Progress

Maggie continues to make us happy--she's doing very well. She is down to just .1 liters (that is 1/10) of oxygen and even managed a couple hours today without any oxygen assistance. We never would have imagined last week that she would be at this point. She's also doing very well with her withdrawal, all things considered. She hasn't had any violent tantrums, screaming, or any obvious signs of pain. I think it will be a little while until she is off of the meds that are helping her with the withdrawal process: methadone, valium, and neurontin.

Within a day or a few, we are expecting to be on the hematology/oncology floor--off of ICU. That will be a big relief. I would expect that we'll be hospitalized for a couple of weeks yet, but who knows.

Despite all of her progress, we are still very aware that Maggie has a lengthy recovery ahead of her. They are currently monitoring her urine output as they cut off and reduce her diuretics. That will be an important step. Also, her electrolytes are needing to be balanced and stable. The GI issues that we've dealt with for over a year are going to be slow to recover too and are exaggerated by the withdrawal. It is clear that Maggie needs to stay on TPN for a while; it will take time for her stomach to be able to tolerate food (either formula through her NG tube or regular solid food). Of course the longer she is on TPN, the longer her liver will be taxed beyond what we would like. This illness has caused a delay in our plan to wean the TPN, which we were starting to talk about in February. Now it will be a while for sure. She also needs to regain a lot of strength to be approved for discharge.

Cancer treatments are still on hold and the signs seem to point to a real possibility that Maggie will skip the rest of her treatments--she had been scheduled to have chemo through the end of June which marks her 2 year mark since she was diagnosed. She has been so extremely sick that it is hard to imagine suppressing her immune system any further and making her vulnerable to a new bug or a worsening of whatever she had this time. However, we haven't talked with Dr. French, Maggie's oncologist in Dayton, for over a month. So final decisions about whether or not to resume will require his input. We'll see.

The intense fear of Maggie being in the most fragile situation imaginable has subsided--but this still remains a challenging situation for us emotionally. Of course we are grateful and relieved beyond words to be where we are today. However, as talkative and energetic as Maggie was for the first day post-extubation, she is just a shell of herself now. She rarely has much, if anything, to say. She is awake a lot (almost the entire day since she woke up at 3:30 or so this morning). She is not very active (except for pointing at the TV when she gets excited) and she kind of looks apathetic, or even sad. I don't think any of this is all that unexpected. She's been through a lot. The pictures above paint the picture: she has this look on her face all the time lately. But she looks much more healthy than in past weeks. Her hair alone has changed so much since she was first intubated--we're going to have to figure out how to do little girl hairstyles now.

We are tired and emotionally drained from all that has transpired in the last 46 days in ICU. We'll gladly take it though. We are so incredibly thrilled and relieved to have an end in sight. It is clear that Maggie is loved by so many and has captured quite a few hearts along the way. We can't wait for her to feel better and better and to work her way closer to being sent home!