when the icu feels like home.

For those of you who actually try to keep up with my crazy random postings, this is going to start getting confusing. I posted my november 1 post that i had already had mostly written, and am now trying to fill in all the days between now and then, but I also need to update about Kendall’s current craziness, so my intervening posts may have random “future” information sprinkled in. Anyways – just go with it. Ignore the time space continuum and just read the stuff and don’t try to make sense of it. Got it?

Anyways – at the current moment I am sitting on the vinyl bed/couch in PICU room 501 of our home away from home up at Children’s Hospital of Wisconsin. And the fact that i am ECSTATIC about this particular room and this particular couch bed (aka Boxes o Bliss) speaks a little bit to the altered reality that is my life. I am excited because this room is huge. You don’t feel closed in by machinery and walls. There’s space to breathe. And this couch – it’s ONE PIECE!!! Well, three actually when you pull it out – but it’s like – the same size! i’ll post a picture on the terra talking page to show you what i mean. Even though I didn’t get to sleep until a little after 3 am, I got some of the best sleep i’ve ever gotten on the boxes o bliss, even without my eggcrate foam pads. (I didn’t bring them because I don’t anticipate we will be here that long!) It’s the little things I’m telling you.
But i realized last night, as I was pushing Kendall’s wheelchair and pulling my suitcase behind me as we walked to her room and the HUC announced “Patient has arrived to room 501” and cheers of “Hi Kendall!!!” echoed through the halls, that it felt a little bit like being home.

That is a weird thing to say, I know. And I know that there are some of you who will TOTALLY get that sentiment and others of you who think that’s an insane statement to make. And the truth of it probably is a weird combo of both. It is not normal for everyone, but somehow, it has become our normal. It is normal to have called ahead to request that one of “Kendall’s nurses” be assigned to her before we were even on the road to the ER. It is normal to be able to discuss labs at 1 am and recite med lists alphabetically while simultaneously helping the nurse hook kendall up to all the monitors. It is normal to feel a sense of relief that we are here, and settled, and that the weight of whatever has been bugging my baby for the past few days is no longer squarely on my shoulders.
So this is where we are at.

the plan for today is to get an MRI to make sure we aren’t missing an infection (as the local ER doctor suspected and Kendall certainly seems symptomatic of), and if not, to run some other labs to make sure we aren’t missing something. In case this is confusing – i’ll try to recap. I realize that many times on Kendall’s page, and even on the blog, I often skim over or just don’t address at all some of what she actually deals with every day. I don’t like focusing on her pain or all the things she can’t do or all the medical stuff she actually has to deal with every day. I realize that for some people, recounting every single medical procedure their child endures is part of how they deal with it – but for me, it’s just part of life. when I am forced to stop and list things out or analyze just how very much we are doing for our medically complex child at home, it breaks my heart a little. So i’d rather just keep my head down and barrel through. She endures it without complaining, so shouldn’t i too?
Anyways – she deals with a lot more than what most people know. Probably more than most people will ever know or understand. The things Ben and I have learned to do at home that are beyond “hospital level of care” sometimes shock me. It is just what we have to do, so we do it. And sometimes it shocks me a little bit when i realize that her day to day care is more than even what could be handled by our local hospital, or even the regular patient floor here most of the time.

But if you recall back to her last big hospitalization in October – she was having a lot of random pains that seemed to shift from her visceral organs (which was the focus of our investigations for a while) to her joints. She refused to bear weight on her left foot and we X-rayed it every which way looking for a break. It was very ankle-centered, but didn’t “look” bad so we just shrugged our shoulders. Then it was her hip. Then her other hip. Then her elbow. Then the other ankle. Then her shoulder. Then “just everywhere mommy”. It was nonstop but there was no “thing” we could pinpoint or say “ahhhh yes, this is why this hurts. We can fix it by doing that.” At the time she was still on the Dilaudid which would help the pains, and we were ok with that. And then she finally weaned down from the Dilaudid to just the Ketorlac (basically it’s like IV ibuprofen). And that helped keep things under control. She started two other meds for “pain control” so we started weaning down the Ketorlac in an attempt to keep her tummy happy (long term use of it can start to cause Gi bleeding). And as we were weaning that anti-inflammatory pain relieving medicine, this particular wrist issue started getting worse. Our default response is to kiss it, tell her she’s ok, and then otherwise leave it be. She is not a kid who gets babied a lot or has her every ache and pain attended to. We would literally be chasing our tails all day long!  “rub a little dirt on it” is basically the adage we parent by!
So after a couple days of consistent complaining and her starting to guard it more and not use it at all, we were a little suspicious. We gave her the Ketorlac and that seemed to keep the pain under control better, but we still had no idea what, if anything, was wrong. Monday morning she woke up and it was HUGEnormously swollen. At that point I started to suspect maybe she had a small hairline fracture somewhere so after a packed full Monday morning, we trudged to the ER.
The problem with a kid like Kendall is that you can’t just look at her and say “oh, well since it’s not THIS obvious thing, it must be nothing.” Her body is notorious for throwing out red herrings to have us chasing down one trail while really the problem lies somewhere else but her body doesn’t interpret or give “i’m in trouble” signals appropriately. And the thing is, the stakes are starting to get really high with what could go downhill if we guess wrong. Again, i think I kind of downplayed how very very desperately sick she actually was in September, but it was crazy. It was hard to watch. It is harder still to try to process through all of that and some of the baseline changes she has had and try to find a balance between wanting to break down and cry, and keeping a positive attitude that it’s hopefully just temporary setbacks.
And as a completely open and honest aside here – I can tell you that it absolutely slays me to have people telling me that. I know that most people who say things like that:”Well hopefully she bounces right back. It’s just temporary. She’ll be back to her old self in no time.” – I know you mean well. i know you say it from a place in your heart that wants to not think that bad things can really happen to kids/people you know. I know this because i know I have been guilty of saying it before. But sometimes, in the throes of the storm we have all come through over the past couple months – it doesn’t comfort me. It makes me want to lash out, actually. Because I have watched this kid fight like HELL to get through what she’s gotten through, and it’s been really really really scary the past couple weeks but i’ve had to hold it all together for everyone else, and for myself, and for Kendall. This fight took a lot out of her. And while yes, her spunky fighting spirit is still there, her body is still VERY tired and weaker than I even like to admit to myself. YES I hope she continues to improve from that. And hey, maybe this random joint stuff is even part of why she hasn’t fully regained her strength/endurance.  But unless you are currently walking in my size 9’s, you don’t know. And this little vent is truly not directed at anyone or anything that’s been said in particular. I’m not saying it to make anyone feel bad. I’m saying it because it’s part of my committment to being more open and authentic on my blog about how I feel going through this journey. And right now, today, this is how i feel.
my kid tried to die twice in the last two months and that sucks. It’s brutal on the spirit. No two ways around it.
BUT – I do realize that she did not die. And she is still here, fighting, kicking, being sassy.
she’s not doing that lightly. She’s doing it because she is amazing. And because God has a much bigger plan for this girl than any I could ever dream up. And when i hear things like the flippant “oh she’s on her way back. She’ll be fine soon! Etc. Et al..”, it makes me feel like that’s downplaying her amazing intense battle. That’s really what it comes down to I guess. I just want people to understand that this kid literally fights for every day of her life. and she does it awesomely. She makes it look easy. she does it with an attitude of joy that i could not even hope to have if I were in her shoes. But she does it.
So that’s what i focus on. It doesn’t mean I don’t still sometimes need to process through the scariness of what we’ve witnessed the past couple months. But I choose to put a positive face on, and look forward with hope, because that is how she lives her life.
I realize I’m just kind of ranting here and I hope you’ll forgive me for that – blame it on only getting four hours of sleep last night. But I just kind of wanted to get that out.

