I guess first I should update on what was going on LAST week before I talk about what is going on THIS week coming up!
Kendall started having some very potent urine about a week ago. When this happens, I usually “dip it”, meaning I use a urinalysis dipstick that checks to see if there are any markers of infection or other issues causing it to be so off. Typically she will “light up” the areas that indicate a possible UTI, and if she has a fever, we truck off to Dr. Natalie’s for an official dip and cath to send for cultures (where they see what specific bugs are growing in the urine/bladder/kidneys). If she doesn’t have a fever but just seems slightly uncomfortable, we would just double up on her prophylactic (every day) antibiotic for a few days till the bad smell goes away and she seems better. This has happened maybe 4 or 5 times since her last episode of bad pyelonephritis (kidney infection) last March, where she lost all use of her legs for a week because of the high fevers and pain she was in from that infection. It has always worked out thus far.
So last week when she had this horrible smell (of course it started on a day when her nurse wasn’t here to help me confirm that i wasn’t losing my mind), I dipped it, and it came up faintly positive for one of the infection markers (leukocytes), but it also came up positive for protein. Now I’m no urine expert, but I vaguely remember something when i was pregnant about protein in the pee not being a necessarily good thing. But she seems otherwise mostly ok, so I decide we can probably just watch her for the time being (because of course it was a friday. nothing gets done on the weekends from a medical standpoint anyways. usually little things like this are just completely not worth it on a friday.) The weird smell kind of comes and goes and doesn’t have a rhyme or reason that I can see so I just continue to do random dips and get random results. By Wednesday of last week, I walked out of my bedroom and thought that either my cats had decided to mark the entire house, or i was in a weird dream where i was walking in the lemur house at the zoo (for those who haven’t been there, it REEKS like cat pee something fierce.)
I start on a rampage to find the cats, and i realize its coming from kendall’s room, and more specifically, from Kendall, and the large soaking amounts of pee that were all over her bed/floor. (Something about shoveling 750cc IV fluids and 250cc J-tube feeds, roughly 30 oz total, into a kid overnite just overwhelms any kind of diapering system we have thus far been able to come up with!) Anyways, her nurse is FINALLY back from being sick for 5 days, but has bronchitis so she can’t smell a thing, and I am like – are you kidding? I need to open the windows I am gagging so hard from this reek! So we get everything all cleaned up and sorted out again, and this time the dipstick is “lit up like a Christmas tree” – which is code for, everything is positive. Leukos and nitrites (infection markers), protein (+3), urobilinogen (end product of bile), bilirubin (liver byproduct), blood (+4), very alkaline, very dark (almost brownish), and its dilute??? Huh??? (with it being that dark and smelly, it should have been super concentrated, not dilute) – anyways. coupled with the smell and a slight fever, I thought it was time to have it checked out. So we called the nursing agency to see if they could come do the catheterization and drop it off at the lab (vs us having to schlep to the ER or the peds office, which is an hour away, and expose her to everything under the sun). We were able to get the orders for the tests very quickly, but actually getting someone to come out with the proper equipment was a different story. Our nursing agency didn’t have any of the right size cath’s, no one in our area who should have some would sell some to our agency, so we had to try Plan B. Which was going to dr. Natalie’s office. Except that she wasn’t even there, and they only had one nurse and we would have to get there before 3 (it was 2:30 at the time), and really, if kendall is that sick she probably should just go to the ER anyways. So not helpful. If I thought the kid needed the ER, I’d have her at the ER. I just really need her to stop peeing like a male cat and/or a lemur at the zoo exhibit.
by the time we finally DID get a nurse out to the house the next afternoon, it was brutal. I don’t even think i can put the hellishness into words (we tried to cath her three times, I had to lay on her to pin her down that whole time, she was beyond screaming in pain and just grunting with her eyes rolling back in her head by the time we finally called it off). Meanwhile the other three girls became possessed by the teletubbies or something and were BOUNCING off the walls and/or melting into puddles at my feet (as I pin their screaming sister down) because they were all mad at each other or me or something. I was shaking by the end of it. Thankfully, we were able to get a few drops of urine (it was a few mls, but it was what we needed!), get the tests sent to the lab, and our nurse came back at 11 pm to stay the nite with Kendall so that I could actually medicate myself enough to recover from the craziness of the past couple days. Did I mention that she had a really bad stop-breathing episode the nite before? Yeah. It would be super helpful if she could try to keep from becoming a complete hot mess overnite every nite!
the results from that test came back on Friday morning looking “off”, but not indicating that she was in a bad infection (I hope not since she’s on a pretty hefty dose of a gaggily expensive new prophylactic antibiotic specifically meant for UTI’s that our secondary medicaid does NOT pay for). But her doctor wouldn’t accept my offer to send him some of the bedding/diapers we were dealing with so he could tell me that this was all “normal”, so we’ve just tried to keep things moving on our own at home! Pushing some small amounts of extra fluids (just saline) into her IV every once in a while seems to be helping her to dilute her urine even more (meaning the house no longer reeks like the South Africa exhibit), and is keeping her fever under control. She has also developed a little raspy cough and goopy eyes so I am sure she’s just dealing with some virus (probably a touch of what her nurse had last week and I have this week), and that COULD be enough to throw her off metabolically to make her urine reek like so much ammonia and have the other fun metabolites in it. I don’t know. For now she is doing ok at home, so home is where we’ll stay. Because she feels so badly, she is not a fan of all the other interventions that she needs to support her a little better, which just throws her even more out of sorts. (Extra tubing for the saline fluids coming out of a “Y-port” on her IV, nebulizer treatments to help the cough/random not breathing episodes, oxygen, and tylenol suppositories since oral/j-tube tylenol is patchily absorbed). NOT. A. FAN. i tell you. not that I would be either really….but at least she gets to sleep in her own bed and play with her own toys and go to her very first birthday party.
