Yay For Being Out! | Brave Bear Royer

Wow what a time! It’s been two weeks since we got out of the hospital on Friday, January 29th. We were in for 162 days. It was 47 days post-transplant and 31 days after Kate’s last open-heart surgery. Sorry for the delay in updating everyone but it’s taken a long while to feel like we are able to breathe.

Kate is doing great. She was crazy happy to be in the car driving out of the hospital! She is happier than she has been in a long time. She’s jabbering and chatting a lot…much more than in recent past. She has started walking in the past week. She has never really crawled and walked with assistance in the Hospital but now she’s taking off on her own and really enjoying it. She gets the biggest grin after walking across the room on her own! Other problems are winter clothes! Nothing fit when we got home! We had purposely not gotten anything recently as we didn’t need it in the hospital and didn’t know when we would need things and what season it would be. Luckily between amazon and REI we were able to get some good options and get a few days outside before the current bitterly cold set in.

Medically wise, we had two clinic visits since discharge. On our last one, when they did the echo of her heart function, her heart looked good for the first time in her life! It looked good enough that they are starting to wean the IV medications she has been on since she was 3 months old…this is HUGE! We are still on LOTS of meds. We are slowly weaning drugs but still have about 40 or so individual doses to give throughout the day and overnight. It’s tiring having to give meds at 3am daily but we should be able to wean off that in a few more weeks. Kate is getting physical therapy in-person three times a week and speech therapy once a week. We also have a nurse coming by twice a week for labs and to help with other assorted tasks.

At home we are struggling to get things back in order. Not really living at home for 5 months…only sleeping (and for Dave, working) takes it toll. We are still unpacking stuff from the hospital and trying to find new ways to organize a rapidly increasing toy and book collection. Our hospital process of doing laundry and having big piles on the couch doesn’t really work any longer! We suddenly find that we need to very quickly toddler proof things. It feels like we have to learn how to work with a toddler overnight!

Being home is a ton more work than being in the hospital was. We have to act as the formula lab to prep Kate’s daily feeds. We have to act as the pharmacy and prep all the meds for the day. We have to act as the nursing and provider staff to assess and manage her medical status daily and we still have to act as parents. Our day still starts early and ends late. We’ll take this though. It’s nice to be on our own schedule, managing issues ourselves without having to deal with the strict structure of the hospital and all the headaches that brought.

We want to send a huge thank-you to all the friends and family that have been supporting us. Being in the hospital for 5 months was a hugely stressful and draining experience. People sharing home-cooked food, gift cards for food delivery and all the other support really helped. Thank you so much.

We will keep sharing updates…they may just be a bit slower in coming.

Here’s a collection of recent fun videos