So cool and over my head

One thing I love about the PHA conference is that they open it to medical professionals and patients and caregivers. It's this giant melting pot of super-knowledge, interaction, and feedback. In one of the dinner sessions, the speaker was talking about something so cool, I barely understand it. So I thought I'd share the microscopic amount I understood in the 30 minute presentation :)

Researchers are studying certain gene mutations on something called bmpr2 (bone morphogenetic protein receptor type II) and it's 33 relations that are located on chromosome 2. They seem to have a big impact on the development of pulmonary hypertension. It took years to find these receptors but now a research team is running four different trials to learn more about the role these receptors play in PH. This could lead to a better, faster, and less invasive way of diagnosing PH as well as a new avenue to explore cures to this awful disease.

Science is so cool! I should have paid more attention in biology....sorry Ms. Myers. 

The conference I attended was through the Pulmonary Hypertension Association (PHA)

Bracing for a heart catheterization

[Originally written 4/30/2015]

Good morning, everyone!

Kylie has a big day coming up that we wanted to reach out and ask for prayers on. She's doing great in just about every way -- smiling, laughing, almost crawling, and generally being an adorable little girl.

However, she continues to have Persistent Pulmonary Hypertension (higher than normal lung pressure) and the tricuspid valve in her heart is leaking a moderate amount (meaning that blood is flowing backwards). Her cardiologist can't seem to find a reason. He even took her case to a meeting of all the Kaiser cardiologists, and they were all in consensus that she should have a cardiac catheterization.

Normally, this is done to confirm something that the doctor has already diagnosed, but as Kylie's diagnosis is unknown, this will be more of an exploratory procedure with hopes of finding a cause if there is one. They will be threading a tube through a blood vessel into her heart and lungs to take measurements and pictures. She will be under general anesthesia, and the whole procedure will be about 2 hours, while the catheterization and photos will be about 30 minutes.

The procedure is set for 7:30 AM next Tuesday morning (4/28). We would be most grateful for your prayers for the following:

-That the Spirit will be undeniable in that operating room. We know that God is in her story and there is power in her story. We think it's amazing that her story has reached all the cardiologists of Kaiser; something we never could have done. 

-For Kylie's safety and the doctor's skill. As the doctor talked about the procedure, he was honest that, as with any procedure like this, there are risks.

-For answers, wisdom and peace. That God gives an extra portion of wisdom to the doctor to read and understand the photos. No matter what the results, that we have a direction to move in and peace in that decision.

-Peace for Ethan and Suzanne as they wait in a waiting room.

-Childcare for the kids.

Thank you all so much for your love and prayers and support. You're part of Kylie's story, too!

Much love,

Ethan, Suzanne, Morgan, Sean, and Kylie

[followup]

Dear family and friends:

Thank you all so much for your support and prayers! The procedure went well and without complication. The doctors confirmed much of what they've been seeing on the chest echocardiograms that she's had in the past and they have our next step.

Her heart looks good and there was nothing surprising there. We are so thankful! The measurements of the pressure in her lungs was confirmed as much too high. They tried to give her a gas to drop the pressure and it had no effect. They did notice that one of her pulmonary veins (returns oxygenated blood from the lung back to the heart) looks small, like it's not fully developed. But because of the high pressure it was too risky to take pictures from inside as it could have spiked her

pressure to dangerous levels (we were thankful for that decision ).  

So, our next recommended step is a CT scan of her lungs and pulmonary veins in the next two weeks and we'll see what the radiologist thinks after seeing those scans. The Dr. feels like we've moved away from a cardiac mystery to a pulmonary one now.

Kylie is doing well in post-op and should be able to go home between 3-4 this afternoon.

Love and gratitude to you all, our Tribe!

Ethan, Suzanne, Morgan, Sean, & Kylie

Here we go!

"I did it, daddy..." Good job, kiddo. ❤ #perfect

Feeling so much better now that I've eaten!

We belong to a tribe called Mosaic that lives by faith, is known by love, and is a voice of hope.