The second things is self care. It's a phrase that's been around and it's one I've pushed aside and struggled with all my life. But I've embraced it recently because it's imperative for my survival. The list is always so simply put, but the execution takes so much discipline. Eat well, No sugar, Sleep, Play, Pray, etc. I've been working with our nutritionist Ellen this past winter on addressing a chronic stabbing pain in my side that I've had for over a year. (My kids and I affectionately call them "the roars"). A lot of it we've linked to liver, adrenal, and stress problems. When I'm on a stricter paleo diet, the more I've been able to manage stress and the less pain I'm in. The other part of self care is people for me. I can't work through my stuff with a 5 year old. Being a participatory voice in a community is hard for me; I know it will get easier the more I do it.
Anyway, so prayer and self care helped prepare me a lot for today. I did shed a few tears on the way to the hospital thinking of the most likely outcome that we would leave with a bottle of medicine. But I wasn't afraid. I knew it would be hard, but I wasn't afraid. I could feel the strength inside myself and it was a beautiful feeling. God brought to mind Phil 4:13, "I can do all things through Christ who strengthens me" which is literally when I find myself in a situation, I am actively being made stronger through the experience when I am connected with God.
We heard good things at the appointment: her oxygen levels are great, her height and weight are great, her heart function is great, still not displaying any symptoms (which keeps her at a class I).
But, her pressure levels are still between 73-85 (a normal person even working out shouldn't be above 40). Even though the Dr. added "rock steady", it's always deflating to hear. Between December and now we had tried different supplements and an essential oil regimen that all had vasodilating properties and it still wasn't enough.
Even though I had hopes for improvement, God had been speaking to me and it's like I knew. The the heavens didn't cave, and the floor didn't give out. He is before all things, and in him all things hold together. (Col 1:17). I think it's not a coincidence God gave me those two verses and that "all things" is the same word. Each and every thing. And HE IS before all those things were. Before this journey, He was. And when I am in Him it all stays together. My raft stays together. My brain stays together. In the Hebrew the word for heart and mind are the same. My heart is together and at rest. At peace.
And then of course the Doctor throws the curve ball. About a month ago, we had made an appointment to see the head of pediatric cardiology, but it's not until the middle of April. It was for a second opinion on Kylie. Since it's so close to this appointment, the Dr. recommended we wait on the meds until we see him just in case he recommends something different. Say what!? But God's peace was even there. It was like he immediately spoke to my heart that we wouldn't be dealing with side effects as we travel this next week. And I left the office not feeling on pins and needles, not defeated, not even delayed. I have to admit it was kind of strange, but in a really good way.
So we get to repeat this whole trip in about two weeks. And I'm okay with that. We did talk through the medication if she would start it then. It will possibly take weeks or months to get her to a proper dose. We would keep titrating the medication up until they see a drop in pressure on the echo, or she gets significant enough side effects that she would need a different kind of medication. It will also mean more regular trips to the doctor at this beginning stage. So I know more of what to expect if that's the outcome next time.
She was also cleared to fly since the rest of her health is so good! Thanks all so much for your prayers.
Ellen is the nutritionist we see and runs Points by Ellen.
