Things you Learn.

I don’t know why I decided today was the day I was going to share this. But I just wanted to.

Maybe because these times with Kendall in the ICU are some of the “dark times” i reference in the vlog I’m inserting below. Or maybe just because i’m sleep deprived and there is no rhyme or reason to anything i’m doing right now.

Anyways –

as a quick Kendall update (and if you want more up to the minute ones – be sure you have “liked” her page on facebook – there’s a link over to the right in the sidebar if you’re on a computer and on your mobile, scroll down below this post –

She is not septic – and that’s a very good thing! That’s what usually makes her go tumbling downhill head over heels and end up intubated and on all the pressers, etc.  She does have bugs growing out of the blood we take from her central line – but not out of her peripheral veins – so that means she is not even bacteremic (blood infection) – which is what the suspicion was yesterday. And to look at her – she is definitely holding her own.  But even with all this “good” news, and a pretty happy Kendall, it still just wasn’t adding up to me.  Something wasn’t quite right.  Out of that weird sense moms have, I asked them to please run a urine culture. I was met with resistance and all kinds of reasons we didn’t need to do that – but I asked if they would please just do it to shut me up.

And whaddya know??? She sure enough has a nasty UTI as well. And THAT makes much more sense to how she is acting and how/why she got so sick so fast. So now we are working on chasing that information and getting the right antibiotics for that bug also. Overall she still remains in good spirits and is not currently trying to pull any scary stuff.  I am VERY grateful for that. 
I am grateful for a lot of things – some of them are harder to put into words than others.  I am grateful for the love and support from so many friends and family who lift me and my family up during these times when our lives are thrown upside down.  I am grateful for the relaxation and peace of my trip last week and that Kendall waited until after I was home to pull this craziness! I am grateful for every breath of life I am blessed to live and I am grateful for the hard lessons I have learned this past year.

So …

there’s that.  I realize it probably doesn’t make sense, and honestly i  haven’t re-watched it since i made it so it probably REALLY doesn’t make sense.

But that’s what was on my mind today. There might be more later. You never know. So check back often.

And if you want me to talk more about the swimming in the bat cave experience, let me know!

Peace out party people. I’ll try to have a more make sense blog post later.

Terra.

5 Things i’ve learned at the hospital

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

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

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

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

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

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

 

what a week.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

terra

It’s Not even Friday.

Kendall usually pulls her crazinesses on a Friday. But I guess a Wednesday afternoon of a week when daddy, memaw AND poppa are all gone out of the state, there’s a snowstorm threat, and mommy can hardly breathe is good enough for her medical drama!

She woke up from her nap this afternoon retching (dry heaving), which is weird in and of itself, only because she has been having a pretty ok week tummywise. Her urine has been looking much worse the past couple days, so we finally did a dipstick (urinalysis) on it at home. It definitely was “off” (lots of protein, leukocytes and nitrates – indicators of a UTI), but we somewhat expect it to be off more often than not. The nitrates and protein were in much larger quantities than typical though, along with a few other random findings.

Of course she woke up right as our nurses were changing shift and we had another new nurse coming to meet our family/see if there was a mutual fit for nursing services. She sure got a quick induction into the world of kendall when kendall started vomiting (which includes a lot of retchy choking trying to get the vomit actually up through the knot we had surgically tied in her esophagus and stomach to prevent her from vomiting), and we were leaning her over the kitchen sink, attaching extension tubes and drainage bags to her G and J tubes and pushing IV zofran into her broviac. Just another day around here!

The vomiting craziness continued throughout the afternoon, in spite of 3 doses of her anti-vomiting combo (IV zofran plus IV benadryl), including some oral zofran pushed into her J-tube (which actually induced more vomiting. she has a slight fever, increased need for oxygen, and high heartrate. All of those things kind of go together (a fever will naturally induce a high heartrate, and that can lead to lower oxygen saturations) – but they are all unusual for Kendall’s “normal”.

The only time I’ve ever seen her vomit like she is vomiting now is when she is about to cross over into sepsis (not a good situation, she is typically very very sick when she starts vomiting). She is nauseated most of every day – but never actually gets real puke up. Dry heaves, sure. But this is….confusing. I don’t know what to make of it. All I know is – it’s going to be a long night.

Ben’s flight yesterday got cancelled due to a snowstorm, but he did fly out this afternoon to the West Coast. My parents (my other backup!) are in orlando with my sister’s family all this week. Right now as it stands that would mean if Kendall spikes a fever in the middle of the night or otherwise takes a turn for the worse, I would be packing up all four kids by myself to schlep her to the local ER, where they would likely have to immediately call for transport to Milwaukee. That would mean i would have to send Kendall in an ambulance by herself while i followed behind with the other three kids, and then got all settled into a hospital room up in milwaukee with everyone now exhausted.

Now that scenario is highly unlikely to happen, but that’s the reality of what it would be like if she got sicker overnight. I have a couple friends who are willing to come sit with the girls if I do have to go to the ER, but no one who the girls really know very well. Kaylen has already had a very rough past couple of nights herself (very bad leg pains resulting in her not being able to walk/stand on her own), and would likely wake up to a “stranger” in the house and go into full on meltdown mode. Kealey is moody about her birthday being ruined by having to take daddy to the airport instead of having a fun birthday lunch like we had planned, and now the possibility of her sister needing to go to the hospital has her in another mood tailspin. Karissa would of course take it all in stride but would go to her happy place and likely walk into traffic without noticing because she is up gathering clouds to get away from the craziness.

Like I said – it would all work out, IF it even came to that – but this is the very real scenario we  have to deal with when Kendall gets sick. We do a LOT of stuff at home to avoid having to go to the ER/hospital until she’s very sick – but tonight, all of those things are only helping minimally. if she is trying to get sick, she’s gonna find a way to do it eventually. i just hope she holds out until the logistics work out a little bit better.

Even better scenario – it’s just some random tummy bug. i know “it’s going around”. The only hole in this theory is that Kendall’s gut on a GOOD DAY is “tummy bug central”. Her regular gut flora would probably have most of us healthy gut folks praying to the porcelain god. So the thought of her having a tummy flu type virus thing going on doesn’t quite fit what I’m seeing, but i’m happily trying to ignore that and pray that it IS just some regular tummy bug. Preferably one that doesn’t spread to everyone in the family. I already am dealing with some crappy head/chest cold myself. A tummy bug running through this house would just be the ICING on the cupcake. But far preferable to the alternative of Kendall having a line infection or UTI-gone-wild.

I’m already exhausted, but won’t sleep good in my own bed because I won’t hear Kendall puking/setting off alarms. So I need to sleep on the floor of her room so I can make sure she is not vomiting/choking on her vomit and reposition her as she needs. And hopefully she sleeps fine through the night and I just wake up with a sore back and we go on about our crazy normal lives.

I’m off to go layer some blankets on the floor to soften it up a little bit.

Thank you for checking in here – and for your faithful prayers for all of us.

love and hugs~

terra

Round and Round.

Right now I’m waiting for rounds. Not very patiently. I need coffee badly. And a reese’s cookie for good measure. But I don’t want to miss the team rounding because they will give the update on what is going on as a cohesive report, vs the piecemeal info I get from random nurses and doctors who come in.

Anyways – things are still going well. Kendall continues to look really good – not at all “bacteremic”. Very very good news! So far her cultures from yesterday, both peripheral and off her line, are negative. We are almost at the 24 hour mark so that is also very very good news!

It is looking like the original bug growing is enterococcus, a gram positive bug that CAN be a hospital acquired bug. They are pretty sure it’s not a contaminant as the original hope was, but are still stumped as to how she managed to pick it up. She also has two gram-negative bugs growing in her urine that are still pending identification. Given the NASTY laundry we were dealing with on Sunday and Monday (and the lingering horrid smell in her bedroom still) – I am not shocked by this. Her urine was basically so full of mucus that it looked like she was peeing skim milk.

All of this is making her doctors think that what we did was catch an infection EXTREMELY early,IMG_4658 mostly only by luck (although I tend to think it was probably more God-directed than anything). And that what could be happening is that Kendall is translocating stuff out of her bladder AND gut – but that because she routinely has these kind of “off days” and autonomic temps, *I* am (claiming sole responsibility here) not getting her checked/treated in time, and it’s going systemic. Now of course her doctors aren’t blaming me like this, they say “how could we know? she’s had just as many times where nothing has been wrong as has been times where something is wrong” – and that is true. But still – the conversations have been more about what will our protocol be for getting her “wonky days” checked out a little better. If we can just put a stop to this current cycle of infections, everyone thinks we will be good to go. we had her infection free for over a year – we can get her there again!