Please know that i’m not saying you can never say things like that to or around me. for the most part, you’ll get my standard response of smile and nod in agreement. Because of course i am the most staunch believer in my girl’s ability to “bounce back to herself in no time”. Of course I believe that and hope that and pray for that. But i’m also the one who sees the ups and downs, the throes of pain and the elations of success at accomplishing that baby step. I am the one who pours myself into making sure that she has more good days than bad, that someone stays a step or two ahead of the craziness of her little body, that while we all paddle furiously under the water, all you see is smooth feathers and floating on top of the water.

i’m so far off topic i’ve confused even myself…

anyways – that’s where we are today. Hoping for an easy answer, an easy fix, and possibly even getting home tonight if there’s no other red flags. Just a speed bump on the road to recovery. But it’s still the unknown. And at the end of the day, I’m the one who has to decide if I’m comfortable taking her home again with unknowns, and not knowing if she will continue to trend in the right direction, or if she will crash, and having no reserves, crash hard. I feel like sometimes that term is overused. It loses it’s meaning. I don’t mean that she will be lethargic and tired. I mean that her body will not even have enough of the right hormones available to keep her heart beating in rhythm, to keep her blood in her veins and arteries so her blood pressures remain stable, to make sure that oxygen is pumped efficiently to all of her important organs. These are the things that go wrong when Kendall crashes. It is scary and it is our very possible reality.
Taking her home requires that I have faith in a God who is bigger than my fears. It means surrendering to whatever might lie around the river bend. It means that as much as I try to retain control over every little last aspect of Kendall’s body via her labwork numbers and her vital signs and her trends in BP/HR, that i have to admit that I do not have control, and in fact, there is no such thing as control.

So….
We wait. Wait for MRI to be ready for us and wait for the contrast to be pumped by her heart through her veins and wait for the machine to take pictures between magnets and wait for the pictures to be interpreted and wait for answers and relief and a plan.

And even though it feels better to be here, in the safe walls where the medicines are and the machines are and the big ipad that tells me what her body is doing via labwork is, it is not really home. I miss my other babies and I miss the neverending laundry and the semblance of normal we were just starting to put together. I miss the semblance of normal our lives were a couple months ago.

But if you have to be stuck somewhere, this is a good place to be. My other babies are in good hands too. I am SO so glad that right before I got the call to head north, I had spent over an hour with Kaylen, having “Special mommy/kaylen time”. She thrives on that kind of thing, and I am so grateful I was able to pour attention and love into her for a little while before this trip.
Anyways – i’m not even really talking about anything anymore, just spewing out random thoughts as sentences.
I think maybe I need coffee. and some chocolate. I knew I should have grabbed that bag of halloween candy on my way out the door….

I’ll update Kendall’s page when I know more. And i’ll be backdating a couple posts here too. (You’ll probably have to click over to the actual blog and scroll down – they don’t auto-post to FB when I backdate them!)
And I think that’s about all I have to say about that today.

 

terra

Breathing.

Somedays I have to remind myself that it’s ok that all I am doing is just breathing. It means my head is above water. I am not drowning. I am breathing, and that means i am alive. And if i’m alive, we’re all still alive.
Things are flowing along at their typical pace – some days ultra crazy and other days ultra boring and somewhere in the middle we find our rhythm and ride the waves and just keep breathing.

Kendall is improving every day. Well – in her usual way. Two steps forward, one step back. Overall – her pain is being well controlled with the addition of two “long term” medications, both in her J-tube (yay for no more IV narcs!), and her strength continues to return in amazing ways. That girl is the very definition of fierce determination (also of massive distractibility and wild banshee screaming at random times, but hey, we can’t nitpick here i guess!)

The other girls are doing well. Kealey had tried out for her school cheerleading team and did not make it and that was a really tough blow. I think maybe more for me than for her. She took it in stride. I was crushed for her. She worked SO hard on learning the routines and I tried to help her even though I was exhausted that week and I just wanted her to have something FUN and GOOD and something to look forward to…She gives up so much, you know? They all do. I just wanted her to GET something for once instead of having to give something up again. But that’s not life I guess. You want a lot of stuff and sometimes you don’t get it and you move on anyways and find something else new to look forward to and work on. She has her sights already set on how she will improve over the next year to try out again next fall. That’s my girl.
Karissa is doing well – she has become ultra loving and affectionate towards everyone since we’ve been home. She is a girl who can both read and pick up on emotions in people, even in a room full of strangers/people she doesn’t know well. It is hard sometimes to hide my emotions from her – whether that’s exhaustion or frustration or whatever – she picks up on it and she takes them on as her own, or tries to fix them somehow…She is doing pretty well in school finally with the help of her Special Ed teacher through her IEP. That is a huge relief in so many ways. Mostly I am happy for her that she doesn’t feel dejected or overwhelmed by school anymore really. It actually almost moves me to tears to think about because it has been SO hard for her the past few years, the struggles, the frustrations, the helpless feeling at knowing she needed better support but not knowing how to get the school to recognize or address it. But we are moving forward now with her support and it is so huge….
Kaylen….oh my little hurricane. Where do I start? She is doing good. She is just one of those kids IMG_7565 who will find her own way to get what she needs. She will get the attention and the love she needs one way or another – good or bad! I realized a few days ago that she is the age Kealey was when we brought Kendall home from the hospital…and I look at how much she does, how independent she is in many ways and yet how very much she still needs me. My heart breaks for her sometimes, and other times she makes ME want to break something….She also is doing so well in school and I credit her teacher with a lot of that success. She was Kaylen’s first grade teacher also and we worked very hard to ensure Kaylen stayed in her class this year because her bond with Kaylen is such a large part of Kaylen’s day to day success at coping with our somewhat chaotic family situation.  Mrs. P – I don’t thank you enough – but thank you – for all you do. 

And that’s about how that’s all going. For those of you who have been bringing us meals and sending cards…I am overwhelmed at your kindnesses and my own gratitude for you. I will never ever ever be able to write the thank you cards fast enough or respond back to emails and messages in timely manners. But if you have sent something, or done something, or brought something….it has touched my heart and given me strength. Know that. Please know that. YOU are the reason I am able to tread water and keep on keepin on. I am tearing up trying to even write this. Thank you written here seems so completely inadequate – but I hope you know how much of a difference you are making for the positive in our life. I am SO very grateful for the meals – and the love that comes into our house with every single bag of food delivered. They are the difference between me going completely over the edge of insanity and being able to know that at least one thing is set and taken care of on those days.

So there it is. A brief update of sorts. For the most part, things are under control. Supplies are ordered for the month and week, things are in place and moving forward, I am *pretty sure* that everyone has some semblance of a costume for tomorrow night for Halloween…..yeah I can’t think of anything i’m forgetting….
At least for right now!

