Progress

Lily had another traction increase yesterday and the surgery team is confident that she will be ready for the second surgery on Monday!! Her gap is only 4mm right now. She will have one more stretch tomorrow,  and then have the weekend to rest. They've had to increase her sedation and pain meds a couple times because Lily is trying to wake up. Otherwise,  she's doing great and can't wait to get on with the next step!

We did a few fun things this week. On Tuesday,  Joe, Rose, Cora and I went to the New England Aquarium.  It was pretty cool! The interactive exhibits were closed still, but we saw some really amazing animals. One of the highlights was a huge sea turtle. Rose enjoyed it, but her attention span might be a little short for this kind if thing, haha.

Yesterday was my birthday. I had a fun morning at a park with Rose and Cora while Joe was with Lily. Joe surprised me with flowers, chocolate, and cider (what a guy). We went out for dinner to Guy Fieri's Tequila Cocina for tacos and margaritas (well joe had a beer). It was delicious! We had cake for dessert and watched a movie. It was a great birthday! Oh and today is opening day for baseball, so that's great too 😁

Slow and Steady

Lily had her second increase in traction today. It's so crazy/weird to see. It's like nothing I've seen as a nurse before. The surgeon cuts little pieces of a feeding tube catheter (thin, flexible tube) and slides them under her sutures to increase traction until there's a pyramid of little tubes. He calls it reverse jenga, ha! He first pulls on the sutures a little bit to see how much give there is. He showed me her latest chest xray, and it showed her gap decreased by several millimeters.  Yay! He said she'll probably be ready for the second surgery sometime next week.

Lily needed her ET tube or airway  tube advanced a little again today. She didn't like that. Her heart rate and blood pressure jumped up and her oxygen saturation dropped for a minute. Soon her numbers were all back to normal,  but I hope she doesn't need that done again! The nurse and respiratory therapist both said you can tell she's fiesty 😁 Thankfully nothing else eventful today. Physical therapy stopped by to do some range of motion,  and massaging to help with her swelling. She also got another diuretic to decrease her swelling.  Poor thing was still very puffy this morning.  I can't wait until she's off the drugs and back to her normal self!

Tomorrow we're going to take a break from the hospital and do something fun with Cora and Rose 😊

Cora and Lily are 6 months today!

We found Cheers!

We went for a walk to Boston Public Garden

Stretching and Resting

Hello Friends,

So far so good after surgery on Thursday. The surgeon said that once they got her esophagus "loosened up" (apparently it was kind of attached to surrounding structure) her gap was actually only about 2cm. He said even so, with 2cm vs 6-7cm, he "wouldn't focus too much on the numbers". He said it will still probably be around 2 weeks of stretching, though it could be more like 7-10 days. It just depends on how her body handles the stretching process and how responsive her esophagus is. He did say that her esophagus was relatively stretchy, which is good and puts her into more of a "slightly better than average" position.

They have her sedated, paralyzed, and loaded up with pain meds. There were some issues with her breathing tube yesterday so they had to call in the Respiratory Therapist and the floor Dr. and get an x-ray to adjust how deep the tube was going down her trachea. At one point there were around 5 or 6 people in the room with us and it started getting pretty crowded! But they got it sorted out and she was fine.

Today they did the first traction adjustment on her esophagus. They pump her up with morphine and then roll her over on to her side so the surgeon can adjust the tension on the sutures going to the upper and lower sections of her esophagus. They did another x-ray afterward, but I didn't hear what the result was as far as the gap. I'm guessing they show them to the surgeon and then he'll talk to us tomorrow about the result.

All in all, everyone keeps saying that she's doing good, no issues. Just have to wait out the next 6 to 13 days and then we'll be able to see her big blue eyes and big smiles again. 

Rose is doing well, but I think city life is starting to get to her. She's used to being able to run out our back door and run around the yard, more or less whenever she wants. Here she spends a lot more time in the apartment, and when we do go out she has to ride in her stroller until we get to a small "park" where she can stretch her legs some. It's far from our "normal"! 

Also, we're really appreciative of all the financial support from friends leading up to this because WOW is stuff expensive here! A two-topping pizza, $25. Donuts from a bakery (not Duncan which is on every street corner) are $3-4/each. Hospital cafeteria lunch will run you about the price of a meal at Applebee's. All I can make of it is that apparently everyone that lives in Boston, between the cost of housing and groceries, must be making about $200,000/year.

Guess that's all for now, till next update - 

-Joe

Surgery Part 1

Wow what a day. Lily spent almost 13 hours in the operating room. I got to the hospital at 6am and was able to get some snuggles in before they took her to surgery at 7:30. Two surgeons, an anesthesiologist, and a nurse practitioner came to talk about the surgery shortly before she left. The first part of the surgery was completing an assessment of her anatomy. They did a bronchoscopy and some imaging to create a game plan for her surgery process. There were several different ways it could have gone. What they found was that her gap was a little bigger than we thought. It was closer to 6cm versus the 4 to 5cm our surgeon saw at her last gap study a couple months ago. They also found she has tracheomalacia. They explained to me before surgery that this is very common in kids with EA, and that if they found she had it, they could fix it most likely during the surgery. And that is what happened. Essentially, it means her trachea was loose or floppy, and it needed to be sutured to her spine in order to keep it from collapsing when she coughs. It's hard to explain, I'm sorry. So they sutured the trachea in two different places to her spine. The surgeon said that will most likely fix the problem. Sometimes they have to go back in a second time to further fix it. Boston Children's Hospital website for Esophageal Atresia has some really informative videos for anyone who is interested in learning more of the details.

