a simple virus.

it started with sawyer puking once at school.

i thought it was her new meds.

reese got a fever later in the week and then woke up and i thought she was going to throw up. i called the onc nurses because it actually freaked me out. i almost kept reese home from school on halloween - a fun FUN day at school - because of it. of course the nurses assured me that it was because i was on high alert.

it was 2 years since dx. 

so i waited all day for 2pm to roll around... its weird to miss someone after such a short amount of time. but i worried all day that i would get some call that she threw up.

but she didn't.

instead, we got ready for scare on the square.

we weren't there for long and it was cold. i did get some smiles. we got to giggle with friends, but i was so ready to get home to get to EJ and to trick or treating.




we walked around the neighborhood, EJ put his rig on and was a skydiver, reese and corbin in the stroller, miller/aidan/sawyer running from house to house. we saw friends and neighbors and relished in all of the reasons that we chose this neighborhood. the kids, the families. it was perfect.

saturday we spent all day at the mall. the kids were tired. i could tell not everyone was up to par. EJ and i went to a wonderful and gorgeous wedding on saturday night, but our sitter called to tell us that reese was asleep the whole time. we got home, still asleep. i woke up in the middle of the night and didnt feel good, but figured i had too much wine - reese woke up for the day and puked.

i couldn't even breathe. 

EJ took her to the ER at legacy. i called downtown to let them know. i simply told the fellow on call the facts - she has a shunt. she has a brain tumor. and she puked. so off she went. i wasn't asking - i was telling.

they did a dozen neuro exams on her and decided virus. by the time they got home... i agreed.

i was so sick. fever. puking. running to the bathroom. it was lord of the flies in the house with the other 4 kids, while EJ was gone. i was just laying on the floor while they ruled around me.

reese had gotten zofran and felt better. the rest of the day we slept it off. she puked again in the middle of the night on sunday, i kept her home monday.

yesterday, reese went to school. they all went to school. i still seem to have low grade fevers around here, but nothing too weird.

then last night i got "the tap" at midnight from aidan. she had thrown up all over her bathroom.

...and another one bit the dust. 

let me say, had i not been sick this wkend with a stomach virus, i would have been sick with worry. i can safely say that i would not have slept soundly, until december, with her next MRI. in the back of my mind, i would have wondered if they missed something - if it really was just a simple virus.

i have not had to do something this normal in a while. lots of laundry, extra baths, the time change making everyone so sleepy. normal fall, i suppose.

laced with worry, of course. as it will be forever.

(every day photos. starting from sept 1 til now)

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.

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.

www.facebook.com/gingerfight
IG: punkfictionv4

hospital rambling.

again we came into chemo sick. last month, it was an ear infection. december was filled with the encephalitis/meningitis debacle. this month, i could tell she was getting crankier by the day and then BAM! sick.

they moved her tuesday in-patient chemo to thursday bc there were no beds. we got here and i mentioned, prior, that she said her shoulder hurt - so we did xrays to make sure her port didnt move or anything. all looked fine. her ANC was 13,000, which basically indicates sick. we just assumed virus. i am not even certain she would have made counts without being sick.

by thursday evening, i was super confused. she had faded very quickly.  her shoulder area still hurt and she was just not herself. attending told us to keep her NPO (no food or drink), if she was like this in the middle of the night, so we could do an MRI fri morn.

they decided to do a virus test to rule things out and that was it -- RSV. annoyingly enough, i had taken corbin into the pedi on wednesday for her cough. so we have had to keep an extra watchful eye on her breathing, as well. so far so good - just a lot of coughing up phlegm.

as for reese  - that meant we did not need an MRI, since we found the root of the way she was acting.

this whole weekend has been… stressful. reese doesnt do anything normal so its just ::shrugs:: and guesses and preemptive meds.

her normally cold and purple ish feet were warm and red. so guesses of sepsis/cellulitis floated around. they gave her abx just in case. then that was disbanded as a possibility. her arm still hurt so we had another xray. totally clean. her HR was high from the RSV so they gave her more fluids - which just made her sodiums go higher. which is then only solved with NO fluids (so she will drink. she will *not* drink when she has maintenance fluids). she had a fever so along with abx, she got more steroids.  which has made her an angry bear. she started getting itchy - then a stronger rash formed. i think it was from the abx, honestly, even though they say probably not. whatever, she's getting benadryl. at one point her port wasnt drawing back. she doesnt really eat here and so she also needs to get potassium. something that helps one piece usually seems to harm another. such a balance.