(clearly I got a little more sleep and food since my post last nite – I am able to think much more clearly and be more positive about where we are at!) so anyways – that’s what I know right now, early afternoon.

The doctor we have been waiting to have consult on Kendall’s case just came in. And luckily he lived up to expectations! (this may or may not be because he told me that moms like me are to be listened to very very closely, because we will usually teach doctors a thing or two!) Overall, he was just a breath of fresh air. He had read the history of kendall’s latest infection cycle, and just had a creepy understanding of how and why little organisms work in the human body. He will be changing a few of her meds around, which will mean a rather crazy schedule at home (where we don’t have the luxury of nurses around the clock to do all the work!) He wanted to know if I was going to be ok with that. i told him that if i had to administer IV antibiotics every 2 hours I would do it in order to keep this line clean. He laughed at me a little and said “john (kendall’s special needs doctor) told me you’d probably say that, but I wanted to hear it for myself!”

So we will do the crazy med schedule and new line protecting regimen and hopefully get on top of this cycle once and for all. But our conversation wasn’t entirely focused on this acute situation. In fact, we talked for longer about WHY this is currently happening, and what can we do to STOP it. Most CVL moms know/dread the term “cycle line infections”. It is when your body does what Kendall’s is doing – continuing to spew out infection after infection, as soon as the antibiotics are stopped, a new course is needed. Some kids get into cycles very often – other kids rarely have a cycle, and still others never cycle, but get random infections. No one really knows how or why this difference is. But at the end of the day – Kendall is in a cycle.

He found it very interesting that while Kendall has had cycles before, we also had a year+ of having NO infections. The main difference for that? Kendall’s overgrowth meds. I think I’ve talked about these meds before – they are a bunch of super strong IV meds that we get compounded down into liquid gooey nastiness that we can push through her tubes in order to kill the bad/overgrown gut bacteria that likes to leak into her bloodstream. Due to the nature of the meds and the fact that we need them compounded at a special pharmacy – they are NOT cheap. Insurance covers a nominal amount (roughly $30), and Kendall’s secondary Medicaid won’t even touch them because they are technically “black boxed” meds. Basically this summer, we couldn’t afford her meds. And now we have her back in a cycle. Our special needs nurse sent orders to a local pharmacy up here to see if they can get insurance to see the fallacy of their payment reasoning. $250,000 for a monthly hospital visit, or $250 for a monthly supply of drugs. Pretty sure even a politician could figure out that math. We have two doctors ready to write letters of medical necessity to support her needing these meds and hopefully between all of this, we can get our out-of-pocket costs back down to an affordable amount.

IMG_4591 But those meds are just one part of the equation. We will also be starting the ethanol locking of Kendall’s line to ensure that the broviac itself has kind of “bad bug repellent” on it. And when i asked Dr. Havens how to stop the cycle of infections, he looked at me and said “ Stop the antibiotics”.

Alrighty then!

Basically what he means is this (I’m borrowing his analogy – cause i think its so great! And easy to understand!) – Pretend like your gut is a church. And the walls of your gut are the pews people sit in. You want there to be GOOD people in those pew – nice, pearl-wearing, praise-singing little old ladies who love Jesus. (ok i get that theologically this is not sound, but go with it). Good people in the pews of your church – got it?

well, antibiotics come in and make the good people of church leave. Just kills them, makes them get up and stomp out, take their friends with them – gone. And THENNNNn – that leaves room for all the BAD PEOPLE to come sit in your church pews. Tattooed, bike-riding, swearing, drug-dealing bad people are now sparsely sitting in the pews of your church, and letting all sorts of chaos go on in your church (gut). They run rampant, knock holes in the walls of the church, and now you just have a bunch of tattooed Hell’s Angels roaming around your abdominal cavity and taking cruises in your bloodstream. Kendall’s church does not have good people in it!!! So the way to STOP this activity, is to stop antibiotics. Drink Activia, repopulate your church with good people sitting in nice strong pews, and non-holey walls in your church, eat yogurt and leafy greens. Poop regularly – so you can flush the bad guys down the toilet. Literally.

Clearly, that is a great theory for guts that actually function well. Kendall’s does not. So our goal is to keep the bad guys moving, and reduce Kendall’s antibiotic use as much as possible. This will mean that we treat even less of her UTI’s than we already do. This will mean that she will have more pain again – but there are ways we can hopefully lessen the pain, lessen the risk of re-infection, and keep things moving forward. AND GET OUTTA THIS CYCLE!!

So what I came away with is that Kendall does have an immune deficiency – but it is one of functionality vs. one of a “traditional” sense where her blood cells don’t function well. Her immune SYSTEM (the T-cells and IgG and all that good stuff) that is actually functioning pretty well, given what it has to fight on a week to week basis. It is part of why she DOES bounce back from her infections so well once we get the right meds in place to kick the bad guys out of her bloodstream. That is a very good thing! Finally something her body does RIGHT!! But a major component of a HEALTHY functional immune system, is a healthy functional gut and bladder. That is how germs leave your body – through your waste. Kendall’s body doesn’t have an effective waste management system, and THAT is why she is in this current cycle. Microbiology – I do not understand at all. Gram negative, gram positive, rods, chains, bacilli, fungal pseudohyphae – gibberish. Poop? That i can do.  Keep her pooping and thereby we will HOPEFULLY keep her ridding herself of the bad guys. This is so much easier said than done that i can’t even tell you. BUT – it is a plan that I can understand. There aren’t a whole lot of warm fuzzy answers out there right now – but if this is as good as we can get – I’ll definitely take it.

We still have to have a few more conversations with her team as far as when and how do we react to Kendall’s “off days”. How do we know when to treat and when to sit back? Lots of questions still –but i feel like we at least have a compass heading now. SO much better than yesterday. Again I am blown away with the good care she is receiving here this visit. She somehow convinced her student nurse to take her to the playroom today.IMG_4674 Honestly i am not sure how he managed to convince his instructor that he could only work with Kendall today, and that playing tea party with her was part of the care he ‘HAD’ to give her…But up and down the hallway I can hear people walking by the playroom – oh look! Kendall’s in there! Hi Kendall! How are you Kendall! I am SO relieved that she feels good enough to go play in the playroom, as that rarely happens when we are here! She is definitely getting ready for her Halloween character – Cinderella – by being in RARE princess form and ordering around basically everyone who comes into our room! If it wasn’t so brat-tastic it might actually be cute. Our main doctor (her special needs doc) actually sent a text to her team yesterday when she arrived in the ER:”Kendall is in the ED for the + cultures. She is just TOO CUTE! Wanted graham crackers. I got her some. Admitting and ordering abx.” (One of the nurses showed it to me!) And this is why she thinks she can get away with anything! Being cute is actually part of her charted record!

Anyways – obviously a much better update today than yesterday. That is mostly due to your prayers. So thank you for that! Even I feel much better, lighter-hearted even, than yesterday. It is by the grace of God that our doctor ordered those cultures. If he had not, we would have gone on our merry way with me continuing to chalk Kendall’s bad days up to a brewing UTI. The bugs growing in her urine are QUITE nasty (but not entirely unexpected). If we had let her body continue to get weaker from a presumed UTI, when in fact it was already fighting a bloodstream bug, and those UTI bugs leaked into her bloodstream….oy. I shudder at the thought. It would not have been a pretty picture. I am so beyond grateful to God for His constant protection over Kendall, even as I felt like He was leaving her hanging, leaving all of us on our own to fight another infection – it turns out that He had even MORE protection over her than I thought. you just never know sometimes – how even the darkest road you are on may be the very path you need to take to places beyond your imagination.

I hope and pray that all of you are having beautiful Thursdays.

We’ve been asked what do we need by so many of you wonderful friends and family – and honestly, I’m sure I could rattle off a list if I had enough time. But really, I am happy and blessed and content right at this very moment. I have a sleeping baby (FINALLYYYYYY!!!!!!), who is receiving her needed medications as she sleeps. I have a reese’s peanut butter cup cookie from the bakery downstairs. But most of all, I have HOPE again that she will get out of this cycle. Be her happy, pain-free, silly, strong beautiful self again. HOPE that we will be together again as a family by some point this weekend. It’s a good feeling, this hope. It covers an awful lot of wants/needs/desires. It does not mean that everything is fixed, or that we have solved all of our issues. But the warmth of the hope in my chest at this very moment – it is enough. Dayenu. (<—that links to a blog post i wrote almost exactly a year ago. It still holds true today. Maybe even more so. Go check it out again if you don’t remember it.)

