Monday, June 6, 2011

no phone call yet!

I guess I'll be looking for a new endocrinologist! I cannot believe that I have not heard from anyone in that office after they sent me these IGF 1 results over a week ago. UGHHHHHHHH!

Sunday, June 5, 2011

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!

Wednesday, June 1, 2011

Quick note

Thanks to everyone for checking in on us. We get pretty busy (and always tired, still waking to get Jerry his milk) and it is hard to stay connected. It helps us to remember how many friends out there care and are praying for us. I am a such a bad blog mommy for Jerry. I cannot believe I haven't got on to post pics or anything for his birthday!! I always have so much in my mind that I want to post and then I never have enough time when I am not exhausted to really focus and write. So I am putting all the fun pics and other news off for now. Just want to say that I finally talked with Dr. Towbin on the phone today. He was incredibly kind and gave a little summary of his impression of Jerry's latest echo. He said basically the same as our Chicago doctors but seemed a little more optimistic that Jerry could live his childhood at least with this heart being checked and staying on medication. The concern is that the scar tissue in the heart makes the heart stiff and as he grows he the scar tissue can become more dense, grow, and cause blockages or even more stiffness. There is not enough out there for him to suggest beyond 20 or so years. However, he did not get my questions that I had emailed and those may include important information for him about symptoms and such. So he, amazingly, said he would call me again tomorrow to finish after he found the questions. I probably should have stopped him during the call as he was giving quite a lot of basic back ground info on the heart and Jerry's anomoly that I am very schooled in already,. I did not want to interrupt and so now am hopeful to discuss more details tomorrow. he did say that when there are questions as in Jerry's case, that more testing may be warranted and could include a cardiac MRI and/or heart cath. Overall, I feel better and with Jerry doing really well lately that feeling is increased. But I will never not worry and understand still that, even for Dr. Towbin, Jerry is somewhat rare and nothing is for sure.

Jerry's growth hormone came back low (got the report in the mail without explanation) and I still do not know what this means. I don't know if he has a whole other disorder or if it is low because of his heart disease. I hope to sneak that question in on Dr. Towbin. I so greatful for having the opportunity to discuss him and for friends at children's cardiomyopthay foundation for helping me reach him. '

Please always excuse my grammar and lack of creative tired.

More soon...really!