She Will Amaze You

The intent of this post is to clarify Ellie's current situation in hospital. I've been posting here and there about what's been going on, but it is a bit confusing, so hopefully this helps!

Ellie is currently in the ICU/TCU at Children's Hospital. She is there indefinitely. Her main problem, at present, is that her face is too small for the bi-pap mask. As she is dependent on the mask to maintain her airway throughout the night, she isn't able to come home until she fits a proper mask. The mask they are currently using is one that has been discontinued due to safety issues, and is only appropriate in a hospital setting, with constant monitoring.

As part of the treatment for PWS, it is imperative that Ellie start growth hormone therapy prior to her first birthday. Although wildly debated, and not well researched, GH therapy has the potential to cause obstructive sleep apnea in non-apneic children. As Ellie already has severe obstructive sleep apnea, introducing a medication with respiratory side-effects could be life threatening. Her doctors do not understand the mechanics behind her apnea, and feel uncomfortable taking any chances with her breathing.

If Ellie can grow, in the next month, big enough to fit a safe bi-pap mask, she will be started on GH therapy, and after a week of monitoring, will be allowed to come home on her bi-pap machine. We met with nursing support this week, as part of our application for night nursing hours. She will still require night monitoring, but probably not as intensely as she presently requires.

If Ellie doesn't grow sufficiently by the time endocrinology requires her to start gh therapy, her doctors have decided that they will need to secure her airway. The will give her a temporary (6month - 1year) tracheostomy, to bypass her obstructions. It is likely she will not require any ventilation, although she will need humidification at naps and night time. The recovery from trach surgery varies, but it is likely she will need to be in hospital 6-8 weeks afterwards. The training course to be able to care for her at home with a tracheostomy is 6 weeks.

So, that's her situation. Best case scenario, she is home at the beginning of February, happy, healthy and growing. More likely, she will be home in time for her birthday, with a trach, and a new lifestyle. The positive to both outcomes is that she will be home.