Live the Life You Imagined.

When I was young and full of idealistic romantic views about how my life and love would be one day – It never looked anything at all like what my real life is.

I loved this quote from Henry David Thoreau and I always “imagined” my life being about me finding myself deep in the woods on Walden Pond too, and being this amazing writer and living this quaint quiet little life.

Life has a funny way of shaking up what you thought it would be and making it into probably what you need, but never would have asked for.

Today I am torn between my desire to go double fist two Venti Starbucks quad shots and be the most productive person on the planet, and curl back up under the 14744-Live-The-Life-You-ve-Imagined covers for a good cry. I will probably end up doing some combo halfway in the middle.

Last week the beautiful daughter of my best friend passed away and I have walked through the Valley of the Shadow of Death with her over these past days. It is beautiful and heartbreaking and really super hard….yet I wouldn’t have been anywhere else in the world besides right there with her. In the hard moments and in the glorious ones. I have cried so much this past week that I feel dehydrated. And just when i think i’m done crying, something happens to set me back off. I have a whole other blog to write about all of that…

And in the midst of all of that emotional upheaval, I am preparing for Kendall’s surgery tomorrow. It is the one we knew would have to happen when she started having her line issues/infection a couple weeks ago. Rather than sit in the hospital for ten days, they released us to home on IV antibiotics to clear the infection and plan where and how they are going to either fix, replace or give her a whole new line. There are no other spots to put it. In almost 8 years of constant use and abuse no small veins should ever have to endure – hers are scarred over, clotted off, or otherwise just not strong enough to support what is needed of them. I don’t talk about this a lot because, well, it really sucks. I do my best to shield people from the harsh realities of what Kendall actually lives with, endures. Her battle is one of quiet yet fierce strength, and to overdramatize that serves no purpose. But this is where we are at. A world class surgeon scratching his head and unsure what his plan will be once they wheel her into the OR tomorrow. A momma who is scared shitless about the ramifications of this surgery. A little girl who has endured countless surgeries and procedures but THIS time has been able to voice her nervousness, her fears about how it feels to wake up with the tube in her throat, how bad it feels when she gets too much gas anesthesia (yes she uses those words!)

This surgery, more so than any other before, I have to leave in the hands of a God who has never failed us before. And oh how hard this is. It is SO unlike that peaceful little idyllic life I had imagined. I am in turmoil, there is chaos surrounding me in the logistical planning of my job, activities for my babies, not leaving them alone but not knowing what the hospital stay is going to look like, making sure that everyone around me has everything they need because that’s just what I do. I keep everyone happy and moving and doing what they need to do. But this….this feels overwhelming.

I know there’s all these happy little trite things you say to someone in my position. I know all that because I’ve said them myself to others. But oh how my heart hurts right now. These are hard days. They just are. There is no sugarcoating how scared I feel, how I cannot stop crying for reasons I’m not even sure of, I just know the tears fall on their own, how I don’t know how to just “fix” everything and make it all better.  I cannot sugarcoat that and I don’t expect anyone else to do it for me. I will find my peace when I quiet my thoughts and my heart. I know I will. Right now, I just need to get this all out.

And even in this, the journaling of these thoughts and feelings in my space, like I always have in the past – it is helping. I have held my pain in deep inside for so long, but this is where I feel happy…writing my thoughts. I will get back to doing it more regularly.
Today, I will pray over Kendall’s team of doctors that is meeting this morning to talk about our best options for Kendall’s line surgery tomorrow. I will pray that the God who has done miracles before will miraculously open her little veins, will strengthen them, will guide her surgeons steady hands to exactly where they need to be. I will pray for my little girl who feels a nervousness no 7 year old should have to feel. I will figure out how to pay for the stupid American Girl lego’s she is asking for for after surgery and I will put a smile on my face and i will rock her and tell her all of this will be ok. I will be momma bear to that know-it-all anesthesiologist and tell him no you may not use full gas for this procedure even though it’s easier for you. I will tell Kendall I will protect her always and no matter what.

In the words of Marcus Mumford (<3!)

” I will hold on to hope, and I won’t let you choke on the noose around your neck.

I’ll find strength in pain and I will change my ways

I’ll know my name as it’s called again.”

 

I will figure this all out and I will get through it like I always have in the past. Because it’s what we do.

I may not be living the life I had imagined, but I think maybe in a way I am. I always imagined that I would be the heroine of my own story, I would be strong, I would endure under any circumstances. And I think i’m doing that ok.

And now I have to go get that super strong coffee and start doing all the things I have to do.

Peace out party people~

 

T

September the First.

I don’t know why i’m always so shocked to see how long it’s been since I last posted.

But still…. June?

September will be better,  I promise. I already have lots of fun mildly eye-roll-inducing SUPER INTERESTING posts lined up.

And even a few vlogs! (speaking of, I have a burning question regarding vlog vs blog on a specific topic on the Terra Talking Facebook Page – go over there, like it if you already don’t, and help decide the fate of my awesome story!!)

So since most of you come here to read about Kendall, and how she’s doing, I’ll start the month off with that.

Overall, she’s doing good. Other than the crazy bug bite from hell that turned into an abcess/cellulitis that required hospitalization and ten days of IV antibiotics and a week of IV stress dose steroids, she’s been doing a good job holding her own.2SS_6375

But oh…how I wish you could see what I mean when i say she is exhausted. How much my heart breaks for this little girl who shoulders up her backpack, full of two pumps and two bags of fluids the last couple weeks, and wears it on the hot sticky days like a champ, never complaining, never whining about it, just maneuvering around with it because this is her life and this is what she knows how to do: LIVE.

She loves going to school. Absolutely ADORES it! It wears her out so badly (and yes, I get that all first graders are tired and adjusting to a new schedule – I was prepared for some tiredness but this is a whole other level of exhaustion for Kendall!), but she puts on that crazy smile of hers and she keeps her chin up and she does her absolute best to pay attention to the teacher and to keep up with the class and she’s trying so hard. i’m so proud of her. She’s amazing.

