So Afraid of What's Ahead!

So Dr. Towbin was so generous to call back and try to go through my questions. However, many were hard to answer with out seeing Jerry and he did not have any knowledge of how the growth hormone would be impacted by his heart. He basically made all the same conclusions that his last echo did looked pretty good (relative to heart disease) but that all things need to be considered such as his trend and symptoms. He agreed that if symptoms improved after medication increase than it likely was his heart causing the symptoms. I generally I think can live in the moment and be pretty positive but my instinct tells me that Jerry will need a new heart before 20. I feel it in my gut but hope it is maybe just a protective mechanism. Better to be strongly aware of the possibility than be taken off guard by another slap in the face!
I also had sent Dr. Tobin some heart study results for me in case anything would relate to Jerry. I had some issues with severe preeclampsia and heart failure during and after pregnancy and have some on going symptoms. He said that I need to be rechecked because it indicated my left atrium was enlarged. Nothing urgent so I will see about going to someone downtown this summer. The guy I saw a some years ago in Naperville...not so good.

After 3 phone calls to the endocrinologist I still have no explanation for the blood test results sent in the mail. In my last phone call I expressed my frustration to the secretary and she felt horrible but was unable to help me as the nurse and doctor were not in. A different nurse got on the phone and could not help either except to tell me that Dr. Zeller would be in on Monday and he or his nurse would call me for sure.

I pretty much could get my degree in cardiology and now I could add the specialty of endocrinology. I have researched IGF 1 until I am blue in the face! There are endless possibilities about what this could mean and I am scared of all the further blood work and other testing that will be needed. Hopefully, it will mean nothing for now. One tid bit I read said that these numbers can be low normally in young children. Jerry has also been having these severe eye pain episodes for over a year (it started right around the time he had that severe virus and was in the hospital a few days) and I wonder if it is related to anything else....or...ANOTHER odd disorder??? I am not sure how much I can take. I guess a lot more actually since Jerry's comedy and smiles more than outweigh all of this craziness. He lives life to the fullest everyday and forgets the pain and challenges as soon as they are over and I guess we should follow his example.

Tomorrow I hope to finally hear from Dr. Zeller and end this chapter of wondering and anxiety. Please keep my little Jerry in your thoughts and prayers and write a comment here when you visit so he can grow up to know all the people that cared for him and got us through all of these challenges! Thank you friends and we couldn't do it without you!