Tuesday, December 4, 2012

these are not going home pics.

gah.

yesterday morning, i dropped aidan off at school. i dropped sawyer off at school. i took miller to my parents' house and left the other car seats so my parents could pick A and S up from school.

the plan was for them to be waiting at the house when reese came home.

i went to walmart to get necessities - white board calendar, another big white board for med information, a new trash can for the garage for her chemo diapers. i got reese some minnie PJs since she has been forced to watch so much disney channel in bed.

EJ got the sign off from neuro, endocrinology, and oncology. they filled all of the prescriptions and had them brought up to the room.

then he called and told me that she had puked. i knew what that meant. it was a tell-tale sign that she had swelling in her head. but we just kept smiling and nodding and saying "oh probably too much chocolate milk." but we knew.

her heart rate dropped into the 50-60's. she had slept all night with EJ on the couch - which was awesome, but another sign that she didnt feel well. its exactly what she did at the end of october - a lot of sleeping. and puking. and... just laying there.

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i called my mom and told her that we needed to get reese a "welcome home" sign. so we met at party city. she wanted to get balloons... but i knew better.

i went from there to the hospital and just... felt so sad. she was not coming home yesterday. she was barely responsive to most people, but EJ and i were able to get a few smiles and giggles out of her.
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AND she high-5'd EJ :) good hand and "bad hand!"
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neuro came in and said that from feeling the back of her head, they think the shunt wasnt working properly and that fluid was back there. and that they'd do a CT soon.  the funny part is -- i already knew. i mentioned 2 days ago that i thought the back of her held felt the tiniest bit squishy. mother's intuition, i guess. but we all just sort of brushed it off as "well, a lot has been happening back there". but now, of course, i know. i dont like to second guess myself, but now i am 100% certain to never let that intuition be pushed away - even if i have to request my own scans ;)

CT came back with the confirmation and that we'd do a shunt repair/revision. they didnt know what theyd find wrong, exactly, but they'd try to fix it.

after another brain fluid draw and some drama over the fact that i gave her pediasure before i knew we were doing surgery THAT DAY (anesthesia worries), she went in and they fixed it. seems as if the catheter from the valve to the top was clogged and not working - so they took that out and put a new one in. the dr came out confident and we went to see her in PACU.

Just rubbing #reesey 's back before #surgerysucks #gingerfight

Gotta wear a mask off the oncology floor  #gingerfight #reesey #prayersforreesey #pleasegetbettersoon #surgerysucks
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today is a new day. she is happy and back to smiley reese. she slept off some of yesterday a bit, but ate well - and her DI has been under control the whole time. 3rd session of chemo tomorrow. maybe going home on thursday?

and one smirk from steroid'd up reesey for your night ;)

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14 comments:

  1. You have my continued prayers and support. I'm praying you are home and all together by the holiday. Even if that means extra work now so that within 20 days you are waking up to cinnamon buns and filled stockings on Christmas morning.

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  2. Sweet Reesey......so many prayers continue to come your way.......you will be home soon with your sweet sisters and parents. Much love....

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  3. Never doubt that intuition my friend. It's why you weren't letting the weak hand thing go! love ya!

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  4. Shoot. :( Continuing to pray for you all. I second Sara above--I also learned to be an advocate for my family, esp. when it comes to medical things, and to trust that I knew them better than any doctor could. Sometimes you just have to be obnoxious. As Bernie Siegal says in "Love, Medicine and Miracles", the patients (and by extension, their families) who are the most difficult are the ones that do the best.

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  5. Sweet girl, I hope you get to come home soon. Sending prayers for your family.

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  6. She will be home before you know it! Hang in there! We continue to pray for all of you!

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  7. Mamas ALWAYS know... :) I've been lurking for a bit now, but just wanted to say I started following your blog just before everything happened with Reese, and wanted to let you know you have gained another prayer warrior! Will continue to lift your family up...thanks for being so dedicated about keeping us all updated in the midst of everything!

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  8. GOD bless you all <3

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  9. Ressey you are beautiful! I want you to feel better soon and be back home with your sisters. I am praying for all thing good for you and your family! I am so sorry you are not there yet but don't give up it will happen real soon!!

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  10. Prayers today all the way from South Africa. xx

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