealing the intricacies of my baby’s cellular information via labwork and vitals in cute little graphs and charts right at my fingertips. It will be both wonderful and hard to leave this place this time.

I hope that all of these changes have made me a better person. i hope that i have more compassion, more patience, more appreciation of all the wonderful amazing “little” things that make my life worth living. i hope i hug all my babies more often, tighter, longer now. I hope I remember to look in their eyes and tell them all how amazing they are. i hope I dont let the sleepless nights and the burden of being Kendall’s doctor/nurse/advocate make me grumpy or withdrawn or a not-fun person to be around.  I hope I remember to appreciate how awesome it is to stand outside and breathe in fresh air.  I hope.

Thank you all so very very much for your prayers and love and support.  I feel like a broken record saying that but i seriously – i’’m at a loss for words to even BEGIN to thank you all. YOU (and your prayers and our God) are the reason we survived this month. My mommy and daddy who were here every single possible time they COULD be here, holding me up, feeding me food, letting me rant and rave and rejoicing with me when those numbers would improve or she’d squeeze our hands or she started sitting up….My friends who sent food and cards and meals to my house and love to my heart….Strangers who have decided to take our family under their wings and send gift cards and cards of encouragement….

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But most of all, thank you to my husband. my best friend, life partner, baby daddy. He has been an absolute rock for our entire family this past month. He has just been nothing short of amazing. I can’t even put it itno words without breaking down in tears. He has driven hundreds of miles back and forth. He has made plans to get the other girls from point A to point B and back again. He has dealt with school starting and dance starting and basically anything that would be an added stress to my life right now. He has sat nights at the hospital so I could see my big girls and he has learned how to navigate PICU machinery and he has painted his little girls toenails into minions as she lay paralyzed and intubated. he has held back his own tears so that mine could come rushing out. He has watched his baby girl being worked on when she was scary shades of blue and doctors were nervously filling our room because I could not bear to watch but needed to know what was going on. He has juggled work and home and hospital and girls and is somehow still coherent. If there is an unsung hero out of all of this – it is him. Please continue to keep him in your thoughts and prayers too – for his continued strength.

I’m not sure where or how to end this one. We are leaving the hospital and ending one leg of this long journey – and yet it seems like maybe the real journey is just beginning.

Whatever the case – we keep on keepin’ on.

 

terra.

Part of your world.

Last night on Kendall’s page, I updated that she was very upset at me for singing “Part of Your World” very loudly to her. Her nurses both joined in too, but it was mostly me she was mad at. It gave us all one of those weird “fun” moments you have to carve out in the PICU, where things are very rarely fun or funny. your sense of humor becomes very warped, your standards for funny are actually quite low, your reaction with laughter loudly inappropriate inverse to the amount of humor actually present.
One of our Kendall Krew posted the following that had me in tears:

Haven’t sung that song in years, but have always loved The Little Mermaid. When I saw your post I looked up the lyrics & if ever there was a song to bring her around, I think this is the perfect one. What you wouldn’t do for a day out of these unknown waters, spending time on the sand with your beautiful daughter, watching her stand on her own two feet again. You’ll get your wish…keep on singing & we’ll keep on praying. Thank you for letting us be a part of your world!! Sending my hopes for a peaceful, rest filled night!!

And for those wondering – here are the part of the lyrics she is referring to:
What would I give if I could live out of these waters

What would I pay to spend a day warm on the sand?

Betcha on land they understand, bet they dont reprimand their daughters

 

Oh she is so very right. What I wouldn’t give right now to be busy running around packing up our whole family for vacation. Kendall’s insane amount of medical stuff included. It hurts my heart so badly to think of our family being apart for our much-anticipated vacation. It hurts to think of them going with just daddy and it hurts to think of leaving Kendall alone here. We were so excited to have Kendall doing so well, hopefully able to enjoy the water park in her Dry Suit that was specially ordered from the UK to keep her lines and tubes all safe in the water. Oh so many plans and hopes for a great fun time with our extended family.  But life comes and happens and interrupts our best laid plans and the best you can do is roll with the punches.

So this afternoon I will go home and will help my big girls pack. I will put a smile on my face and excitement in my voice for them to be able to go and have so much fun! Tell them they won’t even really notice i’m not there because they will be running from waterslide to waterslide all day long anyways. i will try to not cry as I fold up Kaylen’s little underwear and make sure there are toothbrushes for everyone and that they all bring flip-flops. They endure so much. Why now this too?  I am so tired of ….well, i’m just tired at this point.

I’m beyond tired. I am physically, bone-weary exhausted. I am emotionally drained and my body hurts from sleeping on the boxes and my adrenal glands are about to give up the ghost from the non-stop pumping of adrenaline through my veins for the past week. My brain hurts from trying to stay one step ahead of Kendall and whatever curveball she is going to throw today. I am asked all the time “how are you doing” and I answer like i always do “I’ve been better but i’m doing ok”. Because really, that’s the truth. I’m functional. Well, in a hospital setting I am. I am jumpy and impatient and develop a slight tic of leg jitteriness when i’m out in public on the few occasions my family has been able to drag me out of here. I am not super excited to leave tonight. It is so very hard to leave Kendall period, but especially more so when she is still not “better”. My heart is always here in this room. My attitude is dictated by the rate and tone of the non-stop heart monitor she is attached to. Too fast of a beat and too low of a tone is a sign she isn’t oxygenating well and I am worried. A nice regular rhythm with an even tone and she is doing great and i can relax a little. The vent monitor that sounds like a boat horn goes off every once in a while and i jump out of my skin on those.

