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.

intuition.

i knew it. 

i knew it saturday when i sent EJ to the hospital with reese for basically nothing except she vom'd up phlegm.

i knew it on tuesday when we were here for labs and i justified her out of character tidbits as ANC being zero.

i knew it yesterday. when i convinced myself  that "she's fine" and "its end of protocol - these things happen. kids get weak." i knew that wasnt true.

today i was no longer convinced. reese woke up this morning different than yesterday.

last night we took her to mexican, which she loves (ok, she loves the corndogs at the mexican place), and she still didnt eat. she hasnt really eaten in a few days. just bites here and there. but at dinner she made jokes and laughed with us.

this morning she did not.

after only being awake maybe an hour, she asked to go back to bed.

i called hem/onc and pleaded my case. it's friday and she's not acting like herself. she's tired. no she hasnt complained about her head. yes her belly still hurts sometimes. she's just not normal reese.

we went downtown and were here by 11am or so. labs, shunt series, and virus test. labs state that from yesterday (we got labs at legacy to double check sodiums from tues) that her ANC was up, but that her hemoglobin was down - 8.4 (?) to 6.9.

well there you go.

there was our answer. only it wasn't. she didnt feel better.

before blood, i noticed red spots on her arm. and they started to spread a bit.

she was hiding her bad arm. when i looked at it, her middle finger and pointer finger were straight. and she was holding her hand open - which is not relaxed, for her. and her fingertips hurt. like, if you barely squeeze them, it sent her into a pain spiral.

her blood pressure is low. 60's and 70's over 30's. she is breathing a million times a minute. she's been breathing fast since RSV, i'd say. but we're not the only ones who've listened to her, since then…

her creatinine level is high at 1.0 where normal for her is 0.4.

she had really weird poops.

EJ came up with miller (after being watched by a wonderful friend today. who came back tonight to watch M and C - my parents are at the lake with aidan and sawyer. they will be back in the morning). and corbin was with me. it was distracting and insane, but then a nurse took miller for popsicles when the ICU team came to evaluate reese. i then left, took M and C home and put them to bed for my sweet friend to stay, and ran back here.

the smell of the ICU is like no other. for months it seeped into my clothes. its sterile and soapy. like bandaids. like sadness and fear.

its quick and quiet in the ICU - which is hard for us now. i want to know what youre doing at every step. please dont come in and then do your business and leave. the hem/onc floor includes us in almost every decision - or even better, asks us what we'd like to do. that is not the ICU.

the ICU doesnt know you. they don't know reese's "sort of but not really" DI. they don't know what im talking about when i talk about bad arm. they don't know that her meds are slowly morphing her into a real life kitty.

when we left ICU back in dec 2012, i was so scared. ICU was a safe haven for people to make decisions for you. the right ones. but here i am, over a year later, wanting to help make those decisions with them.

EJ is taking his shift of exhaustion on the horribly uncomfortable ICU couch. there's no cosleeping with your child in the ICU, either, which is the worst feeling. although, i feel as if i could sneak into reese's bed a bit later. tell them i didnt know the rules. i cried to the ICU transport team that i wanted her in a bed and not a crib. she's not a baby. she gets a bed.

i brought her pink pillow and "mommy's laylee" from home. she immediately took me up on my offer of them.

i guess i should sum up to say, they dont particularly know whats going on. they are treating the low blood pressure, first. some things are directly related to the kidneys. some things don't make any sense. reese doesn't follow any book or rules or symptom list, though, so we'll see.

neurologically, she seems very "with it". back in december, i worried so much about tumor because she wasn't making sense. her brain didnt seem to be on track. she couldn't get words out. but today, even in and out of sleep, she was understanding and telling me things. stories. one story about how EJ took the two cheeseburgers she had hoarded into her tape measure hat (don't ask) and told her they were ew. (lol love her).

so now i sit in a rock hard wooden rocking chair. the same type of rocking chair that i held reese in when we got here in 2012. later, i'll sleep on a couch that mirrors the one where i brushed her hair and held her for the first time after her original brain surgery. if i remember correctly, we're only a room or 2 off from where we lived for a while.

