And somehow the coming together of her walking and now beginning medication gave me great comfort. I had often explained to people when we were trying alternative treatments that if there was any time to try, it was this season because she's not extremely active or walking. And it's as if God has gently hugged me and said, "You did well. You trusted me and explored those options so that you can embrace this next phase with full confidence." And he's planted a peace is me that I have no shame. I don't fear the "told you so's" (not that anyone has said that besides my internal self-deprecation - which has become much quieter these days, Praise Jesus). And we are a stronger, healthier, more aware, understanding and compassionate family for the journey.
So, to back up and recap: in the middle of April, after the meeting with the head of cardiology, he and Kylie's doctored agreed on a dosage and we picked up Kylie's medication. She's on sildenafil. Here is a brief scientific explanation of how it works for those curious:
"The increased pulmonary artery (PA) pressure found in PAH is due to disturbances in key vascular mediator pathways including relative deficiencies of vasodilators such as nitric oxide (NO) and prostacyclin, as well as exaggerated production of vasoconstrictors such as endothelin and thromboxanes.
Sildenafil is a selective Phosphodiesterase-5 inhibitor that has been reported to be a potent pulmonary vasodilator. Sildenafil selectively inhibits phosphodiesterase 5 (PDE5 is abundant in pulmonary tissue) which leads to stabilization of cyclic guanosine monophosphate (cGMP). cGMP is a second messenger of nitric oxide (NO). Stabilization of cGMP results in increasing nitric oxide (NO) at the tissue level leading to pulmonary vessel vasodilatation."
(link to article here)
We were told that the most common side effects are flushing, headaches, sensitivity to light, and diarrhea. Luckily she didn't seem to display any of those things.
And just because I need to laugh in all this, I wanted to share a fun story. Mom's make completely senseless random decisions sometimes. Ten days into her medication I decided to test her allergies of tomatoes, paprika, and black pepper...with Little Cesar's pepperoni pizza. They used to give her severe diaper rash and open sores. Well, it wasn't really a completed experiment because she threw it all up 3 hours later. And then she threw up lunch. And then she spiked a fever...and got a new tooth. So now I've quadrupled my confusion: is it meds? Is it food reaction? Is it illness? Is it just teething? Awesome, way to go, Mom. Looking back, I still think illness, but who really knows?
What I did notice more of a pattern in was that she is no longer sleeping as long or as well. I chalked it up to a developmental thing since she just started walking that maybe she's regressing into an attachment phase. But I just read one study that listed neurological side effects including insomnia and raised body temperature. It's something I'm working at being more aware of to discuss at our next appointment in July.
But before our next appointment, We're going to Dallas! We are attending a large Pulmonary Hypertension Conference in Dallas this June. There, we will hear researchers and doctors share their latest findings and patients talking about living with PH. We will also be able to meet other families with PH children.
I chuckle to think we're going to Dallas to find hope and community when I'm enveloped by it here at home at Mosaic. I think of it a little like Paul and his travels to the early churches. Driven by hope, but each community is different and offers unique things. And the hope that will spring from that room--a room where you walk in and everyone just gets it--I look forward to with great anticipation. God is always in the business of expansion because as humans we have a limited capacity. I love my tribe and wouldn't trade them, but I'm so excited at the idea of meeting people with a specific kind of hope for PHighters, PHamilies, and someday a cure.
But to send a family of 5 to a conference costs money; a lot of money we don't have. Ethan and I agreed that we would fund raise the money to go. I worry about a lot of things like finding parking spots, making people wait for me, that my son might get hit by a car, or that Kylie may die some day. But I never doubted that God would provide for us in this moment. I applied for a scholarship and got it! My travel, hotel, and conference fee is covered! So I estimated the rest that we would need to raise. And of course I estimated bare minimum, because God we just need to get there. I mean why would I ask for luxuries when it's our friends and family needing to sacrifice for us.
But God is showering us with love and teaching me how He is a generous God. He loves to give gifts to his children. We have received the amount in my tiny prayer almost twice over! Every time someone gives, I become overwhelmed with tears. Grateful and humbled.
I came to this thought once in the middle of my tears. It is belief in the character of one of us that moves someone to give. Whether it's Ethan's love and devotion to us, or Kylie's joyful smiley spirit, or our parents' years of faithfulness, or my upside down crazy beautiful life, it's belief in who we are that compels people. And it leaves me confused, humbled, speechless, and a little dumbfounded. Because who am I, God?
So many people believe that we should be there. We can accomplish so much together. I feel like we are going to be riding a tidal swell as we go to this conference.
Her disease is not a punishment. It is just an extended trial that in the end we may receive the crown of life. "We also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God's love has been poured out into our hearts through the Holy Spirit, who has been given to us."
We have always prayed for Kylie's healing and it's hard to have hoped and not had it come through when you wanted it to. It's hard when you cry out for God move but instead He changes you and calls you to move with Him. God constantly reminds me that He is her lifeblood, and it is Him who gives her breath life. And I cannot add a minute to her life that God does not have planned for her.
And some of you may be curious about the extra money. We are going to use some of the money to let the trip breathe a little. Like renting a car instead of taking shuttles to and from the airport. But the rest we want to donate to PH research to further making hope reality in finding a cure someday.
The post got a little long, but like I said, a lot has been going on. But we will surge with confidence wherever God will take us and our story. Love to you all!
We belong to a tribe called Mosaic that lives by faith, is known by love, and is a voice of hope.
The conference we are attending is through the PH Association.
