Hi there!! I have a little girl who is now 21 months and has SWCAH. I remember being where you are at. Scared of everything not sure of anything. I was scared that she would have a crisis and I would not know it. I was afraid to bring her around people for fear that she would get a cold and be hospitalized. One thing that helped me was really getting as much info as I could. I called CARES and spoke with them. It wasn't unusual to spend a half hour to an hour on the phone with them. THey are truly amazing!!
I knew it would be impossible to keep her away from people. I have 2 other kids (14yr old and 4 year old) that get sick from time to time. And when one has it they all eventually get it. After her first illness I was able to relax a bit. I saw that things went as they usually go. My DD wasn't sick any longer then my others. I just made sure that when she was sick that I called my endo and she made sure I knew what stress dose to give. When you are not sure of somethng call your endo!! They expect to get more than a few calls from new parents of CAH kids.
As far as her emergency kits.............. What I did was get a small note from my endo stating that my DD has SWCAH and needs to carry emergency meds and syringes. In that little pcak were her solucortef, alcohol wipes, cotton, bandaids, syringes, and a few pills. Keep it in her diaper bag.
After a few times of my little one getting sick it became second nature. THe calls to the endo became less and less. One thing that a doc said to me and still rings in my ears is this.................. Take her home and treat her like any other child. My little girl walks and runs and plays hard like any other kid. She has fallen and gotten bruises and scrapes.
As far as the surgery...................... When they perform it she is under sedation so no at that moment she feels no pain. THey are very good with follow up pain management. My DD had surgery at 11 months with Dr. Rink. I called his office for an appointment and had to wait 6 months but it was totally worth it! I would recomend you write down any and all questions you have. In fact keep a seperate journal for her. This is what made things a whole lot easier to remember for me. You can call Dr. Rinks office and ask to speak to Trina. Trina is his assistant. She doesnt perform the surgeries with him she is more of a secretary. But she is a wealth of knowlege. The first time I spoke with her I was on the phone for 45 minutes. She is a very kind person. Dr. Rink is just fantastic. He is the most kind and patient Doctor I have ever met. He knows what he is doing and does it well.
As hard as it is please try to relax a bit. Enjoy your daughter and ever moment you share with her. And definently get ahold of CARES. Here is their contact info..............
http://www.every1cares.org/
Kelly R. Leight,
Executive Director
1-973-912-3895
(in New Jersey)
1-866-227-3737
(toll free out-of-state)
Fax:
973-912-8990
Also feel free to email me if you need to talk.
iamaudra@ hotmail dot com
