We're home!

Yes, we were finally discharged. It has taken me a while to sit down to blog, and I don't have long, but here's the low down.
On Tuesday we were discharged and asked to stay locally until a follow-up appointment with our transplant team on Thursday. It was nice to be getting out of that hospital, but such a headache to be staying in Dallas for two days. We had to have home-health and oxygen lined up, but then had to have things redirected two days later to Waco. On discharge day I thought I was going to have a melt down. Every two minutes my phone was ringing with someone:
~ The Walgreens infusion team (they have to deliver, train, and provide the medication for the PICC line)
~ The Children's PICC team (they had to train me to care for the PICC itself)
~ The Home Health team (they will come weekly to our home to redress the PICC)
~ The oxygen suppliers (Ry is still on oxygen 24 hours a day)
~ The MDCP case workers who are helping us to enroll Ry in some prgrams that will help with costs, nursing care, etc.
~ The Children's PR dept. regarding some footage they have been getting of Ry (more about that later)
~ The pharmacy folks. Ry's script couldn't be filled in the hospital pharmacy due to insurance issues, then the pharmacy down teh street had to call to explain more insurance hoops, but we eventually worked through it.
After all of these phone calls and visits (many more still I did not care to mention), I had a stack of paper work and business cards all over the place, and more information than my mind could process. All the while we were trying to pack up, get Rylynn fed and get the heck out of there before traffic. And since our team was so indecisive about the discharge date, we had not yet made the reservation across the street at the hotel. When Tuesday morning rolled around and I called, it seems there was a church convention just down the street and literally EVERY hotel was booked! I found one that had a smoking room so we took it. It turned out to be a nice room and might be where we stay post transplant for a couple of weeks.
Mom and Jessica stayed with Ry and I the first night, until Gilly came in on Thursday for the appointment. For some reason Ry had the idea that the hoel was Jess's house. So she was comfortable there and liked playing at Jess's house. It's pretty impressive that Aunt Jess has a pool, a maid, and a cook! :)
So after an uneventful follow-up on Thrusday we were granted the opportunity to come back home to Waco. When we drove up Thursday evening, we couldn't even talk Ry into going inside, she sat at her sandbox for an hour or so before we walked through the door.
Things have been just as crazy here. Gilly and I were on the phone all day yesterday arranging all the aforementioned things and had a visit from home-health and our oxygen folks. Today has been much quieter and the house is slowly beginning to look put back together.

Life has changed. At 10:00 this morning I was still in jammies and had not made the bed or brushed my teeth. This is not normal for me. In fact it drives me crazy. But when Ry woke up at 8:00, even with Gilly's help, it took two hours to change her PICC med, give her oral meds, feed her breakfast, give her a bath and get her dressed for the day. She is not back to her active self yet, although I think over time she'll get more used to moving with the additional hardware that she sports. And Gilly and I will get better at moving with her. But it is now a 24 hour a day job to watch over her lines and sit with her so that she doesn't pull something out. We are thankful for our families who will be helping us and know we couldn't get through this without them. We are so grateful to be home and plan to enjoy every minute fulfilling all of Rylynn's requests! If she wasn't spoiled before, she will be soon I'm sure. We love her bossy little attitude and wouldn't trade it.

For now, please just pray for that special heart. Thanks for all your love and support.

With love . . .