The Revolving Door.

There really is a big revolving door downstairs at the main entrance of the hospital. I don’t find it ironic or funny that they put one in the hospital side and not the clinic side. And while I am not THAT superstitious – it is the door I used yesterday to come in here with Kendall to get to the ER.

For those who don’t know what’s going on via Facebook updates – Kendall is back inpatient at CHW. Again. With a line infection. Again. At least she switched it up a little this time and is NOT growing Candida (yeast) – but some questionable morphication (i made that word up) of Gram negative shapes. (They identify bugs by their shapes – rods, bacilli, etc). She is growing something that is Gram Negative (negative does equal bad in this case) – and they can’t figure out if its a rod or a bacilli. It seems like a lot of unnecessary quibbling over details to me – but I am sure its important on some level so we can get her on the right meds. Right now we are just throwing a whole lot of general coverage antibiotics at it – which does seem to be helping her feel pretty good – but we can’t go home on the right meds till they know what the right meds are.

So how did we end up here?

Not by choice – I can assure you of that much! I was JUST about to sit down and do my weekly update to our team of nurses up here in milwaukee when the phone rang with CHW’s number. I answered it to a very terse nurse “K” telling me we needed to come immediately to the ER because Kendall’s culture was positive. It took me a minute to even remember what she was talking about because while we had indeed pulled a culture on Monday – it was more just as a “placeholder” so we could evaluate her PICC site. Let me back up a little cause I’m getting myself confused here…

So Monday, we did our usual dressing change/TPN labs with our nurse, and then we all packed up in the car to head to Dr. Natalie’s for Kendall’s 30 month well child check up. (I honestly do not even know why I scheduled this appointment – but I apparently did, so we went.) As we go to get Kendall out of the car at the office, she begins screaming bloody murder. Like seriously people are poking their heads out of the office building next door and from across the parking lot staring at us because of the insane shrieking of Kendall. Her nurse is trying to figure out what’s wrong, the purple Ni-Ni (don’t even get me started on the preciousness of the purple Ni-Ni binkie that cannot ever leave her sight) rolls smack under the middle of the biggest old boat of a cadillac you can imagine, and Kaylen starts in with the asking for a snack (???? It’s nonstop with that one, I tell ya!) I am able to get on the ground and shove my upper half under the car and reach with a movie case to scoot the ni-ni towards me, the nurse calms Kendall down, and in we all parade. Every time we try to get near Kendall’s arm though, the shrieking starts back up.

After going through my “list of family issues” with Dr. Natalie (since Kendall is so well managed, I just hit on some things for the other girls – she’s a great doctor like that!) – she went to check out Kendall’s arm, and thought it should be evaluated at a hospital where they have PICC experience in peds. It was red and puffy-ish, and its just completely unlike Kendall to be in THAT much pain for that long of a time. So they sent us off packing to Edwards. Ben was able to leave his office and come get Kaylen who by that time was a complete beast – so that was a huge help. We had more than enough chaos between “E” (nurse) and me dealing with Kendall! We had to check into their day-stay unit for peds where they proceeded to evaluate her arm/site, and then pulled labwork (a CBC and blood culture). I am still not sure why they chose to do the culture – it wasn’t something we discussed with Dr. Natalie and I don’t think anyone thought we were dealing with a line infection. however, the nurse doing the labwork proceeded to not pull a waste vial (you are supposed to “waste”/throw away a few cc’s of blood when you are pulling bloodwork because it could be full of whatever has been pumped in recently), did not have the culture bottles set up right where she was pulling the labs, and in general just lacked a sense of sterility about the whole thing. I watched her traipse up and down the hallway holding Kendall’s syringe of blood for a good five minutes before she finally found the culture bottles and sent them off. The eventual conclusion was that Kendall’s new dressing was on just a little too tight, and was pulling the tip of the plastic end of her PICC line up into her entry site/vein, causing the massive amounts of pain. we were able to manually move it around slightly/kind of loosen the dressing, and she seemed mostly resolved. But the bloodwork seemed like it might come back to haunt us~

I even commented to our nurse on the way home “I’ll actually be shocked if we DON’T get a call that that’s positive with all that she exposed that sample to!”

Oh how quickly I forget my own words…

So back to Tuesday morning then – when K said we needed to come up, I immediately went into arguing mode and tried my hardest to convince her that it was a contaminated sample and couldn’t we pull new cultures from home and THEN see if they still grew. She was not amused in the least and said “the doctor still wants her up here”. I was like – is he listening in??? How do you know that if you havent’ gotten off the phone and given him this plethora of helpful info I have just presented to you?!?!?!? GRRRR. I got nowhere with her. so I called two other people to plead my case to about staying home Or even going local again and THEN seeing what happened after repeat CLEAN cultures were drawn. No one bought it. Her culture from Monday was growing both gram negative AND gram positive shapes, and the gram negative ones almost always indicate true infection (gram positive alone can sometimes be surface contaminant and not true indicators of infection). I actually got my own argument turned back on me when our complex care nurse pointed out to me “you just can’t always go by how Kendall is acting how sick she actually might be. We really need to evaluate her up here in order to be sure we are doing the right thing”.  {Insert me hanging up the phone and swearing here}. TWO YEARS I have been preaching this to them – and TODAY is the day they are going to start listening to that????? Of course…

Knowing she was probably right, I began packing up and making frantic phone calls to people to try to arrange for the other three. I knew it would be rough on the older two cause they HATE coming home from school to a huge change of plans/me and Kendall gone/no way of knowing when we might be back. Especially when they left a very happy and playful Kendall that morning. No warning whatsoever. I hate that for them. I can’t imagine how I would have handled it being 9 or 6 and having my mommy disappear on a moment’s notice multiple times a year…it breaks my heart to think about how strong they are to hold up to this so many times. Our awesome nurse stepped up to help out with K3, Ben made a bunch of phone calls and got his flights changed to be able to turn right around in Minnesota and come back last nite instead of Today, and my awesome friend/second mommy to the girls arranged her entire day to be able to pick up the girls from school and get them to dance and in general be goofy and make them laugh till they forgot to be upset that we were gone.