I’m going to try to catch a few winks of sleep myself while Kendall is down for the count. She will want to go IV pole skateboarding later tonite (fun sport, you should try it sometime!), and I may try to go hunt down some non-moldy food in the cafeteria too. Thank you all for everything – the words of encouragement, the notes on facebook, the texts, the phone calls. I know I am so behind on responding to everyone and everything – but know that I read them all, and am encouraged and touched by every single one of them.

If things change tonite, i’ll try to do another update. As of right now, I have not heard of any growth past this mornings negative result, and I am hopeful that it will remain so. We will continue to work on tweaking the meds and the schedule tomorrow, and hopefully head back home sometime on Saturday or Sunday. Blessed be the name of the Lord.

Love you party people!

 

T-crest.

(and yes, the pictures are all random ones I’ve taken over the past couple weeks – nothing from in the hospital! my phone is currently full. I need to dump pics off of it in order to take more. anyone want to donate a 64gig iPhone to me?????? ;)  )

Back for the Broviac.

So.

We survived the week. My mini-meltdown of last week did eventually find resolution. No one was left behind, everyone made it to their respective places, my sanity and faith in humans and goodness was restored.

Karissa’s appointment. I’m not quite ready to talk about all that the details mean, IMG_4607 but the testing that she underwent last week at the appointment with the audiologist did confirm that there is indeed “ a problem” with Karissa’s processing of audible information. She “hears” things ok, but does not “listen” ok. You know on Charlie Brown where the teacher talks in a “wahhh,whaaa, wahhh whaaaaa” type of voice? That’s how Karissa hears in pretty much any situation where there is background noise. I mean, I KNEW all of this. And in some recessed corner of my brain, I knew she would probably one day be hit with this diagnosis, but to have it there in black and white on a report in front of you, to be handed a list of “how to help your child in the learning environment” tips for the teachers…ugh. It just hits a little harder than you think you’re prepared for. I mean, when she was neck deep in therapy at the age of 2, a therapist first brought up that she likely had “Central Auditory Processing Disorder”. It sounded like a nice way of saying she couldn’t process info correctly, and it seemed to fit.

Having the audiologist hand us that “official” diagnosis however was far different. Because I sat there in that little room, watching my beautiful baby girl with those huge headphones on her head try to follow the directions in the test. Try to focus on hearing the sentence in just her right ear while numbers were being whispered into the left one. I watched her go from a perky, energetic, leg-bouncing bundle of smiles into a limp, melty, strained, withdrawn, sad little girl, with hardly the energy left to sit in the chair upright by the end of the test. It was a dramatic change. One I was not ready for, really. We are going to need more followup with her neuropsych doctor, and will obviously need to meet with her teachers at school to discuss how to help her in a classroom setting (as you can imagine a room full of 3rd graders is not exactly “free of background noise”). When I emailed her teacher to give her a heads up that our conference time would likely not be enough (we get a 15 minute conference with her in two weeks), i got a phone call rather quickly from the teacher. We were able to discuss a few things right away, and her teacher brought up that she had also seen karissa do the “energy slump” in a dramatic fashion a few times. Clearly, we have a few things to tune up for her. But I am so relieved to have a teacher so willing to help her students thrive in the classroom.

We’ll get through that one like we always do. it won’t make it any easier to actually DEAL with Karissa’s cloud gathering, but at least we can be armed with more info. Figure out ways to help her succeed instead of feeling like we are all always picking up the forgotten pieces for her. Like i said at the beginning – there’s a lot of stuff to unpack from this new piece of baggage. It’s less about the diagnosis itself and more about how to deal with the unique special needs of another K. Last week was just not a good week to get the info. This week isn’t tons better, but by next week, i’ll have it all sorted out, just you watch!IMG_4722

Anyways – tomorrow morning I’ll be getting up bright and early to pack Kendall into the car for yet another trek up to milwaukee. Another lonely wait in the crazy waiting room. Another scar earned by my beautiful little girl. As far as surgeries go, this one is “easy”. We’ve been down this road plenty of times before. But for some reason I feel a sense of urgency to pray for God’s guidance of the surgeons hands, pray that her veins are open and strong enough to hold the line, pray that there are no crazy kendallisms thrown in that would throw this “easy” surgery for a loop. She is still making a recovery from the sepsis of last month. She has not slept well in a few days and is more tired than her usual tired. She quite likely has another nasty UTI brewing as she has battled lots of pain, a low-grade fever, and the most disgusting smelling urine you can even imagine in the past 48 hours. All of these things just conspire to make it a “less than ideal” situation for tomorrow’s surgery. This picture is of her going to bed the other nite, hooked up to all of her tubies – 3 IV lines for all her meds and tpn, G-tube to drain, J-tube feeds, urine drain tube (foley catheter), oxygen, pulse ox probe. She crosses her legs like that when the bladder spasms are super painful, and she will sleep like that almost all nite. She’s picking at her fingers because the skin is just peeling off of her fingers and toes, and causes more pain for her. (I have no idea why this is, I think it’s a micronutrient/metabolic thing, but not sure. Anyways – not much we do helps it, so she just deals.)

So – we need prayer. Lots of it. I’ve had the pre-op nurse tell me to pack a bag (actually she laughed out loud when i said that we normally get discharged within a few hours of this surgery), and even Ben reminded me that I better pack a bag. Any medical momma knows – if you pack a bag and have it in your car, you won’t have to stay. But if you don’t pack the bag, and you have nothing ready with you, chances are very good that you will be admitted. So i’ll pack two. Just to be OVERLY prepared so that the backwards superstitious magic we mama’s hold on to works the way it should. The big girls will be in good hands – their daddy’s. He was able to get his flight bumped back so he could be home with them all day. This will be huge for their emotional wellbeing. They are all extra crazy/clingy/emotional when i’m not there, when we have to go to milwaukee for any reason. I was so grateful for everyone who stepped up to help us last week – but would have felt bad hefting the entire emotional burden upon whomever had each of them. It’s not easy. None of this is. Some days i get really really really tired of juggling all that I do, and just want to run away, if even for only a few hours. But at the end of the day, I know we are all blessed. We have no need to complain, because we have so very much to be thankful for instead.

IMG_4739I’m already tired. And i still have to pack. And get everything ready for the morning because goodness knows i will not be the most coherent and organized at 6 am.

We were able to get her special magical “glass slippers” to complete her Cinderella ensemble a couple weeks ago. I’ve had them hidden since then, waiting to surprise her on Halloween. But you know what? I think if any little princess ever needed some glass slippers, tomorrow would be it. So i’m gonna let her wear them.

Bibbity- Bobbity-Boo, baby girl.

 

My team of “Terra Texters” – you know what to do. Send me the funniest, craziest, most ridiculous stuff you can think of during my time in the waiting room. I don’t get to answer them all – but I do read them all. And they help me not feel like the walls are closing in on me during the long lonely waits. She’s scheduled to go back at noon, start time of 12:30. If you want a more up to date time, check the Terra Talking Facebook Page.

Don’t Stop Believin’.

 

Terra.

Nothing Fun about Fungus.

Quick cliff notes catchup for the peeps not on facebook: Kendall is back in our local hospital with another infection. We were admitted late Saturday afternoon, and by mid-Sunday morning we knew she was growing yeast in her blood/line and bacteria in her urine. She was spiking fevers up to 105 early on Saturday after a semi-weird/off day for her on Friday, and that’s why we brought her in. She looks about as sick as she is – which is pretty sick right now, not gonna sugarcoat it. However, in typical Kendall fashion, just as quickly as she looks like she might be going downhill, she will perk up and ask in the sweetest voice if it’s time to go back to our car or go paint in the playroom yet.

 IMG_4513 So this is what is throwing me. She usually reveals her secrets in some way, at least to my discerning eye. I can typically tell at the first sideways fart whether or not she is sick/getting sick/needs to go to the ER.  But this time I couldn’t. Even now, as we sit here with the limited info we have, I cannot tell you what is going on in this little body of hers. I know she hasn’t made the turn around the corner that I like to see by this point. She was started on what should be “the right meds” last nite, has been getting nonstop fluids/meds/antibiotics and antifungals – but still, she’s just not “better”. She’s holding her own, don’t get me wrong. But she is up to something.

