Clinic Update - Removing Many Meds

Lillian had her weekly check up today. We have started the process of taking her off Prednisone, a steroid and one of her anti rejection meds. This drug has several other drugs that are used with it, so by removing it, we can take her off of Ranitidine, Nystatin and Valcyte. That means she's down to 6 meds by the end of the week, a far shot from the 20 some other families are on. Overall, she's doing great, very happy to be home.

Still Returning to Normal

It's been about two weeks now since Lillian was discharged from Children's and we're still getting some things back to normal. In terms of numbers, her Cyclosporine (main anti-rejection medicine) has been dangerously low since she was admitted, as low as the mid 70s at one point. Her most recent labs taken Friday are at 227, so much better. We still need to get them a bit higher, to 250 to 300, but it isn't dangerously low any more.

On the other hand, some bad numbers are a bit higher. One way to check for rejection is to check for antibodies in Lillian's blood that match antigens on the donor heart. You might remember that these levels (called redundantly HLA antibodies) were one of our biggest concerns, with the DR-17 antibody levels specifically indicating an immune response to the heart. That level had been undetectable for a while, but we've seen it pop up again, at 20 (under 20 is reported as undetectable, so it is low, but back). She's also tested positive for antibodies to a new antigen though, this time DQ-2, at 41. This is likely part of her body's response to the flu, but it is worriesome if that antibody is introduced to her system, as it matches one of the donor's antigens. There's nothing we can do at this point but monitor, and it doesn't seem like an issue yet, so we're just watching it for now.

Aside from drug and antibody levels though, Lillian seems to be doing much better. She is back to her normal happy self, and seems to be thrilled to be home again. Lillian has labs and an echo tomorrow to make sure everything is still normal.

An Update on the Last Couple of Weeks

I know I've been relatively quiet in the last couple of weeks, so I apologize to those seeking updates for the silence. Turns out that having a ten month old and a new born keeps you pretty busy.

Last time I posted (over two weeks ago, yikes!), we had discovered that Lillian had a med level that was 2 to 4 times higher than it was supposed to be. At the time, we thought that was the cause of Lillian's issues, but once the rest of the family came down with flu like symptoms, it was fairly obvious that was a factor as well. Lillian managed to get good enough for Children's to discharge her after 4 days, but she was back again 2 days later (Wednesday at this point) due to worsening symptoms.

It turns out that the 1-2 punch of med levels and flu caused her to lose the lining of her stomach (we think, we would have to do a biopsy to tell for sure, and that isn't worth it). Turns out that the med that was high (CellCept/MMF) interferes with the normal growth of the stomach lining. Normally this is just something we have to live with, but at 2 to 4 times the level that it was interfering more than we would like it to, and the flu/whatever she actually had just caused it to get worse.

We ended up spending about two weeks total in the hospital, trying to get Lillian's symptoms under control and get her back up to speed. For most of the stay, she was on Pedialyte so we had to switch her back to normal food, which she couldn't digest, only causing more issues. In the end, we had to switch her back to special formula (Alimentum) which is broken down more than normal formula so it is easier to digest. We finally got her to the point where she was digesting enough for her to come home last Friday, although she continues to show some symptoms. Her demeanor however has returned to normal, so she seems to at least be feeling much better.

Annabelle immediately returning to form upon arriving at Children's

Of course, the MMF level isn't our only concern, as Lillian's lack of digestion also caused her Cyclosporine levels to dip in the 80s (we want her 250 to 300), so now she is sick due to that readjusting to normal. On the bright side, the low levels probably allowed her to fight off the bug a little better. To help her recover, we've switched her from MMF to Azathioprine for now (rejection meds with similar methods of action).

The other girls are doing fine. Ailah is healthy and eating well, and Annabelle turned 3 today. And now, pictures.