No, not the actual day. the movie. Tell me you’ve seen it. If you haven’t, go Netflix it now or something.
Anyways – that’s what it feels like around here. Like i’m living the same day over and over and over again. Major time warp going on right now in my old crazy brain!
For the handful of you who read this blog but not my facebook, Kendall was admitted to Milwaukee this morning. The chain of events leading up to me typing that sentence is so convoluted and frustrating that I’m not even sure where to start unleashing the fury of my frustrations. I think in my last post I referenced the “old wives tale” among special needs moms about packing a bag to ward off the admission fairy. Well….apparently we need to work on this urban legend. Because while bringing the bag DID indeed work – it may have worked too well. In spite of my “misgivings” about her wonkiness of the past few days, and the fact that it shocks almost everyone we talk to that she gets discharged on the same day for this procedure, we did in fact finally walk out of the hospital on Monday evening, and got home around 9 pm.
Now I should back up even further and say that when they called me back to PACU (basically its the first stop recovery room right after surgery, it’s one huge open room with little stations where they park kids and monitor them til they are deemed ready enough to go to the actual recovery room) – it was a
shitstorm flurry of activity. Typically I have to peek under blankets to find my child – not yesterday. I knew right then that something was up, but it took a few hours to get the full story. Basically, when the surgeon pulled the picc line out (the line she has had in her arm for the past three weeks which has been the bane of everyone’s existence on manhattan street), it had a lovely clump of “suspiciously fungal mucus” clinging to the tip. From the reports i’ve been able to gather from various nurses, the surgeon basically demanded to have kendall’s main doctors on the phone right then in the middle of surgery and proceeded to rip them up one side and down the other about their lack of attention to detail in keeping this kid infection free, and that they better come up with a hella good plan right then and there or he wasn’t going to discharge her. So in recovery, they were busy measuring her line length, ordering new meds, dealing with the hospital pharmacy, our home delivery pharmacy, and insurance to get a few things put into place. As an almost afterthought, someone ordered a set of blood cultures to be pulled off her BRAND SPANKING NEW NEVER BEEN USED BEFORE line they just put into her chest. I thought it was strange, but didn’t spend too much time dwelling on it as kendall was in and out of consciousness by that point (more in than out luckily) – and was busy pointing at the poor teenage boy next to us who had a woundvac on and was getting lots of IV meds and asking “who dat? what dat sing? why he gets med-sins in hims poke? can i have pink ice cream now? why dat boy just yay-ing dere?”….ugh. dear teenage boy – my extreme apologies. I hope the morphine they were doping you up on made my child’s inquisitiveness disappear into the background.
So i didn’t really think twice about the cultures.
We made plans to start a new overgrowth regimen for kendall’s gut as well as a new “locking” procedure for her line. Basically we inject her with a lethal amount of alcohol, let it set in her line for a few hours, then suck it back out, replacing it with a mass dose of clot busting medication to kill anything that might be left, and then leaving her line alone for a couple hours. Sounds super fun, right? Yes. Yes it is. So that is what was going on around her bedside. I was concerned about the “ball of mucus” on the end of her picc because, hello! – we’ve been running IV antibiotics and antifungals THROUGH that line, so it should most definitely not have had anything on it, especially not anything visible to the naked eye.
So really, it shouldn’t have come as a shock to me when my phone rang at four fifteen am with a message from the on-call doctor that Kendall’s blood culture had turned positive and that we were to make plans to come in to the hospital IMMEDIATELY. Well – sorry, but “immediately” and “4 am” and “terra” will just never make a complete sentence. Ben was already up and on his way to the airport for the trip he had postponed in order to stay home with the girls on surgery day. I fell back asleep/dozed off, and was woken up again by the phone at 6:30. Same doctor, wanting to know where on earth we were. I managed to mumble out the fact that it was butt early, my kid was fine, and if she insisted on getting repeat cultures i could maybe get kendall to our local ER after the older two were on the bus because it was just me at home with four kids. She was placated by that plan, but gave me “fifty/fifty odds” on being able to go home after the bloodwork was drawn. Not even an hour later, our doctor was on the phone telling me he absolutely vetoed that plan and to stop dawdling and get her up to milwaukee NOW. So I made the call I didn’t want to make to Ben, had him get out of the boarding line and come home (he volunteered for this – he didn’t make me make a hard decision!), and started packing. I decided that I needed a little time with my other babies though, so we went and grabbed a quick breakfast together.