one kid in the hospital has always been a double edged sword. being the parent at the hospital is nice. there's… control. youre not waiting to hear updates, youre not texting reminding the other parent of things you wanted to say to the nurse or dr. but youre also not sleeping. and its stressful to cater to a 3 year old kid on steroids. its even more stressful to be the parents making decisions and having to remind doctors how well you know your own kid. not nurses, not attendings… just the middle ground.

being at home is fun. its fun to take the other kids out. to hang out with the big kids on a smaller ratio ;) you arent having to talk to medical professionals every hour - you just hear what you need to know. but, again, you dont sleep. your whole family isnt together and thats disheartening. i get sort of… lost… at night without everyone. i just sit around watching tv too late and then finally crawl into bed hours later than i should have. then i also worry. EJ tells me things that are happening and i tell him what to do - even though he knows what to do. or already did those things. but its that type of scenario when you feel like you have to say it bc WHAT IF YOU DIDN'T!? annoying, im sure lol

and the stress doesnt end. yesterday evening, we facetimed bc she was so upset. i had EJ "pull hair" to calm her.  then again at 2:30 this morning, i facetimed her to sleep. she always wants whatever parent isnt there, of course.


and then it gets to the point where she feels better, but we have to finish things off. wean off some 'roids, finishing abx, check blood level in case she needs a quick transfusion… but at that time she wants to leave. "port off!!" bc she wants to go home. nothing is fun anymore. she gets bored. with things like RSV, we cant go play anywhere - and i cant even sneak her out of the room. she has no interest in playing with toys. and sometimes wants the TV off bc that means we are staying. its frustrating for her, but she's at that middle age where she understands, but not fully.


yesterday she missed the 80 degrees weather. the other kids played outside from the second i got home until past normal bedtime. reese missed aidan's morning soccer game, which she loves. and today it's icy. its 25 degrees or so and the roads are terrible for driving. i can hear the ice pellets on the window, here.


but soon, now less than 12 weeks as we were reminded by her oncologist on thursday, chemo will be done. i joked "it doesn't have to be" and he smiled and reminded me why you dont want to live on chemo ;) and also kind heartedly stated that he feels "this amount of time on chemo will be the perfect amount of time".

i will be lost when we arent in the hospital. when we dont see doctors extremely regularly. when there isnt something actively killing cells in her brain. when her body has to work it out on its own. when God hears our prayers and her body does those things beautifully and seamlessly.

we should be going home tomorrow. maybe the weekly vinc before we go. maybe some blood. then it will be tuesday. 11 weeks to go. so many plans for the summer. for the future. i can't wait to brush her hair again. we're going to the beach this summer with Lighthouse Family Retreats. from blog links to e-friends to random searches, i have known this family since fall 2012. diagnosed the same day. birthdays days apart. a mother who just "gets" me and has the same very expensive momcology degree - paid for in tears, heartache, experience, and, yes, dollars. and a family who will be with us at the retreat. the kids who we have talked about for almost a year and a half will play in the sand together. the mom who ive texted, late at night, to just hear someone understand what im frustrated or upset about, is going to sit on the beach and drink wine with me.

these are the types of plans that get me through the wonder. these things will get me from after-chemo MRI to the next. so i continue to plan.

reese should wake up from her afternoon benadryl induced nap soon and i need to pump. but hopefully, tomorrow, her nap will be in my bed, instead.

follow us on IG: punkfictionv4

infectious disease. maybe.

ok i want to update here. ill copy a lot of updates from reese's facebook page, first.

in order of past to present from where we left off in the last post.

thursday morning --
EJ is taking her back today. prayers that they get to the bottom of this. he's not leaving without certain tests so we'll get those done and see. in 1 week, such a drastic change is super weird. my money is still on shunt. so now we wait and see…

friday - 

reese is still very weak. she was up with me, trying to talk and be funny (which is better than yesterday), but still so sleepy. her sodiums are high, but this was set into motion with 2 big/quick boluses of full sodium saline yesterday - which spiked them, and now we are combating them with diff saline (but it still had sodium so i think EJ got them to stop it completely for a bit). LUCKILY, she has been drinking more - so i am confident that she'll regulate herself like she has been able to. i just need them to trust her a smidgen... she can do it. give her a bit of time.

they havent felt the need to do a spinal tap yet bc she has technically "improved" - even if she is so far from baseline. but we'll see. thank you for praying, everyone. it broke my heart into a million pieces to see her like that today.  i havent felt this helpless in so long…

saturday - 

we need prayers for guidance bc we are all confused 

this is the best reese has acted and felt in dayssss. but she has a low HR, is back to having a really low temp, and other weird things that just don't add up.

