The hospital visit today went well. Everything went by quickly and I wasn't left in a waiting room for more than five minutes. My cardiologist laughed a lot; he thought he was funny. I didn't tell him this...but he isn't. He may not be funny, but he was extremely helpful. He got an additional appointment scheduled for us tomorrow with a pediatric neurologist. Usually it takes months to get into specialists. I got in to see two different ones immediately. A God thing, most definitely.
From a cardiologist's standpoint, my heart looks "good". The aneurysm hasn't grown and my valve is working as well as it can. This doctor felt so confident in how my heart looks that he has said he only needs to see me once a year instead of biannually. He also said I can discontinue use of one of my heart medications. So I think this is good news. As good of news as I can get for no change and looking "good".
The geneticist was great. She was thorough, nice, and listened to me. By looking at my history, records, and just my body she wasn't convinced I have EDS. So she wants to continue testing to rule out any other possibilities. I definitely have a connective tissue disorder though as we already knew. She also recommends I begin going to a pain management clinic and continue with physical therapy. The testing the geneticist is doing will come through blood work and an MRA. (Similar to an MRI.) The doctor said since I was already having an MRI tomorrow she would call and see if there was any way they could do the MRA at the same time. She told us it was very doubtful that they could do that, but she would try. Not ten minutes after we left her office, she called us sounding very surprised and told us they could do both scans! I wasn't nearly as surprised though... God once again? I think so.
Tomorrow I will have an MRI/MRA, meet with a neurologist, get some blood work, and pick up a heart monitor that I will wear for a month to try to capture some recordings of my "episodes." Episodes being my chest pain, palpitations, and coughing fits. Hopefully it can get the recordings it needs to help the doctors better understand my issues.
So far, I definitely feel like this visit is a good one. New information to take in, new treatments that should help with my symptoms, and doctors who seem concerned about me as a whole person, not just their area of my body. I am very thankful when I find a doctor who genuinely cares. After my tests and appointment tomorrow, hopefully we will be heading home. But who knows, God may have more appointments in mind.
But for now, I am relaxing in the hotel room with my mother, who spent her birthday today at the hospital with me. I am one blessed girl to have parents who provide for me, a family that loves and supports me, doctors who listen and want to help, and a God who never ceases to amaze me.
When I become scared, worried, or ask what if, I remind myself that this is all out of my hands and into God's. While I am sitting and wondering, He already knows. While I ask myself what if and why, He says, "I will show you when the time is right." While I am scared, He lets me feel his amazing peace. So God, I give this is all to you. Because you have a plan. Because you hold my heart. Because you know what the future holds. Because you have the answers. Because you made me. Because you love me. Because you promised this is all for something.
I will try not to worry.
I will have faith in You always.
I will pray to feel your sweet peace and amazing presence.
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