This infection she had – well, it hit me almost as hard as it hit her. She had JUST gotten IVIG, the magical unicorn tears I have held up for the past two years as being the reason she has stayed so healthy.  And as a quick primer on IVIG for those who are newer around here – it stands for IntraVenous ImmunoGlobulin.  Your body’s “immune system” is complex and multi-faceted but for space and time constraints i’ll boil it down to this: your blood has three main components of immunoglobulin which are technically your “fighters” against bacteria, viruses, fungi, etc. You have IgA, IgM and IgG. IgG is the main one you need in order to have an immune system as most people consider it.  Contrary to popular belief, “picking up every cold under the sun” is not actually a sign of a weak immune system. It’s a sign of a good one – your fighters kick in! You get the fever (WHICH IS A GOOD THING!!! It means your body is fighting invaders!), you get a runny nose, etc etc – and you fight off the infection thanks to your IgG.

Then we have Kendall. She technically HAS IgG in her blood, and sometimes she even has a really good amount of it – but it’s like having an army of soldiers who are all narcoleptic and/or otherwise incapacitated. Her own native immune system doesn’t recognize invaders until it’s WAY too late. Even with the IgG that we infuse into her bloodstream every few weeks, her immune system is extremely lazy. So what happened a few weeks ago is that when she got a bug bite on her little booty cheek, her body didn’t send the soldiers to help control the spread of the bite reaction as is typical. Hers went from “regular mosquito bite” to “holy crap what IS THAT THING!?!?!?!!?” in about 72 hours. And we were running IV benadryl to try to stop it from getting worse and it was just getting out of our control almost before our eyes.

And i was glad that we are at a place with her team that when I send an email (with a picture) and say  “ummmmmm…..help me?”, they jumped into action. I didn’t have to spell my fears out for her doc, he knew what I was thinking. This is the kind of stuff that takes Kendall down hard. Maybe not right then, but if we had not nipped that in the bud, it would have easily been systemic within the week. Septic, most likely. A blood stream infection that would wreak havoc on her organs and little body – all from a bug bite.

Now of course we have no way of knowing for sure – and no one really wants to try to find out. But the fact of the matter remains that Kendall looks amazing on the outside, and yet her body fights a raging war on the inside, every single day.  I am SO thankful for our new nurses who are very on top of learning all of Kendall’s “Kendallisms” and helping me manage the delicate balance of meds/fluids/vitals that keep her able to go to school with a smile on her face and sit in that little desk like the other kids in her class and  live her life the best way she knows how.

A bug bite. A little regular probably mosquito bite. And it was as if her body didn’t even recognize that it was fighting what was quickly becoming a massive infection. I’d be lying if i told you it doesn’t scare me a little bit for this winter.  I have NEVER wanted to live my life, or hers, keeping her away from living her life. I’ve never tried to keep her quarantined from things (although I like to think i make decisions in her best interest as far as when to go and when to stay home). I don’t make it a huge deal that my kid has basically no functional immune system. It’s just not how I’ve ever wanted to treat her or live. But my gosh…to see what just happened, it makes me stop and think. And overthink probably….

So that’s where she’s at. With currently a very minimally functioning immune system, but off the antibiotics and steroids for now (YAY!!!! Those drugs are brutal on her and I hate when she needs them, even though I am SO very grateful for them.)
We are still going up to Milwaukee once a week for iron infusions – I think we only have three more left though! After that course is done, we will re-run the labs and see if we have done enough boosting to let her coast for a while. My impression is that we have definitely helped her feel TONS better, and I don’t see the massive crash after a few days that we were at the beginning of the infusions. But I do wonder how long that will “stick” once we stop the infusions.

School is going…..well…..it’s going! It is becoming more obvious and apparent that there are some MAJOR lags in Kendall’s ability to keep up with the class – and while that is in part due to her needing to miss one day each week, it is in larger part due to the fact that she has ALWAYS had struggles with actually learning and retaining the information taught in class. That isn’t to say that she isn’t smart as a whip – cause she is! She can throw around medical terminology correctly and tell you about feeding pumps and IV pumps and discuss IV medications better than a lot of medical students probably. Yet – she can’t recall the sounds each letter makes and spell a word off the top of her head from her word wall list. She can’t tell you how to sort a group of like words. It is hard to put it into words exactly, what we see and observe, all I know is – she is struggling and I refuse to let her continue to struggle without some major help.
So next Tuesday we will be shlepping BACK up to milwaukee for all day neuropsych testing to determine what, if any, learning disabilities Kendall has that we can identify and hopefully help address. It isn’t like this news comes as a shock. Her doctor actually put in the referral for this testing LAST YEAR, but insurance has finally approved it and the clinic finally has an opening. While i know this will be yet another “thing” to add to the diagnosis pile, I am hopeful that at least this one we can attack. This time we can maybe help solve a problem instead of just minimizing damage.
This post is all over the place and I feel like there’s so much more I could say about where Kendall is at….or my feelings on the matter. But I’m sure they will come out in bits and pieces in other posts over the next month.

Thanks for sticking around if you’re still here. I hope to have lots more to talk about over the next few weeks and it’s so nice to know you’re listening!

Have a beautiful evening, party people. See you on the flip side…

Terra.

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

Making Sandwiches.

For those of you who actually read the titles of my blog posts (that i AGONIZE over!!!!), you might think this one is a little strange. But I’ll explain it. See, i have this friend (well, i have lots of friends actually, i’m very blessed!) – but one crazy friend in particular whose daughter also has special medical challenges like Kendall, who sent me a message one day out of frustration that she just wished someone would make her a fricking sandwich. That’s all she wanted. Just one simple act of caring, of being cared for instead of being the constant caretaker. It spurred on some good conversation, and she shared the idea with a few other moms she knew in similar circumstances, and before long it became a “thing”. A place we could brainstorm ideas to help each other out on a practical basis.

