The (Long and Winding) Road to Recovery

Lily is post op day 2, and she's doing great. Tomorrow afternoon is when they plan to stop the paralytic medication.  Thankfully,  that one doesn't need to be weaned. They just shut it off. Then they will start weaning her other pain and sedation medications one by one. She's on 3 of those. It can take weeks to wean off of them. If they just shut them off, she would go through dangerous withdrawls. On the 11th, she will have an esophagram to see if there are any leaks in her esophagus. If everything looks good,  then they can start feeding her through her G tube. 2 weeks after that, they will do an EGD to check things out and see if her esophagus needs to be dilated. It's common for the esophagus to narrow as it heals. Then they will recommend what kind of follow up care she will need. Every kid is very different,  so she might be good for a couple months or more,  or she may need another scope within a week. Regardless of all that, she will likely need to stay hospitalized through the end of August. As Joe mentioned in the last post, that poses some difficult questions for our family logistically. We only have our apartment through the 15th. After that, we'll have  to figure out a different housing situation and whether or not we want to keep the whole family here or go home and one of us come back later. We're leaning towards the latter because of  job situations and wanting Rose to get home.

We are so thrilled with how successful her surgery was, but also a little shocked by how long recovery is expected to take. It makes sense to us now why she needs all the extra time,  but we just weren't prepared for it. We ask for your prayers as we have to make some difficult decisions in the coming weeks, and we thank you for all your loving support thus far. 

I'm so excited for her to start waking up and to see her big blue eyes again! Cora is doing great. She's starting on some solid foods which has been fun. Rose is doing well overall,  but has times where she is homesick and bored of apartment life. She has been acting up a little more lately, which I can't blame her for! It's been a big adjustment for all of us.  We have been blown away by the support from family,  friends, and coworkers. Financial gifts, gifts for Rose, supportive messages, calls, letters.. we appreciate it and love you all very much!

Heidi

Sorry if this is hard for some of you to see. I won't post more pictures like this, but this is our brave warrior.

Lily Is Whole!

Hi Everyone,

It might be a little early to be putting it out there, but what the heck..

Lily has a whole esophagus!!

They told us yesterday to expect that she would be back in her room around 4pm-ish today. We found out at 11 o'clock that they were comfortable going ahead with connecting her esophagus ends. They didn't see any sign of infection and there was enough length that they could do it without too much tension on her esophagus. At 11:30 they said the connection was made and that everything had gone about as perfectly as they could have hoped! The connection was made, they had good blood flow through her esophagus, and they were closing up.

At this point, they said they plan to keep her paralyzed for a few days so that she's perfectly still and her esophagus can heal and acclimate. It will probably be about a week before they will extubate her. 

-Joe

Big Day Tomorrow

Hi Friends,

Well, tomorrow's the big day. After a bit of an up and down day, the final call was that Lily will be going to the OR tomorrow. It's still not a guarantee that they'll actually be able to do her connection tomorrow, for a couple reasons.

First, she's been spiking a fever off and on for the last couple of days. The good news is that they did a blood culture and so far nothing has come back, meaning theoretically, no infections. Also, they started her on some broad-spectrum antibiotics just in case. The doctor said it's entirely possible the fever is just her body's reaction to the blood clot. But there's still the chance of them finding infection when they get into the operation tomorrow. If that was the case they would have to hold off on the surgery in order to treat the infection. 

Secondly, there's the chance that her esophagus ends may not be long enough. Based on what they can see from the x-rays it looks like it is long enough, but it's possible that when they trim back the ends to get rid of damage from the stretching there may be too much tension to connect them. If that was the case they would have to reinstate the traction again for a few days to get some more length.

The surgeon said he is cautiously optimistic, due to what he's seen and his experience, that neither of those things will be the case tomorrow and they'll be able to go ahead with the connection as planned. Lily is the first case tomorrow, so we should know pretty early in the day in which direction things will go.

Also after discussion with our surgeon here, it came up today that even best case scenario it's possible that Lily could end up needing to stay here in Boston for up to a month..after tomorrow's operation. That's twice as long as we were anticipating our "best case" being and presents a lot of logistical issues for our family. We're working on our plan-B, with several options..none of which are particularly pleasant. So our hopes and prayers are that somehow things work out that we'll all be able to go home together in a couple weeks, but we also need to somehow be ready for the fact that that may not happen.

Blood clot

So shortly after I posted yesterday's update,  Lily decided to spice things up a bit. The nurse was having to give her a lot of extra meds to keep her sedated and comfortable. We were racking our brains as to why she was not as sedate as the day before. She started checking on Lily's dressings and noticed her central line dressing was wet. She called the doctor and another nurse in and they investigated some more. When the dressing was off, it was pretty clear that the line was leaking.  That's not good because she was getting her nutrition and all of her meds through that line. Explains why we couldn't keep her comfortable! She wasn't getting all her meds. They did a chest xray and the position of the central line looked ok, maybe a little high. We also noticed that her right upper arm looked swollen. Her central line is in her right neck. They did an ultrasound which showed she has a clot at the tip of the central line. So they increased her lovenox dose (blood thinner) and put a PICC in her other arm. So now she's getting all her nutrition and meds through the PICC and they should be able to take the neck central line out in a couple days. The doctor said it should only take a couple days for the clot to break up and dissolve.
Her surgeon was also there yesterday afternoon to check out the central line,  so he did her next stretching while he was there, and he also said they are planning on surgery on Tuesday morning instead of Monday. One more day to wait.

Today Lily is very comfortable and having no issues,  thank goodness! She'll stretch one more time over the weekend and then surgery on Tuesday. That won't be as long as the first surgery. Only half the day instead of all day the doctor told me 😂
ONLY half a day ..🤦‍♀️

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