Slow day yesterday, hence no post. A couple things in terms of Lillian sitting up, and doing alright off her pacemaker for about an hour, but relatively minor overall. Lillian had her Milrinone turned down to .3 and ended some of the initial anti-rejection medicines (to recap again, she was given 4 or so anti rejection meds after surgery to last until the long term one, Cyclosporine, was at therapeutic levels. As she approaches that level, the other drugs will be discontinued.) At the moment, I think she's down to just the Cyclosporine and the catchy mycophenolate mofetil (also known as CellCept, which will be discontinued as well very soon) Kathryn did take this video though, so you can see how Lillian is rapidly getting back to how she was before the surgery.
Today, however, was more eventful. One of the first things that happened today is that we were able to turn off Lillian's Milrinone entirely. That's a big step for her as she has been on it for 5 months. It's an even bigger step when you remember that Milrinone was the drug that has kept her alive for the past 5 months. Without that one pump, she would have made it a couple weeks. And with Milrinone off, we don't need as many lines any more (she has 3, a PICC that has been in for over 5 months, a IJ (intra-jugular; i.e., in her neck), and a PIV in her right hand). She also has an arterial line in her left hand, but that is to monitor blood pressure and we don't give meds through it. We also had a much smaller IV pump pole.
It was also finally time to remove a line. There's no need to have 3 access lines if she's not actually on any continuous drips, so we removed the IJ line (largest infection risk). Shortly after removing the IJ line, her PIV happened to fall out as well, so she is down to just the PICC line now. This will remain in for some time as she's still receiving IV medicine, just none of them continuous at this point. Lillian certainly enjoyed having her neck and hand back though.
Lillian showed a little progress with being off her pacemaker yesterday, and showed even better progress today. She had the pacemaker on and sensing, but it never needed to activate. To clarify that a bit, when the pacemaker is sensing, we have it set to a target heart rate, in Lillian's case, 80 bpm. If she were to fall below that rate, the pacemaker would kick in and start pacing her heart keeping her at that level. Lillian was able to keep her heart rate in the 100 - 110 range all day, which is the range we need it to be. Her donor sinoatrial node also continues to improve.
We did lose some ground on feeding today, but Lillian was extremely fussy and we switched formulas on her. It doesn't help either that we still need her to keep her calorie intake up, but she simply isn't interested in eating as often as we want her to. She is still able to take her anti rejection medicines by mouth though, so
hopefully the lack of being willing to take a bottle was an issue for today only.
On a slightly related note, thank you to my co-workers, who sent us these beautiful flowers last night. It was quite the pleasant surprise to come home and see these resting on our doorstep. I also want to thank all of you who leave comments for us on the blog and Facebook. I know I'm really bad about responding to them, but we do read them all and love getting them. Last, a couple more pictures from the last two days.
|It's not easy to see except for Kathryn and I, but Lillian is smiling behind her binky.|