The Details (days +42-43)

So now that I have some free time and I've gotten a full night of sleep I'll update your on the details of the last couple of days.

Discharge Day--Thursday started with a jolt. Olivia's primary nurse, Lauren, came by to check on us. We all love Olivia's primary nurse but she hasn't worked much over the last couple of weeks, she was on jurry duty but she came by on our last day just to see Olivia. I woke up just as emotional on Thursday morning so I started telling her how guilty I felt that we were going home that day while other kids had to stay. She made me feel so much better, we both had a big cry over the entire situation. Everybody walks a different path and has different challenges and blessings. After our heart-to-heart I was able to focus on Olivia and her special day. Our emotional conversation was immediately followed by a phone call from the PMBT clinic where Olivia will go every day for her follow-up appointments. I thought that they were calling to remind me of the time for Olivia's appointment but instead they were calling to warn me that our insurance authorization had expired on August 31st and we would need an updated authorization before our visit. WHAT?!? **insert explicitive here**, ARE YOU KIDDING? Of course I have a minor meltdown. I am so tired of dealing with this insurance mess! I begin calling everyone I can begin to think of who can help us and no one seems to know anything or be able to help. I spent most of the day on the phone trying to work it out. Meanwhile all the typical discharge stuff was going on. Amy and Mike had arrived to begin unpacking and loading up Olivia's room (I had been too nervous to do it before, I didn't want to jinx our discharge). Then nurses are coming in and out to finalize various details, PT for after Olivia is discharged, our medical supply company that will begin making deliveries that afternoon, etc. Our room was a zoo. It was an impossibly stressful day, the most stressful day we've had since arriving in Durham in June. We finally got back to the apartment and started to settle in. Olivia and Mike took a nap and Amy and I met with our medical supply company representative. Our first night at home wasn't an especially relaxing one but it was wonderful not to be in a hosptial. Olivia ended up sleeping with Mike and I so none of us really got any sleep but it was still much better than the sleep I'd been getting in the hospital.

1st Clinic Day--Olivia's first day in clinic was absolutely wonderful! We got checked in and the receptionist gave me a little tour and then they took us back to the isolated waiting room especially for kids post-transplant. We saw Aiden and his mom, Penny, in the waiting area and it was great to catch up! Aiden is doing really well. We just had to wait a bit longer before we got into an exam room and Olivia was able to take off her mask and have a snack. Everyone was very impressed with how well Olivia is doing. She didn't need platelets or blood so we had a really quick clinic day. We scheduled the rest of our appointments from Saturday through Wednesday. We will be going to clinic everyday until Wednesday but the doctor told us that starting on Wednesday we might be able to slow down to every other day. We'll see how that goes.

Overall things at home are going well. The one exception is the evening IV meds time. Olivia does great but with 3 adults here we all just want to make sure we're dong the best we can for Olivia. Somehow this has ended in bickering and arguing on the part of the adults (mainly Mike and I, Amy is wise to stay out of it). Mike and I both learned how to do labs and administer IV medications but since we were at the hospital at different times we learned from different nurses and each have our own ideas about what we think is best. Hopefully we're one step closer to resolving this issue. We have our list of questions to bring to clinic today and hopefully our debate will be resolved.

I still have tons of pictures to post, pictures of our time with Peter and pictures of Olivia's discharge day. I'm working on it and hope to have some up by the end of the weekend.