I’m working on getting my NaBloPoMo – blog every day in November – posts all set up. I enjoy the challenge of doing it but am usually SO glad when November is done! If you aren’t already – go “like” the Terra Talking page on Facebook so you can get the notifications when the posts go up. Plus it will make me ridiculously happy to hit 1000 fans on that page (SO PAINFULLY CLOSE!!!!) Kendall’s birthday is two weeks from tomorrow which just blows my mind….this is the first year we aren’t doing some bigger thing for her birthday so i think that’s why it hasn’t quite hit me yet that it’s that close!

Anyways – now i’m rambling because i just drained a Venti mocha in about twenty minutes and i am JITTERY!!!!! YAY!!!!

I hope you are all having a beautiful week. Thank you for coming here to check on us. check on me. See what craziness i’m up to. Keep checking back. November will be chock full of it.

Peace out party people.

T-crest.

unexpected.

you think sometimes that you are prepared for life. Prepared for the curveballs that may or may not come your way. You have emergency bags or emergency plans or emergency numbers in safe places, places you are prepared to get to in case something unexpected comes up. And this is all good and fine and sometimes it comes in handy and you avert the big crisis because you prepared for the unexpected.

But sometimes, even if you think you are prepared for the worst case scenario, it still creeps up on you at 4 pm on a random rainy tuesday afternoon in October.

Maybe you are sitting in the lobby of the hospital and you hear a code called in the area your child is having surgery in and you just know it was her. Maybe you run up to the waiting room where the desk person is frantically searching for you and your name is being paged overhead simultaneously and the doctor is being paged simultaneously and you try to hold yourself together as you walk to the elevators. And you tell yourself everything is fine as you walk into the unit and you even believe it for half a second before you round the corner and see your child’s code light on outside her room and many many people around her room and a doctor intercepts you halfway down the hallway and pulls you into a private room and invites you to sit down.

It is then that you know that none of your emergency preparedness actions are going to be enough. Whatever is about to come out of the doctors mouth is going to be so unexpected that it will hit you in the gut with a ferocity with which you will never be prepared for.

And then the doctor tells you essentially that your child died on the table, right below his hands, but it’s ok because it was only for a minute or three and she is ok now, she is back, and everything is ok. But he is shaken up and you find yourself trying to comfort him because the actual reality of his words haven’t sunk in to your brain yet, maybe you don’t want them to sink in, and because surely he couldn’t really mean YOUR child he must be confused. But he takes you by the arm and walks you to your child’s room because she IS awake-ish and is moaning your name and has people surrounding her, holding oxygen masks above her face because the cannula taped into her nose is at max capacity and still isn’t giving her enough oxygen to keep her vitals stable. and you will go to her, this child of yours who likes to defy odds and bring new meaning to the word “unexpected” and you fall on her and hold her and tell her it’s ok, it’s all ok, you’re here now.

The next few hours might come as a blur to you. you have to tell everyone that she is ok but that she is still not “stable”…

This is unexpected.

it was supposed to be an easy surgery. A quick stay.

And now it’s all topsy turvy and there really aren’t any answers and you have no idea what will happen in the next few minutes or hours or days.
Unexpected.

i am not even sure I have fully processed for myself what happened yesterday. Her nurses tell me it was scary, and that it’s ok that i’m scared and nervous and unsure of what happened or what comes next. But mostly I just look at her and I’m glad she’s still here. Still sassy. Still fighting, like she does best. I have been fighting some kind of wicked cold/sinus/viral crappiness and i think it’s almost a blessing. My head is so full of snot that it’s hard to think through it all, and that’s probably a good thing.

What I do “know” right now: The running belief is that she had a massive pulmonary embolism. Likely a clot or part of a clot dislodged from somewhere in her body and momentarily blocked her pulmonary arteries. This caused her to go into v-tach – ventricular tachycardia. A crazy erratic heartbeat that was not in any kind of rhythm and was doing essentially nothing to pump blood. As a result her blood pressure plummeted to nothing and her sats took a major nosedive to nothingsville.  I am told that we are extremely lucky that the anesthesiologist on her case is one of the only men in the entire state who could have brought her back so quickly and assuredly. His skillset happens to be best suited to cases where this kind of thing is a likely possibility.
So they stabilized her. Brought her upstairs still very much needing support. I am shocked that they extubated her but I think the main goal was to get her out of the OR and up to the capable hands of her ICU team who knows her.
We aren’t POSITIVE that it was a clot. It could have been air, it could have been her body just reacting to the anesthesia, it could have been just the direction of the moon and wind. Even though we don’t know the reason why, or have any real reassurance that it won’t happen again, we have her back. She is stable. And that is as good as we can ask for right now. It is good enough.
We have imaged the likely places a clot might be hiding out, and see none. she is receiving a large dose of blood thinning medication every day. Her pain from the sepsis seems to be being better controlled, and we are so happy for that. She was very very sick, sicker than i think any of us realized while she was going through it even. And we are looking at a pretty long recovery, full of ups and downs. Her doctors tell us that we shouldn’t feel discouraged, that her baseline may eventually return to normal. That  this doesn’t mean she’s lost major ground. It just means right now, she’s recovering. Right now, the unexpected will continue to throw us for loops. Right now, stable is as good as it gets.

She does have her new line in. They were able to complete inserting that. Her old crusty painful picc is removed. She is cleared to go home in the morning.
So homeward we will go. For hopefully at least the four weeks we would normally be home before returning for IVIG in November. We don’t exactly know what else to expect, but maybe that’s overrated anyways.
I’m looking forward to getting home, into a good schedule again. One of her crazy antibiotics is done, so her med schedule is DRASTICALLY reduced. This means we get some sleep at nights now!  We will look to get her back into school in the next week or so as she proves her endurance to us a little bit more. We have  Halloween costumes to get set for all four girls and I owe Kaylen a birthday party still (poor middle child always gets left out….), and then it will be Kendall’s birthday and then it will be CHRISTMAS.

And then time just flies.

So I’m going to wrap this up because the coughing is overtaking me and my head is still full of snot and I just really really really want to sleep for about a week. Or a month.

i hope this post makes sense. Thanks for trying to read it anyways~

 

peace out party people.

~terra.

Even Diana Prince Can’t do it all.

bonus points if you know who Diana Prince is without having to click this link. (It’s just to wikipedia i promise.)

*Insert loud dramatic sigh here*

you guys – this is hard. Really really really hard.

and the next time I think I’m Wonder Woman, I want someone to slap me really really really hard.

Because I’m not.

I’m exhausted and I ache all over and I’m shaky from either lack of real food or lack of sleep or just overall running on sheer adrenaline for…like a month.

I know you are all SO HAPPY for us to be home, and believe me, I am equally as happy that we made it home. But like I have referenced before, getting home is usually the start of the real battle. Discharging from the ICU is not a preferred course of action for a good reason. Most notably that I am only one person, and in the ICU we at least have two persons – one for the day and one for the night. Because running medications on 5 different Iv pumps overnight requires the ability to be awake and cognizant.

