I can’t believe it’s only been a week 😅 this past week has just felt so long. 

Part of the process when transferring to a new hospital for transplant is going through the whole evaluation/transplant work up again… it’s a lot. We have met with pharmacy, dietician, psychologist, social workers, case managers, cardiologist, child life, infectious disease… the list goes on. So many new people and in a way it feels like we’re starting all over again. 

Oakley has had lots of new blood work, echos, ultrasounds, x-rays, and a heart CT scan yesterday. The heart CT happened to show that Oakley also has multiple compression fractures in her spine. This was absolutely heart breaking to hear because she has been complaining of back pain for months but after discussion with her care team previously we all thought it was from sleeping in a hospital bed for so long… Once again, my heart just aches for her. Why Oakley? She is always so happy… rarely ever complains… it’s simply unfair. 

Next week she will have another heart cath to collect more accurate data on how her heart is functioning at this time. Her last heart cath was a year ago so the team at TCH wants updated info and to make sure they are not missing anything. While this is all good it’s also so scary because they have been very upfront and honest that if they feel a heart transplant would not be a good outcome, they will not agree to one. Hearing this is terrifying as this is what we have waited and prayed for for almost a year now. She will be presented to the entire team on Friday the 22nd to determine if they still agree to transplant. 

My mind has wandered to so many what ifs… but I have to remember God placed Oakley here for a reason. This is His plan but I am human and my anxiety can feel so overwhelming. Please please keep praying. Please pray that Oakleys heart cath comes back looking even better than the team expects and that the team makes the absolute best decisions for her to have a beautiful life.

She has endured so much… her short 7 years full of so much medical trauma. I wish I could take it all away. We need You God, every single moment we need You. 

Pray for Oakleys strength and stability in the waiting. Pray for peace and God to fill her entire room. Pray for miracles ❤️ 

From an exhausted and overwhelmed mom, thank you from the bottom of my heart 🙏🏽