Two steps forward, one step back

Well, after all the excitement about no more O2, Harlie is back on O2. (one of the topics with kids with heart defects is whether or not it is safe for them to ride roller coasters - well, who needs to ride a roller coaster when that is your life???)

Anyway, her hemoglobin was low (the red blood cells that carry oxygen) so they had to give her some blood Monday night. We thought that would help bring her sats back up and I hoped that she would be off O2 by Tuesday morning. But as is the medical juggling act, the added blood meant fluid overload for her body, so she developed pulmonary edema (fluid build up in the lungs). And that certainly doesn't help bring up sats! They gave her lasix through her g-tube, but that didn't work. So they had to give her lasix through her IV (they are absorbed differently). They are working on getting all of her meds to be through her g-tube in preparation for removing the IV soon (which is a good thing). So, unfortunately, she is still on O2. But hopefully once everything gets balanced again, she won't need it.

On Monday, her belly wasn't tolerating the Portagen. They stopped her feeds for most of the day and then started them again at a very slow rate. They also put her on a few meds to help the food empty from her stomach faster (I'll spare you the medical speak on this topic). And 24 hours later it seemed to be working. So, we are keeping our fingers crossed that those meds do the trick. We decided that we would rather not put her through any more tests (gastric motility or modified barium swallow studies) unless absolutely necessary. So, we're trying the meds first and we'll see what happens. She will get another x-ray in the morning and if it does not show any effusion, they are going to pull the chest tube out. (YAY!) Then we can hold her again. We tried a couple of times, but it was just too uncomfortable for her. So, despite a couple of steps back, it is still progress. Hopefully we are in the fine-tuning phase.

As always, thanks for all your support and prayers!

Hope you are all well,
Christy