jockamo Fee Nanay.

I promise that’s not gibberish. Well, ok it kind of is, but it actually means something.

You’ve probably heard at least one rendition of the “Iko Iko” song. This is a line from that song, which was traditionally a battle cry between Indian warriors in the Southeast part of the United States a million years ago. Or somewhere in that time frame. Anyways – jockamo fee nanay means “We Have Come to Do Battle”.

Tonite more so than it has been in the past – this is my resolution.

We have come to do battle. We have come to win. You better run, nasty little klebsiella bugs in my baby’s body – we comin’ fo ya!!!

Tonite my baby is laying calmly in her bed, her position determined for her by special pillows and props placed strategically by the nurses to ensure the best circulation. There is the constant beep of her heartrate, the constant “chug-chug-chug-chuggggg” of the 9 pumps running meds and fluids into her, the “puf-pufff…puf-puffff” of the ventilator machine taking breaths for Kendall. The room is dark except for the eerie green glow from all the pumps and monitors. Tonight there is no “Little Mermaid” movie on an endless loop. Tonight I am not frantically searching for the dropped nee-nee (binkie) for the 83rd time – because there is no room in her mouth for the nee-nee.It is just Kendall and her machines vs the bugs invading her body tonite.

Her doctors tell me that she won’t have much of a memory of this time – no PTSD regarding all the interventions she has endured the past couple days. I think that is a good thing, and while i’m not entirely sure I buy it, i’ll hold on to it for tonight at least.

In the morning we will see how her lungs are looking. She is intubated tonight mostly because she developed ARDS – a sucky but not entirely unexpected response to the sepsis and fluid resuscitation she needed because of that. Her lungs are almost entirely filled with white cloudy-looking fluid. Also concerning is that she appears to have a pocket of fluid trapped in her pleural space which may require a chest tube to drain. I have not personally experienced a chest tube, but I hear they are among the most unpleasant experiences ever. She is still extremely fluid overloaded – her abdomen being the worst (to me at least). She is not draining  this fluid out of her tubes, nor is it being absorbed into her bloodstream where it can be peed off easily (or at least, more easier).
There’s a lot that has gone “wrong” with Kendall to make her this sick – but the bottom line is that it is not all entirely unexpected. I cannot express to you enough how amazing the team we have here in PICU has been. I know some of you think I should have my honorary nursing degree – but this stuff – all SERIOUSLY above my head. Imagine trying to make dinner by using two tiny sewing needles as your hands. That is about what this team is doing – trying to fix some very big problems by finely tuning to the “n-th degree” things that are so miniscule that most docs in a non PICU situation would probably never bat an eye at. I am sure I’m leaving out so much info that so many of you are wanting – sorry. I’m exhausted. I added it up this morning and I’ve gotten almost 8 total hours of sleep since Saturday night. I don’t want to start going off about Kelly Ripa or Katy Perry or any celebs right now!

Tonight I am watching three numbers on the monitors that I would covet your prayers for:

1. Her temperature. She has had high fevers (103 range) all day. On the one hand, this indicates that her body is doing a bang-up job actually mounting an immune response and then trying to FIGHT this infection. On the other hand – fevers this high are uncomfortable. We want her to have relief, and I’d like to see her body start winning a few battles here – by lowering that fever a little bit.

Her CVP – central venous pressures. They have come down from the 30’s to the 20s and now to the 15 range. Ideally we’d like them to be around 7. I’m not sure i fully understand the thought process behind that being an issue, but I guess it can’t hurt to try.

And lastly her blood pressure. She’s still on the pressers so it’s going to be a little on the high side. But I’d love to see any or all of these numbers trending in the right direction when I wake up.

