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…
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…
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.
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.
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 ;)
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.
You must be Superwoman! You are dealing with the scary things in your life so graciously and courageously. Thank you for inspiring me to be a better person each day! Praying for your family!
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