Rehydration

We went to the clinic today, as we've done the last 3 months after steroid week, to get Maggie rehydrated with fluids. Maggie's numbers showed that she was dehydrated and that she had potassium loss once again. The horrible part to all of this is that we found that she has lost a pound and a half since last Monday as she is down to 20 lbs. 5 oz. She is almost to her lowest weight before they decided that we needed to change things and began TPN.

As I drove Maggie to the clinic today, I called Cincinnati Children's GI nurse who've I've been in contact with many times over the last week. I told her we needed to become more aggressive as the Imodium is not doing the trick. After lots of back and forth conversations today, Dr. Mezoff decided to try the pancreatic enzymes. I also found that one of her lab results on her stool sample showed that she was in the moderately low level of absorption of Elastase. So, with this in mind, they hope that perhaps the enzymes will help her body absorb better and for me, I feel like this is the last viable option. If the enzymes don't work, I don't know what will. Please pray that the enzymes will be the solution to this 9-month problem.

We had Dr. Dole today, another oncologist at Dayton Children's, versus our primary doctor, Dr. French. I won't share my feelings about Dr. Dole, but to say that he goes about treating patients and discussing with parents much differently than Dr. French. With that, Dr. Dole did things a bit differently in that after they gave Maggie a 2 hour bolus of potassium, they rechecked her levels (something they haven't done the last 2 times). After rechecking her levels they found that they dropped rather than raised. Maggie came in with a potassium level of 2.7 (normal 3.7 and above) and after receiving fluids had a level of 2.2. They rechecked it and it came back at 2.4. Dr. Dole came in and told me that they were going to keep Maggie overnight because her levels were critically low. To Andy's later chagrin, I talked Dr. Dole out of keeping her overnight, even though he was uncomfortable doing so. We were being sent home on IV fluids overnight for 3 days, and I have witnessed Maggie do this 3 times now, always to see her levels rise the next day. Along with that, Maggie has been in a very good mood, talking away and not even being a bit crabby with no nap today. So hopefully things will continue the way they have in the past and Maggie's levels will rise by tomorrow.

The plan is that Maggie will be accessed until at least Thursday, receiving IV fluids overnight for 12 hours. Home care will come out daily to draw labs to see what her levels look like. As long as things go well, she'll be off fluids then. This is a new protocol for us, as in the past we have gone home de-accessed and Maggie has done fine. But I think they are doing this per request of Dr. Mezoff (he had wanted Maggie on fluids throughout all of her steroid week, which Dr. French wanted to wait and see if Maggie would hold her own). The other main change will be those pancreatic enzymes. I am told that they work pretty quickly and we should see a change within 3-4 days to a week. Again, please pray that they work because if not, I don't know what will happen next and Maggie cannot continue this way. The poor girl is skin and bones with a protruding belly. It's just not fair to her at all.

Please pray for Maggie in these coming days as she rehydrates and the enzymes take effect. Let this be the healing answer to our countless prayers.