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!)
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 –