So, I know I was exhausted last night because of the title of my last post, "Post Op Day Two." What the hell is that about? None of that title is accurate! Clearly, I'll have to go back and change it.
Today has been okay, I think. Nothing too major. I'm feeling pretty guilty though. I think she's been in more pain than I realized. So, we weren't on top of it, and now we're trying to play catch up.
Sometimes I think her medical history and my perspective is a danger to her. I really thought of this as a very simple surgery (in comparison to her previous 20) and it never occurred to me that she could be in pain. It doesn't help that she does not communicate pain at all. And that the anesthesia combined with the narcotics that she did receive have now left her constipated. So, she's got that discomfort along with the pain from the incision and probably pain from them placing the pacemaker generator behind muscle.
We made her get up and walk around the unit some. She was not very happy about that.
But everyone loved seeing her up and walking about. This is also a first for her. She's never been able to walk around during a hospital recovery. So, that's another pretty cool milestone.
We had an awesome nurse today. Here's Tracy with Harlie when we got back from our walk.
And here's Harlie eyeing the bed wondering why the hell I'm not putting her in it!
It also occurred to me during this stay that I have never gotten a photo with Dr. Jonas, her heart surgeon. In hindsight, I wish I had gotten photos of all her surgeons. That would make for a good collection. So, when Dr. Jonas stopped by to see her today, I got one.
The pacemaker team came back twice today to continue to try to adjust the pacemaker settings.
One of the pacemaker people (Carol) said she was going to get me a book about pacemakers so I can learn all about it. "Great", I said (very sarcastically). Sometimes I seriously think my head's going to explode from all the medical information I have to learn and retain. Blech! The one saving grace is that I don’t have to clean it (the pacemaker, I mean). So, there’s that.
They said that she is a complicated case to pace. Her heart wants to initiate beats from different areas (sometimes from the atrium, sometimes from the ventricle, sometimes from in the middle?) and not in any kind of rhythm. The electrophysiologist tried to explain it to me. He lost me pretty early on in the lesson. He said a bunch of things like, QRS, echo beats, sinus node and AV node dysfunction, etc. I’m not even going to try to explain it until I know a smidge about what I’m talking about. Most of the stuff I’ve been able to at least follow a little bit. But this electrical heart stuff is way over my head.
Basically he said that her heart and the pacemaker are competing. But since her heart is all over the place, it’s really hard to set the pacemaker for her so the two live in harmony. Too much pacing, and too little pacing are both detrimental to her heart. So, no pressure there.
And since Richmond doesn’t have a pediatric electrophysiologist, we will have to come up here for all of her follow-ups until they get everything set at something they are all comfortable with. After that we can see her local cardiologist.
It is now after 10pm and Harlie is resting – although I can’t say “comfortably.” I really should have noticed her pain earlier. All the signs were there – shallow breathing, she doesn’t want to cough, higher heart rate than usual (although the pacemaker definitely made that one harder to read) and she’s been laying with her legs all bunched up close to her.
We’ve given her lots of water, only two cans of her formula and some pain meds (with codeine, which doesn’t help the constipation issue). We’re going to try a suppository tonight. Hopefully that will help make her feel better.
She’s not communicating at all, really - other than saying "no" to any and all questions. She’s definitely mad at me. But a lot of that could be explained by just being overly uncomfortable.
Tonight we were moved from the CICU back to the HKU. Which, surprisingly, I don’t mind. It’s definitely quieter over here, so I think she’s better able to get some good rest. And I can eat in the room, so I don’t have to be gone from her for so long.
Right now the plan is to finish the 48 hours of IV antibiotics tomorrow, get us all scheduled for all the follow up appointments, talk to the pacemaker team again, and then hopefully be discharged early enough that I can make it to Murphy’s school musical by 7pm. Luckily, Brandy made herself available to come over so I can go. Obviously, taking Harlie to a school function would not be very smart.
So, this week we were lucky enough to be in the hospital when a friend’s daughter (Adelynn) was in, too. So, Kim and I have been able to eat lunch together and just get out and talk several times a day. It’s been awesome! Having her around has totally made this hospital stay so much better (for me, of course).
And when Adelynn went for a wagon ride and a walk, they brought her over to Harlie’s room so they could see each other and say hi. Then when we took Harlie for a walk, we took her over to her room. It would have been awesome if there was a playroom for the two of them to play in together.
Unfortunately, Adelynn had to celebrate her 4th birthday (today) in the hospital. I had to take a picture of her room because she has so many balloons!
We had to laugh because I thought I had a lot of stuff. HA! They definitely win that contest. And that makes me feel so much better. Now I know that accumulating stuff in the hospital is completely normal!
Here's Kim and I...
After we got moved to the HKU (in a different wing and on a different floor than the CICU) Kim called me. She said that someone asked Adelynn what the best part of her stay was and she said, “Seeing Harlie.” Isn’t that the sweetest thing ever?!
When Adelynn is all better, we are going to meet and let the girls play together. Adelynn is getting a g-tube in the near future, and I think it might be good if we could show her Harlie’s g-tube. Maybe that would make her feel better about it.
Well, I need to sign off now. We are about to torture Harlie with a suppository and potty break. I really hope everything goes well so we can leave tomorrow. I want her to like me again. The nurse is here so I don't have time to proof my post. Please forgive my typos!
Thank you all for all your thoughts and prayers!