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.)

I know a lot of stuff.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

love,

 

terra.

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

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 –

 

T-crest.

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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