After securing her airway, they put sutures on both ends of her esophagus. The sutures are outside of her incisions in two places. One for the upper esophagus and one for the lower esophagus. Every couple days, they will increase the tension on the sutures in order to strech both ends until they are close enough to attach. It usually takes about 2 weeks. Unfortunately, that means she will be intubated and sedated for that whole time. It would be very bad if she was awake and pulling on the sutures. After the two ends are close enough, they will take her back to the OR to attach the two ends, and then they can start weaning her off of the sedation. They will monitor the progress of the stretching by xray.
Sorry if this is very confusing. I'm a little overwhelmed myself with all the information we received today. We'll continue to update the blog with her progress. She's back in her room finally after 13 hours and doing well. The surgeons were very pleased with how everything went. They said the esophageal tissue was healthy. Thanks for all the prayers, texts, and emails of support.

Before surgery 

From a booklet I got today

Family walk

Rose loves her sisters 😊

Lily made it!

Lily went for an airplane ride today! She took an ambulance to GR airport,  then flew to Boston airport, and took another ambulance to Boston Children's Hospital.  I got there just as she was arriving.  She did great on the trip they told me.  The flight nurse even sent me some pictures 😊

The nurse practitioner checked in to say tomorrow they will do a few scans and then the surgeon will decide on a game plan.  I'm really looking forward to chatting with the surgeon to learn more about the procedure. The current plan is surgery on the 16th.

Getting ready for take off

First flight!

Happy at children's hospital 

Got some snuggles

We Made It!

Hello Friends,

We just wanted to put out an update to let everyone know that we made it to our new living space in Boston. The trip out here actually went better than I had expected with the girls being in the car for so long. We stopped in Rochester, NY Sunday night and Rose got her first hotel experience, as well as her first pool experience, so that was fun. We didn't even think of it until we were almost there, but due to Covid restrictions, they wouldn't allow guests from certain states. Thankfully Michigan wasn't on their list of blocked states. Phew!

Getting into Boston was about as bad as I expected. Pretty tense drive navigating the streets and tunnels to get to the apartment building. But we made it, got unloaded, and got the rental returned without getting into an accident or causing a 50 car pile-up so I'm calling it a major victory, haha.

Lily will be getting flown from GR to Boston, ETA around 4-5 this afternoon. She'll be flying out on a Lear 35 with AeroCare, an air ambulance company based out of Chicago. That's good because it will give us most of today to get somewhat settled and find our way to the grocery store and such.

The apartment the hospital set us up in is very nice. 2 bedrooms, 2 bathrooms, with a decent amount of floor space for Rose to run around. I can't believe how insanely expensive living space is here. On the market, this apartment we're in goes for around $2,300/month. I looked up the companies website and found out a 3 bedroom on the 38th floor goes for $11,233 A MONTH...yes...A MONTH. Guess I won't even bother asking for that upgrade..haha!

We'll be taking the subway "the T" from here to the hospital, and there's a station right next to the apartment building so that's nice and convenient. Also, Boston has a city bike-sharing thing set up (BlueBikes), and there's a bike rental stand right by the apartment too. So if we're so inclined we can use that too.

A huge thank you to everyone for their support, gifts, and encouragement that got us this far. We can't tell you how much it means to our family, and what a huge blessing it has been/continues to be.

-Joe

Lunch stop on our way here

Fighting off sleeping

She claimed this bed as soon as we got in our hotel room in Rochester

First pool experience!

The one picture I snapped on my hike from the rental car return back to the apartment

Almost time to go

One more week! We just found out that insurance authorized Lily's flight to Boston. Good thing we had almost 2 months before the trip out there,  because insurance moves slowly. Last week, her inpatient stay, her surgery, and out of network care were all finally approved.

We are most likely getting a different apartment through the hospital's hospitality program than we originally thought. At first, they had us in a one bedroom, one bathroom apartment with no parking. I got a call yesterday saying a family had cancelled their trip, so a 2 bedroom 2 bathroom apartment with parking opened up and they are charging us the same price as the smaller one! The only downside is it's a little farther away from the hospital.  But it is right next to the subway station, a grocery store, a pharmacy,  and lots of restaurants.

I found out a few days ago that my coworkers donated enough PTO hours to me to cover my time away. What a week of blessings! Our plan is to leave Sunday July 12th bright and early. Joe, Rose, Cora, and I will be loading up our van and driving out together. We're hoping to make it a little over half way the first day, stay the night in a hotel and then drive the rest of the way Monday. Lily will arrive Tuesday the 14th. At first, we thought she would be flying out on the 13th, but we're kind of glad it's the 14th now so that we can already be there and be ready to welcome her at the hospital. Well, one of us will be. Cora and Rose will not be allowed to visit the hospital because of COVID visitor restrictions, so Joe and I will be taking turns going to the hospital and staying in the apartment with the other two girls. We are brainstorming fun things to do with them, but that may be one of our biggest challenges.

We had a little trial run driving with the girls this past weekend. Joe, Rose, Cora and I drove to Caro to visit the Cotton fam for the 4th. Cora did great! She either slept or was happy playing with her toys for the whole 3 hour drive. We stopped once to feed her. Rose did well too. On the way home she was bored, but over all it went very well. We're hoping that it will go that well next week too.
My parents came to visit us a couple weekends ago. It was so good to see them too.

Please pray for our final preparations this week, for the drive out there, for Lily's flight, for a smooth adjustment to a very diffent life style and routines, and of course for her surgery and recovery. We love you all and can't thank you enough for all your support.

Only a couple more days left together!

Sleepy Lily

Cora loves joining us at the table for dinner

Lily looks good in denim

Rose had so much fun at Grandma Wendy's house

Great Grandma Lassiter and Cora

Grandma Wendy, we love you!

Road trip!

Smile for Daddy!

Love this girl