May 30, 2019
May 30th. 7 months since we brought Julia to the ER the day before Halloween with a stiff neck.
She had a decent day. Vitals are fine, counts are rising. We THINK secretions are improving on the new medication. They upped the dose a bit more, and still have room to go if needed. But her nurse today said she's WAY better than she was a week ago - last week it was just a constant waterfall of snot. Today was much better. She threw up mucus several times, which isn't fun for anyone, but maybe slightly less in general. (Went through four gown changes!)
She's continuing to make noticeable progress physically. When I got down there today, she had her coloring table over her lap and was going on a 2 hour color session =) And at one point the table was at her feet, and she started pointing and waving at it. We asked if she wanted to color and she nodded yes. And Reed asked if she wanted to sit up, and she said yes again! She NEVER said yes to being moved because it always caused such pain. But now Reed can scoop her up and prop her more upright in bed, and she does it willingly with a big smile on her face! It is SO NICE knowing we're starting to be able to move her around without hurting her <3
Reed also showed me her fancy new skill - she gets her iPad after string/trach changes now, and right from the Home screen she knows how to get into YouTube and immediately find Peppa. It's adorable! She's got such great control over her right arm now.
And we had a meeting with our case manager about how training is going / discharge planning. There are no dates set, but we now know that IF chemo wasn't a factor (it is), and IF home nursing wasn't a factor (it is), she is apparently medically stable enough to be discharged like... now.
So that was unexpected. Probably why they've been really pushing the training schedule.
The issue with coming home right now is how her chemo affects her home nursing requirement. She'll be starting round 7 "next week or so", and I guess she has 12 officially on her chart. (That's the first time we're hearing an actual number.) That means she is halfway done this chemo treatment (yay!), but she has 6 more to go. Each cycle, she will likely be inpatient for the 5 days while it's being administered, and then when her counts hit zero they will also want her back for observation. Her chemo cycles are turning out to be about 3 weeks in length. So, the problem is home nursing schedules. Apparently, nurses don't really like signing up to work 1.5 weeks out of every 3 (makes sense!) So even though Julia may be medically ready to go home... it will be difficult to find home nurses who will accept her case because it's not great hours while she's on chemo... which is at a minimum 6 more cycles.
So our team is going to put together what a calendar realistically might look like, and they'll put it out there to agencies and see if anyone is interested in the not-awesome schedule. If they DO find nurses, and Reed and I get certified with the trach, I guess Julia is ready to come home at any time!
I'm not getting my hopes up that it will be like, next week or anything. But it's SO EXCITING that she's medically stable enough to leave, should logistics work out! What a HUGE milestone!
Video tonight is of a coloring toddler... very excited for mommy to color with her <3 Oh, and I almost forgot a HUGE part of today! I held her for the first time SINCE NOVEMBER! I have limitations with my back, and we wanted to be sure she had some strength in her neck built up before we risked anything. So I got to hold her and she snuggled right in <3 < 3 It took a few people to make it happen, but now that we know it can, that will be an every visit thing! I've missed holding my littler girl SO MUCH! <3 <3 <3
. ********************************* ********** Official Links *********** (These are here because of scammers) *********************************
Julia's *only* pages: Website: juliaadamscancerfund.org Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe: gofundme.com/juliasfightagainstcancer
Julia's *only* fundraisers: T-shirts: https://bit.ly/2MQc0lF Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i
Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || Coupon code: danaboyd
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