Just a quick post to let you know we have the all clear and Scarlett can head home this afternoon. The chest tube is out, and although there’s still some pain from the surgery, she’s feeling (almost) great.

Thanks so much for the many notes and messages. I’ve shared them all with her. We’re sorry we haven’t had a chance to respond to all of them, but we’re so grateful for your kind words and good wishes.

Much love,

Team Scarlett

Whew. What a day. Scarlett is out of surgery and resting. Unfortunately she is in a lot of pain. She’s on heavy pain meds but is awake. The surgeons said surgery went well and they’re hopeful the lung will stay open. The removal of the top part of the lung went fairly quickly, but they decided to abrade the outside of the lung to cause inflammation, which should help it adhere to the chest wall. The surgeon warned us in advance that it would be severely painful for her so we’re all focused on staying on top of her pain meds. They’re going to keep her several more days for observation so the soonest we would be home (best case scenario) is Tuesday.
I need to get some sleep so this will be a short post but I did want to share a happy Scarlett story. When we checked into the hospital, her dad brought her a book with a bunch of stickers in the front. Every single person who has worked with her has picked a sticker (she insists on it). It’s pretty cute to see surgeons and nurses all walking around with unicorns and ice cream cones stuck on their face shields. Anyhow, when she was finally waking from surgery, a pair of new nurses rolled her into her room. I could tell she was trying to say something but her voice was so hoarse it was hard to hear. I leaned over closer and she croaked “get.. the.. sticker.. book”. Heavily sedated or not, she made sure those two nurses were getting their stickers! 😂.

Short version: Scarlett is in the hospital because one of her lungs collapsed this past Sunday. Surgery will be Friday, and we’ll be at Children’s Hospital for awhile longer.

Long version with Shan’s rambling commentary (forgive the spelling, we’re writing this on an iPhone): You know how our family always says “if you don’t laugh, you’ll cry” about the hard stuff? Well, we’re trying to laugh, but it’s getting harder. Here’s the latest: We’ve been at Seattle Children’s hospital since Sunday (today is Thursday). On Sunday morning, Scarlett woke up with chest pain and said it was difficult to breathe. She was also extremely lethargic. Of course, I immediately worried about Covid so we got her to Urgent Care at the Seattle Childrens’ satellite clinic in Everett. If you haven’t been to a clinic or hospital lately, it’s quite an experience. Covid has changed everything; docs and nurses are wearing special sealed helmets with their own air systems and everyone is constantly changing in and out of PPE. They took a Covid test (Scarlett calls it the “brain jab” swab version) and the doctor up there suggested they take an X-ray to make sure it wasn’t pneumonia. They’re seeing a spike in teenagers with severe pneumonia (the teens aren’t testing positive for Covid but the timing is pretty unusual).

They take the X-ray and a few minutes later the doc walks in, races across the room towards me, and very dramatically says “we need to talk!” I’m not used to docs being so animated so I actually thought maybe she was kidding (she wasn’t). The last urgent care doc we saw, who was unfamiliar with Scar’s unique anatomy, saw an X-ray and flipped out about her heart being on the wrong side and plexiform tumors on her chest and airways.  We assured him that was her “normal”, and so I asked the new doc if perhaps that was the case. She looked at me and paused (like she was counting to 10 in her head so she didn’t hit me) and said “see this dark space on the X-ray? That’s where her lung should be”. She suspected a total collapse of the right lung. We had been at the main hospital a week before for an appointment at Orthopedics so I asked if she could pull up the X-ray from that visit. She did and sure enough, the lung was fine the week prior and completely collapsed on the new X-ray. The doc immediately sent us down to the ER at the main Seattle Children’s campus.

We get to the ER and had to chuckle because the check-in nurse immediately picks up the phone and says “the pneumothorax has arrived. I repeat, the pneumothorax has arrived”. Scarlett and I laughed because we thought it sounded like “the Lorax has arrived”. (Also, Pneumothorax basically means “collapsed lung”). They immediately get us back into a room and a doc and nurse come see us. Surprisingly, they were just wearing regular masks and scrubs. About 5 minutes later, another nurse sticks her head in the door and quietly says to them “low fever, test not back yet”. No kidding, the doc who was talking stopped mid-sentence and they all immediately raced out of the room (I know, there are a lot of racing docs in this story). I guess they thought she’d already tested negative. Oops. About 5 minutes later they come back in, decked out in the SuperHelmets and head to toe PPE. (Good news: she was negative for Covid although we didn’t find out until much later that night).

They do another X-ray and confirm the collapsed lung. No one has any idea what caused it; these are often caused by some sort of injury to the chest but she just woke up with it collapsed. The most important thing was getting the lung “up” again, so a surgeon came down and placed a tube in her chest about an hour later. They attached the tube to a machine the suctions all the air out of her chest cavity and gives the lung space to inflate. She’s been on that machine since the tube went in. They admitted her to the hospital (by now it was almost 2 am) for observation and diagnosis of what caused the collapse. The next few days are sort of blurry for us (not much sleep) but involved X-rays every few hours to see how the lung was holding up. They actually had to insert a larger tube two days later because she needed more pressure to keep the lung open.

Unfortunately, the lung still wasn’t holding up well and needed more and more pressure from the machine. That meant there was a hole somewhere in the lung. (Plot twist, there were several). They did a CT scan to locate the holes. Children’s is really amazing about ensuring patients and parents see all the images from X-rays and scans. They bring up the CT scan and show us several “holes” at the upper quadrant of her right lung. The holes are called “blebs” and are like blisters that pop open on the wall of the lung. As I mentioned, she has several. The docs stressed that it’s really good news the blebs were only in one lung and we try to be happy about that. The surgeons and pulmonologists discussed her case and determined that the blebs haven’t shown any sign of closing up and she’s going to need surgery to remove the part of the lung with all the blebs. The surgery is Friday morning. After removing the bleb section, they’ll also insert a substance into her chest cavity that will stick the lung to the chest wall and help the lung stay open for future “bleb attacks”.  What caused the blebs? We don’t know for sure. There have been some documented cases of adults with NF and lung disease (blebs) but only one case of a kid with NF and the disease. That’s our Scarlett, always blazing news trails.

After the surgery, they’ll keep her here (hospital) for several days to observe and make sure they can remove the chest tube. We’re hoping to go home on Monday or Tuesday. We’re all hanging in there. Jon and I are switching off at the hospital. Luke wrote and recorded an amazingly sweet (and hilarious) song for Scarlett. Kel and the boys FaceTime her often. Tax week (this week) is the busiest time of the year for me at work but I’m blessed with the world’s greatest paralegal. And finally, Jon and I would be lost without David and Jessica. We are endlessly grateful for our village.

When she’s awake, Scarlett is staying busy with lots of art projects. Childrens is amazing; they have team members who bring her paints and canvases. She’s also working on her comedy routine. She has a giant stuffed bear in her room and every time a new doc or nurse comes in, she tells the story:

My mom and I were here last week for another appointment. We stopped by the gift shop on the way out and I saw that bear and loved him so much. My mom said “he’s huge; that’s more of a post surgery reward. Too bad you don’t have any surgeries in the near future”.

And I said to myself “lungs, let’s do this!”

I’ll try to get another update posted after the weekend.

Move love, Shan

PS: One last thing – Every decision we make now is made in light of Covid.  If Jon or I get Covid, we won’t be allowed to be with Scarlett in the hospital and I can’t bear that excruciating possibility. Needless to say, a kid recovering from lung surgery is also at high risk for complications from Covid. We’ll likely be isolating even more hyper cautiously now. Thanks for understanding (and please wear your masks❤️)