Here are some of our highlights!
We met a bunch of families! We all come from a slightly different circumstances and entrances into this family, but we are all here for each other to share our experiences, hope, frustrations, questions, and successes.
We found out there are 7 pediatric hospitals in the US that specialize in pediatric pulmonary hypertension. There is one at Stanford and we are working on getting Kylie there. We learned that even though she is not in a dire situation, it is best to have your specialist and know your team as soon as possible since PH is a progressive disease.
We saw the possible future. Kylie could end up with an intravenous line delivering medication straight into her blood stream or a subcutaneous line delivering the medication into the tissue. It was great to hear from parents their experiences with both and the struggles. We are grateful that Kylie still seems a ways off from that since she is responding to oral medication. We learned that if she ends up with an IV or SubQ that showering and swimming become very difficult as the site needs to be waterproofed and is very time consuming.
But the future is so hopeful. There are so many constant improvements in technology and discoveries in medicines that the pediatric world of PH may look very different in a few years, which is incredible.
Morgan and Sean got to interact with PH kids and ask us questions in a safe space. They saw a lot of people with oxygen and pumps, kids that were very thin, and people in wheelchairs and scooters. It was a great introduction for them (still being so young) to the disease and hopefully to have greater compassion for Kylie as she grows up. And even greater compassion for people in general.
We learned PH patients overheat more easily and get more fatigued. That definitely helped us with Kylie because we keep the house fairly warm. On really warm days, I've started running the air during her nap. Right now she is normally just sleeping in a diaper. We even speculated that maybe some of the insomnia was related to just being hot since she still needs to wear her foot braces (with socks) and pajamas. Once she is in school, we will most likely have to fill out special forms to have alternative options for her if being outside will be too hot--it is southern California and August and September get quite warm and most schools eat lunch outside.
We learned that with the fatigue, since she is so young, to err on the side of caution. We laughed along with other parents as they warned us that, yes, Kylie will take advantage of it and be lazy sometimes, but as the kids grow up they become fairly good at self regulating. There is a good chance she may not be able to participate in all the activities of a regular PE class in school.
On the plus side, Kylie will qualify for a few things. She will get a Make-A-Wish when she is older. She will receive a lifetime membership to US National Parks (that takes care of family vacations for the next 15 years ;) ). She also qualifies our vehicle for handicap parking.
The conference overall was just a beautiful three days of hope and celebration. We had the lucky chance of seeing the founding women of the PH Association at breakfast and got a picture with them and Kylie. This whole association was started by 4 women around a kitchen table. Three of them had PH and realized they needed to find others like them and help each other get the care and support they need.
And we are the grateful beneficiaries of their determination. We will benefit from having heard so many families' scary moments that they were willing to share with us. It has given me so much confidence that we can carry this responsibility and help Kylie become confident and strong.
So along with hope, confidence, and support, I came home with a long list of to-dos. We are working on getting Kylie Medicaid so she can visit Stanford. We need to create a medical binder to track Kylie's PH information so we are prepared for doctor's visits and emergencies. We need to order medical bracelets and get emergency hospital numbers. We need to apply for all the perks.
It's slowly coming along as we are balancing the rest of life and two other amazing kids. God gives us the strength we need day by day.
Kylie had her most recent appointment at the end of July. Her pressures are still in the upper 40s so we are working at titrating her dose from 5ml three times a day to 7ml three times a day over August and September. We will go back at the end of September. Hopefully by then we will have her Medicaid in place and can book an appointment at Stanford for October.
We always are so grateful for everyone who prays for our family and checks in to see how we're doing.
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| We're aware that she's rare! |
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| Ethan's Mom flew in to help watch Kylie during the conference because she was too young to check in to childcare. Thank you Mom! |
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| #phaconference |
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| Staying cool in the hot Dallas heat |
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| Two of the four founding PHA women |
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| Empowered by Hope! |
