Charly's First PICU Stay
Charly came down with the Rhinovirus which resulted in very severe Pneumonia.
Thank you all for sending up your prayers for Charly. Tuesday night we administered albuterol nebulizers and morphine for comfort at home, but when it became clear that it wasn’t a minor blip, we decided to admit her into intensive care. This decision was very difficult because we had such a difficult time getting ou of the NICU. It’s almost like checking yourself in to jail. We knew if we didn’t take her in, she wouldn’t last the night. Once admitted, her breathing declined rapidly. At home we increased her oxygen from .5 to 2. In the ER she was increased to 10LPM and soon after arriving in the PICU was put on the ram cannula. She didn’t have the best night last night and had to be bumped up to higher settings. This morning she was struggling even more so she is up extremely high on her oxygen and pressures. If she continues to decline she will need to be intubated. The panels show that she has rhinovirus and the X-ray shows bronchiolitis and pneumonia.
“It’s like having the most beautiful gemstone hidden in your pocket. You want to wear it on your neck and show the world, but you know the second you take it out it will turn to dust. Do you keep it hidden, for just you to enjoy? Or do you let others share in the beauty, even if for a short time?”
Her decline happened so quickly and unexpectedly. One minute she was great, the next she was struggling. Everything was going so well at home we almost thought things could never be bad again. We started thinking that maybe this was what life would be like and we were really loving it.
Bursting Our Bubble
It has become clear that the last 2 months was an anomaly. Our life with Charly has been and will continue to take place in a hospital. We can’t prevent her from getting sick. If we could, there wouldn’t be such a Thing as “cold and flu season.” It’s just a question of how long will we have good days at home before she gets sick again? And how many times will her body allow her to recover?
All of this just reminds us how fragile her life truly is. For a baby like Charly, the common cold is life threatening. Our sniffle is her intubation. We know at any time the most basic virus could take her out and with her very complex history, it’s highly possible that she will not bounce back from future hospitalizations. We can’t keep her in a bubble, nor do we want to.
Over the last 2 months we’ve been able to have friends and family love on her in our house. We’ve taken her to mass and she’s gotten to experience the fresh outdoor air. We want her life to be filled with more than our house turned hospital and her parents turned nurses, but not at this cost. As much as we want her to be loved on by everyone in the world, we want her to be healthy and alive. It’s like having the most beautiful gemstone hidden in your pocket. You want to wear it on your neck and show the world, but you know the second you take it out it will turn to dust. Do you keep it hidden, for just you to enjoy? Or do you let others share in the beauty, even if for a short time?
We truly believe that her breathing has improved before and she is strong and will do it again. Thank you for your prayers and please, keep praying.