Being Diagnosed with Salt Wasting CAH
As you all know I just finally got on to share my announcement that Clay had finally arrived on 10/20/15! Since then we have had a long road of ups and downs, and I wanted to share it with you guys!
While we were in the hospital they did their State Blood Work test. We didn’t think anything of it, and ended up getting discharged and sent home. Well life went pretty good at first and then around day 6, he started acting pretty sick. He seemed a bit lethargic, throwing up, having diarrhea and just didn’t seem to be himself. So, late one night I woke Adam up and we headed in to the emergency room to get him checked out.
While in the ER they drew blood as he had pretty good jaundice and they were worried that the level might be to high. So, they checked him over and said follow up with pediatrician the next day. So we did, and the doctor wanted to do a full blood work check to see what might be going on.
Later that day we got home, and got a call that said we needed to get Clay to the hospital right away, that Wichita was sending an airplane to get him and take him to Wesley in the NICU. His state blood work showed that he had Salt Wasting Congenital Adrenal Hyperplasia (CAH). it is a genetic disorder. What it is, his adrenal glands are larger than what they should be. He doesn’t produce the right amount of sodium or potassium and such for his body, which can throw everything off. If left untreated it can lead to a coma, cardiac arrest and even death. It is a very serious illness, and only happens to 1 in 15,000 babies. For Clay to have gotten this, Adam and I both have to be carriers of this or have the condition ourselves. We are in the process of getting tested now so we can learn more about where it came from and so on.
That is the scariest day of my whole life, watching them poke around to get an IV started, they ended up having to do it in his head. Not knowing anything about this condition was petrifying.He was 1 week old when he was taken and put in the NICU. He was in adrenal crisis, which is life threatening. Luckily they were able to act quick and they got his sodium and potassium levels evened out.
Clay will have to be on medicine for the rest of his life, and we have to watch him really closely. If he gets sick we have to stress dose him to keep him from going into crisis. We always stress dose him with medicine for immunizations, if he gets hurt, sick, and so on. It is a really big learning curve and have been pretty emotional stressful, but hopefully in time things will get easier and we will learn more about this, and be able to take good care of him and keep him healthy!
We can’t thank the Wesley NICU enough for saving our son’s life! They did everything they could to get him healthy as soon as they could. All the nurses and doctors were amazing, and we are forever grateful! Thank you for all the prayers and love you have showed up along the way. If you follow me on social media you know about his condition already as I have shared about it.
BUY THE BOOK
If you are wanting to learn more, you can buy this book:CONGENITAL ADRENAL HYPERPLASIA: A Parents’ Guide and it is highly recommended by other parents! I bought it and found it to be very helpful!
Sue Hull says
Oh wow! Im glad he’s ok. Being on meds is no fun.You guys must have been so scared. He’s so beautiful. Try not to stress, its not good for your body. Clay needs a healthy mommy to take care of him 🙂
Karen Fountain says
CARES Foundation helps families with CAH find physician referrals, education and support.
Wishing you all the best,
Thank you, I have look into the CARES foundation for education, appreciate your help!
Merri Lynne Brohamer says
How is he today