Successful Stent Placement

Good news! Dr. Manfredi was able to place the stent without any issues yesterday! He said her esophagus was down to 1 or 2mm in diameter. He made some incisions in the scar tissue, dialted her esophagus up to 10mm, and then placed a 10mm stent (all endoscopically). He said that most likely, she will go back to the OR next week to have a 12mm stent placed. He didn't want to push her esophagus too far yesterday. He also changed her G tube to a GJ tube, so she is currently getting slow, continuous feeds to the jejunum. The nurses are giving her tylenol and ibuprofen regularly to stay on top of pain, and also zofran to help prevent nausea. It seems to be working well because she is her normal happy self this morning. She also slept good last night. 

They did a chest xray right after the procedure to verify the stent placement, and then they will check subsequent chest xrays every couple days to make sure it's staying in the right spot. A Physician's Assistant, PA, came to check on her while she was still in the PACU, and he told me that he was really encouraged by what they saw during the scope. He said it was amazing to see the difference in her esophagus from before the incisions to after, even before they dilated. Just the incisions made a big difference. So I am very hopeful that the combination of incisions and stents will get her esophagus to where it needs to be. 

Thank you so much for all your prayers yesterday and continued prayers for the next few weeks. 

Joe is holding down the fort at home. He's been working while our babysitter watches the other two during the day. Today, his mom, Wendy and youngest brother are flying in to stay a few nights. I'm so grateful for their help, and I'm so glad for Rose. She's been missing me and I know this will really cheer her up. 

Love you all!

Before her procedure

Recovering in PACU

Snuggles back in her room

Surgery Plans

 Tomorrow is the big day. I just talked with the GI doctor who will be doing Lily's procedure tomorrow. The plan is to dilate her esophagus a little to see how much it will stretch. Then he will most likely make a few cuts or incisions in the scar tissue in her esophagus to allow it to stretch more. Then he will place a metal stent that will stay in her esophagus for about a week to help keep it stretched open. The stent can be uncomfortable, so they will give her pain meds and anti-nausea meds. They also plan to change her feeding tube to the type that goes just past her stomach (called a GJ tube). That way her feeds can bypass her stomach and she will be less likely to reflux or have discomfort from a full tummy. After a week, they will remove the stent and most likely place a larger stent to stretch her esophagus even further. She may stay in the hospital for one more week and have it removed, or there is a chance she could come home for a week or two after the larger stent is placed if she is doing well and handling the stent well. We would come back to have it removed. Then she will have a follow up EGD within a couple weeks. 

There is a chance that she won't get the stent placed if the incisions cause a leak in her esophagus. It's not likely, but still a possibility. Then she would need something called a wound VAC that would help keep her esophagus dilated, but also suck out anything that leaked out of her esophagus. Not the ideal route.

We are praying things go as planned for a change. Lily doesn't usually stick to the original time line or plan, so we are not feeling too optimistic to be honest. If the stenting and incisions don't work, she would need to have the scar tissue resected, and her esophagus restretched and attached all over again. I don't want to think about that right now. Just going to focus on one day at a time and pray that things go well. The staff here at BCH have been great so far, and we're grateful that she is being cared for so well. 

Early Admission

 What a night. Lily and I are at BCH a few days ahead of schedule. She started showing signs of a stricture at home. She spit up her puree carrots a couple nights ago, and then yesterday she was really struggling to swallow her own secretions (saliva etc) when she woke up from a nap. I called the EA team in Boston and they wanted us to bring her down to get admitted for observation prior to her surgery on Tuesday. She spiked a temp yesterday afternoon, but it's back to normal now. They checked labs and a chest xray, and everything looks good. They just want to monitor her to make sure she doesn't aspirate any of her secretions and end up with something like pneumonia. 

Joe drove Lily and I down here while his amazing boss, Phil and his wife came over to our house to watch Rose and Cora. When we got to southern Maine, it started snowing and by the time we were in Massachusetts, it was a true blizzard. We drove about 40mph the last hour. We are thankful for 4 wheel drive and a safe journey here. We had to be admitted through the emergency room, but they at least knew we were coming, so Lily had a room reserved on her old floor, 10 East. They checked her vitals, labs, and chest xray, started an IV and after a couple hours in the ER, we got to her room about 2AM. Joe drove home and made it safely, although he had to stop for a quick power nap a couple times. 

Lily is acting like her normal self this morning and looks great. The plan is to just keep an eye on her until surgery on Tuesday. Thanks for your prayers everyone! 

Surgery Date

 Hello,

Just a quick update to say Lily's surgery is schedueled for February 23rd. I haven't talked to the surgeon since we were there a couple weeks ago, but the plan is still to place a stent in her esophagus for a week or two, remove it, and then send her home. I am planning on staying there with Lily the whole time. Joe is going to drop Lily and I off at the train station in Brunswick on the 21st. We'll take that to Boston and catch an uber to where I'll be staying. I got in at the hospital housing which is really nice. It's just a few blocks from the hospital, so I'll be able to get to and from the hospital quickly. 

Joe's mom and brother are coming out for a few days, and his sister in law is coming for a couple weeks. We are so grateful for their help with Rose and Cora and for their flexible jobs!

Thanks for your prayers! I'll keep the blog updated during her stay. 

Back to Boston

 Hi Friends,

We're back in Boston, our favorite place in the whole wide world! (Italics is the font of sarcasm you know). After Lily's last dilation in Grand Rapids, they told us she would need another one in about two months. That put us in Maine, so we scheduled it at BCH. After a whole lot of back and forth with insurance issues (which is a whole 'nother blog post for another time), we had everything set up and made the drive down yesterday. We had good roads and made it the three and a half hours nonstop, after a semi-rough start while everyone in the back seat got settled in for the drive.

We had to go to BCH yesterday so they could do her pre-op assessment, and also a covid test. She was scheduled to be first in line today at 6am. So of course I'm thinking, great, go in and get dilated a few mm and be on the road home by this afternoon and go on with our lives. Then Lily pulled her usual "ha, yeah, about your plans...".

The Dr came out and talked to Heidi and said Lily had dilated down so small, they were shocked that she has been able to take anything by mouth. They dilated her back up to 8mm this time.

Based on her condition today, they want to go the next step further and do small vertical incisions on her inner esophagus lining to encourage it to stretch/stay stretched and also place a stent in her esophagus.  The Dr. said we should schedule surgery within a month. Probably place the stent, then one week later place a larger stent, then take out after 2nd week. It's possible she could go home before removing 2nd stent, but not guaranteed - depending on how she takes it. So sometime in the next month, we will have to bring her back down to Boston and she'll have to stay for a week or two. And I'm sure after the stenting they'll want to see her again soon after that.

So lots of time in Boston, and on the road between Bangor and Boston, for all or some of us in the near future.