I wish I had a bunch of cute pictures of how happy she was to be in her own room, to see her sisters and our neighbor friends who came to say hi. But I don’t. Because that only lasted for about 20 minutes before the stress of the long drive, of having to be upright for that long, of all the excitement after laying mostly still for 3 weeks and still being pretty gosh darn  sick – all of that hit at once. And our courier from the pharmacy was not here with the magical medications we needed to bring her relief. And my older three kids were excitedly telling me everything about their last few days and i wanted to hear them, i wanted to sit and hold them endlessly and just soak them all in again, but I couldn’t. I had a screaming baby and medical supplies literally all over and about four loads of laundry dumped by the washing machine and NO MEDS to help stop the pained screaming and Ben left for his business trip in the middle of this chaos and it just made me want to curl up in a corner sucking my thumb and rocking myself to sleep.

But I couldn’t do that because children needed showers and help with homework and mommy time and Kendall needed all new IV lines set up for when the medications did come and she was too cold and too hot and wanted ice packs here and blankets there and this movie on no that movie on and then her nurse accidentally threw out a major part to making her oxygen concentrator work last week so we were trying to jerry-rig that and then the medications FINALLY CAME and we have pumps and IV lines all over the place because there isn’t enough room on her IV pole for all the pumps and all the bags of medicines so we are taping things to walls and using lamps as makeshift IV poles and we finally finally finally got Kendall some relief at 9pm and I got a few minutes of snuggles in with the big girls and then the nurse and I had to go over all of the new medications and all the new paperwork that needs to be filled out. So I got my nice hot pressurized shower at about 11:15 and then had to stay up to run meds at midnight.

Got to see the beautiful full moon as it started it’s arc behind Venus. It was ALIVE last night did you see it?? I just sat and stared and tried to soak up the quiet amazing beauty of that glowing moon and sat in awe at a God who could put on such a fabulous show in the middle of the dark night. And was reminded that that is when He shines the best…when things seem the hardest, the darkest…that’s when you know you are truly held.
So I set my alarms for 2 am and 4 am and 5 am to run Kendall’s other meds and I got in bed for a couple hour nap and I got up to reset her heartrate alarms and to untangle lines that were causing occlusion alarms and to run the right meds on the right pumps hanging off lamps and taped to dressers and I prayed that my hands would be guided and that I would not make any mistakes in my overly sleep-deprived state. (Did I mention that the last night in the hospital I only slept from 5:45 am til 7:15 am because we were working all night to keep Kendall’s pain under control???)

So here we are this morning and I am definitely feeling FAR less than wonder woman-ish and I am trying to organize the chaos of paperwork and new medications and charts for the nurses in the few hours I have before her next set of medications needs to run. But we survived the first night. That is huge. Today is another day and we can hope that maybe today is the day her pain lessens and i can run a few less meds tonight. I got the big girls on the bus and i shakily made my way back home with a list on my mind of all the things I needed to do and I looked up and there was the most beautiful creature I have ever seen in my life – the Dunkin Donut Fairy with a large coffee and a pumpkin muffin and I just hugged her and tried to stay upright because I just NEEDED that…..I needed it in a way beyond just craving sugar and caffeine I just needed to know that the strength I needed was going to come minute by minute and hour by hour but when i needed it the most it was going to come. (thank you miss B – you are truly beautiful inside and out – even without coffee in your hand for me! <3 )

I do not know what possessed me to think I could replace our fabulous nurses and amazing care from West5 at home by myself. I honestly have no idea. I realize now that I cannot and will not ever be able to do what those people do for my daughter without MAJOR major headaches and issues. I cannot thank them enough for ALL of their care and love and concern for my daughter. The ones who get to work for shift assignments and fight over who gets Kendall that day or night, the ones who lose the fight and still pop in to say hi to us, the ones who win the fight and provide outstanding care day after day, night after night. the doctors, the techs, the HUC’s, the discharge planners who love my last minute requests…..You guys are our home away from home and oh how I was torn last night as I wanted to plop on the floor and cry because I couldn’t make her pain go away and she was doing her fever thing again and I just wanted to be home here and i wanted to be home there and i just wanted this all to be not my real life right at that moment. but I know any one of you up there would have told me to get off the floor and stop crying and do what needed to be done for kendall so I did.

And we will get through.

your prayers, all of you, near and far – they will get us through. The food you are signing up to bring us, the cards you are sending, the love you put into my inbox and my phone via texts and the hugs I get when I see you in the store – these are how we will survive. how I will survive. And If I survive, we’re all surviving.

Minute by minute, hour by hour, we are surviving.
now I’m going to do my best to channel my inner Diana Prince, original Warrior Princess, and get shit stuff done around here.

See you on the flip side.

T-crest out.

turning the page.

Today we turn the page on a new month, turn the page on a new season even.

i hate being “in” over the page turn. It’s just a weird mental thing. Like not stepping on sidewalk cracks or having to wear certain shirts inside out on purpose. It causes a glitch in the matrix.
But we really didn’t have much choice in the matter so i’m trying to accept it for what it is and move forward without focusing too much on the calendar or the changing leaves outside the window.

i really just wanted to get some kind of post up on this actual calendar day.

I know there are so many questions some of you have about the information we have gotten from various tests/studies we’ve been doing on kendall trying to come up with a good plan of attack for getting her home. As i am exhausted at the moment, i hope this makes a modicum of sense.

Basically, we fought back the fungemia, her initial presenting issue – pretty well. Pulling the line and supporting her body through the septic shock by being proactive based on her past history – that was almost the easiest part of this stay. And just when we thought we had things all set for discharge – BAM….down went kendall again. Acting very sick, being in a  ton of pain, and essentially not giving anyone real warm fuzzies.
There’s so much i could write about – but the bottom line is this: her pain was out of this world insane for her, and she was requiring high doses frequently of narcotic pain meds, and because of, or maybe secondary to the pain, she was spiking fevers. EVery time she gets back over 102F, we have to re-send blood cultures to make sure we aren’t missing another infection.

So far those cultures have been negative, so we were really stumped as to what could cause her to look/act so septic and yet, apparently, be ok. She points to the pain as being located under or behind her ribs on her left side, and sometimes it radiates up that shoulder and sometimes its her right shoulder and sometimes it just hurts so bad she won’t take deep breaths and she gets in this hyperventilating breathing pattern. We have checked her pancreas and gall bladder – and while both are inflamed and angry and the gallbladder is full of sludge – the team doesn’t feel those are the problem. We know her spleen is three times its normal size and is not shrinking back down like it should be (it is stretched to capacity – and they do admit that could be pretty painful). We have ruled out kidney stones, established that she may have supermesenteric artery syndrome but that her renal pressures are ok for now, and essentially racked our collective brains for ANY other possible scenario under which we could be operating here. So far nothing new is popping out to anyone.

It is frustrating and heartbreaking and yet….I am glad we are looking. I am glad they are not giving up on trying to find answers for KQ. She is an enigmatic mystery for sure. And this pain – it is not my baby. It is new and whatever it is that is plaguing her it takes her WAY down when the meds have worn off and she is left only in this place of writhing, blinding pain.

We switched her antibiotics yesterday back to her old crazy plan where the nurses are scrambling, even with all the pumps and extra help, to fit everything in during their 12 hour shifts. And with that crazy schedule, her fever has not returned. Curiouser and curiouser. We have absolutely no idea what monster we are fighting.