Please also pray that she stays sedated. She’s a kiddo whose body likes to chew through sedation meds like they are candy – so we cannot keep her on a sedation drop of versed like would normally happen. We have her on one continuous med to control her sedation needs, and two others that are dosed every three hours. In between those doses she can get PRN doses for breakthrough “wakeups”. I will say this – our first “wakeup” today was a sight I would like to never ever ever witness again. Kendall was trying to choke/gag/cough up the tube – but because it is anchored below her vocal chords, it is not able to come out that easily – so she was choking harder, face turning beet red – trying to scream but no sound coming out – it was horrifying. I’m sure it was “normal” but not for this momma. Thankfully there were three nurses in here within a few seconds of this happening and they were able to re-sedate her and calm her down. She has woken up a few times since then also, but nothing as horrid as that first one.
Anyways – I know this is scattered. sorry. Hopefully I at least can get this one to publish in the right month!!
a huge-normous thank you to everyone who donated to Kendall’s paypal. I definitely have enough to get to the competition and back this weekend, and get food for another week or so here (hoping we don’t need THAT long though!) You all are such an amazing blessing to me and my family~

Thank you for the prayers, for the texts, messages, emails. Thank you for everything.

Hopefully I will update more in the morning.

Have a great night friends – hug your babies tonight.

 

love,

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

No-stay November.

Did you notice that? For the first time since June, Kendall made it an ENTIRE month without a single inpatient stay! HOOOORRRRAAAYYYYY!!!!

IMG_4911 So…yeah. If I had blogged I would have maybe jinxed that! That’s why I haven’t blogged in forever. (just run with it….Even though it’s kind of a stretch!)

Seriously though – it’s just been a tough couple weeks! Kendall’s med schedule would be dizzying for an inpatient stay. At home, it’s nearly enough to shut down our carefully constructed house of cards that keep us all fed and clothed in clean clothes! I could go on and whine about how tough the last few weeks/months have been trying to be both full time nurse and full time mom, but i’ll spare you. Because even if i wanted to describe it to you, I don’t think I could. And at the end of the day, we’ve survived. I realize how lucky we are to be in the situation we are in, and that kind of gratitude is invaluable. It doesn’t make it easier on a day to day basis – I still whine/yell/get overwhelmed/snap at my kids/snap at strangers due the exhaustion and stress – but when i am able to stop at the end of the day, and take a few breaths, and reflect on the day and all that it has held…I am grateful.

Grateful for how blessed we are to have our house, with heat that works. Grateful for insurance. Grateful for the medications that are keeping her healthy and alive and home with us. Grateful for the craziness because it is our choice to be crazy at home instead of bored at the hospital. Just so grateful, for so much. It is hard to put into words. But i do know how blessed we are. I only hope that I am able to pay those blessings forward somehow.

Tonight as I sit here trying to sum up my feelings on all that November is and was and represents – and prepare for all that December holds – that is about the only thing that is playing through my mind. How very much we have to be thankful for – and how very much we have to celebrate over the upcoming season! I am tired, but excited. December holds so much to be thankful for and excited over – starting with tomorrow! I will be flying with my mom and my sister from Chicago to Boston to visit my baby brother, his wife, and their brand new baby boy! I am so looking forward to this teeny little break – and cannot thank my dad and husband enough for their help in coordinating this fun trip! It is short but I am hopeful that it will be just the mental break I need to be in the holiday spirit for the rest of this month! But beyond that – I am just looking forward to spreading Christmas joy and spirit in the hearts of my beautiful baby girls.

