Thursday, March 20, 2014

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.

reese march sepsis3

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?"

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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).

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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.

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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.

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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.
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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.

3 comments:

  1. The love of those sisters......how oh how did you create that......AMAZINGNESS!

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  2. Such a beautiful post filled with so, so much love. I am SO glad Reesey is home where she belongs!!

    Now, when you say "break", do you mean she'll start chemo again like in the fall?

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  3. Enjoy the summer! Happy you are all home.

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