Kasai Recovery – Day 5 Finally Home

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We woke up around 6 am again. This time though it was from the worst sleep ever. Because I could nurse, Beckett woke up every couple hours. He wasn’t terribly satisfied with only nursing for 15 minutes and then it would take us a good 45 minutes after nursing to get him back to sleep. It was miserable. Once we were up and going, I started to feel a little better. We changed his diaper and noticed that it was still green (yay!) but there was also some white in it (bad!). White means the liver isn’t working. I decided to talk with the surgical team when they did their rounds.

Shawn went to go shower and while he was gone Dr. Scaife came to see how we were doing. He had a couple of colleagues with him. He asked if we wanted to go home and I said we did, if Beckett was ready. He asked how he was doing. I told him that I thought he was doing well. He was happy, managing pain well, and peeing and pooping great. But I then told him about my concern with the green poop that had some white in it. He said, “His poop is green?” I nodded. He then looked to his colleagues and got this look on his face of slight excitement. “Well that’s encouraging!” Then he fist bumped me. Yep. A man of few words who makes more money in a week than I do in a year fist bumped me. It was pretty awesome.

We got everything ready, got our discharge papers and packed our stuff to get ready to leave. We spoke with our nurse before we left. We had Tammy again and it was so great. She knew us and knew Becks. She also was wonderful because she would talk to us. She would be frank and didn’t sugar coat anything but the way she talked to us wasn’t depressing. She told us to always have an overnight bag packed when we have appointments because a lot of times, they do the labs and then the numbers don’t look great so they admit them to the hospital. She also told us exactly what to look for and keep track of and when to call the doctor. I felt so much better after talking to her. I felt like I could possibly handle things once we got home. She told me to trust myself. This was hard for me because I feel like I completely missed the fact that Beckett was so yellow. Or at least I ignored it for awhile. I didn’t want to think anything was wrong. And now I’m paranoid that I’ll miss something else. She was very encouraging. She got me back into a good place and we grabbed our belongings and packed him up and left for home.

And now we wait. We wait for a few weeks to find out if the surgery even worked. We wait to see if his poops stay good colors. We wait for the day that his labs come back horrible and we move to a transplant. We wait. Waiting. I’ve never been good at waiting. But for now I have no choice. So I will enjoy the wait. I will enjoy the good moments while waiting. And I’ll pray that we will be waiting a really long time.

Written by: Kimber

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