Ok full disclosure – I had a headache from somewhere in the 2nd layer of hell so I took some meds forIMG_4928 it which are making it hard to form coherent thoughts. I also have to be up to leave for the airport in about 7 hours and still need to do some last minute packing. So I should wrap this up. But for everyone who did NOT see the update yesterday on facebook – we got outstanding news about Kendall’s DVT (blood clot). There was no evidence of the clot in the vessels near her heart (where we did the ultrasound based on where the clot was found last time)!!! It would appear that I either did pull it out chunk by gross chunk (I have a whole folder of “blood clot pics” on my phone!), Or the medications did their job and blasted it to oblivion. Either way – I’ll take it! She will remain on the Lovenox (shots into her legs) for the next two months at least – and at that time we will be looking at either continuing that med, or finding a way to get the medications directly into her veins (where we are trying to stop the clots from forming!) So the medications are working – almost too good! The thinning of her blood means that she is at greatly increased risk of bleeding. Bruising. Starting to bleed and then not stopping. For a kid who a.)falls a lot and b.) bleeds a lot from sources both internal and external – it’s challenging to say the least. In the hematology office yesterday she was putting on a spectacular show of just how challenging she is – trying to do somersaults on the floor, sliding off the exam table multiple times, running into sinks and doors and low-hanging counters. Thinking the Cinderella glass slippers might need to be retired for a few months…. I just rolled my eyes at all her antics – her nurse case manager actually let out a small scream of fear at one of the incidents. It was quite comical – but at least they all know – welcome to kendall’s world!  She is having some blood loss from somewhere internal (be it the extra labs she needs run, the blood in her urine that we know about, small GI bleeds that we have some evidence of, other randomness) – but her bone marrow is doing a good job compensating right now, so it is just something we are keeping our eye on.

All in all – we have a lot to be thankful for, grateful for, lots and lots of GOOD to be focused on. We are so thankful for all of you – dear family and friends – for everything you do to help us survive these crazy times. For the cards you send, the encouragement you bring, the hugs, the everything. ok i’m losing words again quickly…I will try to be better in December about blogging more.

Keep on keepin on my friends. May your Decembers start out in the loveliest of ways!

 

Love and hugs~

Terra.

Random Thoughts from W1105.

Special treat time! i’m bored and the internet is wonky and i need something to keep my mind occupied.

So here you go – an extra middle of the day blog post from me. Full of the randomness spilling out of the top of my head at this very moment. If you get offended by possible swearing, talk of bra’s, or in general think this will be more mind-numbingly stupid than a Honey Boo Boo marathon – you’re probably right. Exit’s to the left. i won’t have hurt feelings.

I’m tired. I know you’re all probably going “duh”, or “join the club”. But I needed to say it. I’m really tired.

My bra is poking my chesticles. It hurts. I just called Ben to tell him I put on facebook that I needed him to fedex me a new bra. He was not amused. But is fedexing it.

We have awesome friends and family – and we are blessed to have this happen in two different cities in two different states while we try to live as a family separated. This is a huge thing. i seriously cannot thank enough the people who continue to ask me what we need – at home, at the hospital…you’re all amazing. My aunt came to the hospital today to sit with Kendall while I went out to lunch with my grandma. That was amazing.

I sat and talked and laughed with my grandma and she is the only one who can make me cry when i’m doing my best to not cry. And she did it again today. So then we both sat there laughing and crying at the same time like so many of my awesome memories are made of – my grandma, my aunt, my mom, and us girl cousins laughing and crying at some crazy story someone told…Anyways – it was so good to sit and talk with her. She’s full of wisdom, that one. I feel very blessed to be able to spend time with her while we are up here. Thank you aunt margie for coming and for writing down kendall’s every random request on stickers so i don’t forget that she wants green root beer and soup and a minnie balloon!

Someone took one of my cokes i had chillin in the parent fridge. This kind of pisses me off because hello – IT WAS ONE OF MY COKES!!! But i’m trying to think that whomever stole it (and yes it was plastered with kendall stickers, so someone had to know they were taking someone elses coke) really needed it. And I hope it was a blessing to them. I’m so magnanimous I know.

The transport nurse who worked on Kendall the whole trip up here just stopped in to say to her. That made me smile. Our resident on the floor said “every department i call for records or to set things up for kendall knows who she is! and everyone loves her!” That really made me smile. We are very loved here at the CHW. Having OUR GI and OUR complex care doc be on service – it’s a relief like I can’t even describe. It confirms that we made the right call to come up here when we did. It means that when i have to pull crazy momma bear, i have two big guns backing me up going – “do what she says and no one will be hurt”. Vs. having to claw and fight for everything she needs.

