Thursday, March 26, 2009, Nashville, TN., 6:39 a.m., C.S.T.~
Johnathon here. I thought I'd write to you to let you know what is really going on with me.
Remember the last few times I wrote, when I said I'd had the flu, and it really knocked the stuffin' out of me? Well, it turned out I had a spell of congestive heart failure. I ended up in the hospital for a week and a half.
I was having swelling in my feet and ankles (they looked "puffy", liked overstuffed pillows), and it was getting harder for me to breathe. Maman took me to the doctor; he popped me in the hospital, where I endured endless sticks and IV's. I also had to be hooked up to a ventilator so I could breathe easier; that wasn't fun. I also had to have a nose hose. EWWW!
It was discovered I had congestive heart failure. My heart was working harder than normal to get oxygen pumpin' throughout my body.
I'm now being monitored by my pediatrician, Dr. Emmons, and my MD team; they said this was a result of my disease. I would probably have more episodes like this in the future; it means that my disease is progressing. Oh, goodie. Just what I did NOT want to hear!
I'm now on medications to help my heart, in addition to alllll my other meds I take for my breathing, pain management, epilepsy, etc.
I really have to be careful now; there's no telling when I will have another spell with my heart, or how fast I will go downhill. I pray I am around for a long time to come; if not, then that's okay, too, because I will soon be with Jesus, in Heaven, and I will have a new body: I will be able to run footraces with the angels and talk to Jesus about how glad He saved me and made me whole again when I got to Heaven. :)
I do know this: I seriously need some new clothes. Most of what I have hangs on me; I look like a beanpole. Skinny ain't the word! My face looks like a skeleton; when people see me, they get sad or act worried. It's only natural; however, it bothers me.
When I am around people, I want them to treat me normally, even though my life is anything but. Don't act all tragically sad around me; I may be living with an incurable, progressive disease, but I'm a lot stronger than my outer appearance seems to project! Treat me like a normal kid; get to know me, and listen to what I have to say! That's all I want!
Well, I have to get ready to go to school; bus is coming soon. I will write in here again when my health allows it; hopefully that won't be too long in the future! Just keep those prayers coming; I'd really apreciate it! Thanks in advance!
Take care and God bless! Love you all~