Ready for Home

Elizabeth has continued to make progress. She is still on 1-2 liters of oxygen to maintain her levels, but thats been normal for her when she gets sick. She finished her last dose of IV antibiotics today and also weaned off the methadone and ativan. So now her biggest issue is that her anti-rejection medication levels are low, one is so low its almost as though her body is not absorbing it. Her med doses have been changed multiple times throughout the past week to try and get her levels back in check. Before this illness she had pretty much maintained her levels with no real changes to the doses. Of course, this is really concerning to us and the doctors. She is also having to take magnesium supplements due to her levels being low. So for now the plan is to be released tomorrow, knowing that she will have to continue having labwork done when we get home, possibly multiple times a week until her levels are back to normal. And returning back here in a few weeks for a follow up and then more frequently until we kind of know what kind of damage, if any, this major illness has caused. She will be checked again for signs of rejection when we come back and I am praying for only good reports.

The past few weeks have been hard, after being home and "normal" for 3 1/2 years except for a two short hospital visit.  I honestly question how we made it through those long months in the hospital before/after transplant. Elizabeth absolutely hates the hospital! She refuses to talk to anyone or participate in any of the therapy services that have stopped by.  I actually feel kind of bad for how much she ignores them. But with all she has been through, she just wants to go home. She hasn't talked very much and hasn't stood up or walked much. She is still pretty weak from being so sick, so we know it will take some time for her to recover.  We are hoping being back home and getting back to her normal routine will really help her with getting back on track.