Progress!

Gosh it’s been a while since I’ve posted. I suppose no news is good news! Since Isla’s cath in April, she has come off her pump, O2 and her inhaler. That leaves us with 2 oral meds. One is 3x/day and the other is 2x/day. Luckily she likes them!!! We went back for a clinic appointment in June. Those appointments always include an EKG, Echo and consultation with Dr. Ivy. At that appointment she completely lost her cool for the echo. She’s just too young to understand that it won’t hurt… And at this point she’s expecting pokes and prods, so it didn’t go well. Plus, I think it’s hard to get any 2-year old to lay still for 40 minutes. They said they needed to get a good read at the next visit and if she couldn’t stay calm they would have to sedate her. We definitely wanted to avoid that!

We scheduled the next appointment for November 6th and did everything we could to prepare her. We bought a kids boom box with a microphone on it and pretended that it was an echo machine. We practiced on her and her stuffed animals and kept emphasizing “no ouchie”.


We showed her pictures of other kids having echoes and pictures of her doctors and nurses. Then when it came time to head to clinic yesterday we asked Isla’s cousin to come for moral support. It all worked out and she did great for her echo! They were able to get a good read and no sedation was needed.


Unfortunately she got upset for her vitals and EKG so they couldn’t get that done but the more important part was the echo. We are hoping one day she can have a clinic appointment from start to finish without panicking. It’s so hard for me and Matt to see her get so upset.

The results of her echo were great. Her heart is looking very strong. Her doctor wants her to stay on both meds through the winter and come back in March for another echo. If everything looks good in March she can come off the one medication that has liver damage risks and requires monthly blood draws. That will be amazing!!! If that’s the case then she will only need 4 more blood draws!

We are definitely on the right track! It’s exactly 2 years since Isla was in a medically induced coma. It’s been a roller coaster, but we are so thankful that she is doing well and will hopefully be able to put this all behind her. Regardless we will always be a part of the PH community. It’s a complicated, dangerous disease and it needs more visibility and research. We’d love to see everyone at one of the PH races. Here’s a picture of Isla with Dr. Ivy from the race in October.


And I’ll leave you with one last picture of Isla being a kid… as she should be… enjoying some ice cream.

The New (getting kinda old) Normal!

Isla has been on SubQ for 6 months! I’ve been meaning to post pictures of what the process involves, so here you go! You can click on the pictures and scroll through. It’s interesting to think that this is our normal. I see pictures of little ones swimming or running around naked and I definitely get jealous. Isla can’t do that because of her pump. I hope she can one day, preferably before an age where it’s not cute anymore 😉

I have to say, Isla is really amazing when we do her pump changes. It’s like she knows we are doing something serious and she let’s us do our thing. Love our little PHighter!