Follow up EGD

 Lily and I went back to Boston just for an overnight stay Wendesday/Thursday this week. The Boston team wanted to see how her esophagus looked after having the stent out for a couple weeks. 

Our babysitter came over Wednesday at noon to watch Rose and Cora until Joe got home from work, and then Lily and I packed up the van and hit the road. Thankfully, she did great on the 3 1/2 hour drive. The weather was good and so was traffic. She got her standard Covid test Wednesday evening, and we got the call for her procedure time.. not until 2:30PM!! Normally she goes at 7:30am. So we hung out at our hotel Thursday morning and finally headed over to the hospital around noon. 

When the doctor came out to talk to me afterwards, it was all good news. Hooray! Her esophagus was at 10mm. Just for reference, it was at 1mm with her stricture last month. He injected some steroids in the tissue that was still healing a little from the incisions  he made a couple weeks ago. The steroids are suppose to help further scarring. Then he dilated her esophagus up to 15mm. That's the widest it's ever been. He recommended coming back in 3 to 4 weeks for another follow up. If things still look good then, we can push check ups even further apart. We drove home afterwards, and made it home just after 9:30PM. 

We are so grateful for good news and a good trip. Now we need to get to work on oral intake.

Rose was rather clingy today (understandably), but otherwise is doing great. We're enjoying time in our play room and playing outside now that it's warming up a bit. Cora is cruising and very close to walking. She loves giving us hugs and saying hi. Joe and I think both Cora and Lily's first word is Hi :)

Joe is very busy at work. His project is going full steam ahead for the next couple months. 

Hangin at the hotel

The cutest patient ever

Fun at the park with a new friend

Troublemakers

Finally Home

We made it home on Sunday! Lily did great after the stent removal, but later Friday afternoon, her feeding tube started leaking around her skin. They didn't want to send us home until we fixed the problem. We tried a few different things and then on Saturday morning, put her normal G tube back in (she had a GJ in since the stent was placed) and thankfully that fixed the problem. They kept us Saturday night to make sure there was no more leaking. On Sunday, we packed up, got our discharge instructions, and took an uber to the bus station. We took a bus all the way to Bangor. Joe and the girls picked us up when we arrived at 6:30pm. It was a happy reunion! Thank you for your prayers, and please continue to pray as we try to get back into some routines. It's very tricky keeping Lily hooked up to her feeding tube/bag/accessories now that she's so mobile. Part of the problem is that she's back to more of a continuous feed schedule. Because she didn't have feeds going into her stomach (G tube) for 3 weeks, we have to go slow as we start to feed her that way again. The J tube was in so that her feeds could avoid her stomach and go straight to the jejunum. 

We have an appointment with OT in a couple weeks, and I can't wait to get going with them again. Hopefully we can advance her oral intake and start decreasing the amount she needs through the feeding tube.

Stent Removal

 Lily had her stent removed today! Just as planned (for once), Dr. Manfredi removed her 2nd stent after one week of having it in. He also injected some steroids around the scar tissue to help prevent further scarring. He said he was very pleased with how everything looked though. Yay! He also said he would expect her esophagus to narrow a little again, but nothing like the stricture we had a month ago. So we will come back in 2 weeks for a follow up EGD with possible dilation and go from there. I'm very hopeful that this is the last BIG thing, and that we can start moving forward with her oral intake and decreasing her feeding tube volume. Despite being here for almost a month, Lily hasn't moved backwards at all in any of her skills. I'm so glad she tolerated the stent well because she was able to play and learn and communicate just like normal. She even progressed in some things. She is crawling on her hands and knees now instead of just army crawling, she's playing peek a boo and mimicking a lot, and she even did the sign for more a couple times.

As long as she does ok today and tonight, the plan is to discharge home tomorrow (Saturday). We are so ready!

Thank you all for your loving support and prayers! It's been a crazy 3 weeks.

Rooftop garden of the hospital. You can just see the tall Prudential tower

Such a happy girl through all of this

More music therapy fun. Rose even joined in on a video call :)

It was 67 degrees on Thursday!

Stent #2

 Yesterday (Friday) Lily went back to the OR. Dr. Manfredi removed the 10mm stent and made a few more very small cuts in the scar tissue. Then he dilated her esophagus to 13mm. Then he placed a 14mm stent- a little bigger than the 12 we had talked about. He said her esophagus tissue looked good. There wasn't any damage from the first stent. So, all good news! He wants to leave this stent in for just one week. Lily and I will stay here for one more week, and hopefully go home next weekend!

She was pretty sleepy yesterday, but overall is her normal happy self. She's such a trooper!

Music therapy :)

A Success Story

Last summer, I befriended another couple who was here in Boston for their daughter. She was also born with long gap EA and had the foker surgery. Here's a neat article she shared with me about their story. Lily had the same surgeon.

https://answers.childrenshospital.org/arya-foker-process/

Today the word is Friday for Lily's next EGD.

Waiting Game

 Just a quick update to say I still don't know when Lily's next procedure will be. She's tolerating the stent well overall. She usually is gaggy on and off in the morning, often spitting up some. But by the afternoon, she is over that and back to her normal happy self. Even in the mornings she's usually happy (other than the handful of times she gags.) It's very common for the stent to make kids gag. But she doesn't seem to be in pain. Dr. Manfredi has gone back and forth on the plan. We thought up until about half hour ago (4:30pm Monday afternoon) that the plan was to place the larger stent tomorrow, Tuesday. But a resident just stopped by to say Dr. Manfredi wants to wait a few more days since she is doing so well. I'll have to ask some questions tomorrow, because it seems to me it would be better to get the larger stent in and have more time with that. But I'm not a doctor. There's been talk of her possibly going home with the stent and coming back to get it removed, but that is also up in the air. Just going to take it one day at a time I guess. 

So for now, we play with toys in her room and go for walks in the stroller around the unit. I read and drink coffee when she naps.. and that's our day. (Can you tell I'm getting a little bored?)

I'm starting to get pretty homesick, and I know Rosie is really missing me too. Thankfully, Aunt Margeaux just flew in for a week or two. 

Thanks for the continued support!