And now we prepare for tomorrow. An appointment that I had hoped we would never have to have, or that we could at least have put off for a few more years. I’ll hopefully have more details after the appointment – but for now, here’s what i know. When Kendall was inpatient a few weeks ago, our attending was one of the head motility doctors at Milwaukee. Motility docs are kind of like “Super GI’s”. Whereas a regular GI doc can deal with anything from constipation to reflux to jaundice (they do a lot of liver stuff too most of them) – a motility doc deals specifically with the movement – motility – of the GI system specifically. We met with a motility doc when we were in Pittsburgh last summer, so its not that we are now being referred over to motility here at CHW that is “upsetting” to me. It’s more the underlying things that aren’t being said that is where my fear lies. This motility doc who was our attending, Dr. S, was mildly horrified when I recounted Kendall’s history from birth, and showed him the pics (that yes I have on my phone!) of her bloody mucousy poop that we have dealt with since she was a baby. Or when we talked about how many times we have dealt with “CIPO-like episodes” at home with little to no direction from GI on how to do it, we’ve just muddled through it on our own. Or a handful of other things that we have just taken for granted that we and Kendall have to just “deal with” that apparently should have been being addressed for a while now. This doctor basically called our GI doc and had (from what I understand) a little “heart to heart” about Kendall, reviewed her entire history, and had his secretary call me within a few hours of their meeting to set us up for his first available appointment. Which is tomorrow.
Considering that when we were inpatient with Dr. S he told me that kendall needs manometry testing “like yesterday”, I am sure that that will be the main focus of our time tomorrow. I won’t bore you with the details now of the ins and outs of manometry, but understand that as much as I have wanted someone to “test Kendall’s gut” for nearly 2 and a half years now, this is NOT the test I would ever hope for. It is reported to be rather painful for many patients (although some do manage to endure the testing with only minor discomfort), and the results are very often hard to hear as parents. Motility testing is a double edged sword. It CAN have the benefit of giving docs necessary info to help or even in some cases reverse intestinal dysfunction. It CAN offer some hope and help. It can also be not helpful at all (inconclusive results). And then of course it can confirm your worst nightmare, there there really is not much function left in the gut at all. This is all just info that i’ve gotten and gathered from a few other moms who have been through it. at this point, that’s about all the further I am willing to look into it.
I really liked Dr. S when he was our attending, so I will wait until we talk with him to figure out if i need to have a cryfest or just pull up my big girl underroos about this. Maybe it won’t be as bad as I’m thinking. Maybe he’ll have some really great new insight, or new med to try that will be THE KEY to getting things to work again. Maybe he’ll do nothing but confirm the HOPE we already cling to that Kendall will be ship-shape soon.
As Ben is leaving for a work trip tomorrow morning, I will have to coordinate getting the girls to their respective places at the right time (home from school, to dance, make sure someone is here with them), figure out what I am doing with Kaylen all day, deal with the emotional fallout from what we will hear tomorrow at this appointment, and of course, make the 6 hour round trip with a Kendall who is still recovering from whatever randomness she has been dealing with all week. After coming home from the party yesterday she managed to somehow puke up tummy contents (even though she’d only had about a teaspoon of drink, no food, all day), and was trying to puke up more when Ben found her like that in bed during her nap. Not sure if its just more of the same mystery whatever she’s dealing with, if it was the excitement of being at the party and on the go all morning, or if its just her body’s way of saying she’s had enough for the day. so hopefully 6+ hours in the car and off her schedule doesn’t make things any worse. We also have to pull labs and change her dressing in the morning before we leave (fun way to wake up!), and oh by the way I feel like death warmed over from some ebola virus that I am HOPING is just an asthma/bronchitis flare. I got a parent dance to practice for, yo!
So there’s a very long-winded and pictureless update. I have more to come, but need to go OD on mucinex singulair and some nebulizer concoction that I just make up on a whim right now.
Thank you in advance for any prayers to cover us from any of a hundred different angles tomorrow. Pray for the other girls too, that they don’t have to worry that maybe we really won’t come home (not that I think we won’t, but in their minds, going to milwaukee means going to the hospital – it just freaks them out in their own ways). Pray for travelling safety. Pray for me to be able to drive and breathe at the same time. Thank you so much for always praying. I know so many of you do so faithfully and it means so much to know that you are!
PS – the picture above was from the day before she started getting “sicker”. it was during the three hours a day that she is completely tube and backpack free. It was “warm” enough to walk to the park and this was the first time she has ever attempted to play on the play structure (it was the baby/toddler one, so much more her size and speed!) – and I was just so proud of her. She was obviously very proud of herself too!
Till tomorrow –