This is one of those posts I struggle with knowing how to write. I HATE feeling like this is me asking for a handout, or for more help than we are already so blessed to receive from so many amazing friends and family. But i have been in that place before, watching friends struggle, wanting to DO SOMETHING to relieve their day to day stress, if even in some small light-hearted way, knowing so well that some days, the littlest things can mean so much. So if you choose to continue to reading this post talking about practical ways to help our family out – but beyond that – to come alongside ANYONE you know who may be going through something bigger than you feel capable of knowing how to support them through, then I will be grateful, and hopeful that maybe you come away with some new ideas. Please know that this is not intended in a spirit of asking for things – it is intended to answer the questions I get from so many sincere friends wanting to offer some hands on help. My answers sometimes change based on how my mood is that hour, or how things are going in this room at that moment, and sometimes i feel like my answers are so ridiculous that i just can’t even answer the questions! So with all that being said – I present – a few ways to “make sandwiches” for your friends and family!

First I want to say thank you in the biggest way possible to the many of you who have come through with warm meals for myself and ben while we are in the hospital. A few of you have even sent meals to our house and i have to tell you – Food is one of the biggest ways you can tell ME you love me. It means SO MUCH to me to not only be able to feed myself, but have food for the kiddos, especially during the past few weeks when my time with the big girls is limited to a few hours and cooking is just not something i feel up to doing. But even though it is not easy – some of you have spent multiple frustrating hours on the phone dealing with local places to the hospital to have food delivered here in my name – and beyond just the good food, i’m super grateful that you took the time and persevered through the red tape to get me food. Know that I appreciate the time and effort JUST as much as i appreciate the food! It touches my heart and soul in ways I find hard to put into words. And for those of you who brave this insane construction traffic to actually bring food AND a hug to me? You are my heroes. Your very real “sandwiches” (food) are one huge way of helping not only our family – but any family you may know who gets stuck in the hospital for days on end! It is not always easy to get food to hospitals – but know that when you can and do, it is huge!
And some of my food fairies know me well enough to know that i often dont have enough hunger drive to even put into words what i want, nor will I usually ask for what i really want because I don’t want anyone to go out of their way. So just taking a chance on food that you THINK will work is still always a good thing. Unless you know of specific allergies or dietary restrictions – most of the time we are so “numb” to the real life acts of eating and hunger that if warm food shows up in front of us, we will eat it. So please don’t feel like you can’t help with food or meals just because you don’t have specifics. For SO MANY special needs families, food is just like sending hugs. not even just in “crisis times” – but any time. Life with kiddos like ours is hectic in ways that cannot be described. It’s crazy, but it’s our crazy. We pull on our boots and git R done because that’s just the way it has to be.

In the same vein as warm food (or fresh meals, or even meals that can be put in the freezer for SUPER crazy nights at home!) – is snacks. Especially in the hospital. Having some awesome friends who know my penchant for mindless eating send a couple bags of snacks i can keep in our room cabinet has been my saving grace this stay. Nutrigrain bars, mac and cheese cups, cookies, nutella, mmmmmm nutellaaaaa……..I got sidetracked. Anyways – again, short of specific allergies or diets – if it looks and sounds good to you – it will probably look and sound good to an exhausted mom or dad in a hospital room who hasn’t been able to leave their baby’s bedside in a few hours and just needs some quick fuel in their bodies. don’t let your thoughts of “oh i don’t know what they like” hold you back! Just throw some stuff in a bag and send it off!

Most of you have heard me in particular harp on this one – and i’m sure some of you are sick of hearing it – but we DEFINITELY would not survive without gas cards. It is NOT an easy choice to have all of Kendall’s care be up in Milwaukee when we live south of chicago. In fact sometimes it is downright scary. And I second guess myself all of the time. I HATE how far away we are from home, from my big girls, from my “real life”. So we try to budget in for the random hospital stays, knowing it will blow our gas budget right out of the water. But even with the most careful planning, you never really know how it’s going to hit you til you’re in the throes of it. So many special needs families need to take mulitple trips to doctors and hospitals and gas cards are SUCH a nice gesture. Even if it’s not enough to “fill ‘er up” – knowing that your journey was thought of, cared about, prayed for by someone who took the time and money to get a gas card is an amazingly practical way to “make them a sandwich”, to be a real help.

But even then – there’s some things that mean a whole lot that you might not even think of.  Gift cards to places like Walmart or Target might seem like an odd thing to give to a family in the hospital – but I can tell you, on the very rare occasion we get to get out for some fresh air either while we are still inpatient or once we get home – it feels like the best kind of freedom ever. Sometimes it’s been a long time since we’ve felt “normal”, and being able to just wander the aisles aimlessly and pick out a few small things for ourselves or maybe for the sick child or their siblings, it can really mean a lot. Think of the last time you ran into Target for something you “NEEDED” and came out with 100 other little things that somehow found their way into your cart. It happens. I’m guilty. But it’s that kind of fun “splurge” that can sometimes mean so much to a special needs momma. Or just pick up a few fun things that you think might cheer her up. who doesn’t love a new lip gloss/chapstick/mascara/pair of sunglasses/clearance pink floyd t-shirt???? All i’m trying to say is – our lives are so hyperfocused on our sick child, or hospital life, or fill in the blank with whatever stress – and sometimes the simple act of buying a little something new helps us regain a thread of sanity, a small sense that things WILL be normal again someday. Maybe this sounds trite – and to some i’m sure it actually IS trite – but for me – i ADORE nothing more than getting a fun package packed with a bunch of silly fun things. Lip gloss, chapsticks, gum, socks, hand lotion, mascara, fun pens, markers, a journal, itunes cards, hair binders (I call them binders but i think they are just “elastic hair bands”), antibacterial stuff that doesn’t smell like the hospital stuff, travel sized toiletries (or condiments – those work too!!!), travel sized shots of liquor…JUST KIDDING!!!! A water bottle or one of those nice sturdy plastic tumblers with the lids so we remember to drink water, RAZORS because you forget how stubbly you get when your showers are limited to 5 minutes of hot water trickling out of the family shower, body lotions, body sprays… But seriously – you get the idea?
Practical hands-on help in the form of doing our laundry, or just come helping clean/disinfect the house is also SO SO SO huge. But comes with it’s own set of challenges sometimes.

