Friday, June 16, 2017

Infusions, GI, some fun

Broc had his monthly IVIG infusion and a bi monthly iron infusion. He had a reaction to the premeds which was horrible. He needed to sleeping for 2 hours after that happened. The nurses have learnt how to avoid that next time, so hopefully it will be the last time it happens. After that everything went smoothly. Once a month Broc will be in the hospital for infusions. If you would like to come visit us please message me and I will let you know when we are there next time.We love to have visitors.




 We saw his local GI a week ago. They are very happy with how well he is growing. A little too well so they have lowered some of his calories in his tpn. We are all very concerned about his hydration especially during the summer. We have not been able to keep Broc adequately hydrated so they have increased his IF fluids. He has iv fluids now in the morning and then again in the afternoon. It seems to be keeping his bp stable too.

We are still fighting continual viruses with him with is causing his sensory to be off then wall times, making it very difficult for him to focus and causing him to be unstable on in his feet. It's also causing him horrible GI issues. It's such a vicious cycle for him. We are still talking with Immunology to see if there is anything else we can do to help him.

We pulled out the slip-n-slide for the boys. What a lot of fun they had. Sometimes you just have to unhook all Brocs lines and let him have fun.







Thank you for all your continued love and support. 

3 Days of convention.


We were able to attend all 3 days of our regional convention this year. What a privilege.