The Past Week

It has been some time since we last updated. That has mostly been from me being very ill with a respiratory infection. Unfortunately and frighteningly that did not prevent me from having to care for Elias, even in my state. Of course due to nursing staffing issues which I believe lengthened my recovery time needed for this. I was very careful donning masks and gloves whenever I came near Elias! He seems to have not been contaminated thankfully and I am close to recovery myself, thanks to Katharine picking up the slack when she was home. It was very irritating that we even had to expose Elias to this.

Elias continues to improve each day and is getting back to his mobile state. Last Thursday he had the Foley catheter that was left in after surgery removed. That was what was really causing the majority of his discomfort and limitations physically. He was tentative the first day it was out but you can see he is realizing that it is gone. We are continuing to give him IV antibiotics here are home 4 times per day. Other than that there has not been much going on. We are regrouping everyone on the hearing issue so we will have several appointments in the coming weeks to get this new plan of intensive aural rehab therapy going. We also have our end of period meetings for his therapies and looking ahead toward new goals for the next 6 months. His medical team is getting together to determine what the next priority is surgically so that we can pair it with the eventual colostomy reversal which can occur anytime after 8-12 weeks. Sadly yes, there are still several more surgeries that Elias must endure. Wish there was more to report especially since there was so much time between updates, but in Elias’ case sometimes this is a positive thing.