She Will Amaze You

Sometimes I wonder just how much I actually have control over, especially when it comes to Ellie.

I spoke with Dr. D this morning, on my way out to pick up Jakob. She said that Ellie is likely going to come home tomorrow, this time with our own suction machine, so we can avoid visits like this in the future. She mentioned Ellie's face becoming more and more condensed. It isn't that the mask is pushing her face in, it's that everything is growing around the mask, giving the appearance of a compressed face. At some point, the compression can increase the severity of her apnea, but there's no way of knowing when that actually happens.

Dr. W, who makes all the big decisions, isn't here this week, so we're sticking to the original plan of having Ellie come back in August. In July, at her ENT appointment, in addition to looking at her ears, they're going to scope her airway, to see if they can pinpoint the location of her obstructions. If anything can be fixed, they will try to fix it (so, possibly remove her tonsils and adenoids). Dr. D said that it's unusal that Ellie's still experiencing apnea, given she's no longer a butterball, and carrying extra weight is a primary cause of OSA. There are a lot of things which aren't "normal", for a kid with PWS, so they're going to have genetics come back, while she is here in August, to look at her again (again... they already looked at her a second time!)

Dr. W is the one who originally thought Ellie would need to be trached. DH and I agree, that it's probably the way to go, BUT, and it's a huge one, having a trach would completely change our lives.

Ellie would need 24 hour supervision, all day, every day. Ellie's trach would be capped during the day (that means she would breathe through her mouth and nose during the day, and she would be on a mechanical ventilator at night, hooked to the trach. No more snoozing while she sleeps,someone would always have to be awake with her.

 Obviously, we would have nursing care, and likely a big increase in hours, and every day coverage. The care is respite care, and not guaranteed, so we would have to count on staying up with little notice. You can imagine, I'm sure, that this would be difficult on a day where I have work, or on a day where DH has already been up all night at work, and would like to sleep during the day. Have a child with a trach is hard. Gone would be the days of packing both kids in the car, to take Jakob to school; I wouldn't be able to drive anywhere without someone to sit beside her watching her, in case her trach obstructed. No more solo trips into the city. The car, on my own with the kids, would be out. I would give up a lot of my independence.

Also, no beaches, no pools, no sandboxes, no chalk, no being around kids who are sick, no lots. But, if it meant that Ellie's airway was secure, that it was in her best interest, it would be worth it.

Until August, we just have to hope that she continues to grow, and that her face grows, and her airway grows. Maybe they will find something to help at her ENT appointment. Lots to think about, little I can do to change any of it!