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March 17, 2019

A decent day today, considering chemo just ended.  She threw up a few times early this morning, but that's it.  Vitals: heart rate 140s, ET high 30s, BP 106/72.   She got a blood transfusion, as has been the norm after chemo - so that should help with her counts.  They also gave her an IV catheter, so they can just give her booster through that for the next 2 weeks, rather than painful shots in her thighs.  Which is great!  (but why didn't they do that last time!?)

Reed slept decently in his new room.  No space to pull out the couch, but he said it was fine (which probably means it wasn't great, but he'll never actually complain). And lots of beeping.  All the machines are closer to the couch, and since she's a new patient to them, they use all their default ranges.  Her 'normal' right now is way outside their ranges - like a heart rate of 155 - so the machines are beeping constantly!  They said they want to get to know her for a day or two before adjusting anything, so I guess that's what's happening.  And of course she's awake and alert aaallll night long, so Reed's usually up keeping her company.  They're going to try to work on her sleep schedule a bit, now that she's out of the PICU.

I guess the plan is to get all the other specialists actually involved in her rehab starting tomorrow (PT, OT and speech therapy). I hope it ACTUALLY HAPPENS this time, because it's been talked about a lot in the past, and then nothing comes of it.  I'm counting on the new resources in the PCU to make something happen.  I just can't wait for her to be able to do something besides stare up at the ceiling.  I want her to be able to SIT UP!  And start doing little things with her hands, even if it's just squishing playdoh between her fingers.  ANYTHING besides laying on her back looking up!

Oh, and she's starting to really hate diaper changes - more than before.  At home she never minded them, and the nurses are SO gentle... I'm not sure why she hates them so much (other than she's just frustrated she can't move).  I didn't know if anyone has experience with chemo causing irritation or something that maybe she can't tell someone about?  Maybe her butt is really sore and it hurts?  (It doesn't look sore - she appears totally fine, but she really gets upset!)  I just want to make her as comfortable as possible.

Tomorrow we meet with the first home nursing company to talk about... well, I don't actually know.  I assume we talk about what they do and why we should pick them.  So I guess that will be a pretty nice step to take.   Julia's just exhausted and has slept most of the day.  I guess the few days after chemo are her most tired, so I expect that to be the norm for the next two days.  And then hopefully some more physical improvements starting later this week as she recovers.  And maybe her first stroller ride!  

. . . ********************************* ********** Official Links *********** (These are here because of scammers) *********************************

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If you're new and want to know what's going on, my first post about Julia was on October 31st. You can find them all on my Facebook page or Julia's website <3

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