home again.

we are home.

gram negative group a strep. ampicillin every 6 hrs has been changed to rocephin 1x a day, via infectious disease. so we can be at home. where we belong.

as a small correction - her port did not get infected from contamination. that would be the case if it was a healthy child, but with chemo kids, it could have been from anything and it attached to it… nothing to  fight it away.



aidan and sawyer came up on sunday when EJ and i swapped. reese was feeling a bit better - and even aidan commented that reese "was smiling again". she always knows.  reese cried when aidan had to go. and would mention the rest of the week "i cuddle aidan?"



sawyer brought reese her "chloe", which reese welcomed with open arms and cuddled right up.

they both drew on her white board (EJ had already drawn a pretty cool cat - and reese by a tree lol).



the rest of the time in the ICU, i spent trying to pop reese's air pockets. seriously. by the third xray, the air bubbles in her belly were even bigger than before. i pat her back, put her on her belly… anything. we spent a long time sitting up, drinking carbonated drinks, and giggling at burps. but man was she in pain. nights were spent crying, tooting, then sleeping for a few. then the cycle would start again.

the fluids made her look like a stay-puft 'mallow. i wanted to bite her cheeks.

finally, by tues afternoon, they moved us from ICU. we needed to raise sodiums (yeah, she kept that vasopressin in a bit lol) and keep her blood pressures from being so low.

down on D6, reese was my girl. demanding and crazy, of course. purring like a kitten and cuddly? yes.


we had to figure out how to get home with the abx. but home health won't let people do meds Q6. thats why we had to contact ID for a switch. we had to take off her port access and re-access bc it would be too long for that same needle to be in, before we go BACK to the hospital next tuesday for [second to last] in-patient chemo. that was horrible. "hey reese, we can go home! but before then, we need to take this out, put cream on, and start over!" ::twitch::

we spent the days watching movies, napping together, getting meds… she got her vincristine yesterday. we colored, we listened to her favorite songs on youtube. but since she still was positive for rsv - we couldnt go annyyywhheereee.

eta: i wanted to add - in the end, her potassium seems to keep falling and there is a slight concern of kidney damage mentioned to EJ, but nothing we won't continue to watch.

the logistics of this week were hard. corbin likes to sleep, obviously, with me. the girls have things to do after-school - but luckily, between [wonderful] family and friends, it was ok. kids got to dance classes, miller went to starbucks (lol), corbin settled in, and reese had one of us at all times.

tonight, reese settled right back in with her sisters. they all played outside before dinner, she made "tiny corndogs" which are just croissant rolls that she doesnt even really eat - but she loveloveloves to roll them up and put them on the baking sheet. aidan made her a loom bracelet and then they all went to the media room to watch frozen. reese had her sisters grab all of her things - laylee, pink pillow, her trains, bottle… and she curled up on the floor and fell asleep.

she just wanted to be by them.

i am caught between being so excited that this treatment is ending soon, and being scared. but her body needs a break. and this summer will be a nice break for her. and us. all of us.

update from ICU.

i wasn't here until, like, 2pm. but here's the day, as i have been told ---

1. we are off dopamine. BP good.
2. we are off vasopressin. but its still lingering ;) her sodiums are okay, but low(er) for her. so we're swapping some saline out and we'll be good, i think, when she gets the vaso out of her system.
3. the infection is group A strep and her port was positive. no, i dont exactly what happened, but when i asked: "is this inside going to port? or outside germs going in?" the answer is likely some contamination going in at some point. i still need more clarification on this, obviously.
4. we switched to ampicillin.
5. her belly still hurts. i gotta figure out what is causing that. there could be 100 things, i guess.
6. she's as puffy as a stay-puft from all the (necessary) fluids.
7.  she ate 1/2 a cheese-cheese and some bites of chicken this afternoon/evening. woohoo.

so i am here tonight - she is still very tired. she has to heal.

aidan and sawyer came up with me when we swapped today. she was sad to see them leave and wanted to cuddle with aidan again.

there isn't a lot more to add, i guess. status quo for a while, i think.

sepsis.

early this morning the nurse came in and told us that her blood culture came back positive.

i almost cheered.

it was nice to hear that it was something. its horrible that i have to want something so terrible, but there had to be a reason for the way reese felt. and this was an exact reason.

