|An appropriate start of Spring at Children's|
Today was another quiet day for Lillian. She was more awake and playful today than yesterday, but she's still feeling terrible (and considering the whole organ replacement thing, I don't blame her) and she is of course tired too. It's not the pain killers though. I'm not sure if I've mentioned this already, but she's already been taken off Morphine and Ativan (has been for two days now), and is having her pain managed entirely by Tylenol. She seems to be doing well with that and it's a blessing for Kathryn and I as it means we won't have to deal with a dependence on either of those two drugs, something we had to deal with for her Morphine after the Norwood. She is tired and grumpy for the most part though.
We were hoping to take some of Lillian's lines out today, specifically the one in her neck and the one in her right hand, but that just didn't work out today. She's been off the Lidocaine for a little while now, but we're still having rhythm issues in her heart. The exact rhythm issues have changed, (although I forget from what to what), but she's still having the issues of communication between her atria and the ventricles and the ventricles tend to fire early.
She will remain on the external pacemaker for a while still because of the rhythm issues, although we do have hope still for it to get better. It normally takes a week to come back, although we will give her at least two to recover it. On top of that, she got a 12 point ECG again today, which showed signs that the parts of the donor heart that we've been having issues with are waking up. Specifically, the main reason she's been having rhythm issues is that the donor heart's Sinoatrial node (the main pacemaker of the heart) simply hasn't been working at all, so cells in other areas of her heart generate the contraction. We need the donor's SA node to work though, and for a minute we did catch it firing properly on the ECG. The next minute it wasn't again, but it shows that it is capable of working. Lillian has her old SA node still, but since it doesn't have any electrical connection to the new heart it just fires and does nothing else.
While we're waiting for the SA node to wake up, we've been able to make progress in other areas. 5 of her 11 IV pumps are off at the moment, and only one is delivering something besides a flush. That pump is delivering Milrinone, which we've been able to wean down to .3 mcg/kg/min, down from .5 before the transplant. She won't need this into the future, but since her body has been on it for 5 months it isn't something we can just withdraw. We also started Captopril again today, you may remember this as the main heart medicine she was on after the Norwood. She'll probably need to be on this for about a year or so. In other medicine news, she is still on around 4 anti rejection medicines - Cyclosporine, Azathioprine, Sirolimus, and an Immune Globulin. This will drop to just Cyclosporine either tomorrow or the next day as her body finally reaches a therapeutic level of the drug. In fact, the only reason we use the other ones is to give her body time to build up a level of Cyclosporine that she needs.
Lillian's also been able to start orally feeding again. This was relatively easy as she was NPO for 3 days and ravenous. On top of that, the steroids make her extremely hungry, so we're making fantastic progress there. We're already back up to our high of 60cc's orally (she was down to 5 to 20 before the transplant), and she is taking her Cyclosporine and Captopril orally, which is awesome. In terms of things which have an impact on us once we get home, this will be the biggest, so we are absolutely thrilled to see her doing so well. Feeding tubes are convenient at night, but having her eat on her own is far better.
Plan for tomorrow is to get at least another ECHO, hopefully make some progress on the rhythm issues and possibly remove some lines. Hopefully we also make progress in terms of feeling better, sitting up, and being held again. Speaking of being held again, Kathryn got to hold Lillian today even with the pacer wires in, so we're going to be taking advantage of that.
I'm going to leave you with something sombering, and then encouraging. First, the aftermath of the drainage tubes. The two middle ones with yellow wires going in are where the pacer wires are going in, the other three are the drainage tubes. She's been a fighter so far, and it shows.
Finally, to cheer you up again, the jazz hands are returning: