Improvement At Last.

It is such an amazing thing to be able to write that we are FINALLY seeing some improvement for Kendall, instead of watching her get sicker and sicker!

Without boring you with too many details, here’s what we know:

All of the cultures we drew (special blood tests that allow them to put her blood in a petri dish and watch what “bugs” grow) from Edwards are all positive for growth, meaning she was not responding to the medications she was on there. She had three sets of cultures from her central line, and one set that they drew “peripherally” – all positive. The peripheral cultures were honestly what was most “shocking” because they were drawn after treatment had started, so they should have taken much longer to grow out, if at all. When they grew just as fast as the others, we knew she was headed for a not good situation.

When she was transferred here on Monday night, another set of cultures from her line was drawn, and those have SO FAR not grown anything. They are not considered officially negative until day 5, but having no growth so far is a very good sign. Last night she did not spike another fever, so no cultures were drawn last night, but they are going to be attempting soon to pull another set of peripheral cultures. This is going to be so many levels of fun i can’t even begin to describe it to you. The senior resident on the floor is well versed in Kendallisms, and is on the phone right now with the transport (helicopter) team begging them to come please try to get these labs off of Kendall’s peripheral veins. Her arm is still very bruised from the set of peripheral cultures they drew on sunday, where four nurses and two lab techs had to hold her down to get that blood drawn. I do not know where this child gets her feral strength from when she is so sick – but i’m kinda glad she has it. i think it’s a large part of why she is able to kick this horrid nasty septic infection to the curb.

so anyways – what was making her so sick. She is growing Klebsiella in her urine, which IMG_4564 made her very very very sick as a little baby. She is also growing StaphA, a variant that we had, up until an hour ago, thought could be possible MRSA (horrible infection to try to get rid of, as it is resistant to many things and requires lots of the big gun antibiotics to get rid of) in her blood, and her age old nemesis, candida albicans (yeast) in her blood. We were trying to kill the klebsiella before it too could enter her bloodstream, as that would have been very very bad. Pretty sure that has been accomplished as her urine from yesterday looks much better. All of this led to her teetering on the edge of “going septic”, which essentially  means “organ failure”. That all sounds really scary, and it very much is – but the good news is that Kendall is NOT septic. She was definitely having some scary trends towards that – her kidneys had essentially all but shut down, her liver was becoming very unhappy, she was in bone marrow suppression, headed towards DIC (think horror flick where blood pools everywhere), and was very much in a scary place. I don’t talk about how scared I am when I am really scared. I was really scared this past few days. But now I can say that we are making good progress, and while she isn’t out of the woods yet, she is definitely in a much better place.

She will beat these infections as she has in the past. Getting her line out was a huge part of that progress. If you’ve hung out around here for long, you know that bugs *heart* plastic things in the body, and they attach there and breed little buggy families and cause much general havoc and chaos. So getting the line that goes directly to her heart and thereby touches every single cell of her blood was important for her improvement. It was part of the reason we transferred up here to milwaukee, because when i asked the team at edwards how they planned to maintain access if we pulled her broviac, I got a blank stare. Not comforting. The team here KNOWS that access is of uber importance, and knows little missy’s penchant for blowing PIV’s like she’s a firework lighter. It really is not super fun to have to be up here away from my other girls – but seeing once again how awesomely responsive the team here is to Kendall’s craziness, it is reassuring.

I have been able to have many good talks to Kendall’s doctors. I am confident that she will come out of this stay in a much better position than she has been in for the past couple months. When she woke up this morning, she just had that sparkle back in her eye. She still doesn’t want to move a whole lot, and is very content to just lay in bed and watch a movie, occasionally play with some playdough she was given from child life. She can’t really sleep very well because of the overwhelming nausea. i’d show you pics of what “gut shutdown” looks like, but i don’t want to scare you. (and to all our friends who deal with “gut shutdown” on a daily basis, my deepest respect to you.) Kendall can put out some pretty nasty stuff on a daily basis, but the shutdown brought on by sepsis is really it’s own special brand of nasty. And she has some very intense nausea to go along with that. Luckily her GI is our attending this week, so he is authorizing the team to try lots of different things to keep her comfortable. This is SO very appreciated by me as usually i am having to beg/scream/yell to get her any relief beyond the minimal efforts they like to use. I am very optimistic that as soon as she makes a full recovery from this infection she will go back to her “baseline”, crappy as that is. It is still WORLDS better than what she has right now.

Complex Care (the doctors that essentially make sure that all the other “specialists” who work with Kendall don’t get tunnel-visioned on THEIR part of her body and work together as a team) has been a huge assistance with this stay too, and it is such a relief to have someone else who can be the support Kendall needs, so I can take a break from having to be momma bear 24-7. Kendall will probably likely be here through early next week. We need to ensure that this infection is WELL under control with more cultures (hoping for NEGATIVES!), tune up a few things in her care plan, and ensure that she will not need transfused or infused with blood or platelets. She’s kind of teetering on the edge of needing a transfusion right now, but we are trying to avoid one if at all possible. Kealey so sweetly told me she would give Kendall blood if she needed it. Heartbreaking what the other girls are going through right now. I’m so torn at times like this…needing to comfort them, needing to be with Kendall, needing to be a good wife to my husband…

I’m losing my train of thought….I actually DID get pretty good sleep last nite (for a hospital night), and I even had breakfast (coffee and a kit-kat) – so no lectures about that! Anyways – for those of you who wanted this info (because you think i’m mean for not getting kendall the big elmo balloon) – here is the link to the gift shop where you can order the big balloons for her yourself! I’m just kidding. Don’t get the big one! There is also a link on that page to send an e-card to Kendall’s room if you would like to do that! she is in W1105 and loves getting the mail from the volunteers! Thank you again to everyone who has helped keep me in stock with food/cokes! Or just keep me laughing with your craziness. Trying to explain to Ben how my friends had me rolling with laughter last nite….well let’s just say i gave up trying to explain it. Don’t forget that the honey boo boo finale is tonite!

Ok peeps – i am going to go see if any of my food is left in the family fridge…

i have a good post for you tonight. Ben wrote another post about his thoughts – you don’t want to miss it – so check back later!

 

peace out party people.

 

T.

Transfer.

While little missy is sleeping, I figured I’ll try to get a quick update out for everyone.IMG_4559

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 IMG_4560 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.IMG_4561

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

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