Tube-Free

Today was a monumental day as this is the first time in over a year that Maggie was tube-free. No more feeding tube and no more broviac or accessed port. It feels so good to be over this hurdle. But now our job is to keep her over it. We will be diligent in trying to keep Maggie hydrated and nourished. Next Monday we will have another blood draw to see how she is doing and hopefully this will come back that Maggie is indeed maintaining on her own.

Andy took Maggie to the GI clinic today for a follow-up with Dr. Khan. She was upbeat (and always has been regardless of our situation) and happy with the way Maggie was looking. Maggie's weight was down a half pound or so from last week. Dr. Khan said that her weight may fluctuate a bit before settling as she has depended on TPN for calories for over a month. We have continued in the last 10 days to divide her fluids in half and because of that, Maggie is becoming more in charge of her calorie intake. Like I said before (and worry more than I should), she really needs to keep her weight and hydration up so that we can move on from these last very hard 5 months.

Maggie also had her labs drawn today in the clinic. Andy took her over after her GI appointment, but after coming home, we got a call saying that her labs were diluted and they asked us to come back in so that they could redraw them. We did so and later found out that her counts looked just fine. Her potassium is slowly rising, but being off TPN now, we requested that Maggie be put back on a potassium oral supplement. We just want to stay ahead of the game this time if at all possible.

I de-accessed Maggie this afternoon when given the okay by Dr. French. When de-accessing, we must put extra Heparin in to keep her line open inside her body. After I did this, I was taking Maggie's dressing off and we noticed that she had a nose bleed. This immediately scared us as we thought I'd given her an overdose. We immediately called the clinic and they reassured us that she was okay. It was a bit of a scare though.

We had wanted to take Maggie swimming today since she was tube-free, but decided that the weather was just a bit too cool for her first occasion. We wouldn't want to freeze her for her first swim. We wait patiently for the day that Maggie gets to go into the swimming pool. For now though, she is quite happy to have her baths back.

Please pray for Maggie that she will maintain her nutrition and hydration. This is a huge worry for me as I've seen when she doesn't maintain either of these. We've done so well in the past month and a half that I just don't want to go back there ever again. Thank you for your continued prayers for Maggie. Hopefully we'll be able to continue to post normal, everyday stories as treatment for this disease (we pray) doesn't give us any more surprises.