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.

Slow and Steady Wins the Race

It’s amazing how hard it is to get anything done when you have a little one. I’ve been meaning to update since Isla’s last PH Doctor appointment which was March 14… so here we are, almost a month later 🙂

The actual appointment was tough because we had to move her site again while we were there. The one in her arm had dislodged and started bleeding, so we moved it to her leg. That was the third site in a two week period, so it was not ideal. Her leg got very swollen and she was in pain for a few days, but everything went back to normal and so far the leg site has “gone to sleep” as they say. Really the only sucky thing (well not really the only thing) is that we have to give her a sponge bath because we can’t submerge her in water 😦

Here you can see how swollen her poor leg was-

 

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Isla had an EKG and another Echo at her appointment. It was her first normal EKG. Woo-Hoo! The Echo looked the same as it did in February. Not better, not worse. Her Doctor said that normally he would increase her meds because she is growing, but he did not increase them. His hope is that she will keep growing and she will continue to improve and it will get to a point where she outgrows the meds. His goal is to get her off of the SubQ Remodulin, but she would remain on the oral meds for “a while”. We will take it! If we can get her off the pump, it would be absolutely life changing! Oral meds are NOTHING!

I keep trying to figure out why this is happening to Isla. There must be some sort of reason, right? I just have to remind myself what a good friend told me- “Don’t try to figure out why… just be with your daughter and love her unconditionally!”

It’s hard not knowing what the future will hold. I just hope that Isla’s Doctor has the right hunch and that she will outgrow this. He has to be right! He just has to!!! We will keep chugging along, slow and steady… we will get through this…