but she's talking, eating, drinking, sitting up and wanting to hang out… not baseline, yet better…

sunday - 

hey  there's not much to update, really. we are just leaving no stoned unturned. she had the spinal tap yesterday and so it could be 48hrs before definitive answers on that (the question is meningitis or not) - which makes sense based on symptoms. either way, she is on even wider base abx. she was hypothermic yesterday afternoon (between 91-92deg at some times), but we still don't understand why she wasn't blue and out of it. its all so strange.

she talks with us, makes us laugh, is eating food, handling sodiums like a boss… so now we wait. we had another CT yesterday to check tumor, which they said was stable, but we'll do an MRI tomorrow because, well, gotta check everything twice, it seems bc we still can't figure out why we were here.

i want us all to go home happy and healthy for cmas. she was a NORMAL 3 year old a week and a half ago. totally fine. and then all of a sudden, she wasn't. its very frustrating.

monday was MRI and EEG - 

ok its all still not 100%, but here goes.

her actual tumor is smaller. 

there is some sort of… i cant explain it, exactly, brighter ribbing? in a diff layer of her brain. but since some oncologists dont read MRIs all day, they sent it over to our neuro and our onc to look at and figure out. basically, it could be 1. that we were already on abx and so her spinal tap isnt coming up with meningitis bc of that. but as long as she responds to abx, then thats what we'd continue to do. or 2. that its some sort of tumor thing growing somewhere ELSE *while* chemo is working well on her actual tumor.

she had an EEG bc of some weird "spacing" she was doing yesterday (and more base covering) - so we'll hear back from them at some point this evening (unless its nothing - then i bet we hear nothing).

reese can never just be a normal case  i really never thought i'd say to pray for meningitis, but really, that sounds best to me. so we shall wait and see.

then this afternoon - 

ok today reese FEELS awesome  she gets tired, after playing, but plays with us and laughs and is a jokester 

the EEG saw… slowing, sometimes, but that was it - so we upped her keppra a bit.

she got her vincristine today. counts were improving.

so far, for the MRI, the neurosurgeon was like "sometimes you can see those ribbons bc of a way a dye was injected. sometimes its tumor progression. sometimes… who knows." so we already have an MRI mid-jan and as long as she progresses, we'll just be keeping that and seeing what it looks like then. the oncologist feels like we all do - for her tumor to be shrinking SO WELL for a year, why would something else pop up? but again, we cant rule out anything 100%, really.

infectious disease came in (no, they dont wear hazmat suits all the time. disappointing ;)) to ask us q's and decide how long she should be on the meds she is on - since she seems to be improving while on the vancomycin (and cefepime, iirc), then it makes us all believe this was a really crappy neuro infection of some kind. that big meds were needed to fix. but we may never have a "name" for it or anything…

tonight we make sure she can regulate her own body temp 100% by not helping her with the warm air poof blanket thing (its amazing and so cozy). so we'll see how that all goes. and wait for ID to decide her course.

thank you for praying  and for loving our reesey so much 



so here we are. i am at the hospital, hanging out (well, she's sleeping) and we have had a very funny day. when i came in, she was taking her diaper off and laughing bc EJ had obviously told her 100x to not do that lol

there's a vid on my IG from this evening - punkfictionv4

we are in some sort of limbo of being happy because of good things - like managing sodiums, holding temps better, smaller tumor. and being discouraged bc of bad things - like "what is that on the MRI?" or "soooo do we know what this is?" but overall, all we can do is breathe easier knowing that she seems to be headed in the right direction - and that the meds seem to be doing it.

corbin is still an inside baby lol which is all that matters right now on that front. no date planned for her right now so whenever she's ready, i guess. she's probably being a good baby and waiting for reese to get home ;)

aidan had her 7th birthday party on friday night! (her bday is this thurs the 19th) - it was so much fun. her first sleepover here at the house. i took a TON of pics for her, so i'll post a separate blog about those when i can. when i get home from the hospital, on the nights we switch, its already so late… ::yawn:: but i cant believe that ill be the mother to a SEVEN year old, in a couple of days. it seems impossible.
so now ill go wake reese up, she can eat dinner, we'll play, make her take meds (lol), and then cuddle up for the night. lucky me :) she's a good small spoon ;)

icemageddon.

i wrote last week about how amazing reese felt. how normal she was being.

thursday was filled with my 2 youngest lovies doing what they do best - being best friends.