Right now, there is a very good possibility that what she is growing is resistant to the medications she is on. This could be because they are just strange (new) bugs, or it could be that her recent back to back issues have caused her bugs to “mutate” into resistance. (I’m oversimplifying it obviously – microbiology + me = not a good combo). Either way, all we are doing right now is holding the party in her bloodstream at bay. We are kind of playing a crazy game of thumb war, except with bugs vs meds/organ systems. If the bugs continue to eat through all her good blood cells, she has no defenses, and she could become “septic”.  Right now, there seems to be a standoff in that the bugs aren’t necessarily doing further damage at the moment, but they aren’t leaving her system either. The medications that she is on COULD just be pissing off the bugs even more, or they could be helping us gain a small victory. It’s hard to tell without knowing exactly what is going on in a little petri dish down in the basement somewhere labelled “Atkinson, K.”

I know that fungus (yeast) is Kendall’s long time arch nemesis. Her immune system is basically useless against overgrown yeast, but they sort of have an understanding and for the most part, leave each other alone. Yeast is nasty to get rid of. It can attach to any one of the plethora plastic tubes inserted in her body at any given time, and start a nice little family of blood-sucking killers. We are hoping right now that perhaps that is all that is going on – that we are drawing back fluids from these plastic tubes, and drawing in a bunch of yeast babies, and that they haven’t run rampant through her system again. This would be best case scenario. We can kill small little colonies hanging out at the entrance of plastic mecca’s. If the yeast has gone systemic, we have a much bigger battle on our hands.  We simply won’t know the answer to that question though until the petri dishes, and/or Kendall’s body, give up their secrets. She is currently, like clockwork, spiking fevers through the antibiotics/antifungals/antipyretics. With these spikes come horrible chills, very high heartrates, lots of horrific retching (trying to puke but being unable to because there’s nothing in her stomach, and even if there was, her stomach is tied in a knot surgically to prevent puking). This gives her a wicked headache and in general makes her beyond words miserable. It is heartbreaking to watch. Our nurse is amazing and has started anticipating these small little signs that something is coming up, and has been SUPER responsive with getting things pushed in to help relieve the spike before it can even build up.

Our doctor has been on the phone with the team in milwaukee. Until we know more info about what is growing and where, there just isn’t a lot that can be done. ID (infectious disease doctors, people who actually LIKE microbiology) should be coming by in about an hour to help us try to sort out what is going on, what meds to switch to, get a plan in place for if we need to talk about transferring.

And in the time it took me to write that – he was in here discussing plan!
For tonite, we are switching up her meds, trying the one thing that has consistently worked for her in the past (a somewhat brutal combo of meds, but better than the “last option” med that the doc originally brought up). She is definitely starting to feel the effects of being so sick, and is just “tired”. I put that in quotes because I don’t think it’s possible to fully sum up what I mean by tired with kendall. She just needs rest. She needs some support troops (better meds) to come in and help fight off the fungus. We need those little dishes in the lab to offer up some good info very soon. She NEEDS to start making pee again. Right now her kidneys and her gut are not super happy, which is to be expected with a sickness like this, but the pain that this is causing her is hard to stay on top of.

tomorrow is picture day at school. I have three other little girls at home who need help making sure their hair is not its typical banshee style, who need clean leotards and tights for ballet class tomorrow. Who need to be comforted by mommy that sissy is doing ok and will be home soon. Ben took this week off of work so we could switch on and off. the black and white stuff that is easy to check off a list, we got that down. If i try to stop and think about some of the other stuff, the little stuff, then i start to fall apart. By little i mean, questions that we just don’t have the answer to right now. But this is the way of our lives. Don’t make plans – they’ll likely be interrupted by a hospital visit. Don’t get too attached to thoughts of a clean house – it will likely never happen. But we will experience blessings in ways that other never get to. A card from a friend. An unexpected visit with coffee just the way i like it. A crazy voicemail with words of encouragement, and a few hysterical inside jokes thrown in for good measure. A cheeseburger that is so good it nearly brings tears to my eyes from a friend who was “just passing through”. You all give me the strength and encouragement to go on. And when I have strength, I can pass that strength on to my family. your prayers are felt – they always are.

Your offers of help – please believe me, they are so appreciated. I don’t often even know what “help” I need to start asking for! Assuming we stay in the area,I may need help with the logistics of getting the big girls to/from dance. Kaylen’s super-fun half-day kindy schedule may require some creative planning. Those of you who are just texting for my food orders/coffee orders – God bless you. Seriously. I don’t think I can tell you how very awesome it is to be able to get real live hugs from some of you during these times. When we are stuck in Milwaukee, we do get a few visitors – and our family is so graciously awesome who lives up there. But there is nothing that can replace having so many of you so close, and so HERE with us through it all. So thank you to everyone who has already stopped by, or given hugs. Including those friends who were in the next door room to us in the ER last nite with their own son! Sanctuary people – you are AMAZING examples of God’s hands and feet here on earth. We could not live this crazy life if it were not for you.

This is getting crazy rambly. I’ll try to update in the morning as soon as I hear more info.

Thank you, thank you thank you – for praying, for caring, for being on this journey with us.

 

terra.

Home Sweet Home.

I just realized I forgot to update after the events of yesterday. mostly because i am absolutely wiped out – physically, emotionally, any other-aly you can be… Also because I am pretty sure my trusty keyboard on my laptop (ergo, my entire laptop) is trying to die and I literally type so fast that it takes 30 seconds for the words to catch up on the screen and then they are jumbly and it frustrates and saddens me so I avoid blogging. I don’t know what I’ll do if it fully dies on me because the only other working computer in this house is our 11 year old desktop that i think has a 500mb RAM. It’s actually kind of comical. Anyhoo. That’s part of the reason for the long blogging lapses. But mostly just because I’m tired.

 

Randomness aside – (yeah right – i’m the queen of random!) – we are home, Kendall is still on some IMG_4308 good strong bug killers via IV, and we found what we believe is the culprit. The lab was able to identify yeast growing in her urine – and while this may seem like a no-brainer, it actually is hard to identify. Even harder to kill. You may or may not recall that yeast is an archenemy around here. It is partly due to kendall’s uncooperative gut, partly due to her love of all things sugar, partly due to her crappy immune system. Whatever the cause – it’s now in her bladder and explains a lot of her pain and issues over the past couple weeks. For all we know, she had the yeast last week also – as the lab didn’t find it until we sent a separate culture specifically for yeast from her urine. Adding to the chaos is the fact that the doctor who discharged us so swiftly last week wrote the prescription wrong for our pharmacy. So instead of giving her a full 1300gm of the antibiotics every day, we were giving her half that. I about put a hole in a wall when I made THAT fun connection. While it’s fun to have something (or someone) else to blame, the bottom line is that Kendall has been sick for a while. She very likely had a UTI brewing even before surgery, and while i’d love to point fingers at what should or should not have been done, there’s really no point at the end of the day. She got sick, she is getting better, and I have learned some valuable lessons about how very important it is that I stay on top of everything and continue to be Kendall’s voice and advocate.

The very good news is that as we’ve finally been getting her infection under control, her pain levels have DRASTICALLY decreased. she still has quite a bit of pain, especially if she’s trying to be too active (i.e., if she gets up off the couch or out of bed for more than about five minutes) – but overall, she is returning to the sweet baboo we all know and love. I am SO glad to have her returning back to me, to all of us. I’ve had some tough conversations with her nurses (our daily and weekly ones, the ones who are like part of our family) – and we will likely be having some tough conversations with most of her doctors sooner than later. Things like her chronic pain control, her increasingly “complex” needs at home, how those needs affect the whole family. It’s not all doom and gloom – I just think that while Ben and I have done our darndest to keep moving forward as if life is totally normal and she is totally normal, it is wearing us all down. Because while it is OUR normal, it is definitely NOT normal. It is frustrating and often heartbreaking and it wears me out more often than not. I don’t know how or what to change, but I’m pretty sure something’s gotta give. I know some of you give me way too much credit. I’m not wonder woman, in spite of my attempts to prove otherwise. I’m far from it. My house is often very messy, I rarely cook healthy (or even unhealthy) meals for my family, I need FAR more exercise/schedule/routine/discipline in my life…should I go on? I think maybe sometimes too I avoid blogging about it because I don’t have anything but semi-depressive ramblings about how tired I am and how much I just want to whine about all the balls I keep juggled.

