Lillian was put on oxygen earlier today. Those of you in the medical field could probably tell that by the nasal cannula that she's sporting above, something that she now has to have 24/7. Katie and I are mixed about this. We knew that eventually she would start the declining as she continues to out grow her heart, and this is one of the first management techniques that we can use. At the same time, we've grown accustom to being able to give her as close to a normal life as possible, something we are immensely grateful for. Lillian is hitting all of the normal developmental milestones, including sitting up and grabbing. She's generally happy and social, so even though she's in the hospital 24/7, she has a reasonable approximation of a normal life aside from the daily evals and shots and whatnot. The oxygen makes it harder to do these things, and is just one more thing to carry around. However, it has vastly improved her color, and we're hoping it will help us regain some lost ground on eating since she's functionally lost that entirely over the last couple weeks.
To briefly touch on the other options that we have for management, we could increase her Milrinone (she is at .5, Children's will go up to 1.0 on the floor and higher in the CICU), but any change in dose of Milrinone requires 48 hours observation in the CICU. At some point though, even that probably wouldn't mean anything, so we could do a second surgery to tide her over. That could mean either replacing and enlarging the Sano shunt or doing a Glenn procedure (which if she wasn't getting a transplant would be the normal next step anyways). We would probably replace the Sano if we did do another surgery though, a Glenn would make the transplant operation itself much harder and more risky. If it really came down to it, we've been told we could place her on a Berlin heart. This is an external heart that does all the work of the heart. We know of another baby who was on a Berlin for 8 months so that certainly gives us time. Obviously, we would prefer to avoid as many of these as possible, but we will do what is necessary for Lillian. Only time will tell if this is even necessary, as a new heart will render all this obsolete. But that is an unknown. I'm frequently asked if we have any sort of a time frame for a new heart, but we simply don't have anything frankly. We will simply get a call one night and that will be it. They tell us the wait is normally 6 months (even though it has seemed much shorter lately), but even after 3 months on the list I have to tell myself every day that "we only have 6 more months of this", as I don't want to pass up arbitrary deadlines and deal with that disappointment.
So for now, we stay on the oxygen. Lillian has a sedated ECHO tomorrow in the cath lab. She isn't getting a cath (as much as I would like her to considering she'll be there regardless), but the only people willing to sedate an infant on Milrinone are the cardiac anesthesiologists in the cath lab. Since they can't leave their posts, we have to go to them. I don't know when we'll get the results from that, but they're almost guaranteed to show decreased function. Hopefully, they won't also show the blockage returning.
On a different note, we met a 2 year old transplant recipient the other day. She's an inpatient but looks like a smaller shyer version of Annabelle, and I assumed at first she was a sibling. She's there because labs didn't detect any Cyclosporine in her blood, which is kind of a big deal, but she looks fantastic. Unfortunately, she now has symptoms of a viral respiratory issue, even though all labs for that are negative. Since she was playing with Annabelle the day before that happened, Annabelle is banned till Wednesday, much to Lillian's disappointment. According to Kathryn, she was extremely bored today, and misses Annabelle. It's hard to describe how much Lillian's face lights up when she sees Annabelle, but it's sufficient to say they're fond of each other.
To counteract this kind of a downer post, here's a video of Lillian laughing while being tickled yesterday. Even though she is declining, as you can see in the video, she still looks remarkably good. Kathryn and I have to remind ourselves frequently that we are extremely lucky to have her in the condition she's in, where we can hold her and play with her. Many families don't even get that.
Today was also the 90th day that we've been listed.
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