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Evan the Phighter!

Updates on Evan's fight with pulmonary hypertension (PH) are shared on this page.

Latest journal entry

Update from Evan's Heart Cath

Last Wednesday, Evan had a heart catheterization procedure to check the effectiveness of his new medications and to attempt to close his PDA. As far as the procedure, that went very well with no complications; anesthesia can be dangerous if you have PH, so we are grateful there were no problems. Usually, they take the breathing tube out when you are sleeping, and you start to wake up as the anesthesia wears off, but Evan had some bile in his stomach, and the team didn't want to risk him aspirating the bile (it could enter his lungs and be a HUGE problem, especially with PH). So, they had to wake him up first, then remove the breathing tube (poor baby!). So, after this, Evan decided he'd had enough of the cath lab, and got up to walk out! Haha. The team couldn't believe it, and a nurse picked him up and carried him to his room (with the help of Verset/happy pills in his IV). As far as numbers go, Evan's numbers are a little better, but pretty close to the same as they were last November (when he had his last heart cath). When his PDA was "patched" in the cath lab, his pressures unfortunately went up, so that means that Evan needs it open as a pressure relief, so it was not able to be closed at this time. If his pressures get low enough that it can be closed, his peds cardiologist said that it can be closed another time. We are going up on Evan's current dosage of his Remodulin medication, to try to get Evan's numbers out of the severe category; his Mean Pulmonary Arterial Pressures are moderate, but his Pulmonary Vascular Resistance is in the severe category. It is a good thing that Evan is stable and doing well, so we are happy about that. We just are going to attempt to get him stable with a lower PVR. Evan's heart function is great, so it is keeping up right now without difficulty. The articles I read from various research facilities out of different Universities (a lot of times they have grants to complete research studies) state that PH is becoming more and more understood, and new medications (some are existing, but are used for other things) are becoming available all the time. PH has been reversed in some studies too, so this becoming effective for human PHers is what we're hoping and praying for :). Thank you everyone for rooting and pulling for Evan :).   P.S. The above picture is a few hours after Evan's heart catheterization at Minneapolis Children's Hospital, when Evan was driving his car around the CVCC and following around the floor Zamboni haha :). You have to click on it to see it though.

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