This is …… it is one of the hardest battles I have helped my baby endure through. I am weary from this one, and I know her little body is so so so tired.

We don’t really have more of a plan right now. But this is what I know. I am exhausted so I will post this for tonight and hope that tomorrow brings renewed strength for the fight.

 

t.

Soon…But not yet.

Soon we will be packing up this room and loading into our car and making the long trek home…

But not yet.

Soon we will hopefully have answers for what has plagued our warrior princess for the past week…

But not yet.

Soon i will be able to hug my whole family all at once in our own home….

But not yet.

Soon there will be rest for our weary bodies and souls….

but not yet.

 

Rounds this morning were disheartening to say the least. I should have known based on the labs on the big ipad I run out to look out at every morning….things had done their typical trend in the wrong direction. Way too many red numbers (meaning her numbers were not in the right range). A very cranky Kendall asking for more medicine. A heartrate that beeped steadily higher all night while the breathing alarms went off with shocking regularity. A bag full of bright red urine hanging off the foot of her bed that i could see without even opening up the sleeping curtain. I heard various members of the team whispering outside her door, and knew the news was not “good”. i could pick up a few words here and there, enough to know that we were likely not going home today.

and sure enough on rounds, the attending doctor brought up that he was concerned enough about Kendall’s trends that he did not feel comfortable sending us home. i would take this information from VERY few people in this place. I would argue and stomp my feet and become overly sarcastic and essentially act like a five year old brat to get my way. But from him, his quiet demeanor speaking of a wisdom derived from years of watching kiddos like kendall do unpredictable things – I humbly accepted his proposal to stay at least one more day. But in the staying, to take further action. One thing I hate about “staying one more day” is when nothing is done. when its just “wait and see”. i do not “wait and see” very easily about ANYTHING in life. (I feel like there’s supposed to be some awesome lesson about God teaching me patience inserted here but i’m too impatient to try to figure out what that might be!)
the ONLY shred of sanity i have left about this situation is that at least today there will be ACTION. It still may not give us answers. We may be in no better of a place by tonight than we are right this second, but we will at least have tried. We’ve got to at least try.

Kendall’s body has rarely given us clues to the mysteries contained therein. she has caused much head-scratching and shoulder-shrugging in her almost 6 years on earth. Sometimes we just have to take our best guess and be ok with that as the best possible answer. We have always just tried to make things make as much sense as possible, using the resources we have available, and as long as she’s mostly staying the course, we are ok with that. We are happy with that. Sure there’s lots of stuff that isn’t “perfect”, but we’ve learned to live with it.  It’s part of why she “looks so good” on the outside – we just don’t make a huge deal out of little stuff. We’d be forever in a doctors office or living here in the hospital!

but right now – especially after the harrowing illness she battled the last two weeks – her body is trying to tell us something. and we aren’t really sure what.  She looks exhausted, tired, worn down, and just downright “sick” today.

Maybe it’s one of those times where her body is just more tired than we realize, and she needed some of the supports we’ve pulled away for a little bit longer. Maybe she’s just going to take longer to recover from this fungemia than we thought. Maybe it really IS pancreatitis on top of all of that and it’s just throwing her for a loop beyond any she’s dealt with before.

in any case – she will be getting another in-depth CT scan very soon. We are sending cultures of everything we can culture and will very likely be tanking her up with a blood transfusion to replace the blood she continues to lose from her gut and kidneys. Her need for the pain meds via IV is not being debated anymore so we are able to stay on top of that better to at least keep her comfortable.
I know so many of you have been SO faithful to pray with us and for us throughout this entire crazy journey. Please keep the prayers going over the next few hours – that if there is something to be found that the doctors will see it, will know what it is, will know how we can best treat it. And that if there is nothing to be found, that the team has a sense of peace about what supports she may need added back in to help her finish healing from the fungemia (the yeast infection in her blood that is why we first came to the hospital).
Please pray for the hearts of the other three K’s at home. We were all looking forward to a nice family dinner tonight thanks to some generous friends and gift cards. I know their little hearts endure so much when we are inpatient like this, and it kills me to not be there with them to reassure them that things WILL be ok, we will be home soon….just not yet.

i will update as soon as i know more.

which will hopefully be soon…

but not yet.

 

t

But the fighter still remains.

In the clearing stands a boxer and a fighter by his trade and he carries the reminders

of every glove that laid him low or cut him till he cried out, in his anger & his shame

“I am leaving, I am leaving….”

But the fighter still remains.

 

My baby – this fight has taken so much out of you.

I sit here tonight listening to you set off alarm after alarm in your utter and sheer exhaustion. I see it in your puffy little dark-circled eyes, and I sense it in the heavy way you lift your arms and I know…I just know.

You miss your sissies and you miss your own bed and you miss being at school with all your new friends and you just miss feeling “better”…I miss all of those things too. But mostly I miss them for you. If i could take all of this from you I would, in a heartbeat I would do it. But this is not how it works. YOU are the one with the story to tell my beautiful blue-eyed girl. YOU are the one who has grace and strength well beyond her years. YOU are the one who will be so mightily used by God…and YOU are the one who will teach us all about the important stuff of life, and how to live it fully.

It has been a long couple of weeks.IMG_7108

Our time in the “safe” walls of the picu is coming to an end. You are not quite out of the woods, but close enough to be home to finish getting better. You haven’t quite made “the flip” yet, but I have a feeling that this time it will be less dramatic than in times past. It will be a gradual returning of the strength you have lost, and the sparkle in your eyes. But it will return. I know it will. Because even after all these things have laid you low, the fighter in you still remains. And always will.

I have tried my best to fight for you this time…i hope I did a good enough job. I hope you are as proud of me as I am of you.

I hope you know that you are so very loved….not just by me, and daddy, and sissies. But by your grandmas and grandpas, cousins, aunts, uncles, friends…and perfect strangers around the world. All because you get up every day and you find something to smile about. You are amazing – do you know that?
I hope you know that you are so well equipped for this fight because of their prayers.

And because you are surrounded by an amazing team of nurses and doctors. You have made them all earn their keep this stay. you have taken their boxes and their textbooks and thrown them right out the windows in true Kendall fashion. But they have loved you and rejoiced with you and fought for you almost as fiercely as I do.
I know you are in so much pain baby, and I hope between me and your kickass nurses we can get you some relief soon. You fight so hard and it’s time for us to help give you a break from this fight for a little while. And then you can rest…and in a few days we will have you “better”. And then you can come home and fight there…

Sleep good my sweet baby girl. Rest well so you can fight more tomorrow~ Never stop fighting….
I’ll fight for you til my last dying breath~

I love you.

 

~mommy.

 

 

[Read more…]

Trust your Intuition.

A lesson I have learned this crazy stay….. to trust my own intuition.

