Friday, February 25, 2011

Quick Update, Post-Op

Bridgette is out of operation. It was quick... but not quick enough!

The hardest part of this operation was saying goodbye. When she was 7 days, we didn't get to say goodbye before surgery because Jeff and I were quarantined. When she was 1 year old, she was timid before surgery but didn't really know to be upset. Although the procedure was less invasive/scary for me this time around, *she* was a lot more vocal and very sad. Goes against my nature to walk the other way when she's calling and reaching for me.

By the time they called me into post-op, she had already woken up. I came around the corner and the nurse sitting with her said, "Oh! There's mom!" She sounded relieved.

From that point until now, Bridgette's been spittin' mad. Sometimes literally.

She's screaming at everyone, yanking her arms and legs and wrenching her head away at every necessary follow-up: temp, flushes, PulseOx, blood pressure, meds (new meds! bigger fight!), etc.

At least we know her vitals are good.

In fact, she was just asking me for food. She hasn't done that in days. And what did she want?

"Mom? Mom? . . . Meat."

"I'm sorry sweetie... you can't have meat right now."

"Umm... cheese!"

Yep. Meat and cheese. :)

She had to settle for a popsicle.

Now that's partly because, despite all the irrigations, when Dr. Miller administered the anesthetic and Dr. Black began his work, apparently she gushed and gushed... fluid, gas... it all came out. Well, we hope so.

So maybe that was partly responsible for her sudden appetite.

I was able to talk to Dr. Black before the op for more details and info. Apparently she was switched to a new antibiotic (glad he told me, no one else did) and the combo of that and the Botox has enough accumulated anecdotal evidence that he hopes we'll see some success. He specifically said "anecdotal evidence," so that's "proof" enough that this is a fairly new procedure.

The good thing about these injections is that there is some evidence... no, "anecdotal evidence"... that it could be helpful. Or not. But at least it won't be damaging, so it's worth a try.

Now from other HD moms whose children have had Botox injections, they say it lasts from 6 weeks to 6 months, dependent on ... who knows what? Dr. Black is hopeful this will be a one-time procedure which really surprised me. That may be dependent on whether she can be potty-trained before she would need a new injection. Given her extraordinary will-power, I know she will be potty-trained before she needs another injection... *if* she wants to be. If not, we may be back.

Speaking of being strong-willed, the anesthesiologist asked me if I wanted him to switch her IV to a new vein while he had her sedated. I said, "Absolutely!" Well, I guess he waited until she was in the process of waking up before he started.

Bad idea.

He was trying to find another vein in her right hand (to leave her left hand free since she's left-handed), but he told me she fought him so hard he had to pin her down and pick the easiest vein he could find. "Sorry," he said, nodding toward her freshly IV'd left hand, followed by, "She's *really* strong."

I agree. She is super strong. And except when she's fighting me, I'm glad for that. :)

Now we wait to see if the new antibiotic and the new procedure help her to feel any better.

Oh, also, I asked Dr. Black to order a another sample to culture for norovirus. I didn't think to ask until he'd come into the op-waiting area to give me an update, so we didn't get to use any of the super-jet. But he agreed it would be a good idea, so I'll collect a sample tonight during her irrigation.

I took some photos/videos, but I don't have a way to download them at the hospital, so they'll have to wait.

Right now she is watching "Invasion of the Tinysauruses" (for the third time today, second time since surgery). Post-op she's had two cups of juice, one popsicle, and is now munching on some Cheerios. I hope it stays down and actually gets digested/absorbed, so we can start considering going home sometime next week.


Tammy and Alvin said...

Wow, Kel! I don't have the right words to say. We love you guys and admire your strength. Hang in there!

Anonymous said...

Happy to hear the procedure's over and that Bridgette's got an appetite. Hope this does the trick!


Lore said...

Ditto to Lynn's comment. Love you guys, and hope you get some rest tonight.

Paul said...

She is a strong little one and that's such a good thing!! And I'm so glad to hear she's eating - that seems like a good start in the right direction. We'll continue to keep you all in our prayers and give her a big kiss, knuckles, what ever she'll take from her Auntie!

Tiffany W. said...

Kelly you sound like an amazing mom... and Bridgette an amazing little girl! I pray she gets the proper help she needs, recovers quickly, you have the strength to keep going, and you all get to go home soon. I hope you can feel our prayers and love. XO.

Anonymous said...

You guys are such strong and amazing parents. Hang in there. As a hd mom, I know one day my son may encounter similar complications after his pull through. Kelly, u and baby b are very courageous. wishing baby a quick recovery & that you allcan go home soon. Take care!