The ICU doctors told us Phoebe was in respiratory failure and once we arrived in the ICU they quickly put her on a biPAP machine to help her breathing. The mask covered her entire face and she screamed at us to help her. We stood by completely helpless, only able to offer our voices to comfort her. When we tried to explain that the mask will help and it will be okay, she screamed "it's not okay". That is Phoebe's standard reply to "it will be okay", and she's right. None of this is okay.
Thankfully her breathing improved with the help of steroids and the biPAP machine - she tolerated it for about ten hours before she pulled it off her face and demanded she get a break. She is still requiring oxygen all the time via a regular mask and she recently tested positive for adenovirus in her blood, stool, and sinuses - it is also probably in her lungs.
The best and really the only way to completely get rid of any virus is with an immune system, something Phoebe doesn't have. There is a drug available to treat adenovirus, but it is very toxic and hard on the kidneys. We were hoping to use an investigational drug, but it is only available on a compassionate care basis to kids who are unable to receive the first - for example if their kidneys are failing. We are trying all we can to get the less toxic investigational drug, but because it would take at least a week even if it were available and Phoebe is very sick with adenovirus now, we are giving one dose of the available drug, holding our breath, and hoping it helps.
There are so many obstacles and challenges for Phoebe to overcome that it is overwhelming and really just devastating. Each time we move forward, we take a step back. Phoebe is strong and brave and she fights so hard, but she is also five years old and deserves so much more than this. Despite all that is going on, when Phoebe isn't telling her nurses and doctors exactly what she thinks - she smiles. She laughs at her Daddy's jokes, she paints and does crafts. She listens to her favourite music and reminds Mae to do her homework. She keeps all of us on our toes and reminds us what is important.
We are holding on and hopeful for brighter days. We hope to get out of the ICU. We hope to get out of the hospital. We hope for a better quality of life for Phoebe, and we pray for healing and relief from all of this. One day at a time.
One thing is for certain, Phoebe can feel the love and prayers and this brings us so much comfort. Thank-you all for keeping Phoebe in your thoughts and prayers and for the beautiful messages of love and support.