I guess my point is here is that ANYTHING is always appreciated. I think sometimes we feel like we won’t do the right thing, or that what we want to say or do or send would be viewed as stupid or unnecessary or wrong. And the truth of the matter is – it won’t. Whatever you do, it will be right. Because it was done with a pure heart, and your intent was to make them feel loved, thought of, not alone. Sometimes that’s the biggest thing we can feel is just not alone. Oh i thought of one other thing i want to say – for the moms you might be thinking of who endure battles beyond what you think you might be able to face…and most of us as women are bad about this in general – but taking care of or, shocking thought, PAMPERING ourselves. Maybe a gift certificate to a local salon to get a haircut/trim, or a mani/pedi, or a facial spa treatment. Maybe it’s a gift card to Ulta or Sephora for a quick pick-me-up makeover. We often feel worn out, worn down, frumpy and utterly beyond help after a couple weeks of hospital life. The gift of a few hours to go out and get a brand new look is utterly exhilarating! (Ok maybe that’s just me….but again – i’m just trying to help you see some out of the box ideas!)

I wanted to post this a few hours ago so i’m going to wrap it up here. I hope that this is taken in the spirit it was intended, and that is to say that just looking for every day ways to show someone you’re thinking of them – whether they are living in the hospital or have just had a rough week – it means a lot. it’s a very practical way of “making them a sandwich”, so their spirits can be boosted.

For those of you who HAVE specifically asked me what I need, what my family needs, or how else you can help- obviously any of the above ways are fabulous. We do have a paypal account set up for Kendall’s “extras” – things that insurance doesn’t cover or would never think of – like feeding us in the hospital, the gas for trips up here, etc. You do not need a paypal account to use paypal – you can just enter your debit/credit card info at paypal.com and direct it as a “gift” for family/friends to hopeforkendall@gmail.com  And in the message you can specify if you want it to go towards family expenses or specifically to Kendall’s medical needs.   A HUGE thank you to those of you who have helped our family out with this  seemingly never-ending stay. I am overwhelmed with thankfulness for our amazing family and friends.
If you’d like our address for cards or a package full of condiments – please send me an email at terrarist101@gmail.com (if you click the little envelope at the top of the page it also will direct you to my email!)
And if you have any other questions or suggestions you want to add here – feel free to leave it in the comments!

Thank you so much, dear Kendall Krew and faithful Terra Talking friends.

it has been a long and hard day getting the news we are here for at least a few more days while we try to figure kendall’s body out. I do my best to stay as positive as possible but the utter exhaustion is definitely starting to wear me thin. (Not LITERALLY thin, because then that would be awesome,,,, but like, my patience is thin. my tolerance for stupidity is thin. my nerves feel frayed and thin….)
Your prayers and love from afar are ALWAYS ALWAYS ALWAYS so appreciated. Even if you never get the chance to send anything but that – know that i feel and appreciate every single one of those good thoughts. We all do. Always.

keep on keepin on~

 

terra

YES – practical hands on help is always appreciated.  But it’s not always practical.

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.

success!

Maybe not success by very many people’s standards – but on a day like today, where I have been awake for far too long and dealt with far too many medical issues – success is measured by being safely home in our own beds.
We succesfully got kendall’s ivig infusion for this month. i’ll call the infusion a complete success if we stay out of the hospital the rest of this week (I don’t think we will have to go there, i’m just hedging my bets!)

It’s been a super long day, draining not only physically but emotionally too.

I’m about to crash but gosh darn it – i said i would blog every day so i’m going to do it if it durn near kills me. (For the record – ive also done the planking every day, even though that crap is getting HARD. And i most definitely did NOT want to do it tonight but i did it anyways.)

So here it is – in all it’s super short glory – today’s blog.

we surived. we made it home. we had success.

 

the end.

(i’ll write more tomorrow cause i really do have a lot more to say but i cannot possibly prop my eyelids open any longer.)

 

t

5 Things i’ve learned at the hospital

Goodness knows I could probably write about five HUNDRED things i’ve learned in the hospital over the past few years, but for brevity’s sake, I’ll keep it to just five that are most relevant to this most recent stay.

1.) Checking into the ER at midnight after a 3 hour drive is not a super spectacular choice. I recommend getting your act together MUCH earlier in the afternoon so that you have a remote chance of actually getting some sleep at some point that evening.

2.) Pack an extra pair of contacts, especially if you are nearly legally blind and your glasses prescription is three years old.

3.) CARRY CASH just in case the debit card system for the entire hospital is down for the duration of your stay.

4.) Keep a stash of moisturizer, lip gloss and mascara in every bag you might ever take to the hospital. Sometimes you will get sick of that “hospital/homeless chic” look you’ve been rocking and need a little perk-me-up.

5.) Learn that your momma bear intuition regarding your medically complex child IS usually right, and don’t let minor bumps in the road detour you from your belief in yourself.

 

what a week.

So as a quick catch up – Kendall got her blood transfusion about three weeks ago. It took about 4 days to really see a good improvement, but once we did, it was AWESOME! It had been wearing my spirit down for a while watching her struggle, knowing something was wrong, knowing even what the culprit was and the likely “fix” for it – but not being able to give her what she needed. Fighting through that with Ben, as a team, toe to toe with the docs, it was very tough. But we did it together. And in the end we got Kendall, the one with the spunk and energy and zest for life that we all know and love, back.

