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!




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

My brain is consumed with logistics right now.

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

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

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

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

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

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

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

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

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

My House

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

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

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

Party Stuff

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

Balloons – same as above!

Snack foods/2Liters of sprite/lemonade/whatever


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

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

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

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

Keep on hoping!

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

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

Have a beautiful Friday folks!


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~



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.





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

Movin’ on up.

See what I did there??? With the title? It’s kind of a play on words. Cause, you know, Sherman Helmsley passing away and the Jeffersons theme song, and also cause we are hoping to “move on up” to a regular floor (not the PICU) and Kendall’s recovery is moving up…. you get it? no? you don’t? just me? {nervous laughter}…..IMG_4114

ok nevermind.

Anyways –

We should be getting transferred up to the floor (as opposed to the “unit”, PICU) relatively soon. Kendall is “stable and controlled” with regard to her issues and pain – but the team is still treading lightly, knowing that she is still needing a lot of medicinal support to keep her that way. She still has the PCA (morphine pump) turned on – but we are trying to add in more oral pain meds (meds into her tube – because that’s how we give pain meds at home) and see if we can wean down the use of that pump.

As a quick catch up for those of you who did not see all the facebook posts last nite – the surgery itself went great, he was successful at creating a tunnel for her bladder and preserving blood supply to the entire site, and feels confident that this will help to greatly alleviate her pain from the retention she was having. It will be about a month of recovery with the drains and extra skin buttons in place and for the scars to all heal over – but after that time she should be up and running like usual! So praise God for that!

After we came up to the PICU, she was still very conked out, until we tried to adjust all of her tubes and wires. She was absolutely through the roof with pain, and seeing how horrid her surgical site looked, I had no doubt that it was extremely painful for her to be moved a millimeter. They were SO awesomely responsive here in the PICU IMG_4111 though – ordering extra meds, pushing them quickly, getting her comfortable again no matter what. And that’s not to say that we don’t get good care up on our regular floor, but i was AMAZED at the level of care and immediate response that came from the PICU team. Good thing too since about an hour after getting her settled from that first event, she started dropping her blood pressure, violently vomiting (which is quite a sight to see from a kid who has her stomach wrapped around her esophagus to prevent such a thing from happening), and in general having a really tough go at things. After one of these episodes we noticed that she was bleeding a lot from around one of the incisions, but the surgeon packed more gauze around it and proclaimed it still good. Still not a comforting site for a momma though. Finally at around 2 we were able to get back on top of the pain and vomiting and keep her blood pressure up at an acceptable level – and I crashed. I had planned on getting up every hour to check her and press her pain pump again – but the nurse set it to a bigger bolus and she took care of it til the morning team came on duty and i actually got 4 straight hours of SLEEP. which I NEVER get in the hospital because on the floor, the nurses are usually busy with 5-6 other patients all nite and I end up handling most of Kendall’s nite time care. It was such a nice thing to have it all under control all night long! All of the nurses here keep saying how shocked they are that the floor never sends her to them (on the unit) because her needs are pretty extensive for what they can handle – and I tell them that its because I end up doing most of it! (or ben when he has hospital duty! or my aunt who got roped into spending the nite one time!)

But i’ll tell you something – you ever need a hefty dose of perspective? come hang out in a Peds ICU sometime. It has given even ME some healthy perspective about Kendall’s care/situation. I am anxious to get out of this unit and onto a floor because I understand that the really sick kids are here on this unit. I want to get back to the regular sick kids place. where they make you wait for hours for a single dose of tylenol and no one ever has the right supplies your kid needs for her central line. where alarms aren’t flashing on 4 monitors for other kids who are coding in the room next to yours. where there aren’t machines covering every square inch of space in the little rooms. Where they are able to hide medical equipment in nice wood veneer cabinets and not have it looming large, handy and QUICKLY ACCESSIBLE by your child’s bedside in case the unthinkable goes down. It has been wonderful to have the support that Kendall needed when she needed it – but I am ready to get back to our little microcosm of “regular sick”.

Kendall is currently trying to take a nap – but its hard when there’s a TV screen that is movable to being literally 6 inches away from your face with Cinderella playing on it.  (if you look in the top pic, you’ll see the tv screen on a swivel arm in the top left corner of the pic – it moves. It is currently VERY close to her head.) I’m glad to see some of her personality peeking through the pain. We were able to get the bed a little elevated and give her some meds through her J-tube. These are all encouraging signs that she is moving in the right direction in her typical little soldier pressing forward way. There is some very hush-hush murmurs about her possibly being able to get out tomorrow nite IF we can keep her pain under control without the morphine pump. If not tomorrow then Saturday should be the day. It is going to be a crazy week at home. We are hopefully going to be very covered with nursing help as she will still have a lot of tubes and drains and lines coming out of both God-placed and man-made holes in her body.

FOR THOSE WHO HAVE ASKED: (you know I hate feeling like i’m asking for help ever…) But if you have asked – up here in milwaukee, I am craving a few specific things that I’m not even sure they have up here. I know some have asked on FB, some via text, some I don’t even remember! Do they have a buffalo wild wings up here? Chick Fil A yet? If you were one of the ones who volunteered to bring me food stuffs – text me please! 630.803.3189 (and if that doesn’t apply to you, then please don’t worry about it!) Our visitors are restricted while we are on the unit, but once we are up to the floor, I think we can open visitors back up (family that claims me as a relative –this means YOU!!!)

Once we come home – oh who knows? I do know that one thing we will be in need of is DIAPERS. IMG_4116 And I know that this seems odd – but once her drains come out, she will be leaking into diapers. Any size, any kind. With all of these medicaid changes, she no longer qualifies for medical diapers until she turns 4. And lemme tell you – this kid goes through a LOT of diapers. I’ll spare you details – but with a non functional bladder and a non functional GI tract – it makes for some crazy messes. I’m not asking you to go buy us diapers – I’m only saying if you happen to be able to potty train your kid and still have like half a pack leftover, or if you go up to the next size and have some leftovers – we will gladly take any and all donations for the next couple of weeks! Aside from that I can’t think of much right now. You’re all so great all the time – I just value your friendship and support and random crazy texts!

Ok i’m starting to get one of those “i don’t think i’ve eaten all day” headaches so i’m going to go raid the vending machines.

I’ll try to update the FB page for the blog and/or do a blog update later once we are hopefully moved on up to the floor! I dare you to not have that song get stuck in your head now…

love you all – thank you SO much for the prayers all nite – I am quite sure that is why things calmed down enough for me to get sleep!


peace out party people –



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 –



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