But that’s not who I am really am. I’m not a whiner. Ok I am a little bit. But It’s not a large part of who I am. I look around at so many of my online friends/inspirational mentors in the medical mom life, some of whom have lost their precious angels far too early from this earth – and I think – what the heck am I complaining for? I think unless you have experienced something like that, you may not get it. Every single time I want to break down crying that I’m up running IV antibiotics at midnight, or emptying my daughters urine from a bag into another container and hoping I don’t spill any on the carpet, or getting frustrated at the insane amount of preparation and work that goes into preparing her Iv nutrition/fluids/meds for the day – a voice stops me and says – “but at least she’s HERE for you to have to do this stuff for.” So so so true. How quickly I forget. How quick I am to take for granted this beautiful wonderful life that we have been given.

How IMG_4278 dare I sit around feeling sorry for myself instead of celebrating how very blessed we are? so I gotta do something to get myself out of this funk. I think last year at this time I was blogging about roughly the same thing. I feel like I’m a broken record of my own self – repeating my same goals and mantras and hopes for finally being organized/scheduled/ahead of my own life enough to stop and bake cookies for my children when they get off the bus from school. I don’t know how I’m going to actually make it happen, but this time i’m ready. I think i’m ready to document it here, in my little corner of the web. Good bad and ugly.

See what I mean about random? I don’t even remember what I started blogging about to make this roundabout connection….

anyways – I should wrap it up. I caught some crappy crud from the hospital and I have felt like a huge block of snot and pain all day. I should try to get in bed early and hope that I can sleep it off. We have FAR too busy of a week ahead this week. I have two different curriculum nights, the girls start dance again this week (GREATLY reduced schedule though so that’s nice! i’m not trying to become certifiable this year!), Kendall’s first day of school and all the uber-fun logistics of how that is going to happen… Karissa will be at Children’s in downtown Chicago all day Monday (possibly overnight depending on how she does) for a repeat MRI to check the growth on her spine, Ben is in Phoenix all week, I’m sure i’m missing about 8 other things that are all supposed to happen – oh yeah! I have to make the drive up and back from milwaukee in record time on thursday to be back for the curriculum night and dance….If you’d like to contribute to momma’s starbucks/gas/sanity fund let me know!!!! 😉

We’ll be ok. Somehow, things will all work out. They always do. Not always how you planned them to, but they DO work out. Somebody volunteer to bug me about all the crazy things I want to blog about this week (besides the actual details of how we manage to survive this upcoming week). Here’s a small sampling:

  • The cotton candy machine – in addition to the chocolate wonder-fall at Golden Corral.
  • Here Comes Honey-BooBoo. Yes I’m serious.
  • My Instagram Addiction.
  • First Day of School Pics.

Ok I think that about wraps it up. Because I’m in edit mode for my new blog template – can someone tell me if you can still see the facebook like page thing over on the right? If you cant – just go like the terra talking blog page please! Here’s the link : Be a Fan of Terra Talking! It will seriously make me all kinds of giddy. I’m planning another fun crazy random vlog to go along with reaching 350 fans on that page. And i’d LOVE to have 500 fans by Mito Awareness Week coming up in September! So spread the word, tell a friend. Thank you all for stopping by, checking on us, checking on Kendall, praying for our family, helping us out in the countless ways that you all do. I love hearing from you – even if I don’t always have a chance to respond right away. I read every single text, every email, every blog comment. Your offers last week to help get the school supplies, make lunches, do anything I needed – you reduced me to tears. I don’t even know sometimes HOW to direct the help offered into tangible (even untangible) things to do. We appreciate everything that is done, and everything that is thought about being done. Anyways – I’m about to get sappy. Know that you are all appreciated and loved by all of us! i pray that you have a fabulous weekend~

 

Terra

Tall Toilets.

Ok  – first – i’m extremely overly tired, so pretty much everything is hysterical to me right now. Secondly, I’m a little bit like the dog in “Up” who is distracted by squirrels mid-sentence. Third – I have so much to catch up on, I’m not sure where to begin.

So we’ll start with tall toilets. The toilet in our hospital room at Edwards is seriously made for super tall people. i consider myself to be slightly above average in height at 5’7”, and my feet dangle off this thing. It seriously disturbs me. Cause I can’t figure out WHY is it so friggin high??? I mean, I get that it needs to be accessible – but this room/broom closet we are shoved into is in NO WAY accessible for a wheelchair, so i’m thinking it was just some kind of incredible deal on clearance toilets that happened to be made with an extra 8 inches of ceramic at the base. I know you didn’t come here to read about toilets. So i’ll stop now. but seriously. I’d love to figure this mystery out. (and no – i’ll spare you the pics of me sitting on it with my feet dangling. Use your imaginations.)

Now on to the important stuff – the kendall kraziness of the week day.

Basically – when we were discharged last Thursday, it was against my better judgement. The doctor who discharged us just did NOT mesh well with my personality – and this was part of the reason I wanted to stay (cause I did not agree with her at all) and part of the reason i was ok to leave (because I could not stand her. AT ALL.) If you’ve hung around these parts for long, you know i’ve had my fair share of trying to not kick baby doctors in the shins (thank you baby cheesus). This one takes the cake. I can’t even put my finger on it other than to say I felt like her sole purpose in walking into our room was to disagree with everything I said in advocating for Kendall. I know that logic would say – “well why didn’t you just tell her you wanted to stay” or “why didn’t you go to milwaukee in the first place” – and the answer I have to that is…well basically..I just don’t know. I was trying to do my best to keep everyone happy/together with Ben out of town. I really wanted to believe that Edwards was capable of handling a “simple” UTI (urinary tract infection). it is sometimes SO very hard to be three hours away from friends, my home, my life. It’s just an easy thing to know how/what you would do in the same situation. I made the best decision with the information I had at the time. And while I didn’t think Kendall was “all fixed up” – I WANTED to think that, know what I mean? I wanted to believe that my lack of sleep had just gotten to me, and that I was overreacting, and that we all just needed to be home in our own beds and away from cranky crotchety disagreeable doctors who weren’t making logical sense with their arguments.

We spent Friday, Saturday and Sunday once again trying to deal with a kiddo in TONS of pain, still needing antibiotics, still with gaping holes in her abdomen and now with another tube in her hoo-ha (female parts for the uninitiated in “terra vocab”). Monday Kendall started in with some very strange symptoms that seemed disconnected to each other – things like random fits of pain (either she crumples to the ground in tears, starts this low moaning while throwing her head back, or just starts throwing anything and everything she can grab at whomever is standing nearby), extremely bloated stomach, grabbing her head in pain – just weird stuff that both her nurse and I couldn’t quite pinpoint what was going on. Tuesday morning, I knew something was up as soon as I walked in her room. Instead of her usual pasty white paleness, she had “that feverish glow” to her, and felt VERY warm. She typically will get “autonomic fevers” where she will be 101 out of the blue with no real cause – but her skin feels freezing cold to the touch. Alternatively she can feel burning up and have a core body temp of 96. we stopped trying to figure this out last year. She just does it. Her autonomic system basically flips us the bird and tells us to have fun. But this one was different. Her nurse walked in right as I was starting to talk myself down from not panicking, and we immediately set to work hooking her up to the pulse ox machine, taking manual vitals and trying to figure out who to even start calling. Her fever was very real, and making her feel VERY bad. I spent the next hour and a half calling urology (took a stab at who i should call), calling our lab nurse to give her a heads up because I figured at the very least we would be needing to pull blood and urine cultures, trying to calculate plans B-Z because of COURSE she would pull this two days before the first day of school and I was just done. Done. Done. DONE. I didn’t even know where to start.

As I went back upstairs to expand the parameters on Kendall’s monitors AGAIN (raising the limits so that she would stop setting off the alarm nonstop – meaning that her heartrate was skyrocketing and her sats were dropping) – her nurse looked at me and said I think we need to check her again. We checked her with three different thermometers – and then re-checked those same thermometers against ourselves and the other girls because we could not believe she was at 105.7. Immediately I said get her ready to go – took the other girls aside and explained to them that I was going to need to take sissy to the hospital, and that they were going to be ok until daddy could come home. They are so strong those girls…dealing with far more responsibility than their little shoulders were designed to handle.

