Uncharted Territory

“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 🙂

7 thoughts on “Uncharted Territory

  1. Erika,

    I have tears rolling as I read this. I just placed a request for urgent prayers for Emerson for tomorrow morning and on. We have a large Prayer Chain through Saint Barnabas our Episcopal Church on Bainbridge Island. Emerson has been prayed for in the past by this group. You have had so many incredibly difficult decisions to make. I send you and Eme my love. I will be holding you both close to my heart over these next few weeks.

    Arms around you,

    Anne Dennon

  2. LOVE ❤ from right here in Omaha!!! I've been following you and Em for years!!! You and her are nothing short of AMAZING!!! You inspire me as a mom and make me beyond thankful and blessed to have found you by accident and be involved in your journey!!!
    MUCH LOVE, SUPPORT and Shared TEARS for your miracle lil sweet angel Em!
    Makayla 😀

  3. Erika, My heart breaks for all of you…I am lifting you up in prayer as you approach Thursday. I pray that the surgery will help Eme and that the recovery is speedy. God bless you all!

  4. Erika,

    I just sat and read through your posts from the last 4 weeks. My heart is heavy for you and your family. I have enjoyed seeing you at school events this year getting to enjoy your boys and be a family; and I know how much you cherish that time. My prayers will be with Emerson as she goes through surgery. Know that you are always in my thoughts, and I am amazed at your strength and your ability to share what you are going through. You are an inspiration to many and God is doing great things through you and Emerson! She is such a beautiful girl! May you find peace and joy in the days ahead!

    Misti Johnston

  5. My hearts hopes, prays and aches with you. Know that you are not alone. God is with you, Em, and your men. My prayers continue for Emerson stability, healing, and hope. I am praying especially for the surgical team and everyone working with Emerson to have focus, wisdom and skill anointed by the Lord. I pray for your strength, peace and hope to endure. I pray for your family to grow closer, stronger and have all your hopes fulfilled.
    Love and hugs, Cindy

  6. Well again were all pulling for you and emerson and praying for good news please keep us posted were all pulling for you and yours hugs

  7. Thank you so much for the catch up blogs. I am so sorry for what has been happening these past few weeks. You and Emerson will be in my thoughts and prayers all day on Thursday…….. Prayers for your strength, for skill of the surgeons, for blessed Emerson’s little body, and of course for healing after going through the surgery. You both are so special……

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