(link about sepsis)

pretty much everything on the list - elevated resp rate, fever (she got 104 at one point last night - which is ridiculous for a child that stays low, normally), low blood pressure, elevated white cells, and kidney function problems, lack of urine output... all of it was reese.

i, personally, think it started with a UTI that we didn't know about. i think that the "my belly hurts" was not constipation, but was bladder spasms and a UTI. i cant prove this because we didnt do a urine culture before taking vancomycin, but thats my guess. either way, she has a blood infection and is septic. im no doctor (lol) but that would be my guess. for now we put the vanco through her port to make sure thats clear, as well. because who knows.

today was exhausting. we barely slept last night - maybe an hour? i cant even remember. just listening to the blood pressure monitor tell us what we already knew. 65/27 is not okay. 72/30 is not okay. 60/14 is not okay.

so im trying to break this down as it was explained to me:

the body needs fluids for circulation. fluids help your blood pressure.

fluids also raise reese's sodiums. but since the ICU chooses what they believe is top priority and then works from there - blood pressure wins.

we tried to wean down from the dopamine. 12 to 10 was good. 10 to 8 was meh. so we stayed at 10, iirc. thats okay. i think we're still there now?

i left to go pick ASMC up from my parents' house. EJ calls to tell me about ddavp pressure ::twitch:: its hard to explain to people who see DI differently from us that "big pees" arent "peeing out" (if you remember those days.... haha). but here's what the ddavp pressure was actually from - her sodiums were obviously increasing because of all the saline based fluids (and we all know that i deal with this for chemo all the time. but for chemo, i tell them to turn the fluids OFF. we cannot do that this time...), but that wasnt necessarily the problem. the problem was that they wanted to keep the fluid IN her body so her blood pressure would raise.

ok.

i wiped my tears. stopped getting angry and frustrated. and i talked to EJ about this.

"what would they do for a child without any DI history?"

and so thats what they are doing. i dont even know, right now, where they are on the process of it all, because i am at home and i dont want to keep bugging them tonight and ill check before bed - but the deal was this - her sodiums, because of all of the saline fluids, were at 165. so they decided to do IV vasopressin, so when her sodiums got to high 140's/low 150's, it would be turned off. and then her body could go back to handling it. it wasnt an injection that you couldnt take back the reaction from. but at least now she will hold pee in to help the bp.

its what theyd do for a normal kid.

perfect. i felt relieved and satisfied.

the ICU is a wonderful place with lots of attention and amazing doctors who have such a wealth of general knowledge of all medical fields. our doctor all day and last night was one we had when we first came to children's. he remembered us and it was wonderful to work with him again. he cares what we have to say and explains things to me when i have questions - but some others up there arent the same. some in the ICU would rather have parents who let them just do their jobs to get you down to the floor as quickly as possible.

but we have more questions than that.

"hey mom, we're rounding, wanna come out here? i imagine you have something to add..."

haha you are right, sir. i am certain that i will have something to add. and i did.

she's getting potassium because of low levels (remember, she hasnt eaten in days, basically) - and food will help that, when she's allowed to eat. i didnt quite understand why they had her on clears only, but here's why... apparently, when you use dopamine to raise BP, it can take blood from other areas, like the gut, to help the kidney a bit. so you dont want to, then, load your gut with food or youll be sick.

"mommy? i want pancakeths". thats my impression of reese's toothless lisp. the nurse about melted with guilt for keeping reese on clear liquids only.

i crawled into her (vibrating, its like being a newborn again lol) bed today to take a nap and keep her company while EJ went to grab lunch. i asked her if she wanted to take pics and she was delighted to be silly with me. our wonderful dr reminded us that while she may, sometimes, look and feel a bit better, her insides are still very sick. and it will take time. i believe him when i see reese go back to sleep after only being awake for a tiny amount of time. or when she tosses and turns bc she is uncomfortable. she's now fluid puffed and just... doesn't feel good.

i hope tonight is smooth for both reese and EJ. i will be there tomorrow. making a parental hospital schedule has become second nature to me. this is the 3rd wkend in a row that we'll have been there. i will be grateful for every sassy word that comes out of that sweet mouth, though.

"mommy... shh."

i can usually curb the 'tude with a kitty cat hug, though. ::meow:: we rub cheeks. ::meow:: yes, that cures all.