I'm not really sure how to process today's appointment or how I'm feeling. Eli had a cardiology appointment today. I'm sure if they took my blood pressure at some of these they would be rushing me to an adult doctor and forgetting about Eli sometimes. These appointments ALWAYS rattle me. From a cardiac standpoint Eli is VERY stable which is AWESOME and I'm really very happy about. However, being stable doesn't make any of his other symptoms go away. The passing out, the headaches, the tummy aches, the legs pains, the dizziness, the cold/clammy/sweatyness, the shortness of breath, the heart "beeping" spells, the facial swelling, the brain fog and MANY other things that plague him. So while I want to be happy that his heart is so stable I still have to face these nearly every single day.
As a mom we have a natural urge to "fix" whatever is ailing our kids. We don't want to watch them suffer. When they get sick we want to make them feel better. But what happens when the doctors don't have answers? What happens when you don't know how to help them when they are screaming in pain? When it's a cold or a bug going around you get through it and thank God it's over. But there is no end to this. LOTS of his symptoms come when he is active for too long. Some of them come on suddenly when he's just sitting. This is so incredibly hard I really have no words.
I think I just needed to put it out there. I've only mentioned it to one person today. I think I need more time to process.