I didn’t cry yesterday. I haven’t cried at all during this crazy aced week. I did not cry when Kealey cried into my chest that she didn’t want us to leave. I didn’t cry when they were wheeling my baby down a hallway on a stretcher with life support equipment in their backpacks, and my other little ducklings were following along behind daddy, down the hallway, out the doors, into the big ambulance bay. I didn’t cry when i watched them crack the gurney into the back of the ambulance and escort me to the front seat. I did not cry when we pulled out of the bay and i waved to my other babies and my husband standing there, knowing that we would not see each other for almost a week. I did not cry as we flew through traffic on a busy Chicago freeway, racing towards a hospital that could better care for my very sick child. I don’t know why i have not cried yet. It is all very emotional. It is actually, i would dare say, scary this time. She is sick in a way that I have not seen her be sick before, in spite of the moments of silliness and wanting to play – her downtimes are very down. On paper, she is a train on fire headed towards a gasoline factory. Her labs are crap, crappy, and crappier. This infection is beating down her body. But she is still the same fighter. And I still believe in our Big God. Maybe i’m just coping well. Or maybe i need to be psycho-analyzed for my ability to sail calmly through a scary, crappy, effed up situation.

My friends –and auntie – you know how to pack awesome snacks. You are saving my booty – literally. i have no desire to go raid the vending machines on the surgical floor. Thank you. The ones who continue sending me crazy honey boo-boo related texts and messages – i love you.

I feel like I had tons more randomness to share when i started this post. But now its turning into a medical update post I need to make as so much has gone on in the time its taken me to piece this together. So here you go – enjoy the randomnicity.

 

terra.

{Be} Affirmed.

Today’s appointments were MUCH quieter (because my awesome mom kept the other 3 banshees) than yesterdays, but went equally as “well” as one could expect given our subject matter. Kendall spent the entire hour in the GI office playing with the cups and water in the sink, so managed to absolutely soak her outfit and had a nice puddle about 2 inches deep on the floor by the time we were done talking – i cannot even imagine how much worse that would have been with her partner in crime K3 in attendance. Oy. Pass the xanax bottle back over here just thinking about it!

It wasn’t so much that any spectacular new information came out of this appointment – but I think what made it so “good” in my mind was that our wonderful GI spent a lot of time “affirming” his support of what we do for Kendall, how we manage her care, how far we have brought her in 2 years, and all the other million and one things I question and juggle in any given week with regard to “Kendallisms”. We discussed her recent inability to tolerate feeds beyond a day or two in a row, the increased pain episodes with them, the constant fluid battle, and the autonomic “horse and cart” situation (is the dysautonomia causing the GI dysfunction or is it the other way around?) – and in essence, “if it ain’t broke, don’t fix it”.

Kendall is growing and thriving and having great days and a reduced infection rate – doing SPECTACULAR. Beyond needing better pain control and an overall Plan A in place for how many days without feeds can we get away with before we run into trouble, things are working pretty well. Her body has finally found some kind of a happy medium with operating between the TPN, extra IV fluids, lowered J-feed rate and prophylactic antibiotic coverage – so here we will stay. While I hope we do still make GREAT progress towards weaning her off of TPN in the near future, we have a few options. One of which is switching her to a formula that has a different metabolic makeup than what she is currently on. Previously we couldn’t get her to tolerate the calorie load of a toddler formula (she is still on an infant formula) without causing some pretty bad GI bleeds – but we have seen signs that she may be getting less sensitive to the richness of the formula, so we are going to slowly start weaning her over with a diluted version of the new stuff. I am glad that we are finally doing SOMETHING different to try to help her gut get over this hump – but also trying to not get overly excited that the new formula is the be all/end all of fixing a broken GI tract. We are going to trial a medication on a “PRN” basis (i think the letters stand for Per Requested Need, but basically it just means its not a scheduled dose of medication, but something you take when you need it. Like me and Xanax – it’s just PRN. which ends up being every three hours some days but who’s counting, really?!?!?!) The problem with this medication is that it only works on about half of Kendall’s bad day symptoms, and has a slight risk of making some other problems worse – but it’s definitely worth a shot from where we are sitting now, and should tide us over till the appointment with the autonomic GI. (and for my own memory purposes – the tube change portion of our appt day was equally as interesting, as when they went to pull the old tube out, they couldn’t figure out where it even ended because her intestines were so full of air it was distending everything and squishing it all together. The tube was once again encrusted with yeast spores making it all the more important that we strictly adhere to the 12 week or less change protocol. We are feeding WELL down into her jejunem so any days of reversed motility definitely indicate a CIPO like episode, and we should be in better contact with Dr N when these occur so he can adjust her TPN those weeks instead of us trying to play Jekyll and Hyde with her fluids/feeds like we have to now. And I made the room laugh when i said that tubes should not smell like county stadium on a hot summer day. I think that is all from the IR suite!)

