Stent is out

And according to the surgeon things look good and as expected. We're on track to be back home tomorrow after she recovers from the anesthesia and they give her a final checkout.

Unfortunately due to some colossal hospital miscommunication we will have to go to Yale early next week to have them take a look at and replace her G/J tube. It was supposed to happen right after the stent removal today.

We won't really know if things are going to be resolved more permanently or the course from here until we come back next Thurs for her first bronch. Still it will be good to be through this and to get back to Daniel!

OT in the hospital

As in Occupational Therapy, not overtime (we hope). Sofia got a chance to play with the therapist as we are waiting (as usual) on her surgery today which won't start until 3pm. She's happy as usual even though she can't walk as she has as IV in her foot.

Mouth suction

Sofia loves to have her mouth suctioned as she can't swallow. She was the same way right after she got her tonsils out too.

Now rotated!

Up and around

Sofia is up and walking around and watching her favorite TV shows. She's still a little drowsy which is good because otherwise she'll be running for the exit! We're in a holding pattern until Fri when her stent comes out.

Sofia is almost back to herself

She still can't swallow as she has her stent in but sh'e sitting up and we had her out and walking a bit this morning. Hopefully by tomorrow she'll be off her IV antibiotics and then is mostly a waiting and healing game until her stent is removed on Fri. We're keeping her entertained with her favorite shows and games which will get trickier as she gets better and realizes she's stuck in her hospital room!

Daniel

Let's not forget Daniel. He's been hanging out with grandma and having a good time!

Dora!

Grandmommy and granddaddy got Sofia a giant Dora yesterday. Here's a picture!



Experts will pick up that she is also watching Dora too!

Playing w the peg

Sofia is more active today and playing with her peg again. She is a bit puffy so they are backing off her fluids a bit and taking her off iv morphine in favor of Tylenol and oxycodone.

Done

Sofia wrapped up a bit early and is now recovering in the icu. According to the surgeon everything went well. She might need some further work around her stoma but we won't know until later. All in all he's pleased with how things went and we will know more when they remove her stent on Fri. For now they are managing her pain while she recovers.

Getting started

After a chop standard 3 hour wait Sofia has finally started her surgery. About 7 hours to go!

On Our Way!

We're leaving soon to go to Philly. Actual surgery is first thing tomorrow and we'll have some idea of how she is doing tomorrow night. The stent is planned to come out the week after on Fri and we'll see how it goes from there.

Wish Sofia luck!

Daniel eating cherries

Daniel loves his fruit and here he is eating his new favorite, cherries!

4 days to go until Sofia's surgery!

We are on!

The surgeon called and said that Sofia's reflux is much better managed so we are on for surgery on the 22nd!

Back from CHOP (again)

It went very well. Sofia was a pretty good girl even with her impedence probe inserted which last time drove her crazy. Other than the stifling heat, things went smoothly and we spoke to the surgeon all about the plan for her reconstruction in 2 weeks!! We'll know the results of the probe soon and that's basically the last piece remaining. Now we are focusing on the logistics of living in Philly for a week or so...

Unfortunately though Daniel came down w/ Strep and Grandmommy and Granddaddy took him to the pediatrician and took care of him while we were gone. Hopefully he'll bounce back soon!

Here is Sofia in the hospital with her probe fanny pack and probe backpack. Lots of gear for one little girl!