Olive, myself, my mom, and Birdie traveled to Houston this week to visit the Texas Children's Hospital (TCH) lung transplant team. Starting at 7:30 am on Monday Olive has had appointment after appointment, met doctor after doctor, sat in various waiting areas and exam rooms. We have two more days left and then it is home on Friday.
Some of you may be wondering, "does this mean Olive is going to have a lung transplant?" Well, the answer is complicated.
Right now we are almost certain the medical review board will say that Olive is not ready to have one. She is "too well," even though her lung functioning is very low. Lung transplants have a high percentage of organ rejection and all of Olive's team wants to delay a transplant as long as possible. TCH is number one in the country for pediatric lung transplant, which is why we are here. They are so knowledgable and although no one is glad to be here, we are also feeling like this was definitely a good step for us to take.
Some might wonder, "why would you go have a lung transplant evaluation if she is doing well?" We don't know how long Olive will stay stable, it could be months or years. Now is the time to seek information and ask questions. We know what it is like to make decisions and take in information during a time of crisis, it is not ideal. If a lung transplant is chosen for Olive it would involve moving to Houston for a period of time while awaiting a transplant and staying for at least three months post-operation.
We will come back in a year to see the team again and stay in close contact with the various doctors here. They are sending us home with recommendations for Olive that will hopefully strengthen her body and in turn her breathing.
Throughout this week Olive has quickly made an impression on the lung transplant team. Today a doctor, not the one we are working with, came in to see her because he had already heard such wonderful things about her. Of course she has shared her art and will most likely have some commissions from the Houston area very soon.
I don't know what the future holds for Olive in terms of her health. I do know that we will continue to live in a space of hope. We will acknowledge how beyond horrible it all is, while also trying our best to think positively.
Please keep Olive in your thoughts and prayers. Send her the positive energy to keep her mentally and physically strong. She has saved enough money through her Etsy shop to purchase an electric scooter so she can keep up with her friends, so you may see her zooming around our neighborhood soon!
I encourage everyone to live joyfully, be thankful for the mundane and those everyday life moments. Donate blood, vote for people that support science, don't take life for granted, hug your people, spread love and kindness.
Thank you for all your support,
