turning the page.

Today we turn the page on a new month, turn the page on a new season even.

i hate being “in” over the page turn. It’s just a weird mental thing. Like not stepping on sidewalk cracks or having to wear certain shirts inside out on purpose. It causes a glitch in the matrix.
But we really didn’t have much choice in the matter so i’m trying to accept it for what it is and move forward without focusing too much on the calendar or the changing leaves outside the window.

i really just wanted to get some kind of post up on this actual calendar day.

I know there are so many questions some of you have about the information we have gotten from various tests/studies we’ve been doing on kendall trying to come up with a good plan of attack for getting her home. As i am exhausted at the moment, i hope this makes a modicum of sense.

Basically, we fought back the fungemia, her initial presenting issue – pretty well. Pulling the line and supporting her body through the septic shock by being proactive based on her past history – that was almost the easiest part of this stay. And just when we thought we had things all set for discharge – BAM….down went kendall again. Acting very sick, being in a  ton of pain, and essentially not giving anyone real warm fuzzies.
There’s so much i could write about – but the bottom line is this: her pain was out of this world insane for her, and she was requiring high doses frequently of narcotic pain meds, and because of, or maybe secondary to the pain, she was spiking fevers. EVery time she gets back over 102F, we have to re-send blood cultures to make sure we aren’t missing another infection.

So far those cultures have been negative, so we were really stumped as to what could cause her to look/act so septic and yet, apparently, be ok. She points to the pain as being located under or behind her ribs on her left side, and sometimes it radiates up that shoulder and sometimes its her right shoulder and sometimes it just hurts so bad she won’t take deep breaths and she gets in this hyperventilating breathing pattern. We have checked her pancreas and gall bladder – and while both are inflamed and angry and the gallbladder is full of sludge – the team doesn’t feel those are the problem. We know her spleen is three times its normal size and is not shrinking back down like it should be (it is stretched to capacity – and they do admit that could be pretty painful). We have ruled out kidney stones, established that she may have supermesenteric artery syndrome but that her renal pressures are ok for now, and essentially racked our collective brains for ANY other possible scenario under which we could be operating here. So far nothing new is popping out to anyone.

It is frustrating and heartbreaking and yet….I am glad we are looking. I am glad they are not giving up on trying to find answers for KQ. She is an enigmatic mystery for sure. And this pain – it is not my baby. It is new and whatever it is that is plaguing her it takes her WAY down when the meds have worn off and she is left only in this place of writhing, blinding pain.

We switched her antibiotics yesterday back to her old crazy plan where the nurses are scrambling, even with all the pumps and extra help, to fit everything in during their 12 hour shifts. And with that crazy schedule, her fever has not returned. Curiouser and curiouser. We have absolutely no idea what monster we are fighting.

This is …… it is one of the hardest battles I have helped my baby endure through. I am weary from this one, and I know her little body is so so so tired.

We don’t really have more of a plan right now. But this is what I know. I am exhausted so I will post this for tonight and hope that tomorrow brings renewed strength for the fight.

 

t.

Positive for Growth.

I am getting really sick of hearing those words. “culture in lab is positive for growth”.

For the uninitiated, this means Kendall is still sick. MUCH sicker than she’s looking or acting. We are all (nurses, doctors, residents, students) looking at her and going – “HOW is this kid functional?!?!?” As we continue to get more and more reports of positive cultures (she easily has at least 10 petri dishes in the lab at this point), everyone is starting to get a little more wary of her “looking so good”. She could be truly kicking this thing in Kendall style (which is my hope), or she could decide to crash on us at any moment (which the team is kinda hedgey on).  There have been already this morning multiple discussions on the plan for today/tomorrow/the weekend. Basically we are trying to juggle the balls of  PIV’s, meds, fluids/nutrition, cultures, and central access placement.

It’s a pretty convoluted thing to try to put down in words – but there are a lot of decisions that hinge on “a, b, or c” happening. Or not happening. If “____” happens, then we have to do “_____”. But if “_____” is also “_____”, then IMG_4563 we need to call “_____” for a “______”. Unless “_______”.  It’s kinda like a fun mad lib game. Except not. I was starting to feel VERY stressed by about 10 am because I was having different members who i love and trust of Kendall’s medical team pull me into the hall for conversations, and i would agree with their plan, until the next person came in, and I’d agree with THEIR plan, which was opposite of the one I just had. Add in trying to get Ben’s opinion/weigh-in on the matter, plus having friends share their thoughts – it was all just too much. The problem being – at the end of the day, the team is looking to ME to make the final decision. If I chose wrong, we could make a potentially HUGE mistake. Too much pressure.