We went right from that hospital stay to a weekend trip for me and the big girls up to Madison for a dance competition (they did awesome). We had a great, fun, dare i say – “relaxing” – time, just me and the bigs.

We’ve been adjusting to life with another person in the house since Ben’s mom moved in with us (the week before Kendall’s transfusion). Logistics are challenging at times, but we’re learning to all work and live together! I am glad that we are in a situation where we are able to help her have a place to live, even if it is inconvenient and adds to the craziness of our lives. The girls are getting more used to the idea, but bless their hearts, their lives have never really been “normal”. We’ve always had therapists and nurses in and out of the house. our time is so rarely our own, just us, a family. The  basement was the one “escape” they had, but now that’s where Nana lives so they are learning to just escape to quiet corners of the house whenever the opportunity presents itself. Since she has lived in Texas for as long as they’ve known her, they don’t really know her. So to them she is somewhat a stranger, and they have to get to know her still. It’s an all around weird situation for all of us, and just requires a lot of patience, time, earning of trust, and prayer.

All of that to say that when Kendall started getting “weird” on Sunday afternoon, and I knew Ben was leaving for pittsburgh first thing monday morning, I knew this week was going to be a challenge.

We finally all made it to church Sunday morning for the first time in MANY months.  I was trying to think of the last time I sat through a Sunday morning service and I honestly couldn’t remember when it was. I think it was last October or possibly November. (we did GO to church on Easter Sunday, but it was not our home church. The girls were dancing with their dance team as part of the worship service at a church 45 minutes west of our home.) Kendall was running TPN and had her catheter drain bag on. We secured everything as best as we could and sent her in to play with her friends in her church class. She was so happy to be there! But on our way out of church, she tripped and took a hard spill. We get home to eat lunch and she started looking puny. She asked to go lay on the couch and as I helped her get settled I noticed her urine bag was full of bloody urine, with tons of blood in the line of the bag. It was enough to mildly panic me, but instead we just put her to bed with some fluids running and hoped that the bleeding would stop. She woke up feeling much better, played outside on a GORGEOUS spring day, and no more bleeding. She went to bed for the night seemingly ok, but within an hour as I was taking Kaylen up to bed, I heard kendall moaning, saw her HR on the monitors, and knew something was up. Went in to her room and she was having the rigors.

If you’ve never sat and held your child while they were having the rigors, I don’t think I can adequately describe the heartbreaking feeling that goes along with that. It’s one thing to sit and hold a feverish child, even one who gets shakey with their fevers. But the rigors that come with a body trying to fight off sepsis are horrid. They absolutely cannot get warm and their little bodies just shake and shake and shake. I had Kendall wrapped in three thick blankets, a sweat on over her pajamas, and just held her close to me and rocked with her. she kept asking me to warm her up, make her warm please, stop the cold. I thought her temp would be sky high within a few minutes so I went to start getting a bag packed. Turns out she was only a point or two above our “go to the ER” threshhold, so I rechecked her after a few minutes and it was below that threshhold, so I figured I would try to get a couple hours of sleep in, assuming I had a long night ahead of me.

Thanks to our monitor from our wonderful amazing friends, I was able to sleep in my own bed and watch her numbers from there. She managed to calm herself down within an hour or so, and by that point I was very tired, so I figured I might as well crash, wake up if her alarms went off again and make a plan from there. But i was stumped by her relatively low temperature.  Rigors typically equal a 105+ degree temp, which almost always equals a fungal infection/sepsis for kendall. Rigors plus a very low grade fever = confused mama. I was waiting for the other shoe to drop Monday morning, but her nurse was reporting low temps to me. I finally put together that her nurse was doing a temporal scan, and upon feeling Kendall, knew that wasn’t right. (to get a true and accurate temp for kendall we have to do rectal temps. I do not know why. It is just how she is.) Rectal temp showed her to be 102.7 (vs the 97.1 she was getting on the temporal one – the one that scans the forehead.) This is the craziness of Kendall’s body. So at that point, I started calling Milwaukee for help.

While waiting I figured I would drop off some urine at the local lab because I suspected it was another UTI that needed treating. By the time Kendall woke up from her nap, after a good hefty dose of ibuprofen, her temp was back down to normal range and she was laughing and playful again. I was super stumped, but happy to see her like that. Still waiting for the other shoe to drop. The big girls came home from school and while we were driving to the chiropractor, I told them that Kendall would likely need to go to the hospital. I could see their little spirits fall. They knew it meant staying with their Nana at our house, that it could be a while til we were home, all the usual suckiness of us having to be up at the hospital in Milwaukee. I briefly toyed with the idea of trying to take her to Edwards, but knew that if she did get VERY sick, it would be harder to get her out of there, and plus I would need Milwaukee to make any decisions about her line or such if it was that. (Plus the memory of having to spell out the correct antibiotic for the doctor last time since he had never prescribed that medication before….) As much as it sucked, I knew if Kendall got another fever, it was gonna be Milwaukee or bust.

I was exhausted from running around all day, came home to make dinner, get kids ready for bed, do homework with all three, and shlep them up to bed. Sure enough, as I was getting Kaylen tucked in, I heard Kendall’s moaning and monitor. I could tell the minute I opened her door that she was hot. I about fell over when I saw her at 104.7. That is typically BAD bad news. I paged Milwaukee, and went in to tell Kaylen I need to take sissy. Kaylen started SOBBING that she didn’t want me to go, she hated Kendall’s line, hated kendall getting sick, please take her with…So heartbreaking.  Milwaukee called back – it was our doctor who knows us, knows Kendall, and knows exactly how bad that high of a temp is for her. He asked me three times if i was sure I could get her there in our car by myself or should he send the ambulance. I told him that I didn’t know if it was the right call, but that I felt that I could get her there safely. Finished packing up the car and went to tell the big girls and got more of the same crying and pouting. I had nothing left to do but call my dad and see if he could come get the girls. It was the only option they were comfortable with at that point.

