Hi. It is now Saturday morning (Day 4) and I'm trying to recall what happened yesterday. But, first, while we were out for lunch yesterday, we stopped in a cute little bookstore. I saw this journal. I should've bought it.
Haha!
Anyway, I guess I can start with Thursday night. I was feeling pretty worn out and sad (as you might have guessed from my blog post) so it wasn't exactly easy to perk up and enjoy a baseball game. This is a good example of when I say that having fun is hard. Not everybody gets what I mean.
The seats were great. We were like three rows behind the visitor dugout on the 3rd base line. While we do not watch a lot of baseball, we can certainly appreciate the game - especially here in Boston. Fenway is located right in the city. They close off the street in front of it and that street becomes part of the park. It is pretty cool. Funny, a few weeks ago I came across a video about how/why they play Neil Diamond's Sweet Caroline during the games. In 1997, one of the employees had a baby girl, named Caroline. The music director played Sweet Caroline as a gesture to him and his family. It stuck. They now play it in the middle of the 8th inning. So, we stayed through the 9th inning and then we left. The Red Sox lost.
Back to Friday... I got her cleaned up, washed her hair and did her wound care on her neck incision. I think she felt a little better after all that.
The team rounded and we discussed our travel plans. Our plan was to discharge her Saturday morning and fly to DC on the 3pm flight. So, Tom purchased the tickets, rented the car in DC, and told The Bon that we would be checking out on Saturday.
The only two things we had to check off the list was to make sure she was off oxygen during the day (check) and her pacemaker had to be interrogated one last time before we left. So, the doc came to do that. Then she called me. She asked me for Harlie's home pacemaker doctor's info (her doc at Children's National in DC). So, I told her and then I sent a message to him to let him know that she was trying to get in touch with him. This was probably around 4pm. On a Friday.
At 5:30pm, I received a message back from DC. The two doctors connected. The new "plan" is that she will need to be seen ASAP. They gave me an appointment for 11:30am on Tuesday in Fredericksburg. Murphy's graduation is Tuesday at 2pm in Richmond. Fredericksburg is one hour away from Richmond.
As if that wasn't bad enough - they added that they need to do a chest x-ray and another pacemaker check to make sure things are stable enough for Harlie to travel home. If things are not stable enough, they will likely plan to do her pacemaker revision up there (Boston).
I think I stopped breathing for a minute after I read that.
A pacemaker revision means an entire replacement, which means the leads connected to her heart and the battery generator. The leads were attached to her heart when she was just four days old. So, those leads are now almost 20 years old! In the past, they have talked to me about the battery dying (which is what I shared a few days ago) and the leads failing. Regarding the battery - we have some notice about that, so that's not as scary. But, the leads are another story. If they fail, her heart stops beating. And her doctor here mentioned A node failure. I don't know exactly what that means.
Gee, I wonder why I'm a catastrophic thinker?
Anyway, we left the hospital around 7:30pm to get dinner and head back to our room. Ugh. We were not ready to have this pacemaker replacement issue in our face. Especially today - while we are 500 miles from home.
We woke up early and went on ahead and packed up all our stuff. We wanted to think positively and thought if we can't go home today, we will just unpack later. We will also hope that we can keep this room.
Plastics came by one last time and checked her incisions. All fine there.
They came and did the xray (darn it, forgot to take a pic of it). Here's an older pic, just so you can see the leads and the battery.
Then the Electrophysiologist came by (EP/pacemaker doc). He explained everything. He said that the leads can break and stop immediately or they can give signs that it is happening slowly (which I think is what is happening in her case). He said "rarely" do they just break. I love how some docs think that is comforting. Regardless, he said that we are good to take her home, but she needs to be seen ASAP. Whew!
Hopefully, I will hear back on Monday that they can see her earlier than 11:30 on Tuesday. Clearly, there is no way I could make it back in time for Murphy's graduation with an 11:30 appt.
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