As I was gingerly carrying a very hurting kendall down the stairs with tubes and wires and machines being carried by her nurse behind me – I had the fleeting thought that I should have probably called 911. I knew she was still breathing fine on her own – but I had serious concerns about her ability to stay stable for a three hour trip to milwaukee, and I honestly debated whether she would be ok by herself in the back while I drove her twenty minutes to the local peds ER (Edwards). Again – hard to put my finger on what about her was so worrisome to me – it was just very hard to watch her. To feel like I had no idea what was going on with her. To feel like she could go way bad way fast. The ER was very quick to get her assessed and start doing all the horrible stuff to her that they have to do (at that point – everything was horrible to her – she was delirious from the fever and was so freaked out by anyone coming anywhere near her). It was one of the worst times I have ever had to pin her down and subject her to the things that were helping her. I’m so glad Ben was able to get there in time for some of the worst of it. I just pinned her head down to the bed facing me and we talked about ice cream drinks and how it was ok to be mad at everyone and that i was so so so sorry and could she please just fight whatever was in her body and be ok. I ended up promising her a shamrock shake (which is impossible to fulfill in the middle of summer) – but once all the bad stuff was done and she had gotten a mickey mouse puzzle from the treasure chest and had the bubble machine going full blast in her face, she forgot about the shamrock shake and I took a cold rag and just let the tears flow into it. I sat there reading your facebook posts/comments offering your prayers and love and help and I felt so overwhelmed.

And then before I could really think about anything else they were wheeling her down the hallway to the peds unit and we started the uber fun process of giving history to a whole new set of nurses and docs. I was quite vocal about the fact that I had NOT agreed with discharge five days prior and that my answer to their standard question “what made you bring her here today” was “because someone here did not do their job last week”. I wasn’t making tons of friends. I really didn’t care. To further piss off the nurse – I suggested that her taking kendall’s temp under the arm was NOT a true reading because there was just no way that she was actually 97 when she had been almost 9 degrees hotter than that only an hour before. Sure enough, when she got huffy with me and said fine lets do a rectal then if you REALLY want me to have a baseline – she found out WHY you cannot trust axillary temps in this kid. She was actually 102. I had to bite my tongue REALLY hard to keep it from sassifying “told you so!” Needless to say, that nurse, nor the doctor who I had such a problem with last week, set foot in our room again while I was there. Apparently the minute I stepped out of the unit to take Karissa to an appointment, the doctor came scurrying in to give Ben some info, but has not been seen or heard from again. Which is fine considering I probably have more info about what is going on with Kendall than she does.  I don’t really take pride in having pissed her off so badly. But I DO take pride in the fact that I know for a fact that I am Kendall’s best advocate.

As to why she isn’t at milwaukee this time – we didn’t really have a choice! she was admitted so fast from the ER that we never even discussed transfer. There is a plan in place with both milwaukee and Edwards that should she turn septic (have her organs start shutting down basically), she will be transferred immediately to milwaukee. I do think they have pretty good overall control of the situation at Edwards. The problem is – we don’t quite know WHAT the situation is. We believe it is highly likely that she has a fungal infection somewhere – her line is the most suspect at the moment because her urine looks SO much better than last week. There is talk that she could have a “fungal ball” hidden somewhere in some organ or vein (given her history of fungal blood infections, it’s not a far-fetched idea). Her urine bug from last week  could have “converted” (basically mutated). We knew it was at risk of doing that last week. Basically – we have to wait for her blood and urine to finish growing in their little petri dishes in the lab to give up their secrets. This could take one day, it could take up to five if it is truly fungal. Considering that she was on IV antibiotics when she spiked – it could have suppressed the bugs to a degree that they might not show up on a culture. It’s a guessing game at this point. And they are guessing it will respond to one of the four meds she is getting via IV infusions now.

i think they are guessing right. Her fever has not returned to that high degree again, and is staying between 100-102. She gets another dose of something every few hours so it never really gets high. And as long as it stays down, she looks improved. She wants to be awake and watching movies and playing with little toys in her bed. This is not how she typically reacts to fungal infections – so i am kind of stumped. But she’s also an amazing little fighter. her overwhelming drive in life is to be normal – to play, laugh, walk around like she owns the hospital. Tonight before I left to come home to get the other girls ready for their first day of school – she curled up into me and whispered “mommy i don’t feel very good”….Like it was some big secret. My poor baby girl. She really doesn’t feel good – but she’ll never let you know that. I hope we are fighting the right battle. i hope we figure it out soon so she can come home when we ALL feel comfortable with that. I hope we can get the right meds figured out so that we can finish treating “whatever this is” in the comfort of our own home with normal sized toilets and real toilet paper.

I have too much other stuff to be planning. Like how I’m going to clone myself so I can be at the hospital, AND getting the girls on the bus to school on Friday morning. Both Ben and my dad (my two “backup me’s”) are going to be out of town, and i still haven’t quite gotten the logistics down between school pickup tomorrow afternoon, school time on friday morning, school time friday at noon (for kaylen), school pick up on friday afternoon…where and how everyone is sleeping….

my head hurts. I know it will work out somehow. Everything always does.

So much on my heart and mind tonite. But I’m pretty sure i’ll sleep pretty good.

Thanks for checking on us – thanks for your prayers. And if you’re still up for helping – let me know. I have a list almost a mile long. Well, once I get it out of my head and onto paper it will be…

 

Peace out party people.

 

terra.

I know a lot of stuff.

Really, I do. I’m not trying to be braggy. I just know a lot of stuff. I also know that there’s PLENTY that I don’t know. But when it comes to my baby girl – TRUST ME that I know her better than any person on this planet. I don’t know why I continue to let myself doubt that fact. Why I continue to try to be calmed down by well-meaning medical professionals who tell me that “everything’s fine, that’s normal, it will be alright within a day or two”. I think because most of the time, I really really really want to believe that. I’ve wanted to believe it since that crazy-accented doctor told me almost four years ago in the NICU – “one of these days her body will just wake up and she will be totally fine.”

IMG_4112 Except that’s just not how Kendall works. She rolls to the beat of her own drum. And that drumbeat does not include “being totally fine”,thankyouverymuch. Don’t get me wrong – she has plenty of times where she “looks good”. Where things are “as good as they get”, and we all breathe a little easier.

But when something is up? you had better believe that i am the jeopardy CHAMPION of all questions and answers in the Kendall category.

For the past week or so of Kendall’s “recovery” from surgery, I’ve had this unable-to-shake-it feeling that things were just very off.  I couldn’t even really put my own finger on it – but I knew that her pain should not be as out of control as it was, that she should be a lot more “bouncy-backy” than she was being, that something was just not going right. Her nurse tried telling me she needed more activity (and while I agreed with that to a point, it just kept seeming like it was making her go backwards the more we were trying to play physical therapist). Friends tried telling me that recovery was just tough sometimes. The internet gave out its typical false sense of hope that things were just taking on the longer end of the scale of normal. But none of this made ME feel better, and it certainly wasn’t helping Kendall feel any better.

As per our discharge/post-op plan, we removed the Foley catheter (a large sized plastic tube that stayed anchored into Kendall’s bladder and led out through her urethra to drain into a large plastic bag) on Friday morning. It was everyone’s hope that getting that tube out would “cure” her pain and behavior issues, and life would start returning to normal within that very hour. And I will concede, that for maybe a couple of hours, things were “ok”. She definitely seemed to WANT to feel better, and tried playing more with her sisters, but still kept having these weird “episodes” (probably an autonomic response to the pain/infection that was trying to build in her body, but I say that now only having the info I have. Over the weekend, I had No idea what was going on with her.) Once that catheter was removed, we were supposed to uncap the more “permanent” tube that was surgically placed into the tunnel created by the uro-surgeon, and urine was supposed to begin free-flowing through that tube into a second diaper. which it did.