Of course we get to the Er and here I am with a singing playful Kendall that I am trying to tell them has a positive blood culture, and they are all like “yeah ok crazy lady!!” She put on a spectacular show for complex care (as always) – but within ten minutes of them walking out of the room she was curled up in my lap, shivering so hard I could hardly hold onto her, moaning in pain and achiness, and I could just feel her little body starting to burn up…

she actually had me very scared at one point as I watched her eyes rolling back in her head and couldn’t stop the shivering/rigors and she just kept moaning “cold mommy colddddd”. I knew then that we were in trouble. That it could all actually be right. That she just might be sick with gram negative shapes of some kind and that she might get REAL sick from those shapes. She ended up going up to 103.5 that I could get (I am sure she was higher than that at one point but I couldn’t set her down to grab the thermometer). They came in shortly after that point to start the antibiotics and give her tylenol anyways – and both of those things seemed to help immensely. We struggled with pretty high HR’s throughout most of the nite last nite – but once a couple doses of the antibiotics were on board, things seemed to settle out.

We found out this morning that she is growing gram negative somethings in the cultures they drew from HERE on her PICC line yesterday – proving that she is indeed bacteremic. The hope is that we caught this one SO super early that we will avoid having her go septic – but we’ve all seen her go sailing off the cliff edge into “oh crap what just happened” before – so the docs are ordering up everything we typically have to use to fight this just so its ready for her in case she does decide to crash on us. So far today she is definitely holding her own. She is demanding car rides, Hot Dog (mickey mouse movie from downstairs in the family library), and we even went and got a balloon. (She asks for a balloon every time we are here, but usually by the time she is feeling good enough to go downstairs and see the balloons, we are within a day or two of discharge anyways). I just figured she endured a lot yesterday, so we got a balloon. (and in case you are thinking I am the worst mom ever for not just getting her a stupid balloon – they don’t have just little helium balloons here like you get at Red Robin when you leave – they are the huge mylar kind that there is no way I can drive home with a 4-foot long head of Dora the Explorer blocking my entire back window sized. Plus it makes me want to choke how much they cost – I think of all the cokes or hospital sushi I could get with that precious fundage and it just seems wasteful). But today I decided i would easily starve if it meant she was happy for a little while, stuck back in this place again. (And if you’ve seen me, you know I have a LONG way to go before starvation!!!)

So she is happily ruling the floor up here once again in her little red car, with a newly bedecked bumper housing a huge Hello Kitty balloon and streamers. Cause it needed to be MORE gaudy and ridiculous. She has her favorite CNA today who saw that we were coming up yesterday and had our room all made up for us when we got up here, including an assortment of hair ties, detangling spray and the “special” shampoo, pink blankets just for Kendall, and extra pillows for me. It was the kind of little details that made me tear up – both because we are so loved here, and because we have been here long enough to BE so loved….We’ve had just about every nurse who knows Kendall stop in to lecture her on being back here so soon, she already has two med students wrapped around her finger, and the floor resident is convinced that Kendall likes him the best out of the entire team doing rounds.

in all – its hard to complain. sure i’d definitely rather NOT be here. But if you gotta be stuck in the hospital, at least its nice to be surrounded by people who know you and get you.

We really don’t know a whole lot about “the plan” at this point – other than hounding the lab at Edwards to hurry up and identify the bug they grew on Monday so we can compare it to yesterday’s bug and see what meds we can mix up and get home on! right now her antibiotic schedule is absolutely grueling (as in there is NO WAY momma can do all that every nite for three weeks) – so we have to work on that a bit. We will probably be consulting with ID (infectious diseases) if this is the same crazy bug she grew out when we left here a couple weeks ago, and there may be talk of replacing the PICC if they think the line itself is seeded with this crazy bug. We may also be having a chat with Immunology (again) about doing something more to keep the bugs in her gut at bay, boost her own immune system better, and stay the heck OUT of this popsicle stand for a while. Overall – she is doing well – and that is what I keep my eyes on. She could be a WHOLE lot sicker right now. And I know it is only by the grace of God and his infinite ways that we even pulled that culture on monday that led us here.  Had we still been at home when Kendall spiked like she did yesterday, it would have been very scary. Not in the way that she would have gotten any more sick – but it would have been RIGHT as I was walking out the door to take the girls to dance. It would have delayed us getting up here and getting started on meds by precious hours that could have made a very big difference in how she is doing right now. I really can’t even think about all the what if’s because I know – we were brought up here for a reason. I don’t know what that reason is – I just know we are where we need to be right now.

So we will watch Hot dog for the 12th time today, and we will walk in the car a few more trips and I will try to plan for a weekendd where I may or may not be home and I will try to just breathe and appreciate every moment. i have so much more to say but I feel like I am trying to think through a bunch of cotton balls that are stuck in my brain or my lymph nodes or my ears or somewhere and I am still hacking up a lung so it makes thinking coherently kind of hard.

I will update more when we know more! Thank you so much for praying and thinking of us~

 

terra