I want/need to see more of Kendall today. I need some sign from her that she won’t pull anything crazy overnight. I am so so so happy with her continual, slow, plodding progress – but I need to see my rockstar for just a quick glimpse.
I’ll know what that thing is when I see it.

The plan for today is to try to wean her back down to the settings we had her on last night on the ventilator when she failed her ERT (extubation readiness trial). At some point around midnight I guess they came in and made a huge turn down on her settings, so by the time they did the test 5 hours later, she was completely worn out, and failed it pretty quickly (and loudly! oy – those alarms are the worst!) So we put her back to all the settings she had been at prior to midnight (and really for all of yesterday) – and let her rest up. On rounds then, the fellow decides she wants to try weaning back to those failed settings (but not actually putting her in test mode), and seeing where she’s at this afternoon. Myself, her nurses, and the three respiratory techs on the floor all think this is pushing her too hard too fast when she’s showing us clear signs of not being ready, and they all tell me I have to be the one to say enough is enough. It is once again one of those emotionally draining places to be at. Do i put a stop to the vent wean settings, and delay her extubation? Or do I let tthis new to the team doctor who doesn’t know Kendall keep going and risk wearing her out too far again and just keeping on this roller coaster? I know which way my momma gut is leaning, but this is all new territory for me.  Ben will be here soon and he can help me sort it out based on how we know our girl and what we think is best for her.

Beyond that, we’ve restarted Kendall’s TPN (nutrition) again finally – so the hope is that having real food helps her be a bit more energetic and help wake her kidneys up more. She is making more pee – has lost over 2 lbs of fluid in the past 24 hours – but it is all coming because we are forcing it off of her with IV diuretics. Her kidney function is still abysmal, and this is delaying a few other decisions. (Is this not the story of this kids life? waiting on step 1 to be complete so we know how/when/where to go with steps 2-12)

Last week when we pulled Kendall’s infected broviac line out of her chest, a femoral line was placed in her groin. As you can imagine, this is not the most comfortable of places to have a double lumen line stitched into your leg, so her team is anxious to have a plan in place to put a permanent line back in to Kendall’s chest. However, Kendall’s vein access is limited due to the fact that her veins have never been very great, as well as scarring from multiple picc line placements and broviacs. God has been amazingly faithful and has opened up spots that appeared to be unusable in the past. The surgeon on Kendall’s team for this stay REALLY adamantly wants a new “venogram study” to see if anything has opened up in the past four months on the other side of Kendal’s chest that would allow us to place her new line far away from any possible little hiding out klebsiella. In order to do the venogram, we need to inject her  veins with contrast. Contrast does not play nicely with kidneys. Kendall’s kidneys are not playing nice with ANYONE – so we have to keep them in separate corners for now.  I guess a large team meeting was held last night to discuss whether we could do a placement without the venogram study, what kind of line we will put back in, what is the earliest we are looking at, and should we just keep Kendall intubated until surgery so she doesn’t have to endure two intubations back to back. I am not privvy to all the details of this meeting, but I do know we are holding off on the venogram until her kidney numbers come WAY down, and no new line will be placed until the venogram is done. We WILL be trying to wean Kendall off of the vent and possibly extubating her at some point this weekend if she shows us she is ready, and surgery is then going to be at some point next week if her kidneys get on board with this plan.

So really – again – we’re back to her kidneys holding up the show! Well, her lungs have a pretty huge starring role in this super slow production of “as the world turns” too so I can’t give too much credit to the kidneys. Overall, she is still improving and keeping her doctors happy with her progress. She gets a little farther “out of the woods” every day. That is a very good feeling. There is both a lot that goes on medically that I can’t even keep up with in updates, and yet, it seems like the grains of sand in the hourglass of time are being poured out in an anti-gravity chamber. Things are constantly being tweaked according to that 4-hour set of labs, but not tweaked too much so we don’t chase our tails in a circle. Antibiotics are changed, culture reports come back looking crazy so they are ordered to be re-run, potassium tanks, chloride jumps, creatinine is a critical read, hematocrit takes a hit, protein goes lower…..it is enough to make your head spin right off your neck.

and through it all we just wait. I sit on her bed and i rub her feet and i squeeze her hand and i wait for her to squeeze mine back – but all I get are little twitches here and there. She’s comin back online, slowly but surely. I just have to be more patient. Have to wait for HER body to catch back up from this huge huge huge battle she has been fighting. Oh my sweet warrior princess, you are battling so fiercely. I wish I could take it from you and finish the fight while you rest.  But know that we are all standing here, praying you on, cheering you on, singing you on.  I know very very soon you will be back to being part of our world. Please keep fighting.

love you with all of my heart.

 

T.

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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