then the ice hit. we didnt have school on friday. i let them open up early birthday presents of aidan's (a big craft kit thingy) and play on the ice. reese checked it out, but was happier indoors lol


the rest of the wkend, we were lucky enough to get out a bit… went to the store, to get pizza, drove around very slowly to combat the horrible cabin fever. we did gingerbread trains and cuddled by the fire. cozied up with blankets. we used my belly as a chair. we waited for aidan's tooth to come out (today!!).



but during all of this, i was worried. worried to the point of crying and puking most of the day. reese woke up on, oh, friday? saturday? boogery, but with all the sinus crap going around, that was that. she was just feeling kinda crappy.

by monday, i posted this on reese's fb page:

womp womp. going to legacy with reese bc im pretty sure she has another ear infection - acting the same as she did the last time, gunk coming out of her nose yesterday and still out of her eyes. blech. hopefully its just a med infusion and we are out. i haaaaate when she is sick its the worst to see such a strong girl act so weak.
(aidan is "pulling hair" ^^^ in that pic lol reese's fave.)

on tuesday:

sigh. reesey just doesnt feel good she's SUPER tired - and was on the cusp for needing blood at labs yesterday so we'll go in tomorrow morning, early, and get some blood. i am hoping that peps her up. sometimes its like i forget what kids are like when they dont feel good. so if its "just wanna go to sleep" and weak, then thats reese mixed with low hemoglobin. which just makes it worse. then i worry more. and being 37w pregnant sort of whacks out my emotions to begin with.



on wednesday:

Well hemoglobin down a bit more so we are grabbing blood. Her ANC was 3100 on Monday and today it's 100. Likely a crap virus to go along with it all. I'm hoping the blood peps her up back to close to normal blah.

then…

we got some blood, reese ate some dinner, but is still weak and tired. since her ANC is likely zero right now, and from looking at huge drop, it seems that whats probably happening is she has a virus that she cant heal herself from right now. so she feels crappy, like our "regular" kids do when sick, but then even worse bc its so hard to fight. plus she was paaaale. so the need for blood made her weaker. so my prayer requests tonight are that she is pepped up a bit more in the morning (or we'll be going back to look for infection, check shunt, etc) and also prayers for peace for the rest of us.


and then last night i had already called back again. she was cold. my thermometer wasnt picking up a temp on her - even though it picked one up on sawyer, when i tested it. they said she'd basically be blue that cold - so i said okay and asked when she should feel the blood "pep" - they said if she wasnt acting more normal by this morning, to take her in. so we did. but not before miller got hugs.
when EJ got there, they knew this wasnt normal. reese barely was staying awake. she's shaky and weak. she tries to talk and its just too much work.

its like i time traveled. back to a horrible time a year ago - when she COULDN'T do those things. but this all happened in a matter of days.

they took blood to be cultured, urine sample, etc etc - checking all. they did a rapid MRI to check shunt and all looked good there, as well. EJ said that when the nurses heard she didnt even have to be sedated for the MRI (even though its very quick - you still can't move), they were even more worried - simply bc that's not reese.

i spent a lot of time the past few days wondering if her saying her head hurt or her shaky hands or all of this could be because of the tumor, somehow, compounding out of no where. i cried so much. i didnt eat barely at all. i just stared into space and held reese and wondered… the answer was, it seems, "amanda, thatd be extremely weird." and everything looks fine in her noggin. the brain of a mother is an amazing and horrible thing. its intuition is by far its greatest strength, knowing your child. knowing something is off - but the dark paths it can travel with anxiety and worry can remove all sense of security that you once had.

my fears changed so quickly - to possible sepsis. there is an infection somewhere. and they have to find it. she's getting fluids and broad spectrum abx. taking vitals every 15 mins. watching her BP so closely. her temp was recently 98deg - up from a bit over 95deg. right now, we are just watching to make sure she isnt septic, it seems. watching super closely.

EJ is there watching over our sweet baby. he knows i need sleep - to somewhat relax so i dont have a baby right now. so tonight, aidan and i will sleep in the spots where he and reese normally do. i will try not to stress, knowing that a dozen people have orders to keep their eyes on reesers.

prayers for reese, please, that the antibiotics kick in, that they figure out where this came from, and that reese is more… her, soon. she wouldn't even "squish the spider" today :(  her favorite game on the planet. so instead, i just sang our song to her and let my tears fall on her perfect head.

another reminder that things can do a 180 at any point in time. thank you for every sweet message and prayer today. reesey will feel better soon -- we just have to let the meds work. like always, right? ha.