So off we went – my girls packed into my dad’s car and us packed into mine.

Longest drive I’ve ever made. Thankfully Kendall was conscious and talking to me every once in a while the whole trip. I was SO tired. We hit the Wisconsin line and I wanted to cry – we had another hour-ish to drive and then all the getting checked in, history, waiting, deciding…..i knew it was going to be a long night. My eye started feeling like it had been stabbed with a hot poker about 45 minutes into the drive, and it only got worse throughout that long night.

Of course we get to the ER and Kendall’s temp is back down to 97 rectally and she’s acting mostly ok. The attending ER doc who we never actually saw come into our room ordered a peripheral IV to be started with a slow drip of D5 fluids. The nurse came in to tell me that and I asked her if he was going to be the one coming in doing a dexy scan (blood sugar check) every ten minutes since he wanted to stop the TPN that was running into her perfectly functional broviac. I was getting slightly stabby by that point. It irks me when doctors make decisions based on their book knowledge and never even bother to lay eyes on a patient. Thankfully someone or something made a call to admit her and start antibiotics. So we pulled in to the ER parking lot at 12:05, got admitted and up to the floor at 4 am, and we did history, meds, and cares up until 6 am. And then Kendall got Red Man’s – a reaction to one of her antibiotics that causes intense, usually painful, itching and burning. It’s kind of like an allergy but not a full on allergy. It was just not what either of us needed to deal with after that long night!

Tuesday we slept. And slept. And then slept some more. All of the docs coming in and out of our room could all tell Kendall felt like poop, and she was starting to show some “soft” signs of possibly going septic. I felt so horrible myself that I wasn’t of much help, and there wasn’t much to be done anyways besides waiting for cultures to grow. We had a good talk with Special Needs (Kendall’s complex care management team) and Urology about the game plan, and went to have an X-ray and ultrasound of Kendall’s bladder and kidneys. Even though she is growing gram negative rods in her urine (meaning she does have a UTI), it is believed that this is just her colonization, a bug that is always going to be there because she always has plastic inside of her bladder. But to be on the safe side, they wanted to take a look and make sure they didn’t look crazy inflamed or anything.

we found out this morning that her kidneys actually look wonderful, and that is due to the vesicostomy being placed. It is doing it’s job of releasing all the pressure she had been having previously that was putting pressure on her ureters/backing up to her kidneys. So that is spectacular news. However, they see some “areas of concern” on her bladder and we are waiting for urology to weigh back in on what that could mean for this acute situation, and longer term. Whatever they are, they are likely to have been there for a while, so the significance of them could be something, could be nothing. Overall, things are headed in a good direction though.

We are hopefully going to get an “all clear” tonight from her cultures – meaning there was no growth on the blood cultures at 48 hours. Once we hear from uro about the plan for the bladder issue, the team will come up with a plan for antibiotic coverage at home, and discharge papers will be written! We should be back in our own beds by tomorrow night!

Thank you so much for all of your prayers and support as always. Sorry this turned into a novel and I am trying to wrap it up now between 389 distractions and interruptions.

I hope you are having  a blessed evening with your family and friends, wherever you are! I’ll hopefully update again from HOME tomorrow night! Fingers crossed for no Kendallisms tonight!

 

terra

The woods.

We find ourselves firmly ensconced in “the woods” of some kind. Kendall cannot seem to find her way out of the woods, and where she goes, i go. So we are wandering in the woods of septic shock, with DIC rivers, presser thorn bushes, access clearings, and gram negative bears.

My mind is still spinning from the absolute downward spiral kendall quinn has taken in the past 24 hours. i know there will be holes in this, forgive me. i’m trying to still piece it together into something that makes sense for myself.

Ok nevermind – it’s taking all day and I just need to get some of the more important details out –

Kendall was admitted to the PICU from the ER because she was tachycardic (HR in the 170-180s with very little activity), and because her blood pressures were starting to fall. This is a typical response to bacteremia (a blood infection), so the wiggle-on from the ER staff was definitely missing. I could not quiet this feeling, however, that this was more than just an average sepsis for Kendall. Something seemed very off. Luckily when her BPs started taking major nosedives, the ER docs caught on to that same feeling and Kendall was sent pretty expediently to the PICU (Peds ICU). In the elevator on our way up her BP’s continued to crash, and by the time we got to our room, the rapid response team was very quick to slide her onto their bed and get right to work.

For three straight hours we had 7 or 8 people in the room all working to get Kendall’s blood pressures to stabilize. We had one reading so low that there was no diastolic (bottom number) pressure. Medicines called “pressers” were started to attempt to force her heart to pump harder and get the blood pressure back up. Mind you I really didn’t have a total clue what was going on – Kendall’s never needed pressers before. But the head doc for our team last nite would calmly call out the orders to the others working, and then explain to me what she was doing, and why she was doing it, and what result we were looking to see on the monitors. I stood near the back of the room, in kendall’s eyesight but not in the way, until they seemed to have a bit of a grasp on getting her BPs to at least register. Then I went and stood and leaned over her bedside and just talked to her – about meeting Cinderella, and about her sparkly Cinderella shoes, and something funny Kaylen had said that day.