It’s not to say that I usually DON’T – but this stay above others – we acted, her doctors and Ben and I, on our intuition of what we thought Kendall was going to pull next. Fun facts about Kendall: She likes to go into septic shock really super fricking fast. And she will act FINE right up until she is in shock. And even the most seasoned intensivists (intensive care/critical care doctors) up here in the unit have learned to have a healthy respect for their intuition about what complex kiddos are going to do next, and for then throwing all their book knowledge out the window when it comes to kendall.

so this time, our intuition has been what leads us. It was one doctors intuition to call the transport team and tell them to grab the antifungal IV med before we left the ER, even though we had no indication that we would need it. It was another doctors intuition to start a second gram-negative coverage. It was another doctors intuition that led to speeding up the line removal and intubation process so it was in a controlled proactive environment (vs the chaotic reactive situation we got into last year.) And all along it has been my intution to say to those doctors – keep digging, keep fighting for my girl, keep making those choices that seem to make ZERO sense but are what is keeping things in control of the chaos her body is trying to throw. It was all of those things that got us out of the dark scary woods of septic shock and led to a successful extubation and presser wean.

But it has also been my continued momma gut intuition that has led me to keep pushing the team for a better response from kendall. It is hard sometimes to fight “against the team”. Especially a weekend team that knows next to nothing about my child and her penchant for the dramatic. It is hard to get people who don’t know me to understand that when i say “something is just not right with kendall” that i mean serious fricking business. And that the times i CANNOT put my finger on what is wrong are usually the scariest times.  Saturday and Sunday were frustrating for this reason. I just knew she hadn’t made “the flip” yet – this very visible switch in her demeanor that leads to me knowing we are safe to head home – and i wasn’t sure WHY she wasn’t making the flip, only that the placating answers about yeast and tired kids wasn’t cutting it. Something was still wrong. I just knew it. Only, i couldn’t get anyone else to listen.

It’s kind of like what i imagine it would be like to be stuck in a foreign country where you don’t know the language. And you try to explain to someone that you are in pain, you need medicine, but since you don’t speak their language and they don’t speak yours, and you aren’t bleeding out in an obvious way or having respiratory distress, you get patted on the back and head nods and “ok – you be ok!” But things are most definitely NOT OK and you just need someone to HELP YOU. That is how it was all weekend here. It was making me VERY agitated and frustrated and not a nice person at all.  (comments from the peanut gallery of the friends who took the brunt of my frustration this weekend will be stricken from the record!) But – I just knew….I didn’t know WHAT but I knew SOMETHING. And that was enough. 
So Monday morning rolls around and i am woken up to our nurse telling me we are headed down to surgery RIGHT NOW because they had an opening to get her temporary PICC line placed and replace her GJ tube which tends to harbor nasty yeast on it on a good day, and since we were trying to kind of eradicate as much yeast as possible and her tube was due to be changed last month anyways, we went ahead and did that. And again – thanks to the quick thinking intuition of her doctor, a dose of meropenum (one of kendall’s most favorite gram-negative coverage antibiotics) was ordered to be run during the procedures.
As a quick aside – let me explain here why we have to do all this line placement juggling since I get asked a lot of questions about it: Kendall survives day to day via nutrition that is run into her veins, called TPN (total parenteral nutrition). This is run into a large plastic “permanent” IV that is in her chest and tunnels down through her muscles and ribs directly into her heart. You may have seen this in real life or in pictures – its the white tubing that is sometimes visible on her upper chest. This is threaded into the backpack she wears all the time with her IV pump and the bag of TPN fluid in it. When you get a life threatening septic infection, it is usually advisable to remove that line as it is more than likely seeded with a bunch of little buggers that like to hang out on plastic things in warm places, like the heart. BUT – you can’t just put a new one back in until you are sure you have won the war against the bugs. So you send them to the OR to find a temporary central line because if you’re kendall by that time you are surviving only because of the insane amount of medications running on a million pumps into 1400 different IV lines that cannot be turned off for even a few seconds. THIS IS HOW WE HAVE FUN AROUND HERE FOLKS!!!! (that is tongue in cheek for those who aren’t blessed to have experienced my sarcasm in real life…) SO ANYWAYS – because kendall likes to survive solely on the IV meds flushing into her body, we need a lot of “access”, which is the fancy way of saying we need a crapton of IV’s.  so she gets, usually, a Femoral Line placed. If you think Femoral sounds familiar, you might be thinking of your FEMUR which is your thigh bone. So yes – that is where Kendall gets a triple lumen IV placed that threads up her femoral artery directly into her heart. And it’s ok if that thought skeeves you out because it most certainly skeeves me out.

The bad news here is that even after we’ve started to win the fight against the bugs, it is advantageous to wait as long as possible before placing another broviac (white chest IV). Since life would be decidedly and insanely difficult with a triple lumen IV in the crook of her leg, we have to decide what to do for “temporary central access”. OR – we have to beg infectious diseases, critical care and surgery teams to all play paper rock scissors and decide how soon we can put a new broviac in. Because she grew two crazy yeasts this time, no one wanted to play that game, so we decided to go with a PICC – which is a peripherally inserted central catheter. Basically its an IV that is placed in your arm that threads into your veins but doesn’t quite go all the way to your heart. My TRUE description of them is not fit for family viewing so i’ll keep it to myself – but suffice to say – we have a hate/hate relationship with them at our house.  I could not tell you if its just that kendalls peripheral veins are so crappy that they will never play nice with a picc, or if its just her body’s crazy schizophrenic clotting factors (“oh let’s make clots! NO!!! Let’s not clot at all – EVERRRRR!!! NO! CLOT CLOT CLOT!!! *gurgle gurgle gurgle* fine i’m just gonna bleed out slowlllllyyyyyy!”), or if its just that Kendall’s body likes to be obtuse – but we do not have good luck with them.

I am optimistic that we can get this thing to stay functional for the three to four weeks it needs to be. The longest we have ever had one picc stay working is 12 days. Here’s why that isn’t gonna work for me. So one lumen of Kendall’s picc will be dedicated to her TPN, which runs 24 hours a day, 7 days a week. The other lumen would, like with her broviac, be used to run her intermittent meds like zofran, benadryl, and then now the micafungin (antifungal meds that kills the yeast in her blood). So – ok, kind of a crunch but do-able. Micafungin cannot be run in the same lumen as TPN because of all sorts of dumb crap that i didn’t pay attention to in chemistry class.

AND THEN……Kendall decided to start getting sick again, and now it looks like she has a bacterial infection PLUS the fungemia so her medications will be running pretty much damn near ALL THE EFFING TIME into the other lumen. Usually what happens is that the smaller lumen gets a clot formed on the end of it (and no i don’t mean fibrin sheaths i mean literal thrombi), so we can’t use that. But everything won’t fit in with the TPN because 3 of the possible 6-7 meds we are looking at coming home on for the next few weeks are incompatible with the TPN. For those of you who blessedly have NO clue what i’m talking about you are so confused and that’s ok. For those of you who DO know i hope you are rocking in the corner with me at the thought of this monumental task ahead of us.

Bottom line: this picc MUST STAY WORKING. I think we are going to shoot for three weeks out – it will be IVIG time again and we can just bring her in for a quick stay and tune up and switch out the picc for a new broviac and go about our merry way. Sounds great, right???? YES. Let’s all vote for this plan!

