Not the drink kind.
Well, kind of the drink kind. Except I currently don’t have a drink in my hand.
I mean the kind where it’s a bar where everybody knows your name. except it’s not a bar, its the hospital.
That’s kind of how it felt yesterday when I wheeled Kendall into our unit and there were nurses waiting in a line down the hallway saying “welcome back!!!” and escorting us right back to the same room we had just left about 24 hours before. But kind of like the song says “you wanna be where people know your troubles are all the same, you wanna go where everybody knows your name.”
I know there are some of you who are understandably confused about what it all means that we had to come rushing back up here yesterday after we were supposedly ok to go home. (Don’t worry, i’m mostly still confused about it all myself!)
Basically, when we were leaving on Saturday afternoon, we knew that one of her cultures was growing positive, but it was a pretty late positive, so they let us go anyways because a.) I was already packed up and none of the weekend people wanted to come tell me i had to unpack, and b.) the assumption was that we were starting to get on top of the bug so continuing with our meds at home would still be an appropriate course of action. Well Sunday morning another one of her cultures popped positive, and one of her main doctors was actually around to see this news. Infectious Diseases was consulted and the decision was made that we needed to get her old line out as quickly as possible as the belief is that these bugs have now invaded and set up shop on the line itself and that could set her up for a REALLY bad infection if they hung out there waiting til the antibiotics were done. I don’t fully understand all of the reasoning, and i know there was a lot that went into the decision, but the bottom line – we had to get the line out.
So i packed up the laundry I had just done, put the unpacked bags back in the car, and drove back up here. Except I forgot my awesome mattress pad that makes the boxes of bliss semi-bearable so….that kind of sucked!
In a normal course of action – the old line would be pulled and a temporary PICC line would be placed. A PICC is a peripherally inserted central catheter – basically it threads through the arm and into one of the main heart veins. It is a good temporary solution between permanent lines – for a lot of kids and adults. Unfortunately for Kendall, her arm veins are mostly scarred over and get VERY unhappy with any use – especially a double lumen PICC. They usually cause more problems (clots, occluded lumens, just a general pain in the booty) than they solve, but they are sometimes a necessary evil. complicating the matter is that most PICC’s are made of polyurethane, and you cannot clean the area or dwell alcohol in polyurethane because it starts to melt it. Kendall can only use betadine/alcohol to clean her sites, and she relies heavily on an ethanol (alcohol) dwell to help keep her line clear of the bugs – ESPECIALLY when we cannot get clear cultures, like right now. So all of this led to our surgeon needing to think way outside the box about the kind of line he could place, where he could place it, and how we could still get the access we need.
This of course is all based on which of Kendall’s veins are still open/usable (the more veins are used, the more they tend to scar over and become unusable. At one time Kendall only had two veins open for central access, but miraculously a couple years ago a line study showed that two other sites previously thought scarred were actually slightly open.) ( I realized there was one other question on Kendall’s page I meant to answer too: Can Kendall have a port? And the answer is really no. Ports are great for people who only need occasional access and who have actual immune systems. Neither of those applies to Kendall. The placement and removal of a port is a much more involved process than with a broviac which is the type of line she has now, and while we initially tried a port for her line needs, it quickly proved to be a very poor choice for her. So that’s why we can’t do a port!)
Anyways – all of that led to what we have now – a broviac line that is only a single lumen that is non-tunneled but goes centrally to her heart, and a midline IV in her forearm that should hold a little more steady than a typical PIV but not tick her BC vein off too badly. This is not an ideal situation – because we cannot leave the hospital with either of these lines in place. And neither the ID team nor the surgery team will place another central line in her until we have five negative cultures (which translates to ten days in Kendall dollars). I did hear one person say 5 days of negative cultures, which is a different story though – so i’m hoping everyone means THAT instead of five negative cultures because the thought of being here for ten straight days makes me want to eat all of the donuts in the world and cry the ugly cry. It is different to be here with a pretty stable Kendall vs a very sick one – of course when she’s very sick it’s not a question this is where we need to be. But right now we are in a gray area. She is still definitely not quite herself, and her care at home is VERY demanding. Yet – she isn’t SO sick that all she wants to do is lay in her bed. Therein lies the challenge. Entertaining a child who WANTS to be up and doing something, but doesn’t have the energy to do so, and still requires being hooked up to multiple machines and monitors making doing much pretty impossible. Please know that I am not complaining that she is doing so well~ I am SO thankful that she is handling this illness pretty well from an infection standpoint. I just feel….”stuck”. I almost always have a good instinct about whether it’s time to go home or time to stay here inpatient, or what direction we need to look in or head in….and I don’t have that this time. I don’t like this feeling but I know in part it is just God telling me to slow down and trust HIS timing and His plan. And I am reminded, somehow, sitting here in this small room with the constant beeping of monitors and the discomfort of this vinyl coated boxy couch bed, and the chill of the conditioned air being pumped in – of sitting on a warm beach, watching the waves crash onto the shore. There is no sense of timing to them. They come and they go and they just are. And I am trying to be like that – knowing the waves come and they go and they just are and all I can do is keep my eye on the One who knows that even in chaos there is order and even in discomfort there is joy.
So today we will wait some more. For a plan and for clear cultures and for sleep and for whatever this day holds.
I’ll update again once I know more!
Keep on Keepin On~
Terra