Ben and I played Macguyver that nite to try to find a way to hook that crazy tube end up to any of the drainage devices we were sent home with. Nothing matched. It was like having a flat-head screw, and the only screwdrivers we had were random sized Phillips-heads. Super frustrating. But never fear. My husband has this uncanny superpower whereby he can make ANYTHING fit into ANY other container. We went to bed, she drained into the bag, we went about our Saturday having some fun time with the older girls. (Incidentally, we took them to see Brave. Which made me cry. Because the bravest person i know is Kendall, and she wasn’t with us. Plus its a good movie which i think makes everyone who sees it cry. but that’s another post for another day.) Anywhooo…. we came home to a newly broken permanent pee tube. The tip had broken clean off. Which might not seem like its a big deal, but the crazy concoction of tubery that had been placed into our child was like nothing that anyone had ever seen before (we still don’t know what kind of tube it actually is – but we believe it is something they would use on a preemie in the NICU. The reasons behind WHY the surgeon used this tube make sense – but are frustrating in retrospect.) Anyways – Saturday overnite, the urine was still running pretty good but she did not sleep well and required a lot of pain meds, and by Sunday afternoon, it was obvious that her discomfort was building again. And quickly. And to such a degree that we were having a VERY hard time staying on top of it. Monday morning after a rough nite, I called the surgeon’s office again to explain that we were having a massive decrease in urination, and that it did not appear that she was peeing through her urethra at all (peeing only through this surgically implanted preemie tube. You cannot possibly imagine the intense pressure trying to build up behind this teeny tiny tube. Kind of like the pressure of I-55 traffic at 4 pm going down to one lane.)

The response from their office was that we needed to check her urine for a possible infection – but that we were very likely to “always” get a positive urine culture because of the plastic in her bladder. (i’m really not quite sure what this little side lecture had to do with anything, because I was calling to request pain control, not a microbiology lesson, but whatevs.) Our awesome lab nurse came out to get a quick sample (because in theory, with an open draining tube directly to the bladder, we should have been able to just hold a sterile cup under the tube and git R done.) Except this is Kendall we’re talking about. That hour that three of us spent cajoling, getting literally punched and kicked, holding down a child acting like she was possessed by a very angry demon – it was brutal. All three of us looked at each other after it was deemed that we had “mostly enough” for the lab to run the tests and were like – who’s buying drinks??? It was horrible. And we all knew that something was most definitely not right. Through Kendall’s diaper, you could see that the very small amount of concentrated urine she was peeing was mostly blood. It was heartbreaking. By Monday afternoon, after some very terse phone calls between our lab nurse, the urology nurse, myself, and our home nurse – it was decided that kendall needed to go to the ER.

Once at the ER we were told that the sample we had worked SO hard for – was lost in transit. The ER doctor performed a minor surgical miracle and was able to thread an angiocath (a smaller IV needle) into the broken tip of her bladder tube, and we were able to get it somewhat draining again (thereby relieving some of the pain and pressure that had been building up for a few days.) in order to perform this procedure, they had to give her some “Versed” – which is this super awesome concoction of happy juice that they give to little kids before they take them back to the operating room (it has other uses, but that’s mostly what it’s used for on a more common basis). If you’ve never had the privilege of seeing your child hopped up on happy juice, you’re missing out on some prime blackmail material! Kendall has unfortunately had more than her fair share of Versed in her life, so we knew that the one dose we were giving her would last for about ten minutes – but we thought it would be enough. It was SO AWESOME to see my happy baby girl again for those ten minutes. But it broke my heart a little too, realizing it had been so long since I’ve seen her. (For those who can’t read my mind since its been so long since i’ve updated, Kendall has been in a lot of pain/having issues for 2-3 weeks BEFORE the surgery date. So it’s been a very very very long month for her of dealing with all of this!)

Monday night was one of the worst nights we’ve had in a long time – and I was in her room literally every hour, dosing her with FAR more ibuprofen and tylenol than was healthy, but it was all I had. it was so heartbreaking to have her in so much pain, and have NO way to help that. I just laid on her bed next to her and prayed for Jesus to be with her, to give her pain to me, to bring her rest and peace. And sometimes I didn’t even have words to pray, and i just cried with her. She finally dozed off around 3 am, and slept for about two hours before it started up again. First thing Tuesday morning, her nurse and I hit the phones again to everyone. Except by that time they were calling us. The urine from Monday HAD been dropped off, and it was not looking good. We knew she had an infection, and the only question was which IV antibiotics were we going to order?

Sorry for all this info – this is going to be an EPICALLY long blog post. But we basically get all the TPN/fluids and any medications Kendall needs in IV form from our awesome awesome awesome home health pharmacy, ThriveRx. They are based in Ohio. We live in Illinois. if you’re wondering how this works, i’ll just say – the miracle of Fedex. Every Thursday morning, we get two huge boxes (and more icepacks than I know what to do with) delivered to our house. This works smoothly most weeks, until Kendall needs antibiotics. But even so – they do an AMAZING job of mixing them right up once they get doctors orders, and sending them out via courier. A person literally drives them – no matter what time of day or nite – from Ohio to our front door. So we were playing the waiting game on Tuesday to see what we were going to start, or if we were going to wait til Wednesday to order them and have us get a loading dose of a broad spectrum antibiotic at the local hospital. Or any of a number of other random plans that the 2802 people involved in making decisions were coming up with. Finally her urologist called me himself, and in his awesomely gentle, kind-hearted way, asked me what we should do. No pretenses, no acting like he’s seen it all and done it all and knows it all – just a doctor talking to a mom about her sick baby. I told him I couldn’t even make the call. I had no idea what to do, I just knew that we needed rest, and help, and relief from the massive amounts of pain racking her little body.

so he said he would call the local hospital, and give them detailed instructions, and come up with a plan of care, and a plan to transfer if things got crazy. And so we came in.

I have so much i could write about my hesitancy to come here – to a place that traditionally has been of ZERO help to kendall. To a place that didn’t know her, didn’t know me, and didn’t know all that stuff that i know about kendall. But that’s another post too. for a different day than the other post i already said was for another day. Because on THIS day, it was the right call. They gave her the relief she needed via some anti-anxiety and pain relief medication. They fixed the tube (again). They were by some miracle able to re-insert the foley tube and let her bladder start draining again in a much more relieving way.

We found out this morning that she is growing a pretty nasty bug. It apparently likes to pretend like it’s playing nice and dying off due to the antibiotics, and then overnite, it mutates into some crazy mutant super bug that won’t die for anything. This doesn’t ALWAYS happen, but it can happen with some regularity. This kind of scares me. But I’m going to choose courage instead of fear right now. Just when we thought we had a plan for THAT, we got the super fun news that her blood culture had also come back positive for growth. With a separate but equally nasty bug. More fear trying to creep in. She got THIS SICK – all without a single fever. That could mean any number of things – or it could mean we just got really really really lucky and caught it super early. I think it’s somewhere in the middle of the spectrum of scary – not scary. I think her autonomic system is just so overwhelmed by this crazy summer, and by the insane stress on her body the past few weeks – that it literally doesn’t know which end is up, and which end is supposed to burn a fever and which end is supposed to cool itself off.

The bottom line is that we aren’t getting out of here anytime soon. well, soon by my standards. which would have been about 12 hours ago. There are a lot of balls up in the air right now, but I do believe that the team here is capable of juggling them all. The most important thing is that she IS getting some antibiotics, and they ARE helping relieve her pain and anxiety. There are no cocky third year residents telling me how to care for my child, and no overworked nurses taking care of far more patients with multiple needs than they should be. Kendall is in what is essentially the ICU here at our local hospital, and is receiving a LOT of attention and care. She is finally finally finally getting SLEEP. Relief. Rest. Restoration. After almost five nights of next to no sleep due to the insane amounts of pain and discomfort from waging such a bad battle in her body – her body is resting so well that we are having to lower all the alarm limits. Her heartrate is low, her o2 sats are low(er) than normal, her blood pressure is almost half of what it was last nite. Normally this would be concerning – and it still may become concerning, but for now, we know her body is just chilling itself out.  And we’re going to let it.

Tomorrow we will hopefully have more information on what we’re fighting, and how we’re going toIMG_4113 fight it. Hopefully we will not be needing to dose her with narcotics every two to three hours. Hopefully her body continues to fight as well as it has up until this point. She’s very tired. I hope that the things that I know about Kendall don’t include what my fear is tonight. That resting this deeply means the “bad sickness” hits. i hope that’s just my own tiredness talking, or the fear taking hold in a place that I am firmly trying to dislodge it from. Hopefully i am wrong on this point. I do pray that this rest lasts all night long though, and is the start of the healing her body so desperately needs.

sorry this is uber long and does not include pretty pictures. The pictures I have on my phone right now are mostly of surgical sites to send to doctors. Not pretty. i’ll hopefully have some good ones tomorrow. Or maybe the day after that.

Thank you so much for your prayers, and comments, and words of encouragement. They all do mean so much.

And now i think i am going to crash myself. it’s been a long month.

 

love,

 

terra.

