#Nablopomo2014

So here I am again….staring down the face of 30 straight blog posts over the next 30 days.

Remember when I did it last year? And how i ended up having to cram in and backdate three posts in the last 45 minutes of November 30 to make it?
Yeah – I’m pretty sure it’s gonna be like that again.

As I look back on some of those posts – I see how we were in a somewhat similar position. Having recently brought a very sick Kendall home from a long harrowing stay in the PICU. Feeling like there was no rhyme or reason or schedule to our days, having so much of our lives in upheaval. Wanting to find a sense of order and continuity and clean up my desk….Wow. It’s like Groundhog Day here….

And yet time keeps marching on. Sure there are many things that are different – even different and improved from what seems at first glance to be so much similarity. But the things that aren’t different, the fact that I still keep dealing with the same issues over and over again….what is that? Is that me being stagnant? I hope not. But then why can’t i just get out of this rut of sameness? But in the next breath – I look at what our family has held up under and endured the past year, and I am proud of us. Sure my desk is still a hot mess of papers and various half-started craft projects, and my closet STILL hasn’t been cleaned out like I had planned to last November, and I continue to struggle with making bad eating choices and wanting to work out more….but we are all still here. We are all still keepin on, somehow. And really – we’ve done it pretty well in SPITE of my messy desk and closet. So who’s the real winner here???

Every new day is a chance to make it better. Every day we get life, it’s a chance to live it however we want to. So these are more the kind of things I want to focus on. The desk and the papers and the clothes – they will all eventually be taken care of. But the real stuff of living is in enjoying the time I have with my babies, my family. Time spent laughing together, making memories together, working together to make life awesome. Being real, and learning who we are. Who I am. Authenticity and Inspiration. This is what I would rather focus on this month.
That’s not to say that it’s all going to be the deep stuff, soul searching, gut-wrenching emotional stuff. But it is all going to be real. Authentic. Maybe even funny sometimes. Some of you have come up with some really awesome ideas to help get my creative juices flowing – you want my mascara video, more of my super awesome illustrations, you want to finally hear about the Make A Wish trip, my recipe for Hippie Juice…I can’t remember them all off the top of my head but I know there are some good ones!

Annnndddd here i am already five days behind so i’m going to go crank out some posts real quick!!!

Ready set go.

T

Breathing.

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

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

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

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

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

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

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

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

Peace out party people.

T-crest.

unexpected.

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

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

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

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

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

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

This is unexpected.

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

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

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

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

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

And then time just flies.

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

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

 

peace out party people.

~terra.

Even Diana Prince Can’t do it all.

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

*Insert loud dramatic sigh here*

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

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

Because I’m not.

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

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

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

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

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

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

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

And we will get through.

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

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

See you on the flip side.

T-crest out.

turning the page.

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

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

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

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

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

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

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

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

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

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

 

t.

Soon…But not yet.

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

But not yet.

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

But not yet.

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

But not yet.

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

but not yet.

 

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

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

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

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

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

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

i will update as soon as i know more.

which will hopefully be soon…

but not yet.

 

t

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.

But the fighter still remains.

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

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

“I am leaving, I am leaving….”

But the fighter still remains.

 

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

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

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

It has been a long couple of weeks.IMG_7108

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

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

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

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

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

I love you.

 

~mommy.

 

 

[Read more…]

Trust your Intuition.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love~

me.

How i am.

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

Actually i’m horrible.

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

I need a hug. Just a really good hug.

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

I need a job.

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

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

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

I need a break. I just want a break.

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

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

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

Thanks for listening to my whiney rant.

and thanks for loving me in spite of it.

keep on keepin on.

<3,

me.

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