Update on Clay and His Salt Wasting CAH

ClayI thought it might be nice to do a little update on Clay and how he is doing with his diagnoses of Salt Wasting CAH (congenital adrenal hyperplasia). I don’t want to back log all that happened, you can read it by clicking the link above to see what originally happened at 1 week old.

CAH is a genetic disorder. A group of genetic conditions limiting hormone production in the adrenal glands. Congenital adrenal hyperplasia affects a child’s normal growth and development. Although it can be life-threatening, most people with it can lead normal lives with proper treatment.

Clay has been seeing his endocrinologist in Wichita every so often, and she is teamed up with his pediatrician, so they both are aware of his condition and work together. It is so nice to have doctors who are taking really good care of him to ensure he is growing properly and thriving! We know how serious his condition is, and it is imperative that he sees the doctors regularly to ensure he is doing good.

Salt Wasting CAH

Clay is doing amazing, he is growing good and responding well to his hydrocortisone and florinef, and is in the correct ranges of his potassium and sodium, and other levels. With salt wasting it is hard for them to maintain proper levels of potassium and sodium. The potassium is normally high and sodium is low, so with the help of the medication it helps level him where he should be! To check his levels he gets blood work to look over potassium, sodium, renin, and other important levels that are affected by the condition. 

He has been able to start tapering off his florinef which is amazing, and they up’d the dose of hydro as he has grown and it is based off his height and weight!Our specialist has said he is doing an outstanding job, and just keep doing what we are doing! He is growing and meeting milestones like he should, and all is looking well! That is such a huge relief for us, as we know it is life threatening and it is so important he stays in the correct level ranges!

family

Now with Fall and Winter coming we just have to be careful with germs. If he gets sick his body doesn’t fight off things the way ours does, and he may have to go in to the hospital if he gets the stomach flu. We have not went through that yet, but we have his shot to give at home in case that happens and know the steps to take in a situation.

We are praying for healing everyday over Clay, and we know how strong God’s hands are upon him! He is one healthy strong little fighter, and we couldn’t have been blessed with a better guy!

I know a lot of you ask about Clay, so I wanted to do a quick update on what is going on! We don’t go back to the specialist till November, which will be nice! She loves seeing him, and we couldn’t ask for a better doctor than her!

 

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Salt Wasting Congenital Adrenal Hyperplasia (CAH) Diagnoses For Clay

Being Diagnosed with Salt Wasting CAHClay

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!

NICU

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!

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