Sorry for not updating sooner; we had a rough couple days. Jane’s health has been mostly stable, a couple steps back and a couple steps forward. Today’s update will be a bit long, since we took a couple days off, and there’s plenty of new stuff.
Request: “Pediatric Cardiology for Dummies” doesn’t exist. If someone knows of a book like that, please let me know.
Jane’s health: she’s still very swollen, but her urine output is better, which is incredible news for us. Doctors and nurses are really ecstatic about that, and kinda make fun of themselves for getting excited about pee. But if they’re happy, then so are we.
Physiologically, Jane’s body is under more stress with more fluid buildup. If she’s edemic (swollen), then her heart has to pump harder, which she can’t be doing right now, cuz she just had heart surgery a few days ago. Her body is trying to get used to operating on half of a heart. Our hearts have 2 ventricles, or pumps, that push blood throughout the body, and Jane’s right ventricle is not being used. Other side effects of her edema are poor liver and kidney function, which just make edema worse. Edema also causes the heart work harder. So you see how important it is to get rid of that fluid. They have her on diuretics to help with that, so it looks like things are getting better, very very slowly.
Liz and I had the best day of our life this last week, when Jane was a little less swollen, heart working good, and she was opening her eyes for us, as well as moving her hands and feet slightly. Although that was such a therapeutic day for us, she hasn’t opened her eyes since, and has been more sedate. The doctors found that she wasn’t ready to handle the cognitive stresses of a new heart, so they induced her with sedation and relaxant to keep her more calm and have a bit more control over her vitals. But I can tell Jane does get a little perked up when she hears her mama’s voice and feels her touch.
They were giving her 1ml per hour of breast milk over the weekend (about the size of a small marble), but stopped it yesterday because of her tachycardia (raised heart rate), and they didn’t want to have extra “stuff” in her body in case of an emergency. BUT, at rounds this morning, the doctor decided to continue the breast milk. It’s such a tiny dose, and its fed thru a tube in her nose, but hey, it gets us excited.
Big news: doctors have been watching the flow thru Jane’s plumbing very closely since surgery, and found in her heart that there is some back-flow (blood going the wrong way) in her solo left ventricle. They decided that its one of two things, maybe both: 1) excessive blood volume going thru her ventricle with some naturally leaking backwards thru her mitral valve, which may correct itself as the heart gets comfortable, 2) the first surgery may have caused the geometry of her valve to change just enough that it isn’t closing properly. We hope it’s only #1, but if it’s #2, that means probable surgery, very soon. They like to correct heart problems before they see any more indications of heart failure.
To end on a good note, our new room at Ronald MacDonald House is very nice. For all you Sprinkles Cupcake lovers, we’re so close that we have a perfect view of Sprinkles right out our window across the street. Jealous?
Lastly, we had a couple visits, phone calls, emails, and texts that really did a number on me. Some of you will never know how uplifting you can really be (sorry if I don’t respond). I’m blown away by your constant concern and praying for us, lifting me up out of the gutter.