Monday…

It’s a monday around here. Just…blah. It snowed a lot yesterday and through this morning up here in Milwaukee, but I hear its just been rainy down near home. At one point we couldn’t even see a thing out of the windows up here on the 11th floor! It just makes it seem that much more “wintery” instead of “springy”.

overall, she is continuing to take baby steps forward in improving! Definitely the right direction, and right now, we’ll take any steps that way that we can get. i don’t think that I have even fully grasped just how extremely sick she was on friday and saturday. I think that is blessedly because i was not here for the worst of it – because the entire time I was away from her, I just ached to be back here with her, helping Ben, going through this together. In my heart I knew i should have been here, which is why I had the mini-breakdown when Kaylen locked the keys in the car and I felt like we had no way of getting up here again.

Anyways – I have a lot to go back and catch up on, and hopefully as long as it stays calm and quiet around here, I’ll be able to do that.

First things first though – today’s update.

She has had one day of clear cultures! WOO HOO!!! Clear cultures means that her blood is not growing any more of the bad guys in the little dish down in the lab. It means WE are winning! (*insert “All i do is Win” by DJ khaled blasting in your ears here*)  In order to even begin to discuss discharge, we have to have three straight days of clear cultures. Having day one under our belts is certainly a huge step in the right direction, since we had three days of “growth”.

Her DIC – or should I say her disseminated intravascular coagulation – panel is “improving”. I HATE not having copies of labs in front of me, because I have no idea how bad they were, or what makes them “improving”. I know her platelets should be in the 150-450 range. Hers were 149 when we got to the ER (down from about 200 when we started tpn), and have been just getting chomped through since then, dropping 40-50 points a day. This is symptomatic of both a bad bacterial infection on its own, and is exacerbated in a sepsis situation. She is considered now to be out of the danger zone of DIC, but her platelets arent’ making quite the huge jump in numbers that we need them to. The more blood we draw to check this (and the many other labs that her docs want to keep an eye on), the worse we could make the situation. So for now, we are trying to draw the least amount of blood possible in order to hopefully let her body start making more platelets on its own. She came dangerously near urgent transfusion level, but given the complexity of all of her issues right now, no one wants to add any more craziness into the mix by transfusing a blood product that may or may not actually solve any issues (she has no signs of obvious bleeding anywhere, so we don’t need to replace them just yet).

So far she is showing very few signs of being respiratorily compromised by the flu. I think this is due in large part to the tamiflu having been started and now nearly finished, but also to the fact that she is just not up and moving around, so isn’t really moving a lot of the junk from her head/sinuses down into her throat, causing the wicked cough that the other girls and myself have. And maybe she just won’t. i hope she won’t because with her already kind of crappy lungs and an extremely unhappy immune system at the moment, I am sure it won’t be pretty. If you’ve heard Kaylen or Karissa in the past few days, you know exactly what I mean. If you haven’t, let’s just say that the use of a suction machine will definitely be needed for Kendall if she does start draining/coughing like they are.

Right now she is actually complaining of head pain (signing “hurts” and then pointing to her head/neck/ear area), so I don’t know if she is just getting a headache from ALL that she has been through, or if it is the wonderful sinus pain part of this crappy bug! And in true complex kid fashion, they don’t want to give her tylenol because it “might mask a fever”. But we can’t give her ibuprofen right now because she is still technically “thrombocytopenic” (aka, low platelets). If she were to whack her leg or arm or head on something, or start bleeding from somewhere, it would be a literal blood bath, and the ibuprofen (which has a blood thinning effect), would make that worse. So – we have to just keep trying to calm down a very whiney and grumpy 2 year old who has just been through the ringer and does NOT want to be calmed down for love nor money. At least when the pain subsides she is falling back into a pretty good sleep until the next time someone wants to come in and touch her or move her or examine her or just check the iv pumps! GRUMMMMMPPPPPYYYY!!!!

And – her IV is still in a very bad place. I think they have actually called the transport team to come down and help us find another site (or two if possible) to start more peripherals. ID (Infectious Diseases, the docs making the calls on her bacteremia and fungemia infections) wants us to try to make it till Wednesday before placing the PICC line to give her the best shot of having totally clear blood so another implanted catheter (permanent IV) has a good shot of being successful. If we absolutely can’t get access any other way, I think they’d sign off on a PICC  because right now we HAVE to have something to continue giving her the antibiotics at least, but also nutrition. GI is not really optimistic right now that we would have ANY luck with enteral feeds as a source of nutrition, but they are working on a few theories right now to come up with ways to help us get her back there sooner than later. So – we are having her limp along on D10, which itself is very hard on a small vein (like the one in her foot!), and every few hours they come in here with another essential electrolyte that we have to slowly infuse in order to try to keep her body from getting too out of whack. Her nutrition labs look….horrible. Which isn’t surprising. But we are definitely in a not fun place with regard to giving her the nutrition she also needs in order to keep fighting all that is warring in her body.

They just came in to our room to do an echocardiogram to make sure that none of the yeast in Kendalls bloodstream has decided to make a new hideout in her heart, where it could grow its evil army and attack her again the second we put a new plastic thingy in there. Or something like that.

So – that’s where we are this afternoon. Just kind of hanging out and waiting for NOTHING to grow. I think there is a rumor that if we get our three clear cultures and we have a working PICC, we can bust outta this joint. That would be Wednesday at the earliest, but more likely Thursday. That is IF we continue with the negative cultures. Which we hope for beyond hope!!!

Will update later if I know more to update!