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

Cinderella.

I am not real sure where or when or how the sudden obsession with cinderella started.

Probably the way most obsessions with princesses that little girls have start. Slowly, and then gaining speed til they are near full=on panic mode when said obsessed item is not readily available. Don’t get me wrong – Minnie Mouse, and the entire “Hot-Gog” (Mickey Mouse Clubhouse) gang, are still crowd faves around Kendall’s world. But all of a sudden, she wants to watch Cinderella, pick Cinderella stickers out of the box, read the Cinderella story out of the Disney Story Treasury. (and just to drive me even MORE insane, the digital copy of Cinderella will not be available until October. That’s fun trying to explain to a frantic 3 year old who just wants Cinderella on the crack-pad NOWWWWWW. I know. She’s spoiled. I’m working on it.)

I digress.

One night after her surgery, when we were trying to pinpoint the pain, and somehow figure out how to differentiate “it hurts everywhere” (sounds a lot like “eeeehhhhhhhhh-ahhhhhhhhhhhhhhhh” very loud and piercingly shrill) from “this is what bothers me”, I started talking to her about the princesses,IMG_4278 and about how she had the princesses with her. So we started naming tubies and attachments. Somehow, the vesicostomy tube became Cinderella (and the foley cath was Snow White) (also her broviac is now bibbidi-bobbido-boo). So whenever she would have one of her pain episodes, we would try to figure out if it was Cinderella or Snow White that was causing more pain. It’s kind of still stuck around, even though they pulled “cinderella” out the other day at her post-op followup. We still have to put a new cinderella in throughout the day/nite, so I guess it’s good that she still refers to it as something.

Anyways – my point in all of this was just to update how she is doing after the surgery – with Cinderella. And I am happy to report that finally, finally, finally – things are improving. She still has a LOT of pain, mostly at night, if she’s overdone it during the day. Trying to figure out how to best help her bladder drain and empty all night long without the foley (more permanent indwelling type of catheter she used to have in her urethra) has been challenging. Last night was very tough. Today was better. She was able to go to school last week, and that is a huge blessing to see her recovered enough for that! For those wondering, she goes on Tues/Thurs for 2.5 hours. She takes the bus to school, so it’s another hour total that she is gone. When she has her next IEP, this time may be increased depending on her endurance, but even this amount usually zaps the life out of her, so we’ll see! With a November birthday, she gets another whole year of preschool, so we don’t need to push her by any means!

Her surgeon/urologist was very happy with how her tunnel (the surgery site) looks and is healing, and cathing it is very  very easy. If you have never had to catheterize your child, let me try to explain the process to you. The first way is to do it through the urethra. This is as fun and painful as you are imagining. I wrote in an earlier post about how it is pretty much impossible to do to Kendall unless she is under general anesthesia. So now we “cath” her through this tunnel in her abdomen. Literally you just lube up a small catheter (it looks like a clear coffee stirrer), and slideIMG_4326 it in sideways. Urine starts spurting out the other end so you better have a diaper/cup/plastic container of some sort handy – and away we go. The hope is that at some point she will tolerate not being constantly cathed – but for the next few months she has that catheter in pretty much all day long. This is partly to continue letting the stoma form/heal (kind of like how you have to wear earrings all the time for a few months after you get them pierced), and partly because her bladder is still so traumatized from the surgery/infections that she literally cannot handle the pressure of “retaining” urine at all. She has still not done a whole lot of urinating through her urethra and it is mostly coming out of the “Cinderella” tube (we double diaper her, so it’s pretty easy to tell). We have had a few trial times without a tubie in Cinderella, and they do not end well or last more than a few minutes, so we’ll work up to more time in the next few weeks.

Overall, things are moving in the right direction! I am so relieved to feel like we can FINALLY stop worrying over her every minute of every day. It’s been a very long month. Today is exactly one month post-op.

As to Karissa’s MRI for those who have asked – the MRI itself went very smoothly. Due to the fact that she had to remain face-down for an hour, and the cyst/tumor we are looking at is very small, so any slight movement could make the images look bigger/smaller than in actuality – she did undergo general anesthesia. I was very impressed with the anesthesiologist down at Children’s Chicago, and he complimented me on being able to be so clear and concise with the information that was actually helpful to him. I wasn’t super impressed with IMG_4321 the PACU care, in that Karissa was literally setting off every alarm she was hooked up to and the nurse was just anxious to go get her lunch so she just unhooked her from the monitors instead of manually checking or further monitoring. (It was just things like a crazy blood pressure, high respiratory rate, spiking then dipping heartrate – all things that I knew were cause of the GA, but still, I would have rather had another few minutes of reassurance that she was indeed stabilizing.) At any rate, I somehow got this floppy sack of potatoes carried the two blocks through the city to the parking garage, propped her up in the lobby, validated the parking ticket, and turned around JUST in time to aim Karissa’s spewing of stomach contents into the trashcan and NOT on the nice man’s fresh cast that was behind us in line. Pretty sure at least 40 other people in the lobby decided to forego their lunches due to the show….

