Thursday, July 21, 2011


Jerry was so resistant to starting the tape and stickie removal process! But once we got started he did great taking a few off himself and was so proud. I spared you a video of me removing the final two. He had stopped all progress and we had to get them off so we could return the whole thing in the mail and he could get a bath. So we both cried while I held him down and used orange oil and pulling. He was happy they were off but then let out his anger about the whole situation. He screamed "I hate those things! I didn't want to put those on my skin! Next time I'm not going there" I joined in and encouraged him as I feel pretty angry about the whole thing myself sometimes! As much as he hates the tape he loves the monitor and cords and did not want me to send them back! They have been interesting play things for the last 24 hours (a dog leash to walk him, a rope for rescuing imaginary friends). All is good now, besides the really sore rashy skin.

Jerry has said a few times lately "my heart's beeping loud," while feeling his chest. When I feel, it surely is! I think it has been when he is laying down. Not while on the monitor of course. We just have to keep track of how often he says this. He even told me "it's pumping hard." I really don't think I use that word with him but I guess I must have at some point. While he was on the monitor he was out in the high heat for a few minutes and then said he was too tired and needed water so I am curious to see if he stops before there is any measurable impact or if something shows.

Wednesday, July 20, 2011

Status Quo in a Big Way!

Jerry is stable with no changes since his last exam except....he is on the growth chart! He is at the 3rd percentile and holding steady! The doctors were thrilled with this. The latest opinion is that the greater likelihood is that Jerry's heart will be OK for at least the next 10 years. We really happy with this although a heart transplant at any point for my guy is a difficult thing to think about. Being older would certainly be easier in many ways. And of course all bets are guarded with "he needs to be monitored" and "we don't know for sure." He is wearing a 24 hour monitor and doing great with that..."his little heart computer." He did so well for all of his appointment except taking the EKG stickies off. Usually we would just leave them on and take them off at home which would be easier for him but since they had to put the halter monitor on we needed the other stickies off. He was spoiled enough by Nurse Linda to make up for the agony. Big brother came along which is always helpful for Jerry and he did great too . Linda gave him a huge remote control truck so big brother is pretty happy too. Things moved quickly today and we got home way earlier than usual. What a great day!

Monday, July 18, 2011

cardiology appointment Wednesday!

I could write for hours there is so much to say! Very tired at 10:30 as usual. Each day feels like a rat race. There are lots of fun moments mixed in but so hard to keep up so I will just share a few tidbits briefly Even though I would love to spend hours writing and posting photos!!

Jerry's weight was 25 lbs. and 11oz. at his last check! this was really good gain for him and I think puts him almost at the 3rd percentile! He is about that percentile for height too. With high heel crocks on he was able to get on all the 36 inch rides at cedar point. He had a complete blast and wanted to go on all the big people rides! The endocrinologist finally called back and apologized and said that in the end he did not believe Jerry's results were a separate issue but rather related to past heart failure and nutrition. He was also on really, really high doses of steroids as a 4 week old infant for a few months and I really believe that could have something to do with it too. The fact that a doctor would put a kid through a blood test with out knowing how he would interpret the result is a little annoying. We didn't really need the blood test to tell us he was small!

Dr. Towbin's input made me feel that there is a better chance that Jerry's condition will stay stable and he will be able to keep his heart for childhood. However, Dr. Towbin did not really look at anything besides Jerry's last echo and said that if there are other symptoms or problems it brings questions about the accuracy of the echo and further testing is needed.

We see our cardiology team at CCMH on Wednesday and will see what news that brings. As Jerry and I talked about his upcoming appt. he told me that he "likes getting his heart pictures and he's used to it." He said "that doesn't hurt but I'm not used to the sticky things and I don't want to do that part." Too bad it's not a choice. He will come home with stickies for at least a 24 hour monitoring of his heart.

Thanks so much to all our friends for checking on us and writing comments and emails. It means a lot to know that you are out there for us.