Support Max and Pulmonary Hyptertension

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Hi, and thanks for joining us on this twisting journey of life. My name is Rebecca and I’m Max’s mom. Max has pediatric pulmonary hyptertension. It’s a chronic, progressive, lifelong disease that affects the lungs and the heart. I’ve started this gofundme to raise awareness for this one in two-million disease and if you’d like to rally in support—thank you!

Pulmonary hypertension means that Max has high blood pressure in his lungs. This is caused by his blood vessels. Normal blood vessels may be as big as a milkshake straw. Max’s blood vessels are like juice box straws and his heart is having to work extra hard and because of that heart failure is a very real concern on a daily basis. Because this disease has no cure, big, scary things are looming in Max and our futures including regular surgeries, blood thinners, and lung and heart transplants.

How on earth did we find out that Max has such a rare and life-threatening disease? We were traveling back from Hawaii from fall break and once we disembarked the plane, Max fainted right off the gangway 4 times in succession in what we now know was heart failure. So scary. One general doctor follow-up appointment from this airport scare was all it took. The visit escalated from “That’s an unusual blood pressure result,” to “Let’s take an EKG just to be sure,” to “you need to take your son to the emergency room right now and I’ll call ahead.” Sobbing quietly while driving to the emergency room with Max blissfully unaware in the back seat was not something I ever imagined I’d be doing—especially with my baby boy.

Five days, many prayers, and one surgery later we got a diagnosis: pulmonary hypertension. I tend to keep things close to my chest, but this has been hard.

We now have a medical team of pulmonologists, cardiologists, virologists, radiologists, and nearly every other -ologist you can think of. They are wonderful and have helped us navigate this scary earth-shattering diagnosis.

We also want to include you in Max’s journey.

Because Max’s disease is so rare and the signs of heart failure and oxygen deprivation can come on suddenly and are very subtle, every adult has to be trained in what to do and our family’s stress baseline are…a little elevated (understatement of my life). This disease has impacted every aspect of his life from running and jumping, swimming, travel, life expectancy and even something as simple as walking in the mountains. Donations and gifts and all the support you’ve assembled will always be a welcome aspect of our lives now and as Max grows.

For the help and support you give, thank you so much. There are a lot of unknowns going forward It takes a village to raise a child and thank you for joining us and helping expand our borders and making our life a little easier.

Here are some things your help would be used to support:

-medication

-respite

-therapies

-ice cream after visits to the hospital for tests

-mental health for Max

-accommodations for travel

-basic tests every 6 months

-lung biopsies

-gas to and from his medical appointments

-special outings to take his (and our minds) off his disease

-oxygen tanks and supplies

-extracurriculars that he can safely participate in (chess club)

-toys and books for the hospital appointments

-babysitters

If you’re local here are the ways you can help that are not monetary

-walking the dog

-spending time with our children

-carpooling

-babysitting

Thanks for loving (and assembling for) Max and our family.

UPDATES BEFORE I FIGURED OUT HOW TO USE THE UPDATE FEATURE:

UPDATES STARTING WITH NEWEST FIRST (If you're new here, welcome and scroll to the middle):

UPDATE 9/25/23: Max’s surgery is on Oct 16th and if you can spare some prayers for his health and that the doctors can get what they need and find what they’re looking for, hopefully all of that will add up to answers for us.

UPDATE 9/19/23

We had our follow up appointment from the summer and it was a good one. We are not moving! There were some minute differences between living in at sea level vs at elevation, but nothing big enough to concern the doctors. A huge blessing we are really grateful for.

This appointment, however, we found out that Max has some unusual spots in his lungs that are showing up on the CT scans, which are not consistent with what you'd typically see in pulmonary hypertension. Which means, the doctors would like to perform a biopsy on his lungs and start figuring this out. The biopsy will likely be before October hits because Max has to be healthy so it doesn't mask the root problem. We'll probably be masking for the next two weeks to ensure he stays healthy.

At this point, we still don't know why Max has PH at all. So hopefully this biopsy will provide some answers and we can treat the problem. Please keep your fingers crossed and pray for the doctors to find the answers they need. (Pictured below is Max enjoying his sugar-laden treat for enduring 5 hours of appointments and tests in the hospital—Thank you for making this happen)

UPDATE 6/1/23

We've been told to live at sea level for a few months so see if that affects his heart health. So this summer we'll be staying in sunny CA and enjoying everything that state has to offer!

UPDATE 5/28/23

Max is officially off oxygen at night!

UPDATE 4/22/23

With all the treatment, Max is now only on oxygen at night and has been able to return to school (masked) and most regular activities for kids. We’ve got another round of tests coming up involving sleep studies and breathing assessments.