“Uncharted territory” – that’s the word from the surgeon this morning. To be clear, the removal of one’s native kidneys post kidney transplant is not new… for the team here in Omaha, though, & in the context of everything else going on with Emerson, it is. We found documentation and a case study to suggest the potential benefit from such a procedure, but none discussing the outcome in a child post 2 multiple-organ (liver, intestine, pancreas, kidney) transplants, complicated by all her additional “issues”.
Surgery is scheduled for Thursday morning.
I’m at peace & believe this is the right thing to do. In all, it’s giving me HOPE for more time. Emerson “looks” good, but her needs are so significant and her electrolyte imbalance is so fragile, that she’s at constant risk for a sudden & devastating event. I’m hopeful this surgery will bring her some stability and me some sanity (& more restful sleep).
I’m incredibly disappointed to miss another summer with the boys. I have an acute awareness that they are growing up quickly & my remaining time with them is short. It is the hardest part of this journey… it always has been. There is nothing that will bring tears faster than the thought of how this all has affected them. They are well-adjusted & good boys, though – they’ve learned compassion and patience and an appreciation for life well beyond their years. I’m not sad for them, just me – sad that I’ve missed so much. This is where Emerson needs to be, though, so this is where I’ll stay.
I don’t think anyone knows what to expect this week. It could take weeks for Emerson’s body to adjust to the procedure… days… hours. No one knows. 4-6 week recovery is a very loose estimate – it could be much longer, or shorter. I’m going to remain positive & hopeful for the latter :). There is a lot of interest and discussion here this week, as they prepare to enter “uncharted territory” in an effort to improve life for my little girl. I’m so thankful to have a team that cares so much.
And the journey continues… one small step at a time… blanketed in HOPE 🙂