And then I went to get a peanut butter cup cookie. (Have i ever blathered on about my extreme love of these amazing cookies from the cafe downstairs? Remind me to do that sometime. They are amazeballs.) Anyways. I came back upstairs to a sheepish looking ID (Infectious Disease) Fellow. Who I have had some GREAT conversations with over the past few days and have really come to trust and like a lot. She had news that the broviac tip had grown (they send the end part of the line they pull out of people with bugs like Kendalls out for testing) – “positive for growth”. At a rather alarming rate of growth, given the fact that she has been on “the right meds” for five days now. And all of our juggled balls went right out the window. We have one course of action at this point, and that is to put a PICC line into Kendall tomorrow morning. IF , God forbid, she should lose both of the IV’s she has in right now, we would attempt to get the helicopter team to come place another couple (we need one to run her fluids in and one to run her meds in). If they were unsuccessful, we would be looking at either needing to be transferred to the PICU for an “alternative” IV placement, or trying to get someone in IR who could place a PICC in the middle of the night. So let’s just hope these two stay put for another few hours, shall we???

Overall though, she is continuing to LOOK better, even if that switch hasn’t happened on paper yet.  Once she gets central access again (the picc line in her arm), the amount of blood that they need to take out of her will more than likely make her look crappy again – but it’s unfortunately unavoidable. She has far too many issues going on that we have to address, and to start doing that, it requires bloodwork. Hopefully she tolerates the blood letting long enough to give us some more direction. But needless to say, it’s still a tightrope act at the moment.

I continue to be amazed at how many members of kendall’s “team” are stopping by, checking on us, checking on her, helping us tweak and fine tune things. I know I said that yesterday too, but we have continued to have a steady stream of very well trusted doctors and nurses coming through all day again today. There’s nothing like having seen 15 doctors by noon to remind you how medically involved your child is, just incase you forgot while sitting in the hospital with a crappy infection. But you know, it is what it is. It is going a LONG way towards helping my peace of mind, and IMG_4566keeping me from my usual hospital mental overload, because it is not SOLELY up to me to fight for her this visit.

Also probably because I have an AMAZING stash of m&m’s and coke, and oreos and garlic pita chips and….well…i’m just very very blessed. And thankful, for all of you.

It has been a crappy week, not gonna lie. I have had a HUGE range of emotions this week, even if i haven’t necessarily blogged them all. sometimes things are too scary to even put into words. And they are equally sometimes too amazing to sum up in words. I am pretty certain that whenever we finally get home, I will have, well, essentially a temper tantrum probably. Or i’ll go completely comatose for a few days. We are supposed to be orientating a new nurse who can help with “part” of Kendall’s care. (She is an LPN, not an RN, and as such cannot be responsible for any of Kendall’s line care. Which is going to be awesome considering Kendall will have a TON of line care when we get home. Make sure you have your “sarcasm font” turned on when you read that last part…) The alternative to NOT orientating new nurse is that I am solely responsible for the ramped up care of Kendall, the catch up of re-entering real life, the overwhelming emotions and exhaustion that hit after a long-ish hospital stay, and the regular day to day “mom” stuff of my life. I’m really not saying all this here to be whiney or to gain sympathy. I’m simply processing in the way I do best – getting it out on “paper”. It is our life, and I will adjust and I will be fine either way. Ok, so “being fine” might entail “slightly more crazy than usual”, but whatevs.

I know so many of you have offered to help, and want to know what to do/how you can help. I am always so torn about putting things up on here because I never want it to seem like i am looking for handouts. Plus its hard to “ask” for help.  But i know that for some of you, you will bust on in the doors of my house and start doing something if i don’t tell you what I need so…IF you want to know how to help – and i’ll warn you, much of it involves clothes folding or toy organization. Also possibly some random babysitting shifts if i decide the nursing thing is too much for the first week back home. Anyways – I’ll have a list. you can email me if you want to see the list. That way i don’t have to feel like i’m begging, and you don’t have to feel obligated if you really don’t give two shakes of a lamb’s tail. Deal? Ok – my email is being really dumb here on the hospital network – so email me at terrarist101@gmail.com for the list. (and yes for the record, that email has earned me a spot on the FBI watch list. They randomly check my email to ensure that i am not dealing in arms or drugs or such. I can’t help that it was my nickname LONG before 9/11.)

Anyyywhooo…

I need to go grab some ice for my next coke. i’ve stopped putting things in the fridge cause i don’t want them getting stolen again! I need like a hotel ice bucket. OOO!!! I know! Emesis basins! i’ll fill that up with ice and put a few on that!

Ok that’s all the randomness I got for now from 1105.

See you on the flipside. Or..whatever side it is when I get bored enough to blog again. Which might be tonite.

 

tTerrarist.

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