Anyhoo – we will find out the results of that MRI in a followup appointment with Karissa’s neurosurgeon in early September. Or maybe its the 21st. I’m not sure. Either way – its not THIS WEEK and therefore it’s not currently occupying precious real estate in my brain. Also, it is weird to say that your 8 year old has a neurosurgeon. She also has a neuropsychologist. Who we WILL be meeting with this week for the results of the testing Karissa has been doing all summer. Due to the fact that our insurance has been sending us pamphlets of info about “how to deal with your child’s ADHD diagnosis”, I’m thinking we are headed for news that she has something like ADHD, but whatevs. We’ll deal with that info if/when it comes. She LOVES her teacher, cries every nite from the homework, and in general still spends a great deal of time gathering clouds, but she is still my baby boogerton.

I mean, gosh dang. When did these kids grow UP??? I can hardly handle it some days. Ok I can. I love them – i loved the baby stage – but I also LOVE seeing the little people they are all becoming. Ok I have derailed any sense of purpose or direction this blog post had…i think its cause we need to eat. Time to go rustle up some grub for the crazies running this place…

Thanks for checking in on us!

Terra

(seriously – it would make my weekend complete if I could get 300 facebook fans for the Terra Talking page. Click on the “f” icon up there at the top of the page  – it’s bright pink. Like it. Do it. Thank you. Love you.)

{Be} Confused!

Well, as i had hoped, Kendall’s emergency warning symptoms of Sunday morning seem to once again just be the effects of a very wonky autonomic system! She spent most of yesterday laying on the couch quietly watching her Hot Dog, Eggo (Diego), and Berry Cort-cakes – temp still very slightly elevated, but no more bleeding. We held the new formula all day per instructions from her complex care nurse, and restarted it last nite by adding a teaspoon in with her regular old stuff. Our best theory right now is that it all was just a reaction to the new formula, since she has reacted every other time we’ve tried to switch formulas by having a pretty good GI bleed – they are just typically lower gut reactions, not upper like Sunday’s.

The reason we are trying to switch formulas, for those who are wondering, is because she is still on an infant formula. The kind most babies are fully weaned off of by 1 year because real food starts to replace those concentrated calories. It is pretty high in fat, as babies need a lot of fat for brain development – plus she is getting a precise mixture of fat (lipids) in her TPN every nite. Thus far, her body has obviously been burning  through them pretty well as her weight should be pretty hefty given the amount of calories she is getting. But in order to continue protecting her liver, we’ve got to get her on a more suitable formula. we can’t even talk about weaning the TPN further until we can get enough formula into her gut to prove that she CAN take in enough calories to sustain nutrition and hydration.

The problem is that most toddler/pediatric formulas are pretty dense (higher in calories per ounce), which seems to be where we are running into problems. We could dilute that out, but that really isn’t solving any problems. All it means is that we can get watery formula into her, and even then we would be making a major sacrifice in her hydration status. The first step is getting a new formula to work. So even though I had started with a half/half mixture of new formula to old last week that preceded this chaos of bloody gross output – we are going to go even SLOWER…. One teaspoon at a time. If you know me you know how hard this is. I HATE slow plodding progress. I want results NOW. I don’t want to take just one pill and wait to see if it works – I want to take a handful and make SURE it works. I don’t want to just clean my sink and be proud of that progress – I want my whole house to be magically sparkling in under ten minutes. One teaspoon of formula at a time is about as torturous as peeling off my own toenails.

But if that’s what it takes, then that’s what we’ll do. I mean, I know I’ve joked with Kendall that she’s a diva and a princess before – but this surely seals the deal! Of course if we run into similar problems at some point, with the bleeding increasing and the discomfort becoming obvious, there are a few other formulas left to try. since we’ve already had similar results with some of the more “common” kinds of elemental toddler formulas, we are somewhat limited – but I have faith that we will find just the right one that will work and keep her growing and make her gut happy enough to tolerate “food”.

And of course this is ALL assuming that the blood was even a reaction to the formula. It seems the most logical explanation at this point – but everyone is still mostly shrugging their shoulders and hoping it doesn’t happen again. No one more than me! She is running around (ie – being drug around in the laundry basket by kaylen) again this morning – which is encouraging. I can breathe a little easier! Luckily the girls are off school again today for Teacher Institute Days – I don’t know that I would have sent kendall anyways even if she HAD had school just based on the last couple days.