Overall – it was just a great GI appointment. I was looking back through where we were at last year at this time on an app I have on my phone – and the irony was not lost on me that my entry for January 5th 2011 on Facebook was “WORST. GI. APPT. EVER.” – the difference a year (and a heck of a lot of medical interventions and TONS of prayer) can make, hey? We were faced with some very tough decisions at our appointment last year – definitely a rock and a hard place. And while I would stay we still live between that rock and that hard place, we’ve managed to find a way to make it a little comfier. Redefine “hard”. Cozy it up with some pretty blankets and glittery wall art.

We feel so very blessed for the absolutely great run Kendall has been having health wise. i do not know exactly what has made the biggest difference, but I have a feeling its a hundred little things all adding up. Dr. N today even told me that his “doctor brain” was very impressed with how I have come up with a fluid plan that works for Kendall, in spite of the very subjective nature of it – that I can keep an eye on her electrolytes, fluids, I’s and O’s, and third spacing penchant, and yet keep most things relatively in kilter. This is why we drive three hours to see him. Instead of pulling some idiot ego out of the closet and telling me i was doing it wrong, he analyzed it like a doctor and actually complimented me on it.

So our choices, while tough and not always “the right ones”, were Affirmed today. They are affirmed every day by the smiles on KQ’s face, the squeals of laughter/frustration/mischief while playing/destroying the house with her sister, by the fact that every day we are home is one less day we spend in the Big House.

I hope to spend many more days in 2012 being Affirmed in the choices we make.

 

terra

For Fun Trivia – if you look at the picture of the hospital, on the far right you will see how it curves, and on the very top there is a blue round “atrium” like feature – directly below that, on the 11th floor, the larger floor to ceiling window is where Kendall spends a lot of time hanging out when she’s in and feeling good enough to be up and about. It’s just a lounge type area but she loves to sit there in her little red push car and watch the cars driving by. I also take a ton of our pics in that space cause it has such gorgeous light! All the way down at the left side of that same floor is where the ginormous room with the double couch bed was! So there you go – that’s where we hang out when we are in our home away from home. Hoping we can stay away from it for a LONNNGGG time!

{Be} Calm.

I’m trying to remain calm on this second day of 2012.  I’m not really THAT stressed (or whatever the opposite of calm is) – but we have a lot going on in the next couple of days.

For starters my heart crap is kicking back into gear again. I had a reprieve of almost 4 straight days with Be2blog very few “kicked in the sternum” episodes. Then they started back up this morning with a vengeance. Hoping that some good information comes out of this monitor wearing and that the doctor can at least help me learn to recover from the episodes a little quicker/better. So I’m trying to not despair that they have restarted, and instead have hope that they will go away again any minute now.

We also leave tomorrow morning for two days of appointments up in Milwaukee. Again, nothing huge. Just regular routine followups. But I’m hopeful that GI has some new ideas about how else we can keep Kendall’s tummy moving, preferably with a modicum of pain involved.  There are a few other body systems we will be discussing with complex care, so fingers crossed that everything stays mostly at its regular crazy baseline.

