Greetings #TeamElla,
Our Conqueror continues to grow stronger day by day and become more accustomed to her trach. She is still very sensitive when it comes the tracheostomy site. She gets very upset when we have to adjust or clean or do anything with that site, but that should hopefully lessen with time and as the site continues to heal. Mom and Dad have started some basic training on how to manage and care for Ella with her trach. Mom changed the straps that hold the trach in place on her own yesterday and both parents have had to suction through the trach. As we learn and do more with the trach we are very close to leaving the hospital and getting one step closer to going home.
Within the next 24 to 48 hours we should be transitioning from Yale New Haven PICU to Hospital for Special Care in New Britain. While at special care Ariella will be engaged in significant rehabilitation to regain her strength and coordination. Mom and dad will engage in very intensive training and learning to prove we are able to not only maintain Ariella and her trach but also be able to intervene in times of emergency. Our ability to prove we can keep our baby safe will be the only thing that keeps us at special care. The sooner we can prove that we can keep her safe the sooner our family will be whole again in our new home.
Some amazing members of this team have reached out to us to offer their support and guidance as well as the benefit of their experience living with a trach or caring for someone who has a trach. I think now that we have a clear understanding as to the timeline and what will be required of us it will be easier to have some of those conversations. I look forward to connecting with those members of this team that can provide us with insight and context that will not only give us a sense of what to expect but also give us an advantage in our training so that we can get home that much faster.
We are getting closer team, there is a light at the end of this tunnel and it is big and bright and beautiful. Thank you all for your unwavering support and commitment. Please do not relinquish your tireless prayer and concern for us. We have made it through some very dark times but we still have a bit more to go. We are grateful for your constant intercession, is working. Through you Christ has carried us this far and we look to our God and friends and family to carry us home. We are all more than conquerors.
She looks great! Learning to care for the trach is overwhelming at first but as parents you will learn quickly! It becomes second nature! My prayers are with all of you!
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