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

Cinderella.

I am not real sure where or when or how the sudden obsession with cinderella started.

Probably the way most obsessions with princesses that little girls have start. Slowly, and then gaining speed til they are near full=on panic mode when said obsessed item is not readily available. Don’t get me wrong – Minnie Mouse, and the entire “Hot-Gog” (Mickey Mouse Clubhouse) gang, are still crowd faves around Kendall’s world. But all of a sudden, she wants to watch Cinderella, pick Cinderella stickers out of the box, read the Cinderella story out of the Disney Story Treasury. (and just to drive me even MORE insane, the digital copy of Cinderella will not be available until October. That’s fun trying to explain to a frantic 3 year old who just wants Cinderella on the crack-pad NOWWWWWW. I know. She’s spoiled. I’m working on it.)

I digress.

One night after her surgery, when we were trying to pinpoint the pain, and somehow figure out how to differentiate “it hurts everywhere” (sounds a lot like “eeeehhhhhhhhh-ahhhhhhhhhhhhhhhh” very loud and piercingly shrill) from “this is what bothers me”, I started talking to her about the princesses,IMG_4278 and about how she had the princesses with her. So we started naming tubies and attachments. Somehow, the vesicostomy tube became Cinderella (and the foley cath was Snow White) (also her broviac is now bibbidi-bobbido-boo). So whenever she would have one of her pain episodes, we would try to figure out if it was Cinderella or Snow White that was causing more pain. It’s kind of still stuck around, even though they pulled “cinderella” out the other day at her post-op followup. We still have to put a new cinderella in throughout the day/nite, so I guess it’s good that she still refers to it as something.

Anyways – my point in all of this was just to update how she is doing after the surgery – with Cinderella. And I am happy to report that finally, finally, finally – things are improving. She still has a LOT of pain, mostly at night, if she’s overdone it during the day. Trying to figure out how to best help her bladder drain and empty all night long without the foley (more permanent indwelling type of catheter she used to have in her urethra) has been challenging. Last night was very tough. Today was better. She was able to go to school last week, and that is a huge blessing to see her recovered enough for that! For those wondering, she goes on Tues/Thurs for 2.5 hours. She takes the bus to school, so it’s another hour total that she is gone. When she has her next IEP, this time may be increased depending on her endurance, but even this amount usually zaps the life out of her, so we’ll see! With a November birthday, she gets another whole year of preschool, so we don’t need to push her by any means!

Her surgeon/urologist was very happy with how her tunnel (the surgery site) looks and is healing, and cathing it is very  very easy. If you have never had to catheterize your child, let me try to explain the process to you. The first way is to do it through the urethra. This is as fun and painful as you are imagining. I wrote in an earlier post about how it is pretty much impossible to do to Kendall unless she is under general anesthesia. So now we “cath” her through this tunnel in her abdomen. Literally you just lube up a small catheter (it looks like a clear coffee stirrer), and slideIMG_4326 it in sideways. Urine starts spurting out the other end so you better have a diaper/cup/plastic container of some sort handy – and away we go. The hope is that at some point she will tolerate not being constantly cathed – but for the next few months she has that catheter in pretty much all day long. This is partly to continue letting the stoma form/heal (kind of like how you have to wear earrings all the time for a few months after you get them pierced), and partly because her bladder is still so traumatized from the surgery/infections that she literally cannot handle the pressure of “retaining” urine at all. She has still not done a whole lot of urinating through her urethra and it is mostly coming out of the “Cinderella” tube (we double diaper her, so it’s pretty easy to tell). We have had a few trial times without a tubie in Cinderella, and they do not end well or last more than a few minutes, so we’ll work up to more time in the next few weeks.

Overall, things are moving in the right direction! I am so relieved to feel like we can FINALLY stop worrying over her every minute of every day. It’s been a very long month. Today is exactly one month post-op.

As to Karissa’s MRI for those who have asked – the MRI itself went very smoothly. Due to the fact that she had to remain face-down for an hour, and the cyst/tumor we are looking at is very small, so any slight movement could make the images look bigger/smaller than in actuality – she did undergo general anesthesia. I was very impressed with the anesthesiologist down at Children’s Chicago, and he complimented me on being able to be so clear and concise with the information that was actually helpful to him. I wasn’t super impressed with IMG_4321 the PACU care, in that Karissa was literally setting off every alarm she was hooked up to and the nurse was just anxious to go get her lunch so she just unhooked her from the monitors instead of manually checking or further monitoring. (It was just things like a crazy blood pressure, high respiratory rate, spiking then dipping heartrate – all things that I knew were cause of the GA, but still, I would have rather had another few minutes of reassurance that she was indeed stabilizing.) At any rate, I somehow got this floppy sack of potatoes carried the two blocks through the city to the parking garage, propped her up in the lobby, validated the parking ticket, and turned around JUST in time to aim Karissa’s spewing of stomach contents into the trashcan and NOT on the nice man’s fresh cast that was behind us in line. Pretty sure at least 40 other people in the lobby decided to forego their lunches due to the show….

Anyhoo – we will find out the results of that MRI in a followup appointment with Karissa’s neurosurgeon in early September. Or maybe its the 21st. I’m not sure. Either way – its not THIS WEEK and therefore it’s not currently occupying precious real estate in my brain. Also, it is weird to say that your 8 year old has a neurosurgeon. She also has a neuropsychologist. Who we WILL be meeting with this week for the results of the testing Karissa has been doing all summer. Due to the fact that our insurance has been sending us pamphlets of info about “how to deal with your child’s ADHD diagnosis”, I’m thinking we are headed for news that she has something like ADHD, but whatevs. We’ll deal with that info if/when it comes. She LOVES her teacher, cries every nite from the homework, and in general still spends a great deal of time gathering clouds, but she is still my baby boogerton.

I mean, gosh dang. When did these kids grow UP??? I can hardly handle it some days. Ok I can. I love them – i loved the baby stage – but I also LOVE seeing the little people they are all becoming. Ok I have derailed any sense of purpose or direction this blog post had…i think its cause we need to eat. Time to go rustle up some grub for the crazies running this place…

Thanks for checking in on us!

Terra

(seriously – it would make my weekend complete if I could get 300 facebook fans for the Terra Talking page. Click on the “f” icon up there at the top of the page  – it’s bright pink. Like it. Do it. Thank you. Love you.)

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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