Close your eyes and click your heels together three times and then say there’s no place like home! Little did I know that when I used to watch the Wizard of Oz, this phrase would mean what is does to me today. This stay in Boston has turned into way more than I ever would have imagined
January 25th was a long time ago and so much has happened. Brad has kept you updated as much as he can, and I am so thankful for that. So through it all, the surgery, the flu, the pneumonia, the UTI, broken broviak, the PICC line placement, the recurring fevers, fluid restrictions, not sleeping for 8 days and getting 6 teeth; Natalie has been a champ. Of course she is not smiling and playing like she used to but she is doing the best that she can. She has a great fan club here in Boston. Nurses and doctors love her despite her hesitance to let them get to close (she has a large personal bubble). She does let them listen to her 10 times a day, but she has her limits.
Definitely the game all changed when Dr. del Nido said, “if an organ came available tomorrow, I would take it.” He has been the most optimistic this whole time for wanting to take every opportunity to keep her own heart. Dr. Marshall has also been a big supporter of intervention versus transplant, but we see now that is not an option for Natalie. Once we heard that news, we quickly started putting things in place to get transferred back to Minneapolis where we have more support & family, to prepare for a heart transplant. I have been here now for one month by myself and it is so hard. Finding time to sleep is like finding gold in a mountain stream. You just can’t find it. There is no privacy and no boundaries for visitors some days for either Natalie or me. I never thought of myself as “private”, as those of you who know me know that I tend to over-share often and inappropriately, but I need privacy too. I am just ready to come home, or at least get closer to home where we can feel more comfort.
We are now just waiting on the arrangements and for some insurance issue to resolve before we get to transfer. We hope that is soon, but we are realistic in knowing that sometimes these things take time. Each day right now feels like a week when you want something so bad. It’s hard to stay optimistic but we are doing our best. When we get to Minneapolis we will be so happy and actually feel like we are moving forward for Natalie. We will at least have a chance to see friends and family and we look forward to having visitors from home. We are most excited to see Brad more often. We have only been able to see him two days in the last month and that is just not enough.
Sorry that there isn’t a lot of information to share, but we wanted to share a little bit today when I had the time and energy.
A few prayer requests. We pray that Natalie’s health stays well as we wait for transplant and transport. We pray that news of transfer and insurance coverage resolves quickly, so we can get moving and get sleep for Natalie and for myself. We also pray that Brad is able to rest knowing that we are well so far away. God, please lighten our load and calm our fears. Keep us safe and focused on the goal. Keep showing us your love and grace. Sometimes we need the reminders that you are there and keeping everything moving towards your plan for our lives.
We look forward to seeing everyone, and thank you for all the support through text and email. We can’t wait to share better news with you all.