They started two peripheral IV’s on my baby via guided ultrasound – in her shins. Her blood was so thinned out at that point that they would just ooze. Her face started breaking out in petechiae – little broken blood vessels. Then her arms did. Then her chest did. Her legs just started turning purple from the toes up. Unfortunately at that point we were still very worried with the blood pressures that weren’t coming up. Every time the blood pressure cuff would squeeze, it would burst more blood vessels in her arm. They had to start an “art line” – an IV that goes into an artery. The doctor who was doing the procedure told me it was supremely painful, and that she couldn’t give kendall anything to sedate her because she was too precarious and they needed the art line NOW. I held my baby down while a large needle was stuck deep into the underside of her wrist, and the doctor dug and dug and dug that needle around, 5, 6, 7 times. No go. Got the big ultrasound machine, stuck 2, 3, and the 4th time more, in it went. And watery thin blood was everywhere. A wire then was guided in through the needle, and then a plastic catheter was guided over that. Through a hole in her wrist. AND THEN – they sutured it in. No numbing meds, no sedation, no pain meds.

someday – my tougher than nails kid is going to walk into a tattoo shop and ask for the most painful tattoo/piercing they have and get it without even flinching because she is hard core. I sat there cringing in pain for her. Wishing I could take it away, even half of that pain – anything but looking into her red, burst blood vessel, pain filled eyes and telling her it would be ok. For almost two hours I hunched over that bed, whispering in her ears about anything and everything that came to mind. I’m pretty sure I promised her the playdoh ice cream fun factory for being such a brave little girl for that art line. (Have i mentioned how much I hate playdoh? but right then and there, I would have given her all the playdoh in the world just to have her be ok.)

anyways – we got a call from the lab that her blood cultures grew gram negative bacilli in 6 hours. Even the PICU doc was shocked. It makes sense – gram neg bugs are notoriously brutal, and with how very sick she got so very fast, it’s not surprising that it grew out so quickly. We have gotten no further information on it as of yet, but I believe that the same bug is also growing out in her urine.

So she is sick. Very sick actually. I don’t like to admit this but she did have me scared last night. I have not seen her that sick since she was a baby. And even then , I didn’t know any better about how very sick she was. To use the past tense does not mean she is “better” now. The doctor was very cautious to choose his words on rounds this morning. She is showing some improvement, but is still nowhere near out of the woods from the “scary part” of this infection.  Well, at least, according to them she’s not. I know Kendall though. I see my baby girl in there, fighting with all she’s got. I think we are definitely approaching the edge of the woods at least.

She is coagulopathic – her clotting factor labs were horridly out of whack. This is part and parcel of ‘DIC”. Don’t google it. It basically just means increased risk for bleeding. She is still severely acidotic and her body is not doing a good job at all trying to correct it’s acid imbalance. She’s too tired. She was in gram negative warm shock last night, and throughout the day has made very very slight improvements to get out of that. she is not actively required fluid resuscitation (large amounts of IV fluids being pushed in very very fast in an effort to fill her body up with enough volume to stabilize blood pressure.

I’m exhausted – i’m not even sure if this blog post makes sense because I am falling asleep trying to type it.

We are so grateful for the family and friends who have made the trek up to see us today. And for those of you who support us from afar, we thank you. I’m not sure what else to say about kendall at this point because I don’t honestly know where or when or how to wrap it up. She is sick, very sick. She has made some slight improvements with a ton of supports in place. she will likely need those improvements to go with the TV show Kelly ripa owned.

^^^ I’m leaving that last sentence in there because I typed it as i was falling asleep – this is the kind of exhaustion i am dealing with people! Our doctor keeps telling me to go take a nap, lay down, get rest. But I cannot rest right now. I am WILLING Kendall to get better by my own sheer determination. And all of your prayers. If I go to sleep she might think it’s ok to not keep pushing forward. and that is not acceptable. She is going to get better from this. She has no choice BUT to get better.

What we need to do now is get her off of presser drips. We are in the slow precarious process of slowly weaning her down off of those. That process SHOULD be complete by the morning. Once we get her off of those, and her BP stays stable, we can start dumping her full of lasix to draw some of the four pounds of water weight she has gained out of her tissues. Her kidneys are still not super excited with life and are putting out this sludgey brownish orange drainage (I wouldn’t even really call it urine cause there is so little of it). It likely has old blood in it from the DIC yesterday. As one of her doctors told me – if you can see this bad of purpura and petechiae on the outside, imagine how bad it looks on the inside. We are also working to correct the massive lactic acidosis she is in, which will require us getting on top of her o2 saturations, blood gases, and sugars. Once those things are under control, we can switch around all of her med lines again and then start running antibiotics through her broviac and see if we can clear any bugs hanging out in or near that line. And THEN – once we have a better handle on the infection – we can go home!!! 😉 yayyyy!!!!!

so i may be a little ahead of myself with the home thing. But you really never know. She’s just as capable of rebounding quickly as she was of dropping so quickly.

I’m going to go try to take a quick little catnap. I am not even sure what all this says but i’m going to hit publish anyways. Hope it has helped out a few of you with your questions – if it didn’t, let me know how I can!

Your prayers are still so desperately needed, welcomed and appreciated.

 

Thank you –

 

the atkinsons

Logistics.

The moving around of items from point A to point B in a semi-organized manner.

My brain is consumed with logistics right now.

Kendall is in the hospital in Naperville. My kids are at a friends house in Plainfield, until they go to school, at which time Kaylen should be deposited back to a friends house in Bolingbrook so they can go run errands up in Hinsdale, before coming home to get Kaylen on the bus to go to school also.

I am also at the hospital in Naperville, which is where I need to be, but I also need to be at the grocery store, the party supply store, my own house.

I can only say thank you Jesus for unlimited texting and non-arthritic thumbs because my phone has been “logistics scheduling central” all morning. Also for amazing friends who are willing to re-arrange their own schedules to fit my kids and their various needs in!

Kendall stuff: She is acting much better after some good IV antibiotics, but is still not making very much urine. She doesn’t want to eat or drink very much, and there is currently a river of nastiness pouring out of her G and J tubes so we can’t get much in via those routes. She is on her TPN which has more than enough fluids in it for her. We changed her foley tube (that drains urine out of her bladder) in the hopes that maybe the one she had in was just clogged – but still no go. She’s not third spacing it (putting it in her tissues instead of her blood stream) – well, at least she doesn’t look very visibly puffy anywhere – so we have no idea where her fluids are going to right now. I haven’t talked to a doctor yet this morning so I haven’t heard if there was any growth yet on any of her cultures or really much of a plan at all.  She isn’t vomiting anymore and her HR/oxygen sats are within the range of what I would consider “stable enough for home”. We basically got sent here because the ER doc we saw at the ER down the street from our house was scared she was going to crash on us based on her less then stellar labwork and her history of doing such a thing, so he needed to cover his own (rawhide) and send us here to be observed for the night/get antibiotics/etc. Supremely frustrating.

