Today’s post is brought to you by Starbucks, the official drink of parents with hospitalized children.

We had a blissfully boring day at the hospital, getting things ready for Lindsey to be discharged tomorrow (barring unforeseen events). We had the rest of our “teaching” about infection and rejection, and all kinds of complications that can happen.

We met our post-transplant coordinator who will be our main contact after Lindsey is discharged. She said most families call her daily; some even call several times a day. We met the post-transplant nutritionist and Lindsey quizzed her on *exactly* what is off limits. Essentially, Lindsey will not be able to eat any meat or fish that isn’t fully cooked (no sushi), or any eggs or dairy that isn’t pasteurized, or any cheeses with mold in them (blue cheese). Of course, only our kid would ask, “So, what about ceviche?” Someone watches too much Food Network!

We also picked up the first round of prescriptions, totaling 10 bottles, from the outpatient pharmacy. Lindsey will take these in addition to some non-transplant-related meds that she needs (for allergies, etc.). For the first few weeks at least, she will need 29-30 pills per day, plus two liquid medicines. Some of them have to be taken at exactly the same time every day; some have to be at least 2 hours from other meds; etc., so we are going to have a bit of a learning curve. The transplant psychologist recommended an app called Mango Health that allows you to set dosages, refill reminders, take-medicine reminders, and even gives information about each med and possible side effects and interactions. We are going to use that (mostly Lindsey will, but we will keep track of her meds too, at first) and see how it goes.

Lindsey had kind of low energy today so she mostly hung out in bed, although she walked to the cafeteria with me to get lunch. She perked up toward the end of the day after taking a shower. She’s been on her phone Snapchatting with possible college roommates/friends and saving recipes that she wants to make now that she can eat protein. She and Mike are going to have a field day when it’s safe to go to restaurants again – she wants salmon and burgers and sausage and chicken marsala and sloppy joes. When the nutritionist told her to have protein at every meal, all 3 of us did a double take… such a huge change.

It’s really strange to know that Lindsey is severely immunocompromised right now, because she doesn’t act sick. The only people we’ve known who were immune suppressed were those with cancer who had chemo treatments, and they were clearly very sick. Lindsey is for the most part eating normally, walking around, and doing teenager things, so it’s hard to reconcile that with how vulnerable she is – even an ear infection or common cold could be serious trouble. Over the next 6-12 months her dosage of immune suppressant will decrease, and it will be less of an issue, although she will always be vulnerable. The first 3-6 months are the toughest to manage, or so we hear.

Tomorrow will be a busy day because we need to see a whole bunch of providers prior to discharge, and make sure that we have all of the supplies to take care of Lindsey’s incision, JP drain, and her currently-healing drain site. 

Many thanks to those who continue to donate to COTA! Today we thank Elvana Hammoud, Benny Riggi, Robert Hemrick, Dan Miner, Amanda Bresler, Amy Joyce, and Michael Sklar. Special thanks to Shari Fesko, who sent Lindsey an adorable bath kit from Lush, and to a mystery donor who sent 4 boxes of Girl Scout cookies! We don’t know who you are, but we like you! 🙂