In Other Medical News…

Our beloved pediatrician called yesterday to leave a message for me: “don’t worry or panic yet – but it looks like there is a tumor on Karissa’s MRI. I am trying to get in touch with the neurologist and I’ll be in touch once I talk with him.” Note to self: do not listen to voicemails from the pediatrician while driving on the freeway. I about swerved off the road. now I do realize that in ALL likelihood, they are both looking at the same thing. That what the neuro termed a “cyst”, Dr. N is terming a “tumor” – and they are more than likely both quite benign (normal) in nature. Alternatively, Dr. N could be looking at more of a full report whereas we are pretty sure Dr. K (neuro) only got the “initial report”, and that upon further investigation by a more experienced radiologist, the cyst/thing actually looks more like a tumor. Again, likely benign as it has only just now photo started causing “issues”. I think I am doing a pretty good job at staying mostly calm while we wait for more info. I don’t know if they saw it on her spine or on her brain – as they did thorough imaging of both. I know that Dr K referenced the cysts as being on her spine in his office the other day – so hopefully this isn’t some other new thing somewhere else!

And then at LONG AWAITED LAST we have Kaylen’s consult with the ENT tomorrow to discuss tonsil/adenoid removal surgery. I have so much hope vested in doing this surgery and hopefully curing all of the issues we are seeing in poor kaylen – most of which we assume are stemming from next to no sleep due to what we believe is pretty bad obstructive sleep apnea. (Her tonsils and adenoids are quite large, meaning that most of the night she is having trouble maintaining proper pressure in her airway, meaning her brain is waking her up a lot of times to remind her to breathe. meaning she is up for the day after about the 89th time of this. which is roughly around 4:30 am. Not a good combo.) No she has not had a sleep study – everyone except Kealey has been “recommended” for one, but there aren’t a whole lot of sleep centers equipped for peds around here, and even if there were, insurance fights would take months. I am sure that at some point this year at least one of the K’s will have a sleep study –and once that first one is through, insurance will likely approve the others. This is all based on her rather obvious symptoms of apnea, both asleep and awake. Hoping he has a good plan to get our whole family some relief soon because Kaylen’s behaviors are becoming extremely unbearable to us all – and you can just look at her and see how miserable she feels.

And as i am about to hit enter I just got an update from her nurse that Kendall’s temp is again back up. Awesome. So we’ll see how much fun we can squeeze outta this day!

thanks for checking on us!

If you aren’t already a fan of Terra Talking on Facebook – click over there to the right on “like” – you’ll get the blog updates and if we ever were to have to go in for Kendall’s stuff – I would update it there. Help me get to 200 fans by the end of January please! (stupid silly personal goal – I know far more than 200 of you read here every day – so stop lurking and come join the fun!!!)

 

Hoping for a little more calm around here~

 

Terra.

Week {1} review.

 

Yeah there is probably NO way I will keep up with the week in reviews – but it’s late on a Saturday nite, and life is pretty boring, so it’s what you get!

All in all – it was a typical crazy week around these parts – hospital visits, kids driving momma crazy, ben gettin’ tattooed again, Chick-Fil-A, coke and m&m’s. And we got pretty much all of that in the next week too (minus the tattooing.)

tomorrow we will get a nice family dinner together to try to fill karissa up in preparation for her MRI on Monday. She is scheduled (hospital time) at 4:30 pm on Monday. which means she will be NPO (no food) for just about 24 straight hours by the time she gWeek1Reviewets out of the MRI/awake enough to eat again. No – i’m not kidding. And that is IF – A HUGE IF!!! – they are running on time. Which they will probably not be. I have already let the powers that be know that this is not an ok plan, so they will at least be starting a dextrose IV for her as soon as we check in Monday afternoon. I asked her what she wanted for her last good big supper for a while and she asked for fried rice. ???? It’s not like that’s something we have very often (they usually get plain white or brown rice if we eat chinese or hibachi) – but I had some the other nite with soy sauce on it – and she said she wanted “that super special yummy sauce you put on it”…such a weird kid. So we will try to find a good fried rice place with extra special soy sauce for dinner!

We will load up the ipod with a playlist just for her, make sure we have the portable DVD chargers and a few good movies, her pillow pet menagerie, and off we will go! Actually, since it’s so late in the day, she will probably go to school for a couple hours first – but she has such an early lunch, it just seems cruel to make her sit through that when she can’t eat a bite. (and in case anyone is wondering why she is NPO – she has to go under anesthesia for the MRI. And in case you are wondering why she needs the MRI, refer to this post!)

And anyways – I’m still crawling out from under the huge pile of laundry we are all of a sudden under, thanking God that we are all mostly healthy at the moment, and keepin on like we do. Sorry this is like the worlds boringest update. Sometimes boring is good!
Peace out party people – I’m sure i’ll have LOTS of interesting stuff to post on Monday. Or Tuesday!

Have an awesome weekend – enjoy this crazy gorgeous January weather!

 

terra

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