(ok i lied on the picture thing – i found a few from early July during a fun family trip to Costco!)

Surgery (take 17)

Ok so maybe it’s not her 17th. It could be a few more, could be a few less. I stopped counting last year. Either way – she’s in surgery now. and I realize I never got to do the more explanatory blog post I had planned on…so hopefully I can both update about surgery AND explain how we got here all in one concise post. (Me? Concise? I know….but miracles do happen every day. Keep your fingers crossed!)

Anyways –

Kendall is back in surgery right now to have a “continent vesicostomy” created. You can try to google it – I sure have – and you’ll find a lot of stuff about “vesicostomies” and “mitrofanoffs” and then a whole bunch of random medical journal articles, and maybe even a few cool pics. But nothing that really explains well what SHE is having done.

First – why is she having this done? We aren’t exactly sure WHAT caused it, (be that “it’s just mito”, or that her usual bladder issues have just all of a sudden become more prominent, or if something actually changed in her autonomic system) – but basically, the complex set of nerve firings that occur when you feel like your bladder is full and you seek an appropriate place to empty it have stopped working with any kind of reliability in Kendall. This usually results in her having episodes of painful “urinary retention” (holding it, and holding it and holding it more), and being literally unable to release the muscles and urinate because the nerves aren’t talking very well with her brain. She has had a few ultrasounds to confirm what is going on – and the results shocked even her urologist (urinary system doctor). She essentially retains as much as a fully grown adult male who hasn’t emptied in 5-6 hours. We have NO idea how she has not literally exploded her bladder or her ureters (what connect your kidneys to your bladder), and thus her doctor (BACK IN MAY) suggested we do this surgery rather quickly. On top of the horrific pain it causes, when we attempt to catheterize her to release the pressure, it is tramautic at best. And for those medical mama’s out there who know how tramautic a cath can be for some kids, when i say it is horrific for kendall, I cannot adequately describe the horror of trying to cath her. I have pinned my baby down for some pretty crappy painful things that freak her out. Pinning her down so 2-3 other adults can attempt to stick a stiff plastic tube up her urethra is by far the hardest, most grueling thing I have ever done. I can count on one hand the amount of times this has actually even been successful in 3.5 years. She is just nearly impossible to cath. Her newest nurse got a taste of this the other day when we attempted again to get a urine sample to confirm if Kendall is getting another UTI. This nurse “L” has TONS of years of experience doing this for difficult kids, and even she was near breakdown point, shaking and exhausted and sweating from the effort of trying to hold Kendall still enough to perform this painful procedure. In fact, her very pointed phone call to the urology nurse is probably a large part of why we were able to successfully get a bumped up surgery date.

Anyways – bladder isn’t working, is in danger of doing serious damage, and the usual method for helping (cathing her every few hours) is clearly not going to work/help. That’s WHY she needs the surgery.

Second – what was the big deal about having it done TODAY? Well – originally she was on the schedule for July 9th. The doctor decided to go on vacation that week though, so his scheduler was scrambling to find a different date for us. Nothing was working in June and she couldn’t see August’s schedule at that point, so we tabled it until the first week of July. I heard nothing so I called. Scheduler is now on vacation til July 16th. I called three times that week, and she called back to offer me September 5th as a “squeeze in”. Ok – 7 weeks from now isn’t a “squeeze in”, that’s an “afterthought because someone didn’t keep the ball rolling”. But during this conversation with her, I mentioned that Kendall had been having some more concerning symptoms so we REALLY needed to be diligent with the cancellations list. She transferred me over to the nurse, who suggested the cath for UTI testing that we attempted above – and that our nurse then called about to explain that  cathing wasn’t working. Fast forward then to yesterday morning – Urology nurse returns our nurse’s phone call, goes immediately to get the dr, who gets on the phone with the OR (operating room) and finds us a slot for TODAY for surgery.  I feel like I have a pretty wide berth for what I allow Kendall to tolerate painwise. I know that on any given day she has some degree of pain somewhere – and she has learned to live with it and deal with it in her own way. Sometimes that is by being grumpy, other times its by playing alone, other times its by sleeping the day away. But when she is unable to cope with the pain, it breaks my heart.

And she was at that point. HAD been at that point for over a week. Walking around hunched over like a little old lady, running into walls, unable to stay on her own two feet for more than a few steps, and then just moaning like a woman in labor moans when the pain overtakes her. When she gets like that it is so hard to see her, hard for ME to watch her, hard for the girls to see her like that – it’s just a very tough situation. So I was SO relieved that this nurse was truly hearing my concern – that i wasn’t just exaggerating a tolerable level of pain, but that it was truly no way for Kendall to have to live. And while i literally felt my heart jump into my throat at the suggestion of surgery less than 24 hours away – I knew we had to do it. For her.

WHAT are they doing? A continent vesicostomy is basically a way of creating a “tunnel” of skin through her abdomen wall (below her navel) through which urine can empty or through which a catheter can be passed to drain her bladder as needed. Most regular vesicostomy’s are “incontinent” (I guess? I am piecing all this together from what her doctor, the uro nurse, and the internets have told me, along with a few momma’s who have been there, done that). A mitrofanoff procedure uses the appendix as the “tunnel” into the bladder. And what Kendall’s dr is doing is keeping her appendix intact so that it can be used for a different procedure later down the road (as she will likely need it at some point) where it is a tunnel to flush her bowels – and he is “creating” a tunnel with skin and tissue to her bladder. Confused yet? i kind of am too, it’s ok. All I know is that this should relieve a lot of her pain. HOPEFULLY this may even allow us to be able to work on her tube feedings more and work towards getting her off of TPN.  This does not necessarily have to be a permanent procedure. If her bladder can shrink back down to a normal size, and her nerves are able to communicate better with her brain, this tunnel can be closed. She will still be able to urinate normally, but most likely her body will rely on this extra escape route for a while yet.

As to the surgery itself – she will wake up in a lot of pain likely. And that was my biggest fear for her yesterday, what kept me breaking down in tears at random times. Putting her through pain to alleviate pain. It’s a concept that is very hard to wrap your mind around as a mom – whether that’s braces, or stitches, or ear tube surgery, or vesicostomy surgery. It all hurts. It’s never easy to accept. It sucks hard signing your name to that consent form allowing them to pierce more holes in your baby’s already scar-filled belly. But you all have been awesome. I can tell you’re praying. Because i did not have to fight one bit for my child today. I normally have to come in here with steel=toed boots on, ready to kick ass and take names and go “7 kinds of crazy” on anyone who won’t listen. But the team Kendall was blessed with today – they are all angels. Her surgery nurse is a gentle soul who instinctively knew how to navigate between nervous parents and zealous doctors. Her anesthesia doctor – Godsend. She looks like “Anesthesiologist Barbie meets Supermodel Barbie” and she has a pair of steel toed boots herself. She jumped right into the center of the group of doctors going over Kendall’s care in our room and said – “here’s the plan. We’re druggin her up THROUGH surgery, giving her a PCA post surgery, and we’re keeping her in ICU til mom says she is 100% pain free.”  My jaw hit the floor. 

And i’m paraphrasing it a bit. But she was amazing. We have a great team of doctors who care for Kendall up here – but they tend to sometimes get distracted by the fact that in spite of whatever is going – this kid is ALWAYS smiling. They don’t see that she smiles through her pain. But this doc – somehow she did. And the other doctors immediately hopped on board with this plan. I normally have to BEG to get oral ibuprofen for this kid. “because she’s not acting like she’s in pain”. Right – she just whipped the tv remote at my head and is screaming her head off cause she thinks that’s fun??? Anyways – her needs will be MORE than met after this procedure. We are hopeful that this plan may even be a little “overkill” – but because she will be extremely high needs post procedure, the ICU (intensive care unit) is the best place for her to be. And because she will be in there, she can have a “PCA” – patient controlled analgesia – basically, she gets good drugs on a very consistent schedule. If you’ve ever had the joy of sitting on a regular floor with a kid in pain and waited 3 hours for a nurse to track down the three doctors whose signature it requires to get one dose of tylenol – like the tylenol you give your kid at home from the walgreens – you will understand how miraculous this is. One of my biggest fears – already in the hands of my loving God. He knew EONS ago – that today would already be taken care of. Why do I worry?

So that’s what I know right now.

She is still in surgery. We should be hearing any minute now an update as we are approaching the 2 hour mark. I will update later tonite.

Thank you for your prayers. They are definitely felt.

love you all –

 

T.

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