Transfer.

While little missy is sleeping, I figured I’ll try to get a quick update out for everyone.

Sorry I kind of left things hanging, and for those on FB, you saw that we were transferred to milwaukee yesterday afternoon. The events preceding that transfer probably deserve their own post, or at least much more fleshing out than I am giving it here, but suffice it to say, it was the right decision to make. She wasn’t actively “crashing” or anything, but the info that her labs and cultures were revealing were making it clear that the limited knowledge of complex cases like Kendall that our local hospital has was just not going to go far in getting her better. (Not always reassuring when you are having to spell the name of the anti-fungal medication you had to suggest to the ID doc because he had never heard of it nor prescribed it before.)

The transfer up here itself was smooth. We had a nice quick ambulance ride, Kendall got a good nap in between watching toy story 3 on the big screen TV in the back of the ambulance, and she was generally still in surprisingly good spirits when we got here. Now if you’ve never checked in to a teaching hospital before, you cannot possibly understand the screechingly painful process of first going over vitals/issues with the nurse, then having to speak slowly and spell things for the medical student who comes in to get initial history, then repeat the same info to your child’s resident doctor, then have the senior resident come in to confirm/review all of that info, and THEN hope that between the three of them, all the medications got put into the system/ordered correctly so that when your child is due for their next dose of ‘fill in the blank’, it is ready to go, in the right form, at the right dosage.

We’ll just say it was a very long night last nite. I admit it was a little tough going from 1-1 care (Kendall had only one nurse who was solely assigned to Kendall’s case) at Edwards to up here where we are getting all the float nurses, and have, in our 14 hours here, had 5 different nurses already, none of whom really fully understand Kendall’s needs right now. It is frustrating, but as long as Kendall is staying “ok”, i will try to have a better attitude about this.

In the middle of the nite Kendall spiked another fever to 102 something. They needed to redraw cultures off of her line at that point, and try to work to bring the fever down. For Kendall, motrin (ibuprofen) is the best way to do this. Unfortunately, motrin is a no-no in kiddo’s whose blood counts are dropping as low as Kendall’s are. Again, they had to have 83 people have a caucus about what was the best course of action – risk the bleeding the motrin could cause, or risk her fever going higher and causing more issues if we tried to hold it with tylenol. Let’s just say i’m not a super peppy decision maker at 2 am. I told them do motrin or you deal with her being febrile all nite. She got the motrin. After almost 2 hours of having to do near constant vitals (checking her bp/temp, she is on constant HR/o2 sat monitoring), watching her try to retch her way through a bad temp spike (she can’t throw up, so her brain just keeps telling her stomach to throw up even though it can’t – it’s not pretty), and in general just praying that God would bring some relief – we both crashed again.

As of right now this morning, I have yet to hear from a “real” doctor as to what our plan of action is for today. She is on isolation until we are able to determine whether or not she is growing MRSA as one of the other bugs in her blood. She was receiving “boluses”(imagine drinking 15 large mcdonald’s cokes in an hour) of fluid last nite to try to keep her blood pressures up (they are staying stable now), and in an effort to get her kidneys to start making pee again (they are reallllly slackin the last few days). Needless to say she looks a bit like the Stay-Puft Marshmallow baby right now, so they better have a real good plan for getting all that fluid back out of her since her kidneys aren’t playing nice.

She is awake now, talking, giggling at her super silly complex care doc (I mean honestly, I think even the most cold hearted person in the world would giggle at this man, he’s beyond ridiculous) – asking why she can’t play with play-doh, but not wanting to move at all. She’s firmly dug down into the little nest of blankets she has surrounding her, gets extremely grumpy when anyone needs to look at/touch/move any of her tubes, and moans in pain/nausea every few minutes. But overall, she is continuing to hold her own, in spite of how bad she looks on paper (lab results). She is an amazing trooper. I know I say that a lot, but if you could see how sick she SHOULD be, and how she fights through all of that crappy feeling to try to still be a regular kid – you’d say it too.

I’m hopeful that we get some better plans in place for getting her feeling better once rounds happen.

thanks for checking in with us – for praying – for bringing me cokes and chocolate and food yesterday. i always feel bad not listing you amazing people by name –but inevitably, i’d leave someone out, and really, even if you didn’t have a chance to bring a coke by, i still love you. So – huge shout outs to {insert your name here}!! thank you!!!

I’ll update again when i know more!

 

terra