IMG_5438 (this is a picture from a few days ago. her hair is never like this! she looked so grown up like this!)

I’m hoping I can talk whatever doc comes on service this morning into letting us get out of here in the next couple of hours because I have too much crap to do to be sitting around here with a mostly stable kid.

I know so many of you have volunteered to help out with anything you could, you are all amazing. Not knowing where I am going to be tonight makes it really difficult. I don’t know if you all know this – but tonight was going to be Kealey’s birthday party for a few of her friends from school. Just a little sleepover, but Kealey has had the best time looking for party stuff, talking about games and things they were going to do today, and in general just looking forward to the fun of hanging out with some of her friends. Kendall is almost always in the hospital around her birthday, and has ruined Kealey’s day/chance at a celebration pretty much every year that she’s been around! Kealey takes this in stride, as she does with so many other things, and this year I really wanted to do it up for her. She had a small party last week with her dance friends, we did a modified celebration lunch on her actual birthday, but tonights party was going to be all about Kealey. We had picked out decorations at Hobby Lobby (all zebra themed!), and I was supposed to go yesterday to get everything. I was supposed to be cleaning the house and moving the Wii downstairs to the basement today, getting snacks, ordering pizzas, having everything ready for the Pitch Perfect Perfect Party tonight.

But instead i am watching numbers on a monitor, willing a flood of urine to hit the bag hanging off the side of her bed, sending telepathic messages to the nurse station right ouside our room to have the doctor come in here already and discharge us. Trying to plan out how many hours I will have to get everything done if we get discharged by 10. Or 11. or 3. I mean, really, let’s face it. I’m no Martha Stewart of party planning. This party wasn’t going to be anything magazine worthy to begin with, even on a good week where my eye wasn’t trying to pop out of the socket and I didn’t feel like the walking dead from a bad head/chest cold. Add in my own current health status, and it may or may not have hoped to resemble something remotely cute. But I at least wanted to TRY. For Kealey. For my beautiful, strong-willed, knows-too-much-for-her-age 11 year old, who spends her life doing stuff for others. To be able to give her back something just for HER.

I promised I would try to come up with a list of things that would help me out for those of you who have volunteered to help and want to help! I am just writing this all down as I would plan it out if life were perfect and I had a personal assistant to help me get this all done. And possibly if I grew two extra sets of arms. I do not expect that anyone will do all or really any of this. This is simply for those of you who have been patiently waiting for the list of how you can help! if that isn’t you – then please feel free to skip right over this! (if you know me at all, you know how hard this is for me, to even ask for help let alone direct people on how to help!)

My House

I am pretty sure it’s not quite at “hoarders:buried alive” level yet, but it’s needing some help! If we get out of here this afternoon, I will be cleaning like a madwoman. If you live close by and are handy with a vacuum, stop on by! I can put you to work for an hour or so!

I will be hopefully transforming our basement (which luckily Ben went kind of ham on and literally shoveled up 16 grocery bags worth of old toys/dressup clothes to clean out an area for the girls to spread out in a couple weeks ago) into Party Central. I need help setting up the Wii in the basement (connecting it to the TV down there and such).

Speaking of the Wii – I need the game Just Dance 4!!! does anyone have it that we can borrow? I need to find a place to rent it at (redbox) if not!

Party Stuff

I have a beautiful wonderful friend going to get some of the party decorations. It is zebra themed with hot pink accents. If you happen to be at or near Hobby Lobby this morning and want to browse the party aisle and pick up a decoration or two, that would be spectacular. i obviously won’t have time to get much of anything on my own, and I was just really wanting to make it look awesome for Kealey. Clearly, not a huge priority at this point, but I know some of you like to do stuff like that so there you go!

Balloons – same as above!

Snack foods/2Liters of sprite/lemonade/whatever

 

So that’s what i would be doing if I wasn’t here.

I cannot say thank you enough to the people who have been instrumental in helping me maintain some semblance of normalcy thus far: Sharla who has had my kids since yesterday evening, Anne who picked my kids up from my house where they were sitting all alone and brought them to the ER so  I could see them for a little bit, and then took Kaylen again this morning, Molly who will be running around like a madwoman all day trying to help me with the party stuff for tonight, Nancy who keeps me supplied with coffee and sugary snacks and cold medicine so I can function in the hospital. My good friends who text me the most random stuff in the middle of the night just to make me laugh. All of you who send me messages on facebook volunteering your help/prayers/anything I need. my wonderful in-laws who are willing to drop everything and fly to the frozen tundra of chicago to help us out if so needed!

i have realized more so this stay than really any other how much of a village it really does take to live this life. We are so very blessed and i hope you know how very very appreciative I am of it all. The prayers, the offers of help, the actual help… I am overwhelmed by you all right now. Plain and simple – I could not do what I do if it weren’t for all of you. For my amazing family who normally pick up all this slack – thank you. i hope you are all enjoying your vacations!!

Hopefully we are packing it up to get out of here within the next couple of hours so I can get to all of the above on my own. Hopefully Kendall continues to respond well to the antibiotics and i can run some extra fluids at home and kickstart her kidneys into putting out some good urine again. Hopefully we get home for the party and we don’t end up scarring all those kids with all the medical crap Kendall will still be dealing with tonight!

Keep on hoping!

I’ll update Kendall’s facebook page as I hear or learn more about what’s going on!

Thank you to all of you for everything you do for us – praying, physically helping, sending gifts – I cannot thank you enough.

Have a beautiful Friday folks!

Terra.

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