Today's surgery - CANCELED

 *UPDATES*

6/7

5pm 

BIG Day today! Slight set back. (We expect these now, so it's less of a shock/disappointment.) Tony had an early morning CT scan followed by a small surgery/procedure to have the drain removed. But... the IR team just wasn't comfortable taking it out quite yet once they got him back in the OR. They took some pictures, and everything got canceled/put on hold. (Cue the parental Charlie Brown voice.) Wah..wah..waaa

So, we have to wait another week and then come back for the removal. I'll spare the details. They have their reasons, but essentially pulling it out today COULD have put a "high risk" of starting the drain process ALL over again. We do NOT want that. We will wait. Impatiently at best.

This means Tony will have to go back to work next week (first day back is June 12th) with the drain still in place. (He's bummed). It's like a literal chain that holds him back... or rather slows him down. As you can see from the photo, he refuses to lay down in the bed (which we know further sets him back) and instead does Yoga and stretching, in a gown, much to my chagrin. At least he KNOWS these things about himself now. (I'm the idiot who forgets these medical buildings operate in sub-arctic temperatures and still wear my summer attire with clattering teeth and snot droplets forming.) He's ready to GOOOOO!

(Pic of his disappointed LACK of surgery)

This afternoon, we had another appointment with the gastroenterologist at OHSU, our 3rd appointment for the day. Tony has a long road of follow-ups, labs, scans, and medications. Things are just "different." Even getting lunch today was such an effort because there are sooooo many restrictions that he has to keep in mind. All of you with food allergies/intolerances... I get why you eat at home. #notworthit

We met for over an hour with a new GI doc and it is allll still a mystery as to WHY this occurred. They are running some pretty wild/out there labs to rule out some autoimmune stuff. (My least favorite word, EVAH.) We'd love answers, but we have made peace with the NOT knowing too.

EZRAH...

My sweet empath. Ezzie's pain in her left leg has returned with a vengeance, and so we met with Dr. Bob at Randall's Childrens Hospital again on Monday. She is scheduled for a follow-up MRI AND CT scan, but there's a 95% chance she'll be having a small surgery for the ablation of the osteoid osteoma in late July. I do think she's had another growth spurt. (She's 12 and ALMOST as tall as me.) I do wonder if that could be making it worse.

She takes walks with me and Luna, and she limps again. I don't even think she realizes she does it, and I sometimes wonder if she's just so "used to" pain, that she doesn't realize that PAIN isn't normal, nor is a limp. She's the kindest, sweetest kid EVER, and it literally breaks me that she has to endure this. BREAKS ME. 

For all you THOUGHTFUL (mostly ladies, but I see you gents, too) who look after Tony at VTC, THANK YOU. Please feel free to throw healthy foods at him intermittently. (Nuts, Fruits, Veggies, Dried Fruits, Gatorade Zero, Rx Protein Bars and/or Fish.) GI recommends the Mediterranean Diet. Heck, slap him with a fish. I dare ya. Anywho, just remind him to eat and take breaks. Threaten him that you'll send me in with my new fancy scrubs, medical coat and rubber gloves. Is it weird that I have some trepidation of him going back to work? Is this the feeling one gets when sending their child to kindergarten? It makes me *nervous* but, I know how you all care for him. That gives me peace. It's just going to be so so so so weird. I actually think I'll miss him terribly. TERRIBLY. I'm going to NOT be ok. This is all so hard. *waves white flag*