Isla was a champ! We were able to go back to post op as she woke up. We had to keep her flat for an hour which was hard because she woke up pretty quickly. We are now back to the floor and will hopefully be able to go home today!
Her cath results were really good. It’s all quite complex, so the quick version is- she still has mild PH but her pressures are much closer to normal… Not quite normal, but close! We have the green light to take her off the pump and keep her on oral meds. We will continue to do echocardiograms and ekgs in clinic regulary and just hope that she continues to outgrow this. Our doctor is hopeful but also prepared us for the fact that since we don’t know why she has PH in the first place, there is a chance it could worsen later. However, the outgrowing theory seems to make sense and that’s what we will focus on.
Thank you all for for love, support and prayers. This was a really stressful couple of days and you kept us strong. We are joyous that we can report out good news. xo
Overall yesterday went pretty well! Being in the hospital brings up a lot of emotion for me, Matt and now Isla. We checked into the hospital around 1pm. As soon as we walked into the room, Isla started panicking. Just getting the pulseox and heart rate stickers on her was a struggle. They informed us that she would need to have an IV before coming off the pump… Just in case. Getting the IV in was tough. She started freaking out when the nurse walked in, before he even touched her. Both Matt and I took turns holding her and it took 2 sticks to get it in. When I was holding her I noticed her diaper get warm… I definitely think it was a fear response. But man, I have to say… In moments of fear, she fights!!! What a brave little girl! The plan was to get an Echo and an EKG yesterday as well, but after the nurse witnessed her IV experience, they decided to wait until she was under anesthesia for her cath.
We headed to the pre/post op area around 6:30am today. They ran through the details of the procedure which was unbearable. Then they let us go back with her until she fell asleep. She fought that too. They gave her something to take the edge off and then put on the mask. It was nice to be in there with her, but also really hard. Our nurse just came out and told us that she is under and her breathing tube is in and she is stable. He said she is in good hands since the anesthesiologist wrote the book on anesthesia and pulmonary hypertension… Literally… He had lots of information on the topic published. Isla’s procedure will be a part of 2 research studies as well, so her hard work back there will help lots of other people with PH. Please keep her in your thoughts and prayers. We are excited to see her in a couple of hours. I will update again after… xo