Anyways – Monday after we got that picc line in, and hooked up to run her fluids into it, she started screaming in pain. And pretty much has only stopped for a few hours since then. They are telling me that they “probably just dislocated her shoulder a little bit” when they had to adjust her arm to thread the picc line around the curve of her arm down towards her heart. Because that is supposed to make us all feel better. Oh sure! just a little case of nursemaid shoulder! shake it off kid! But the other and more concerning thing is that starting monday afternoon, AFTER we pulled out that femoral line that bled like a stuck pig for thirty minutes and her poor nurse had to sit ON kendall’s bed with her hand squeezing that artery shut that whole time to get things to start to clot up, kendall started acting very very “off” again. By Tuesday morning it was evident that we were missing something major, and in the middle of it all was poor Kendall who just is absolutely worn out. I’ve never been septic myself, nor have i ever gone into shock from it – but they tell me it’s kind of like how crappy you feel when you have influenza, times ten.  Based on how crappy Kendall appears to feel, I do not doubt that for one second. I know she fights so hard to stay “happy”, or acting normal, in spite of how sick she may feel. So when I see my baby with absolutely no spunk left in her, and to be just beyond DONE with all of this….it makes me feel horrible. I knew something was wrong but we had no real information to go on as to WHAT it was.
We ended up adding back in antibacterial coverage  yesterday afternoon after we pulled new cultures off her new picc line – but really, it’s just our best guess. We don’t really know what else we are fighting here, only that we haven’t won the battle yet. After receiving her first dose of the gram-neg coverage meds was the first and reallly ONLY time I saw some of “kendall” come back, for a few brief moments.
After having an extremely rough night last night battling what we can only presume is pain, we were finally able to give her some relief using morphine. It is a horrible last resort – but one that luckily brought much needed rest to her poor little body. On rounds today we discussed that we have GOT to stay ahead of this pain – but there really are no good ideas right now about where the pain is coming from, or even if the pain is related to a possible location of infection. In short – we are still here kind of chasing the tail of a very sick Kendall who is fighting back with all her might.

It is sad to me to see her not wanting to play with her playdoh or try to paint something – things I would expect her to want to do by this point, if even for only a few minutes. She is gripping her new Frozen MagicClip dolls very tightly throughout most of the day, so that is some comfort I take in that she still has an interest in playing – just still doesn’t feel up to it.

I keep hoping that maybe after the next dose of  medicine or maybe after the next fluid bolus she’ll be “better”. She’ll have made “the flip”. I keep hoping, watching for it, praying for it. But so far, not yet. I’d normally be chomping at the bit by this time to discuss plans for home….even her doctor commented on it today that he knows something must still be up because i hadn’t brought up discharge yet. I told him that was because i only talk about discharge once I know I’m taking home a Kendall i’m capable of caring for at home. And we are most definitely not even close to that yet. But maybe tomorrow we will be closer.

IMG_7106 Maybe tomorrow this girl will make more of an appearance. This picture stopped me dead in my tracks when i saw it on my phone. I don’t remember taking it really, other than i’m sure she wanted me to do it sometime when we were waiting for sissies. She was probably all up in my grill about something and i was probably frustrated at her for that. And now i’d give just about anything to go back to this day – warm, happy, with a smiley girl who was full of her usual silliness. I know we’ll be back there soon….but she will be changed by this stay. She is in pain and I cannot fix it and i can’t make it go away and i can’t make her magically better.

But oh this smile….and her immense capacity for love. I cannot wait to have those back. I know they are waiting just around the riverbend. (Yes that’s from Pocahontas. i’m still trying to convince her to watch it with me. She’s got a few other things on her mind right now but i think i can probably make it happen before we leave for home!)

I’m just rambling now. I’ll wrap this up. I backdated a couple posts – one is an update on KQ i wrote less than 24 hours before she crashed.
Here’s to praying that we have more information tomorrow, and that maybe more smiles make their way onto her face tomorrow too. Thank you for being here, being part of this crazy journey with us.

Love~

me.

How i am.

This might be one of those really raw, rough posts to read. I’m kind of an emotional mess and I don’t really have a filter right now. So very many of you have asked how i’m doing this past week. Every time the nurse or care partner comes in, they ask “how are you mom, you need anything?”
and my answers are always the same – I’m good. Kendall’s good so i’m good.
When what I really want to say is….

Actually i’m horrible.

I need a shower. A real shower. a Really Long Really Hot shower complete with a non-dull razor that got stuck in my hospital bag and real non-hotel sample shampoo and conditioner. I got a quick one the other day when i was home for a few hours – but it was rushed because i was trying to cram a weekend worth of fun into a couple hours.  After i shower I need a pedicure. And a manicure. And a fluffy white bathrobe. And a huge glass of wine. I need to not have a care in the world for four hours while i’m thusly pampered.
I need a massage – but my back hurts too bad to ever get one, so I’ve never had one. Ask my chiropractor who just about gets kicked in the head every time he presses too hard when trying to give me an adjustment. And I also probably need an adjustment badly after a week on the boxes of bliss. I need good sleep. for hours.  I need to be on a beach somewhere warm. I need to have a really good breakdown cry, the kind where your eyes are so puffy the skin hurts, and then i need to laugh so hard my sides hurt.

I need a hug. Just a really good hug.

I need a good blowout and to get my hair recolored for fall. (yes NEED!)
I need to stop drinking cokes and eating nutella nilla wafers like it’s my job.

I need a job.

I need to feel like I’m doing a good job for my other three girlies, being the mommy they need.

I need to know my baby is getting really truly better….not just “out of shock”….but really recovering from this nasty bug that’s taken her down.  I need to feel like it is ok and safe to bring her home and complete her care and recovery there.

And then that makes me think of the hot mess i left the house in….and i need Alice from the Brady Bunch to work her magic on the laundry/dishes/crap we left out….(but i must insert a huge shout out of thanks here to my BFF who realized that the ice cream dishes in the sink were probably going to cause some MAJOR funk if left all week so she washed them by hand. Thank you my beautiful friend!)

I need a break. I just want a break.

But this is all coming from a place of exhaustion you understand….not just physical tiredness, but the kind of exhaustion that seeps into your bones and makes you feel like gravity has double the effect on you. It is not just that my physical body is tired, but my physical body literally ACHES from carrying the stress of this past week. My mind hurts from trying to analyze her labs and remember them off the top of my head and make this numerical information make some kind of sense so i can help my baby feel better. My heart hurts from watching her suffer so greatly this past week, to the point where even her stoic little self is just absolutely DONE with feeling so crappy. My soul hurts from the hard conversations i’ve had to have with some of her doctors who i have come to respect and love so much. Everything just aches….and it makes me tired.

So i guess that’s how i am doing, if you want to know the truth of it. I am tired, exhausted, worn out and doing my best to stay positive and keep my head above water. I’m sure i’ll be better tomorrow or the day after that, as we see kendall hopefully start to make that turn around the bend and come back towards “being better”. I know that she will…i’ve not given up hope. I’m just admitting to my own humanity, my own inability to always keep it all together. I know there are so many prayers being said on our behalf, and for that i am so grateful. So many of you have made sure i was eating real non-window-sill food and i cannot thank you enough for that either. Your tangible acts of love and support are SO SO SO very appreciated and i am sorry that i have not been able to properly keep up with thank yous.. I hope you know that i am beyond grateful to each of you though.

I’ll write a happier update later today I am sure.

Thanks for listening to my whiney rant.

and thanks for loving me in spite of it.

keep on keepin on.

<3,

me.

Recovery.

