Eli had a cardiology appointment today. It went great. It was only a blood pressure check (so no echo), but he seems to be doing okay for now. However, when we last went to the cardiologist, I had talked to him about the confusion and the fact that Eli gets really easily distracted. So his doctor said it was time to go to neurology to see if he was suffering from brain damage since kids who undergo heart surgery (specifically open heart) are at high risk. Typically you need to wait and make sure it's not a short term thing (which can happen). At that time he was 3 months post surgery so it was far enough out from surgery that anything temporary should have resolved itself. I came home after that appointment and made the appointment with neurology. Then I decided I needed to make a list of everything I was seeing in Eli so the neurologist could have as much information as possible. As I looked at the list I was shocked to see there are too many things to say it's a coincidence.
Speech issues (especially when there is background noise)
Legs hurting for no reason
Funny smile (he only says cheese with one side of his face)
Sleeping issues (he doesn't sleep well at night)
Going up stairs (delays such as doesn't alternate feet, must hold on to things, can fall easily going down stairs)
Can't walk for very long
Sits when doing activities or has to take several breaks (most people miss this)
These are just a very few.
When I brought the list and showed him the pictures of his smile he was shocked. Then he began to notice so much more than what is listed above. I explained it was like me asking him to monitor Eli's heart without any of his equipment. No BP (blood pressure) machine, no EKG machine, no echo machine. Nothing. He said there is no way. I feel as a mom I am trying to help Eli but I don't have the equipment necessary. It would be easy to go to the pediatrician and she would be fine with giving me referrals, but I don't think me going to several different doctors for them to treat symptoms would be all that helpful. I need doctors to be looking at the whole picture. I often get the excuse of he's had a hard couple of years, he has a heart problems, he just had surgery, etc. But being 5 months post surgery Eli should be back to "normal". The heart recovers quickly as do young children. He should have already caught up. He gave me advice and really truly listened. He saw EVERYTHING I was seeing on that list and much more. He feels there is more going on with Eli than meets the eye.
As I left that appointment I had a long talk with God on the way home. I started thinking of Eli as a puzzle (his doctor and I always refer to him as one). A puzzle we are trying to put together so we can see the whole picture. Only in my talk with God I realized it's NOT me who needs to put this puzzle together. God knows the picture and how it is suppose to look. HE will put the peices together as they are needed. My problem is I obssess about Eli when I start thinking of what I need to tell the doctors and explain what is going on. Don't get me wrong, I do need to make lists and advocate for my child, but I need to stop at making the lists. I need to pray to God for peace, wisdom, the ability to communicate effectively, the doctors minds to be open and truly hear and see my concerns. When I feel that need to obssess I need to pray for those things and leave it there. I know that mentally, but actually doing it is a completely different story.
So this is where I ask for prayers. Please pray with me as Eli has LOTS of appointments coming up that I can do the job God gave me as a mom, while leaving in Gods hands those things I don't need to worry about. It's not my puzzle to solve.