EGD and Bronch

 What a week. Sunday afternoon Lily and I drove down to our hotel in Boston. What normally takes 3.5 hours took us 5 because of traffic from southern Maine all the way to Boston. Ugh.  Monday morning we had a 7am appointment with the otolaryngologist. She said everything looked good from what she could see, but that during the procedure the next day, she would be able to check for the laryngeal cleft. After that Lily had her preprocedure COVID test and then we had most of the day to kill. We walked to a park near the hotel and wandered around for a little while. Her procedure was Tuesday at 11am, so we didn’t have to get up super early which was nice. I missed a turn on our way to the hospital and it set us back half an hour because of traffic! Have I mentioned I hate Boston traffic? 

Anyways, the ENT doctor used a laryngoscope during intubation and he did not see a laryngeal cleft or any other abnormalities with her anatomy. So that was good. The pulmonologist did the bronchoscopy and unfortunately, he said Lily still has significant tracheomalacia. Basically that means her trachea is misshaped and it prevents her from effectively clearing secretions from her lungs. So when she gets a cold or other respiratory illness, she takes much longer to recover and she is at risk for developing other infections like pneumonia. Dr. Ngo did her EGD and was happy to report that her esophagus was still pretty open. She was at 10mm a year ago, and she was at 9mm on Tuesday. He said a kid her age should be a little bigger, so he dilated her to 15. However in her lower esophagus, she had pretty significant damage from acid reflux. So we are increasing her reflux meds and will recheck in another 6 to 8 months. If it’s still bad, we will probably try some different meds. Her hiatal hernia had increased in size slightly, but Dr. Ngo said it’s not something we need to repair surgically yet, but it may be something she needs in the future. 

After she was awake and ready to go, we left the hospital and headed home. We got home about 8pm and I noticed she felt feverish. I gave her some tylenol and she went to bed. She woke up just before midnight and she was just burning up. Her temperature was 103, so I called the on call GI doctor in Boston. She told me Lily needed to get a chest xray immediately to rule out a tear or perforation in her esophagus (an unlikely, but possible risk of dilation). So I brought her to the ER here in Bangor and thankfully the doctor called Boston himself to kind of direct her care (The EA team is so specialized in Boston and Lily's history so unique that we get nervous when anyone else is caring for her in an acute care setting). They checked labs and the xray, and it showed that her esophagus was ok, but that she has pneumonia! Poor Lily! So they started her on amoxicillin and sent us home. At this point a second dose of tylenol had brought her temperature down, and she was feeling much better. 

Thankfully the fever never came back and her overall

symptoms have been much improved the last couple

days. Yesterday she rarely even coughed and had a

blast playing with her sisters outside. The pulmonary

nurse practitioner called me yesterday and we talked

about the game plan for her airway issues. We are

starting an aggressive airway clearance regimen.

Every day, twice a day, we’ll give her a breathing

treatment called atrovent,then another breathing treatment of hypertonic

saline that is to help break up secretions, and then

we perform 10min of chest percussion. Basically

we pat her back and chest which is supposed to help her cough up secretions. All together it takes

about 40 min.

When she’s healthy, we will do that twice a day.

When she’s sick we’ll do it 3 or 4 times a day.

Hopefully this will help her stay healthy longer and

recover quicker when she does get sick.

If she does continue to get sick very often or get

pneumonia or need hospitalization for illnesses,

then they will consider another surgery to keep

her trachea more open. So time will tell. If anyone

is curious to learn more about tracheomalacia,

here's a link to a couple videos of Dr. Jennings

explaining it. https://www.childrenshospital.org/conditions/tracheomalacia

I’m very grateful that we are seeing a pulmonologist now,

and it seems like the timing was just about perfect. I’ve learned

quite a bit just this week from talking to them. I also feel a little

disappointed because I was hoping for a quick fix. But that doesn’t

really exist for Lily I guess. She has a long road to “normalcy.” This

week has helped me feel at peace about staying home for a while

longer. I’ve had going back to work on my mind, but now is just not

the time. I get to be Lily’s nurse for a while longer instead. 

Thanks for all the support this week! We love you all and I thank God

for all the wonderful people who lift us up and help us carry all

this.. weight doesn’t feel like the right word, but it’s certainly not always

easy. I’ll post an update after a while when we start to see if the new

treatments are helping.

Happy to be home