Today was extra special because Tommy and I switched off mid-day and I took Kaya and Laney out to lunch. The first hour was a pretty horrendous show of crying for attention and fighting with each other, but the post-food second hour was nice. Meanwhile, Maggie had a great day at the hospital, and now begins my week to try to convince our BMT team to discharge Maggie. A lot of things have to fall into place – she needs to get off diuretics (or at least on a stable regimen), she needs to prove that she doesn’t need platelets daily, she needs to have a viable plan for taking oral medications, and she needs to be on a limited number of IV meds that I can do at “home” (ie, the Ronald McDonald House). Her CMV is also still active, but I doubt that would keep her inpatient. Currently she is on 6 hours worth of IV meds, which kind of seems like a lot, considering she will have a clinic visit every day which will take a few hours as well. But she is looking quite good – she is very active, eating well, and feeling good. We went down to the Children’s outpatient clinic waiting area today and (after I obsessively disinfected everything) she walked for a while using a toddler chair.


3 thoughts on “Campaigning

  1. Glad to hear that you were able to have some time with Kaya and Laney… even if the 1st hour was a bit of a challenge!! I’m sure they were happy to have you to themselves. There’s going to be that sibling rivalry when they are sharing that limited time. You all survived. Best of luck with your discharge campaign!


  2. It is nice to hear that Maggie is feeling great. I can see why you would like to have Maggie leave the hospital. However, would she have access to needed meds or equipment should she need them, I.e. Oxygen? If it were me, I would follow the advice of the Doctors who have had experience with post transplant hospitalization care. Should Maggie be moved too soon, would she be returned to the BMT unit, if found necessary?


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