A Healing Heart

Because Jane has had a few set backs it takes her a while to recover from them. She is managing and doing ok…not great, but just ok. She is a bit more swollen than usual and a lot more sleepy. The docs keep reminding us how sick she is so all of these set backs are part of the game. We had a conference with our attending doctor yesterday just to get on the same page and see where we are at. The good news is that Jane really isnt a heart patient anymore. Her surgery went well, she continues to recover great and her body has adapted  to her new physiology. This is HUGE given how sick she was and how severe her heart condition was. Praise God!!! Jane is truly a miracle!!! Her lungs are still a bit behind, but that is to be expected since she has been on a ventilator since birth. Just think of it like a training program…if you dont use it, you lose it. That is the case for Jane and her lungs. It will just take some time for her lungs to get stronger and when she is ready she will come off the ventilator. The bad news, though, is that Jane is now a liver patient. Every test possible is being run to try and figure what the problem is. In the meantime, Jane is being treated for an infection just to be on the safe side. Infections can go sour really fast…it’s best to be on the safe side with compromised babies… all babies, really.

Daniel is back home, well– back to our new home. He was gone for work for a few days and that was horrible in itself. I’m soooooooooo happy he is back and Jane missed her Papa!! It’s great to be together as a family 🙂 We’ve received some very encouraging words from many people over the course of this time and I have truly been uplifted. A HUGE THANK YOU!!

**Jane had a quick visit from her doctor from CHOC this morning. Apparently, he flies over every once in a while to check on his patients. That was pretty cool. She has not been forgotten about….and they are anticipating her arrival back at CHOC (but who knows when that will be).

The Boys are Back in Town

I was gone this week for work. I put in as much time as possible so that I can come back to my girls and be with them for as long as possible before I have to go back again. I was planning on coming back Thursday night, but several complications (which I’ll describe) got worse, so I just got on the next plane available.

1. Jane the heart patient is doing great, as far as her heart is concerned. If she didn’t have any other complications, we’d be back at CHOC long ago, and talking about possibly bringing her home before her next surgery.

2. We talked about her kidney has normalized, but things have gotten a bit worse since the docs told us that everything’s perfect with her kidney. She was on a medication that was harmful to her kidney, so they had to stop that, and are looking for an alternative. We’re not too worried about her kidneys, but we know not to take anything for granted, cuz that can change really quickly.

3. From a respiratory perspective, doctors decided her lungs aren’t as strong as they thought they were. So as they were weaning down on her breathing support, her L lung collapsed, and now they are spending time on getting that better. They just realized Jane still has at-least a few weeks before they’re going to talk about taking her breathing tube out. So for the immediate future, they have her on pretty strong breathing support, and are really playing a big balancing game between her oxygen levels and blood quality.

4. From a feeds perspective, wow. She’s a mess. This runs hand-in-hand with her liver problem. They had to take her off feeds (baby formula) because she’s not metabolizing proteins, and it’s building up ammonia in her blood–fasting. Her other liver problem of not processing and removing bilirubin doesn’t harm the body, just indicates liver dysfunction. High ammonia, on the other hand, is very dangerous to her body, brain in particular. It can cause sleepiness, tremors (which got pretty bad yesterday), confusion, brain damage, coma, and ….so let’s just hope her ammonia can get in check. Her feeds are a risk/rewards situation. As it is, food is causing her liver problems. But her liver isn’t processing her feeds. In the end, the doctors just said that her liver is a HUGH QUESTION MARK.

So we just had to ask if we are we running out of options. We’ve asked this before when we feel like she’s getting worse, and they’ve told us before confidently that there’s still so much we can do. When we asked this same question this time, the doctor paused, and said, there’s still some more we can do. That was a far cry from their confident responses before.

On a good note, Jane’s health has improved big-time since I came back. She really missed her papa, seriously. No joke, I came back, and there are tiny little improvements. YAY!!

On another note, regarding transport back to CHOC from Stanford, our insurance considers it “elective” transportation, which is not covered. And at $68,000 that’s a steep price for a plane ride. BUT good news, the director of the insurance company approved it, if/when they decide to move her back. They aren’t even considering moving back until Jane is legitimately stable. My guess is 3 weeks at best.

I’m just glad to be back home.