Alex and Maddy

Alex and Maddy

Monday, May 1, 2017

Working on a Plan

Sorry for the lack of updates. It is hard to know what to say when so much is still up in the air.

I will start with Mom...She was discharged this morning and is doing MUCH better. She still isn't eating a ton, but is close to back to normal.We decided that it would be easier for her and Maddy to be home and in their own space so I took them home this afternoon. I ran to the grocery store and got them what they needed for a few days.

Alex had his repeat echo this morning. He was a little mad at me at first that I hadn't told him what was going on, but he got over it pretty quickly.  I haven't seen the official report, but the tech did not feel like she got any views that were going to be definite that what they are seeing is not yeast.

We saw both our hospitalist and Infectious disease doctors. Everyone has agreed it is not safe to replace the port right now. So we know we will be going home with the PICC line (in his arm) for some time. We have already been told that we will most likely be treating for 6 weeks with the antifungals. (We also still have another week on the antibiotic).  The main question at this point is if we need to sedate him to do the trans esophageal echo or just treat for now and look at his heart when we go to replace the port. The Infectious Disease Doctor was going to call the hospitalist, a cardiologist and our immunologist from Houston and get everyone's thoughts before making a final decision. She hopes to have a plan for me by tomorrow. Regardless, it looks like we should be going home by the end of the week as long as Alex behaves!

Because he has a mild case of Pancreatitis we are not doing feeds so he will go home on TPN/IV fluids pretty much around the clock. We are hopeful we start to see some improvement as we have 33 days till we leave on our big trip!

Thank you to everyone for you thoughts and prayers.
Ali

No comments:

Post a Comment