The girls start dance up again this week, Kaylen is supposed to start school on Wednesday (but we’ll be in milwaukee), and then we will be preparing for Karissa’s MRI on Monday morning. Ben is leaving for his trip tomorrow morning also. I need to pack everything required to keep KQ functioning for 24 hours, plus everyone’s clothes, plus meds/o2 tank for kaylen, don’t forget the new insurance cards and papers since everything needs to be updated now that its the new year. And while none of this is super stress worthy – i feel like I have the energy to maybe pour myself into the carseat and press the gas pedal. That is about it. The rest of it feels like a marathon at this moment. So i’m attempting to not get panicky about it.

It will all be done. It will all work out. the appointments will bring about the exact information and changes that we need to have happen, and we will all be safe and sound and ready to conquer our usual crazy schedules again starting next week.

All the other stuff I WANT to get done – it will get done.

Because what really matters right now is that we are doing good. We are home together. Kendall is healthy by her own standards. The rest of us are mostly healthy. The heater works again in our house. The rest is just icing.

As always – so much more to say – not enough time to say it in.

thanks for checking in on us!

 

love and hugs~

terra.

on the road again.

I know I know – I have more than a few days to backdate! including my Mito Week wrapup! It’s been…well i just haven’t had time to blog much! for a plethora of LITTLE reasons that all just suck my time!

anyways – tomorrow (Wednesday, probably today for most of you reading this) we have a REGULARLY scheduled followup appointment with GI (gastroenterology) up in Milwaukee. A few weeks ago, k4web2 I would have said this appointment was just a file filler – one to check off and say we did it. But about a week and a half ago (when we tried to bump feeds up to the HIGHEST number kendall has EVER tolerated into her tube), things quickly started heading south. We made a few phone calls and got “permission” to back off of the rate of feeds and try to bump the amount of hours up. Wrong. That made things even worse and we went even FARTHER backwards.

so to say that I will be marching in there tomorrow like a bat out of hell on a mission would be an understatement. My baby who handles pain in SUCH a stoic way is starting to crumble. I am tired of watching her monitor all nite every nite, dealing with the nausea and ensuing grumpiness all day, watching her have less and less time to just play like a “regular” (well, as regular as it gets for kendall) kid. Having her struggle to catch her breath today for some unknown reason (although we do know it was related in some way to the intense gut pain/nausea she was having) was kind of a final straw for me. SOMETHING has to be out there to help her gut work. We will talk through it until we come up with a better plan than what we have right now. And i am sure that switching formulas will be a part of that – which is always a fun thing with miss “allergic to everything for no good reason”.

As a fun precursor to all of that partying, she gets to have her GJ tube switched out – YAY! If you’ve never had the pleasure of getting your fully awake and aware toddler velcroed to a flat hard table while you crouch down next to them to tell them not to be scared of the huge buzzing camera that gets pulled down to just about touching their head all while a doctor and 2-3 nurses and techs pull an old tube roughly 16 inches long OUT of the hole in their tummy, stick a wire INTO the hole in their tummy, move it around the bends and folds of their intestines, and then stick a new tube BACK into the hole in their tummy – well, then you’re likely not to understand the beauty of a couple Xanax washed down with a glass of wine. My brain hurts just thinking about what tomorrow will bring. I am sure my heart will be hurting even more.

but maybe not. maybe we will get some great news. I mean at this point, having A PLAN will be great news, so that is one positive take away. and maybe she will not cry at all for tomorrows tube change. Maybe she will sleep the whole way up and the whole way home and it will be an overall great day. If I think positively maybe i can wish it true.

There is a TON of logistics involved with getting the three bigger girls to their schools, picked up from their schools, to a rendezvous point with my sister, and getting us all in the same place at roughly the same time at my mom’s house halfway between home and milwaukee!

If you have a few moments to spare – please keep us all in your prayers for the craziness of our day! Ben will be on a flight to St. Louis, which just adds to the funness of this day of chaos! I’m not going to be super superstitious and say what usually happens when ben has to actually FLY for work (he usually drives) – but – let’s just all THINK POSITIVE ok>???

Ok. now i need to go try to get some sleep so i can be on point for this day of fun!!!!

 

thanks for checking in!

(ps – the pic in this post is from last year – it’s all i could grab on a short picture foray into my pic folder!)

terra.

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