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

Logistics.

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

My brain is consumed with logistics right now.

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

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

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

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

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

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

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

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

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

My House

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

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

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

Party Stuff

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

Balloons – same as above!

Snack foods/2Liters of sprite/lemonade/whatever

 

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

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

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

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

Keep on hoping!

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

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

Have a beautiful Friday folks!

Terra.

{Be} Complex.

(are any of you wondering how long i’ll keep up with the “be” titles? Cause i am. wondering that about myself i mean. i give it a week tops. over/under 1.)

So anyways – todays post is titled that simply because that is who we were seeing today at CHW. Special needs/complex care. Typically the level of “help” we get from this team is logistic at best (meaning they help make sure that all the other doctors on kendall’s team don’t come up with conflicting ideas – like when GI wants to start overgrowth antibiotics and ID tells me that that will mutate her gut flora – complex care helps mediate between the ideas and asks us what WE want to do for kendall and helps us make that decision.) The doctor who we see has been a bit “overworked” and as such has not been the best advocate for Kendall (in my opinion) at times – but today he definitely redeemed himself. Well, at least a little bit.

We spent a lot of the appointment kind of covering old ground (part of his lack of input on kendall’s case the past year was because he was the ONLY doctor in the program, and as such was just too darn busy to remember her/us most of the time I think!) – like exactly which of her meds/diagnoses are still relevant. or the fact that his big brainstorm of the day was that she “seems to have a lot of dysautonomia”. my jaw hit the floor. I wanted to yell “welcome back to the page the rest of us have been on for a few years! how was your coma!?!?!” But I refrained. (because i was trying to be CALM, remember?) Anyways. He may have meant it in more of a diagnostic/genetic way vs the typical way its used as a catchall diagnosis for “all the crazy random crap that kendall’s body pulls which keeps us on our toes”. But he wants to do some more digging/theorizing/testing on that front. And more than likely start some medications to help get some of her “issues” under control. We have tried to hold out on starting meds that try to “control” systems that are just wacky without rhyme or reason, because we don’t want to get into a “chasing our tails” type of pattern.

I’ll try to explain that a little more.  For instance, Kendall’s heartrates will often be very erratic.  She will bounce literally all over the map all nite long – and yet be perfectly “healthy”. Her system just doesn’t have good regulatory mechanisms because the energy required to keep things “stable” is often being diverted elsewhere. The heartrates which used to scare us we now just watch with one eyebrow cocked, waiting to see if it turns into a “real” problem, or if its just a “crazy nite”. For the most part her heart itself is “ok”, so we have come to an understanding that the issues we see are just an inability of her autonomic system to regulate itself, aka “dysautonomia”. (and for those whose children suffer from truly debilitating dysautonomia, please know that I am not trying to trivialize this diagnosis, i’m simply trying to break it down to simplistic terms!) there are some VERY severe forms of dysautonomia, and there are also some very mild forms of it. Kendall probably falls somewhere in the middle of the spectrum, and some days i’d say more towards the severe side with some of the reactions we have seen to seemingly innocuous situations. The problem with medicating some of the issues that dysautonomia affects is that by, say, trying to control her heartrate fluctuations, we could bottom out her blood pressure. By trying to regulate her temperature control center, we could throw her thyroid out of whack.

This is part of the frustrating cycle that so many mito families find themselves in. Where is the line at which you treat issues and risk creating new ones? And of course, i’m not saying that starting kendall on a new medication WOULD create more issues – but for us, it’s just been one thing we could do, or attempt to control rather – limiting her medications. I KNOW that so many people probably use “autonomic regulators” with very few bad side effects, and in fact most kiddos i know of who take them actually have great results from them. But – its still not something to just jump into. Kendall has been referred to a couple different dysautonomia centers, and meds have been brought up a few times – but it just hasn’t seemed like the right choice at the time for plethora reasons.

A new dysautonomia expert was recently hired by milwaukee that dr G (complex care) wants kendall to be seen by, so we will wait to see what she has to say before really jumping into things. I am excited by the fact that she might be able to come up with some good ideas to help get control of some of the “loose ends” we deal with in regard to Kendall’s “healthy days”.  None of this info about “dysautonomia” is new really – it’s more my shock that THIS doctor, who tends to blow off ALL of our concerns about kendall’s issues, finally saw today how even on a GREAT DAY, we still have a LOT to deal with, and a lot of moving parts required to KEEP her looking so great.

Other things that came out of this visit is that we will be getting a few things switched over to IV meds in order to alleviate some of her gut pain ( having to push in a large quantity of meds all at once into her J-tube causes a LOT of issues for her lately – we used to be able to get her meds in no problem. I’m still hopeful that its just still the aftereffects of whatever crazy virus Kaylen is fighting, but i am relieved that dr G realized on his own that getting some of the “easy” ones into her TPN would be a big load off! And the last thing is that we definitely need a LOT of followup on the pee issues/lack thereof. i had hoped we could just wave some magic wand at her bladder and there would be a good quick easy fix. No such luck. We will at least be hopefully avoiding further ER trips for a simple cath, but this will involve getting home cath trained and starting on the intermittent cath schedule that the urologist suggested last year. And we have to follow up with him sooner than later. And she will need MORE horrific testing to see where the problem is. Insert a swear word here. I still hold out hope that both her bladder AND her gut will just wake up on their own before i have to actually act on any of this stuff.

I’m totally losing my train of thought here so i’ll wrap it up.

Overall – it was a good visit. We are moving forward, not conceding anything just yet, still hopeful for many many many more great days for KQ! And yes we did survive having all four girls plus me plus the doctor plus our nurse practitioner in one teeny exam room for an hour and a half. Barely.  momma needs a xanax now.

Happy January 3rd! Hope everyone is staying warm!

T-crest.

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