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.