Well she did technically make it home for Christmas. Myles and Stella came home Wednesday the 24th in the afternoon. The late afternoon/early evening can be a bad time for Stella, and unfortunately soon after, she had another episode of high heart rate, lower oxygen and slight fever. It was hard to see her home and still doing so poorly especially with some of our family staying with us for the holidays. We were obviously nervous that perhaps we and the doctors had been a little too eager to get her home for Christmas but we did our best overnight to manage her with the help of our night nurse. She did have an okay morning and we were able to open some of her presents but she did quickly tire.
She had yet another episode including some vomiting that afternoon and despite giving Tylenol and Advil as often as possible she was quickly becoming unstable. We made the call to bring her back into Sick Kids after consulting with the Chest Fellow via phone.
Since we’ve been back she hasn’t had such severe episodes but she is still having unexplained high sats and low oxygen, far from her normal and is completely bipap dependant. She gets very upset when we try to take her off even for short periods. They are treating her with antibiotics as her white blood count was high and her X-ray is a little more foggy than her last. The most concerning thing we are currently battling is air in her tummy. Because she has been on continuous bipap for the last 3 days and she is in distress, she is breathing really hard. And working really hard at breathing – like running a marathon. So as a result, she is sucking in a lot of extra air into her tummy and although we are venting her Gtube on a nice slow continuous feeds, we are withdrawing 60+ mL of air every hour from her tummy. This is obviously very painful for her, and distressing for us, as she is already a very complex case and its adding another level of complication to her already very confusing situation.
The end to this is not in sight quite yet. We will have to work her up to home settings on bipap and feeds before they will let us go home and we are currently a long way off. This is especially hard on us as our holidays are slowly slipping away and time to recoup and time to spend having fun with our family this Christmas seems to be slipping with it.
Thank you for thinking of us. We are trying to be strong for her. Despite all she goes through she is such a trooper, and if can be, so can we.