Posted (Tina) in All Posts on June-11-2009

Ella’s day was filled with meltdowns.

I’m not sure that I can describe these meltdowns accurately. It simply starts with Ella just being mad about something, which is not new, but when she starts to cry hard and hold her breath, she desaturates so fast. Literally, her face will look blue in a matter of seconds. Ella is not doing anything different or new, but somehow, her little body is responding differently than it has before.

The worse part in all of this, the doctors don’t know why. So far, her sildenafil was increased over the past 2 days (the pulmonary hypertension medicine), but we have not noticed a difference.

Just today, there were 3 instances where she desaturated and turned blue quickly, but between blowing on her face and an increase in oxygen, we were able to avoid passing out. However 2 other times today, she did pass out on me. And the whole thing was fast. One minute she was smiling, the next minute she got mad and started to cry and within seconds was turning blue and passing out.

It is such a scary and helpless feeling as a mother…to be holding your child and praying that nothing worse will come of the episode. It’s fearful because it is happening every day. I just wish we knew what was going on. I think Ella gets scared too because she can’t breathe.

As directed, I’m going to increase her diuretic tomorrow morning and follow that for a few days. Please pray that this medicine will make a difference for her. If not, we will have more invasive procedures ahead of us in the coming days and weeks.

And all of this, just when we thought that the Bun might be on an upward track. Let me clarify: she has always been in forward motion. But it is 10 steps forward and 8 steps back. So, there is incremental progress but it just always feels like she never gets a true break on the medical front.

As always, trusting in Him who knit her together and has a specific plan for her life. But on emotional days like today, pleading for mercy and grace for our sweet baby girl.

1 Kings 8:28 (NLT)
Nevertheless, listen to my prayer and my plea, O Lord my God. Hear the cry and the prayer that your servant is making to you today.