As I sat and watched Wyatt lie in the MRI machine my heart ached. Last year he did a great job and was done in record time compared to his normal. We have learned over the years that if he takes a little anxiety medication prior to the test it really helps him. Well this year it didn't work out as well and I just wanted to be the one lying in that machine instead of him. If you haven't ever had a cardiac MRI or watched one it is about an hour long and consists of multiple breathe holds. You have to be extremely still and after multiple images are complete and then they administer contrast. Again you sit in the machine for 10 minutes while it pumps through your body in order to show any heart abnormalities. To says it's hard to do is an understatement for a "normal adult" imagine having adhd and anxiety. Wyatt has been doing cardiac MRIs for 7 years. Yes since he was 9 years old...add in the adhd and anxiety and getting the radiology tech to understand all of Wyatt's coexisting conditions the anxiety increases exponentially.
As I watch my warrior lie in the machine it sure puts life in check again. I realize that even the best preparation and understanding of something doesn't necessarily make it easier. I am grateful he can do it though because it is how we found the first effects on DMD on Wyatt's heart. He has scar tissue that was not seen on echo and therefore we have been able to monitor and manage it more closely with meds. The fear and worry that this test brings me annually has been amplified since that call 2 years ago and it has never subsided. I prepare myself as much as I can, as I continuously check his e-medical record til the results are posted. Last week I finally got the results and his scar is stable. Praise the Lord! The cardiologist did say he still doesn't see any changes on his echo so having the MRI images (as blurry as some may be) has been a game changer.
Cardiac tests are not the only ones that he has to do in order to be ready for the specialist in Ohio. He also has to do respiratory tests. We were able to get these completed this week. His lungs are stable and we do not need any other machines added to our supply, thank God.
As I have said he has so many tests done to get ready for Ohio and getting a dexa scan (which sees the density of your bones) was not as great as we would have liked it. He has been on an oral medication to delay this but it is no longer helping. Wyatt will be starting bone infusions on 9/2. Please pray that these go well, some of my friend's children have had some challenges with side effects.
Anyway with the total update on where Wyatt is with all of his tests I want to end with this. I love him so much and wish I could do more to help him navigate these tests but all I can do is be by his side and be there when it all gets to be too much for him. On Sunday he is turning 15 years old and has been through more than most people go through in their entire life. So we will celebrate him and all of the things we have to be thankful for on Sunday!
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