Happy Monday!

Now that we are back and recovered (I think!) from our week of appointments in Cincinnati, I wanted to share another update.

First of all, Landry did absolutely amazing. She was a rockstar and just handled everything so well. The only indication she gave that she was "over it" was at the end of the day Thursday at our last appointment; she totally earned a meltdown by that point!  It was special to have one-on-one time with her when she was healthy. I'm used to our alone time being when we're inpatient and she's not feeling well, if even awake. 

Both the chest CT and triple scope gave us a lot of new information, which we won't even know the full extent of until her GI biopsies are back this week.  The pulmonologist also did a lavage (rinsing the lungs with saline and testing the fluid to see what is inside the lungs); those came back Friday and have started giving us a clearer picture as well. 

Landry had a tough time keeping her oxygen saturations up after anesthesia/intubation so we spent about three hours in recovery.  Since she looked good otherwise and her saturations were manageable with a small amount of oxygen, we were allowed to take her back to the hotel on our home oxygen.  I went to the hospital with anything I could think of that would help us avoid an admission after her procedure so I was very glad I had done that!  

Thursday was our biggest day with endocrinology in the morning, FEES swallow study with the aerodigestive feeding team midday, and a neurology appointment to end the day. The swallow study went really well and Landry even swallowed a few sips of formula for us for the first time in a long time.  She seemed to be managing her own secretions well that day and was protecting her airway on her own, but the lung washes that pulmonology got will be the final piece for the feeding/swallowing team as well.

I told my mom that the whole week was just a level of exhaustion I've never felt before.  Landry doesn't sleep well away from home so we had the lack-of-sleep part of hospital stays, but Landry felt good and was mostly (very!) active, which isn't the case when she's sick at the hospital.  Combined with the busy schedule of doing six months' worth of appointments in three days and the mental load of taking in all the new information, I didn't even make it to 8:00 on Friday night before I fell asleep on our couch!

As exhausting as it was, though, it was 100% worth it and I feel so fortunate that we can travel with Landry to get the care she needs and deserves.  Without even having all the pieces to her puzzle back yet, we already know more about her than we have in the last five years.  I think I had mentally prepared myself for going through all of this and coming out without knowing any more than we did before, but that wasn't the case at all.  We definitely have her at the right place!

I can't say thank you enough for all the prayers and encouragement last week and always.  The donations are beyond generous as well.  I am making my way through sending individual texts and hope to get caught up on that tonight or tomorrow.  With my mom traveling with Landry and I this time, she, of course, wouldn't let me use any of that money (or my own at all) so it's safely set aside for our next trip.  I know there will be several before we are in "maintenance" mode with the aerodigestive doctors.  

If you'd like to continue to pray for Landry and our family this week and beyond, you could pray that she stays healthy now that she's returned to school and that we continue to gather useful information about her and our next steps in Cincinnati as biopsies come back this week.

Thank you for being on this journey with our family.

Lindsay