Wednesday, August 19, 2015

Follow up to the heart post

I wasn't going to post this but I have had so many emails and contacts from nice people regarding what could be causing the heart dips that I thought I needed to. Thank you for reaching out with possible solutions but I believe the news was not the best.  I took it upon myself to call and talk to Jude's prior cardiologist. They were nice but very honest. They pointed out that this is probably a weakening of the heart due to the lung disease. She explained that they see this in their pediatric lung patients and over time we will start seeing longer dips and that eventually this will affect his oxygen level too. Basically this is exactly what Teri just commented a weakening of Jude's heart muscle. 

I told her I understood and that Jude has been struggling for awhile. I told her about the mucus plugs and the apnea. She said both of those can cause severe issues with the heart especially the apnea. She said we certainly aren't to the point where we are seeing long dips now but to be prepared that eventually that will happen. 

It's sad but we knew we would see medical issues like this creep up. I also attribute this to why he is looking so frail to me. He has warm toes, fingers, and is sleeping soundly today. It's just one of those additional things to add to his list. 

Again thanks for all the suggestions. 

1 comment:

Anonymous said...

I have been following Jude's story from the UK since stumbling across a very old post on a ventriculomegaly forum. I often think about him and wonder how he is doing. Hope he gets some rest and is happy and relaxed on his birthday. He is an amazing little boy, and he has obviously touched the heart of people who have never even met him. Lots of love from across the pond xx