i spent the past few days crying in the car. not eating. not being able to function out of anxiousness. and trying to suppress some sort of feeling i had, feelings i knew were right. i made calls to the nurse. everything made sense. i agreed. but even then, my mother's intuition overruled.

so here i sit. almost 1am and i just watched them put an IV into her arm (meds going through her port cant be disrupted, but she still needs labs and other meds). she didnt flinch, really. because she's too tired and sick.

i think its time to sneak underneath the warming air blanket with her. or at least try.

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new chemo. round 1. part A1.

yesterday morning, i packed up everyone's stuff, dropped ASM off at my parents' house, and reese and i headed down to children's for the first in-patient stay for the new chemo.

the whole process takes forever.

you go and check in, fill out the same paperwork every time, get labs drawn. then go back and wait. you get into a room where they will, then, access her port. sometimes, she can just do port-drawn labs, but sometimes not - depending on what chemo day it is.

then we start fluids.

after that, you wait for a bed on the hemoc floor.

then you hustle your butt over there and do more tests.

one of the tests is a spec grav. yesterday, her spec grav wasnt "right" at first pee. so we had to wait until it was. which means chemo wasnt ordered until the evening. we didnt START chemo til about 8pm.

all day, reese was tired. we cuddled. she slept. we just hung out, quietly. she wasnt really acting like herself, but she's been up a LOT recently at home - so i figured she was catching up.



last night, we slept in the same bed and she just laid on my chest as cozy as could be. she didnt fuss for sodium draws, she just.... was cozy.

this morning, she puked. i had already had a neurosurgery consult come in yesterday and then they did rounds on her and checked her "squish" again this morning - where her last surgery was. after she puked, i was certain - that was it -- she had something wrong with her shunt. she puked again, they started zofran (and also the dex -- steroid -- in case she needed surgery). they sent us to ICU to be watched and ordered a CT scan.

her sodiums slowly dropped -- 128 - then down to 123. ugh. i couldnt remember if she had gotten her keppra (seizure meds) before or AFTER she puked the 2nd time so i just prayed she didnt seize. her HR went down into the 50-60's when sleeping - which is VERY low for her.

i had a NS come talk to me and she showed me that there's no fluid collecting in her brain - its puffy between the skin/skull, but thats it. she showed me scans - totally normal. she also showed me before and after resection... wow. its like... so much smaller. i am amazed. and blessed.

here was the problem: they have to pump reese with fluids bc of the chemo. that, alone, will jack with her sodium levels. THEN, she wasnt peeing out. so, she was just diluting it all in her body. we didnt give her the ddavp this morning so we just waited for her to pee - and finally she did. her sodiums went back to 128, 135... and so on. when they hit back at 128, she was a different kid. totally happy, laughing with nurses, being a jokester... everything.

EJ came up after work and then we moved *back* to the oncology floor - and he is there tonight. he brought the headbands (remember these? haha) for her to wear for compression on that squishy side.

its funny, though - an oncologist came in this morning to talk about possible shunt surgery and said "youre so calm!" and i guess i was -- but here's the thing. when you have already had 2 craniotomies where they cut out a piece of your child's skull, lived in ICU for weeks, in the hospital for more, had a chemo fail, been told that if you didnt do xyz, that itd be "too late" or that "youd have 2 months with reese left".... a shunt surgery does not scare me. its a means to an end at that point. am i glad that she didnt need it? of course. but anything to keep reese healthy is whats the foremost in my mind.

what scares me is if there wasnt a means to something. if they didnt know what was wrong. if they couldnt fix her. i hope to never ever feel that feeling [again]. that gut wrenching fear. to where you run to a toilet.

i am not "happy" about how things are - but generally, i am happy day to day. i have to be. i have to be calm and rational and let the meds, the doctors, God, everyone... work. i pray for peace - and God has, gracefully, grated me that for now.