Saturday, March 15, 2014


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.
IG: punkfictionv4



  1. As always I will be praying for Reesey and your family.

  2. Bless your soul Mama!! We are going through it with my husband, we have 3 kids and it's terrifying just reading your story and knowing a glimpse of that fear and feeling is unreal. I pray the lord puts a peace blanket over your family and even on your weakest days you get a little bit stronger!! Your baby girl is absolutely beautiful and oh so strong!!

  3. My momma heart aches with you! pleading to Jesus for Reese!

  4. I'm sorry that she's having such a hard time. I hope they get to the bottom of it quickly. Bless her heart.

  5. I am praying for peace and comfort for both you and reese-love you both much.

    Meredith (OU)