Alright, after a VERY long 5 hours in the radiology waiting room, we found out that Max has a diaphragmatic hernia that consist of his large and small bowel. It is slightly restricting his right lung from fully expanding. We also found out that it has nothing to do with his prior surgery when they put the nissen in. It's something totally different than that. Some of the doctors believe this some of them don't.
So, the plan is that Max has to have another surgery. It's looking like it will be in early April, but they are still working on getting it scheduled. Max's urologist is also planning on putting his vesticostomy back in at the same time so that he only has to go through anesthesia once. After the surgery, Max will go to the ICU with a chest tube for a few days. He doesn't think he is going to do bad coming out of the surgery, but he wants him to have the constant monitoring that the ICU will provide. They have to put the chest tube in because they will be going through his chest cavity and will have to fill it up with air, so that is to remove the air and any fluid that may collect post surgery.
Nephrology and urology also had a meeting yesterday to discuss the plan. I am taking this part day by day or else I would go insane. In a nutshell, they are going to place the vesticostomy and give that and the hernia time to heal. After this time period passes they will readmit him to the hospital and retry the peritoneal dialysis. If it works- great! If it fails we have to pray that hemo continues to work. The goal is to still get him as big as possible before we have to the the transplant. They want me to continue on with my testing just in case we have to move to an emergency transplant.
I think that's it. Have a great weekend!
3 comments:
To the most amazing parents and strongest little guy out there,
You perservance and strength are so inspiring. I think that you should get medals for your patience -- 5 hours in a waiting room -- oh my, and during the day -- boy, I bet you could write a book about how bad day-time tv is ;).
Thank you so much for posting those beautiful picts - Max is truly loved and he loves you. Here's hoping that all the prayers and support bring your moments of peace and strength everyday.
We love you and pray for you and your family everyday -- Max is the all-time leader in the 'who do you want to bless tonight'... that's pretty good, especially when Lucy picks her pacifier a ton, and Alex roots for his buddies.
LOL,
((((hugs)))),
angie and the fam.
A member came across your blog and sent me the link. Please let us know what we can do to help! We have several members who weren't diagnosed with a diaphragmatic hernia until long after birth.
Dawn
CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
http://www.cdhsupport.org
http://www.cdhresearch.org
I am not sure how, but I came across your blog sometime ago, and began reading about your journey with Max. My son, Ben, had a diaphragmatic Hernia at birth, and had surgery at 2 days old to repair it. If you have any questions, I would be happy to talk to you about our experience.
I agree with you. It is not fair what these babies have to go through.
We will be praying for Max in New Jersey.
Katherine
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