Small Wins!

Today we had an appointment with the Pulmonary Hypertension team at Children’s. Isla had another echo today. The results were really encouraging. The right side of her heart is smaller and the left side of her heart is going back to it’s normal shape. Our Doctor said that sometimes it takes years to see this type of progress… and sometimes they never see it, so it is very promising. Their aggressive treatment is definitely working! She still needs to remain on all of the meds (4 oral meds and one IV), but it’s possible that it won’t be forever. We are really excited but also want to stay slightly conservative with our reaction. We don’t want to get our hopes up, so we’ll take days like today as a small win and just hope that we continue in this direction. We still just need to focus on one day at a time!

Here’s a selfie from today at our appointment:



Dad having fun with Islabug while we wait for the Doctor:Image


Next Stop- ER!

We really filled the day… worked 8 hours, bought a new car, went home and made dinner, went to ER, got pulled over, went home… phew! Isla has a picc line in her right arm which has been there since the beginning of November. Her IV meds are delivered through the line, but on Tuesday night, we noticed the line was coming out of her arm and was slightly kinked. Here you can kind of see:


So we paged the PH team and they told us to go to Children’s ER to get an X-Ray to see if the line had moved too far out of place. Luckily it was okay, so we were able to go home. Had it moved, we would have been admitted and they would have needed to put in a temporary IV which would have been traumatizing for everyone. It’s going to stay in for another week or so, until we move to a more permanent option.