In case you had not seen the pictures on my or Kendall’s facebook pages – she has been extubated! Considering that I was not even in the mindset that she would need intubation this time, the weight that has been lifted by her breathing on her own and off of the presser support (no longer in septic shock) is huge. We as her family are SO very thankful for all of the prayers on our behalf and for the mercy of a loving God who has seen fit to allow us more time with our warrior princess.

This path of Kendall’s – the constant up/down swing of the pendulum of “health” – it is hard to explain unless you have lived it yourself. I have received many questions from some amazing new supporters (Kendall Krew we like to call you!) regarding why this or what does that mean and how does this affect that….it is hard to jump into the middle. And even for some of you who have been on this crazy ride with us since day one it is hard to keep up.

I titled today’s post recovery because it seems fitting. She is recovering from a horrific illness, but she is not “better”. She is recovering from the effects of the fungemic septic shock, which are many, but she is not back to 100%. And truthfully, she may not be for a long time. I am sitting here right now listening to the beep beep beep of her heartrate as it is monitored via the electrodes all over her body, and it is soooooo sloooooowwww.  Her heart is very tired. Even though she was ready for extubation and it was the right call – her body is still struggling to maintain enough energy for all of the demands on it. She is the compensation queen though – struggling here to compensate there and doing her best to just keep everything between the navigational beacons. None of her doctors really have a good explanation for me about this – it’s just one of those conversations that’s hard to have because the answers either aren’t there, or they aren’t easy to explain. Even though there is a very commonly held belief that Kendall’s main underlying diagnosis is mitochondrial disease, and because of that we know that her body does not make or sustain enough energy to operate all body systems efficiently – we do not have much more evidence past that. Because at the end of the day it really wouldn’t change anything. We cannot MAKE kendall’s gut work any more effectively than it does right now (which is really near nothing!) and we cannot MAKE her immune system function more properly.

I don’t really talk about Kendall having mito a whole lot – or at least – I don’t blame her day to day issues on mito. I accept that it is likely the reason we see what we see, but I spend much more time focusing on how to help her have the best day, week, month possible. I do not think in terms of years really. That is too much information to digest. most of the time I think in terms of chunks of hours. how can i make sure she is comfortable at school? how can i make sure she does well at therapy? if we want to go somewhere as a family on saturday that will tax her body, how can i start boosting it up on thursday to be able to handle that energy demand? Dwelling on the progressive nature of something like mito – it is overwhelming. It is too much. I don’t need to be reminded of the facts about this disease because we live it every day.
one of her doctors, the one who perhaps shoots straightest with me during these really rough times, told me the other day that kendall has had progression of her underlying disease, and that that is why her body went quicker into shock this time, and handled it much less efficiently in spite of the relatively good run of healthy months we have had. It wasn’t stated in any other way than just simple observed fact. But it was hard to swallow that. Because I know there is some truth to his words.

So we press on.

Kendall is doing well enough to talk about our plans toward home. Like I said – she is not “better” – but she will be out of the woods of needing life support, so we can handle things at home. If you have not ever taken a chronically ill child home from the hospital before – let me enlighten you a bit.
It is good, this going home. It means you are out of scary woods. you are still wandering around the edges of the woods – but you kind of know where you’re at. You will leave the “comfort” of the machines that beep out the vitals, the pharmacy down the hall with any and every med your child might need right there at your nurses fingertips,  the teams of doctors who make hard decisions so you don’t have to carry the weight of everything on your own shoulders, and you leave the amazing nurses who are at your child’s bedside 24/7 doing the overwhelming amount of medical care they need and dealing with the beeping pumps and the timing of meds round the clock.  These things will now rest solely on your shoulders.  If you are lucky, you have a nurse or two that can help once you get home, but they are not hospital nurses and they need to be updated on all the new conditions/symptoms/meds. This is not a quick five minute conversation. It wears you out to have to transfer information from doctors and nurses who work at a much faster pace than you to the nurses who work in the slower nicer pace of your home. But sometimes you don’t even have the nurses at home because they have all had to find other jobs while your child has been in the hospital. So you go home to do all the unpacking of medical supplies, and inventory the things that need to be ordered in your absence. You set up the chart of meds that will hang in multiple places around your house so you don’t forget an important medication in the flow of regular medications. You set the alarms on your phone as a second reminder, including the brutally painful 2am and 4 am ones. And unlike the hospital where everything has it’s own pump and requires only a quick change of syringe and pressing run – you have to set up new med lines and reprogram pumps and find a place for them to go because your home IV pole doesn’t have enough places for extra pumps.
You will now be the one sitting bedside watching the numbers on the monitor and hoping your home equipment isn’t lying to you about numbers and have to make your own decisions about what is “ok” and what might mean that things still aren’t hunky-dory and you will have to weigh in your mind if this is ok to leave overnight or do you need to wake up the other three kids and take them to someone’s house at 2 am so you can take the sick one back to the ER and await transport again to the hospital three hours away? you have to juggle all of the balls of this decision and play a really fun game called “risk/benefit ratio”. Is the risk of ignoring this greater than the benefit of addressing it and dealing with all of the other logistics required to address it?
You will be in your own house – able to do your laundry without being worried that someone else will steal something or will stop your load mid-cycle and set your wet clothes in a random place in the family waiting room. You will be able to sleep in your own bed that isn’t made up of vinyl covered boxes, but you will still need to give so much medical attention that you will hardly get to see it. You will get to shower in your own glorious shower with a shower head that sprays from above your head and with enough pressure to actually wash your body vs the elbow height dribbling of the family room shower. But this shower will need to be timed well between meds on the chart and alarms on your phone.
You will be home, with a child who has survived another life-threatening septic episode, and you will be grateful. So very grateful. You will perhaps grumble a litle to yourself under your breath as you are picking up the 38 milion polly pockets she had left laying around the day before she got sick, but you will catch yourself because you realize that soon enough she will be making that mess again and for that you are SO thankful.  You will try not to think about “next time”, and you will try not to think about what this time has taken out of her. you will focus on the here and now and getting through the next couple hours.  That is all you can do. So you do it as well as you can. Knowing all too well that “next time” will likely hit you out of the blue on a random sunny tuesday morning and you will start the cycle all over again.

This is what it is like this week.
You will see the pictures of Kendall tucked into the car. You will rejoice with us that she is making it HOME. home being such a beautiful word.
And you will rest easy that she has made it. She has survived.

I will be doing the same.
But please don’t stop the prayers then. I will need them more than ever once we get home. I will be going home this week (we hope!) with less than ideal central access for Kendall (we have to place a picc which rarely works for more than a week or so), with no nursing, and no husband (he left for his business trip today after postponing it last week). I have done it before and I will do it again – but I cannot do it alone. I can do ANYTHING and EVERYTHING through the supernatural strength that can only come from God taking pity on my soul and boosting my spirit when I need it the most. 
So this is how recovery will be. We will do our best to get miss kendall all tanked back up, get her legs working again, get her strong enough to go back to school if we ever get a nurse staffed at our house/school.
She will recover, and we will go back to living life. For this – we cannot thank you enough for your prayers and love and support.

We will keep on keepin on, because that’s how we roll around here.

terra.

Related Posts Plugin for WordPress, Blogger...