A Day of Adventure

Boy, Bailey's really pounding out the math school work! She covered a whole chapter in one day today. She's doing a great job!

Dr. T took us on another field trip to Methodist today. We thought it was going to be just a trip to the gift shop, but he let us talk to two of his patients over there - one is on a VAD and the other is likely going to have one very soon. We enjoyed our visits with them - they were both very, very sweet men. The one on the VAD has had it for 6 months and is waiting on a transplant. They were showing each other their pumps and comparing. His looks very similar to Bailey's, but his is portable so he can come and go between the hospital and home. He is also getting IVIG to help lower his antibodies, so nearly identical situation with Bailey. I think it was good for the other man who might be getting a VAD soon to see Bailey up and around and feeling really good. I'm sure he's pretty nervous about the whole process - we were in his shoes. It's always good to meet people who are in similar situations - you find out you're not alone and it gives you moral support. Thank you, Dr. T, for taking us over there for a visit!

However, after we traveled around Methodist, we pretty much depleted the battery supply on the Berlin Heart. The Berlin people told us when we first got it that it has a 1-hour battery life but that the last 30 minutes goes fast. We discovered today exactly what that "last 30 minutes goes fast" means. It goes REALLY fast!! We were headed toward the train from Methodist and it was reading 11 minutes left on the battery. As soon as we unplugged and started moving toward the train, it said 7 minutes left, and started alarming at us. I can only tell you that I was praying - a lot!! Dr. T, however, in his incredibly professional mannerism, simply said, "Good! I was hoping to see if the hand pump on this thing works." Oh, my dear goodness. We high-tailed it for the train station and found an outlet to plug into. We let it charge while we watched 2 trains come and go. [While re-charging, we got to meet the man in charge of all the transplants here. I don't know his exact title, but we were told that he's "the" transplant guy. It was interesting to talk to him for a few minutes.] Then, we decided to make a run for it on the train to the other station at Riley -- a 6-minute ride (and there are no outlets on the train - that we found). We were successful, but the alarming continued, and battery lights started flashing, and the screen was reading something like "Battery discharged - use power source!!!". That was pleasant. We know where every power outlet is between here and methodist. We plugged in about half-way down the cat-walk and sat and visited with each other for about 5 minutes or so. Then we decided that I would run ahead and get the elevator at the end of the cat-walk and when the door opened, Dr. T and Bailey would unplug and shoot for the elevator. [I hope you're feeling at least a fraction of the emotional hurricane I was feeling. I did find incredible comfort in the fact that Dr. T was right there with us because, if he hadn't been, I would have surely passed out by now!] So we made it down the elevator and into the atrium at Riley, where we plugged into an outlet and sat for about an hour to recharge a bit. Scott met us down there with dinner, so we had a nice dinner in the atrium amongst all the workers setting up for the WFMS radiothon that begins tomorrow morning. We had been calling our nurse from my cell phone periodically throughout our trip, because when we left the floor, we told her we were simply going to the gift shop and would be back in about 15 minutes. Hah!!! She'll think twice about letting us go next time, won't you Amanda?! First of all, she didn't believe that we were even at Methodist when we called her, and then she didn't believe that our battery was getting low and we were stuck in the catwalk. When we made it to the atrium, she sent down Bailey's medication that was due about an hour earlier. Wow! That was an adventure. That's all I can say. And I'm getting more attached to Dr. T more and more every day.

After all that excitement, we made it back to Bailey's room just in time for me to take off and catch Marissa's and Josie's softball games. They both did a great job! Marissa still won't bat, but she's a great fielder! It was really fun to see one of their games.

Bailey gets to go outside of her room now without wearing a mask. They say the winter respiratory season is over. She is so excited about that! And we're out of isolation again for now.

Well, I'm going to bed! They wore me out today. Don't forget to listen in to 95.5 in the morning. Bailey says she's waking up at 5:00 to go greet the morning team, but I'm seriously having my doubts! We'll see.

Good night, everyone!
Love, Angie