As you probably heard, Ruby's surgery was canceled today. Monday we went in for the arterial embolizing with Dr.Taussky p.s. he and his nurse, Summer, are a.mazing. They are very concerned and personable. I'm impressed with the care they've shown us. And we couldn't have asked for a better anesthesiologist, Dr.Lu. Anyway, besides having the surgery delayed 3 hours, it went really well. Ruby was discharged early from the PICU on Tuesday morning (thankfully-a toddler hooked up to cords and machines its not super fun) and we had an ultrasound on her mass before we left. They concluded that there was still considerable blood flow to the mass, but there weren't any veins to embolize. Ruby had had a cold since about Christmas Day, but I didn't think it was more serious than that. Tuesday after a loooong nap she woke up with 103 fever. It broke before bed. The next day after her nap, fever of 104. She went a little over a day without a fever but had a low one before bed tonight. We were supposed to have bloodwork done yesterday before surgery, but before that Dr.Grimmer asked us to have her tested for influenza. After 2 1/2 hrs up at Primarys yesterday we found out it is RSV (thank you Meagan for taking the girls!).
So, no surgery for our little lady. It was an emotionally/mentally rough day yesterday. Ironic how waiting makes you tired. And then the disappointment of not having surgery and have RSV was quite the combo. In addition, Siri, Jane, and I have all taken turns being sick since Dec 22nd. It was disappointing of course to have this past week be fairly blah, but better now than when Mark is out of town or having the sickies on a family vacation. Thank you Mom for having us for dinner, it was good to get out of the house.
I'm sure glad we have cell phones and texting and email, it has made it much quicker and easier to communicate with the doctors. Ideally doctors would wait 6 weeks for a patient to be healthy to administer anesthesia. Dr.Taussky said the glue they use to embolize is permanent, but the blood will form new vessels in time. He said within 4 weeks would be better. Me? I say next week. But I'm the mom, the one with her everyday looking at this huge vascular mass on my baby's neck that is not doing anything but getting bigger. I'm so good at my job though, amazing really: #1 worrier. All the clinics are closed until Monday, so I'm hoping I'll hear from someone by then.
On a happier note, my beauty Jane had a birthday on December 31st. I'm thankful we had that to force us to have fun :) There was swimming at Murrary indoor pool, ice cream, watching Frozen, and jumping at the Wairhouse. She was spoiled with gifts! The day before her birthday she got to do some shopping with Grandma Carol, then it was fun with the family on her birthday, and today she got a special date with cousin Sam and Aunt Liz, and Grandma Sandy and Papa Milt stopped by with more gifts. You want to see what a birthday and Christmas looks like if it exploded? Come look at the girls room. Good thing tomorrow is Saturday: Clean your room day.
Sister Jenn and her family made it to their new home in California. She sent a few pictures and they look so happy. Happy to be in warmer weather, and to not be driving anymore, and to have their own beds to sleep in! When they left last Sunday I gave her a short hug. The longer the hug=the more crying I do. Sure do love them.
Today I took Siri up skiing, first time this season for both of us! It was sunny, really sunny. Warmer than here in the valley, and beautiful. We just did the rope tows for a while, but it was enough to refresh my soul.
Its 10:30pm and although Mark is out touring with his splitboard and Dan somewhere, I'm ready for bed. Yes, they are out right now, at night, in the cold but by the light of the moon. As hard as its been to not have this weekend go as planned, I'm glad to be home, to be safe, and to be healthy. I'm looking at Ruby in the video monitor (get one if you have a crib sleeper, they're awesome!) and I'm so thankful to have her. Praying that RSV will give me my happy kid back sooner than later, that the doctors may make a new plan to do surgery, and that she will be ok in the meantime.
Thanks for your love and concern.
the snow made up for all the sickness on Christmas!
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