And then back up we came.
We had one of the quickest ER experiences I’ve ever had here, and in less than three hours, we were upstairs in a room. Overall, Kendall is looking and acting amazing. We all want to hope that this positive culture is just a contaminant (not a true infection source). The ramifications of it being a true infection are part of what is spurring the sudden and urgent reaction by our doctors.
I rarely get into a lot of the nitty-gritty on here when it comes to Kendall and her situation. I’m still not sure if i can do that tonite. But know that whatever I do type on here, the whole big picture is easily twice as bad as whatever you think it is. I’m not one of those medical moms who overdramatizes every little thing that Kendall (or any of the other girls for that matter) endures. She goes through a lot – we all go through a lot with her. Every day is filled with pain of some kind. Every day I am assessing issues that would stump many experienced ER doctors. Every day I’m shufflin’. (Ok that last one is a song lyric. but I had to break the ice….)
Anyways – the point being – I don’t know how to say some of the hard stuff. I don’t know if i WANT to know how to say it. If this infection is a real infection, it could have some serious ramifications as to the functioning of Kendall’s immune system, (or rather, the lack thereof), and same issue for her gut. Our doctor looked me in the eye more than a couple times today and said – “her access is becoming critical”. Meaning, we are down to only a few more places we can put a line in, should we need to pull this one. We’ve always tried to protect Kendall’s access, but it’s never been “critical” before. I’ve never seen him actually “worried” for Kendall before. And while I’m not trying to incite a mass panic among all of you, dear family and friends, i’m not sure how worried I should be for her.
She still looks and acts great. Not “normal” or even “baseline” for her – she doens’t feel good, and that is apparent. But she’s not looking “bacteremic” or septic like she was last month. That could be because she is really not that sick because we caught it extremely early. It could be because it is a contaminant on the culture (this is unlikely for a few reasons, but it’s still a theory we are all clinging desperately to). Or it could be because her body doesn’t even have enough immune response to recognize the bacteria/fungus as an invader anymore. (I’m WAY oversimplifying things on that last one, but that’s it in a nutshell). Her bloodwork indicates that her body is at least trying to mount some defense, so that is both a good and a bad thing. Good in that it indicates that there is SOME recognition by her immune system, bad because it makes it even less likely that the bug growing is a contaminant.
But overall tonite – she’s doing ok. And i’ll take Ok.
I’m overly tired. I’m sore from making the round trip to Milwaukee twice (did you know how sore you can get sitting on your butt in a car for so long??? Also did you know how insane you can go when you are sitting in traffic that brings five lanes of traffic on a major freeway down to ONE????). I’m hungry because I didn’t have enough time (or friends!) to plan out bringing snack foods/meals better. I have three items of leftovers which will be left to chill in the windowsill. The omelette leftovers may or may not be a good choice for that – but it’s what we do to survive around here. I guess we’ll see..
The plan for now is that hopefully the cultures we grew today stay negative for 24 hours, and that she remains fever free. If she should spike a temp or if the cultures grow out as quickly as they did last nite, we would likely start adding in some more antibiotic coverage until we were sure we were covering the right bug. If it stays negative, she doesn’t spike a fever, and she continues to look good, we will do a few more days of antibiotic/antifungal coverage here, and likely be home by the weekend. A positive culture will likely spur on some more action starting tomorrow, including lots of imaging to see if a source of infection can be identified. The thinking is that possibly she has a pocket of bacteria hanging out somewhere that is causing her recent bout of infection cycles. Above all, the major goal is to clear this line and save it, and send us on our way as soon as we are comfortable with the fact that we have killed everything we are possibly able to kill out of her bloodstream.
Ok i’m falling asleep typing this…
I’ll update more in the morning as soon as I know more.