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.”
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 to fight it. Hopefully we will not be needing to dose her with narcotics every two to three hours. Hopefully her body continues to fight as well as it has up until this point. She’s very tired. I hope that the things that I know about Kendall don’t include what my fear is tonight. That resting this deeply means the “bad sickness” hits. i hope that’s just my own tiredness talking, or the fear taking hold in a place that I am firmly trying to dislodge it from. Hopefully i am wrong on this point. I do pray that this rest lasts all night long though, and is the start of the healing her body so desperately needs.
sorry this is uber long and does not include pretty pictures. The pictures I have on my phone right now are mostly of surgical sites to send to doctors. Not pretty. i’ll hopefully have some good ones tomorrow. Or maybe the day after that.
Thank you so much for your prayers, and comments, and words of encouragement. They all do mean so much.
And now i think i am going to crash myself. it’s been a long month.
(ok i lied on the picture thing – i found a few from early July during a fun family trip to Costco!)