Friday, August 2, 2013

always something.

that doesn't mean bad, necessarily, but really - there's always something.

this week was a combo of a few things. (p.s. these are all IG pics - punkfictionv4)

bottom line - we did too much. i got away with myself this wkend. hearing the horrible news about phoebe on friday night sent me into a "live in the moment" spiral. nothing big, but just... fun things. and while i do agree thats how you should live your life, sometimes i forget... i even took her to PT and OT on monday. thats how sure i was about counts. ha.

reese had really good counts last week at labs so i thought her counts would drop at the end of this week and we'd be at home, anyway, but they dropped a bit early and reese ended up with a tiny fever on monday night. 99-100 while here at the house so I called. last week reese puked once and had bad poops. the week before that miller had HORRIBLE poops - i blamed teething. but then off and on reese had diarrhea and so then with a tiny fever, we went in (actual fever "limit" is 100.4). rocephin and zosyn to the rescue. her counts were low so they admitted her -- to a random overflow floor -- and then we realized there must be something "going around"... too many onc kids there if we were on the gastro floor? and not even on a regular hemoc overflow floor? who knows... but either way. that was that.

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i got there tuesday and was just ::twitch:: for most of the time. it should be easy breezy in and out, watch some movies, hang out, whatever, but with reeese [sort of] having DI, we have to be careful of sodiums. she got 2 boluses of 9% saline in the ER bc she had a really high HR bc of some dehydration - and then her sodiums got a bit high.

now i am pretty good with reese's DI. but a new resident (yeah, its july), staff i didnt know (and didnt know reese), and a very, erm, strict, endo on call made for a stressful tuesday night. they had already switched her saline to 6.75% and then to 4.5% - and still sodiums at about 151 (reese rests good anywhere in the mid 140's) so i wasnt that worried. neither was the nurse. but, sigh, resident and endo were sort of nuts about it.
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i went to the wonderful day nurse towards the end of the shift and burst into tears. all i wanted was for reese to regulate herself - when you put liquid in to a kid with sodium, sometimes the sodiums will rise (sometimes not, so you cant be too sure), but either way, i knew she could lower it by drinking free water on her own. her HR was down so there was no need, imo, for more fluids. the nurse round of the troops and got me fixed up. it just so happened the night nurse is also a hemoc nurse so that was awesome :) reese was able to regulate herself BEAUTIFULLY and even that same endo came in the next day to tell me "you were right. like always..."

thank you.

we got home late evening on wednesday after a long day of reese needing some blood before we left. and now all is good :) counts up and onward we go.

all that to say - who knows if miller gave her the poops or if she caught a small bug, but this wkend really put a smile on my face. reese has really been putting weight onto the weak leg and actually getting into kneeling and crawling positions - its awesome. just one day she did it. the pics prove it!

she didnt really want to go into the pool before, but now she is obsessed. we practice swimming with her bad hand and i have her kick both legs - so the PT aspect is awesome.
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playing around town.
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#sistersarethebestmedicine (we like to facetime, too)
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today i had to be at children's at 5:45am (dont worry. i was late lol - so really 6am) for a 7:30am sedated hearing test. all went well but i am EXHAUSTED from the week. bottom line. i need to curl up and sleep just one day away.

this week was also sawyer's bday, but i am going to do a separate post for that alllll on her own when i finish her photos.

some special prayer requests, besides those amazing reesey prayers - please keep phoebe and her family and "80" (aidan) and his family, in your prayers. i could list dozens of others, but today, my dallas hemoc parents have some breaking hearts.

i never thought id have a "circle of friends" that are constantly updating each other on common friends whose children are sicker, better, dying, surviving, and healing. i didn't ever think i would know (the most amazing) moms who would chat with me about clinic and chemo.... instead of bedtimes and dinner choices. but when they hurt - i hurt :( so prayers that they are lifted up and find peace, however it may be. pray for miracles.

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