chiari angel

chiari angel

Friday, July 5, 2013

Hero needed..

It has been a long week. While most people were celebrating the 4th of July with their loved ones my husband and I spent 2 whole days in the er with our son. Still sick and throwing up from his chiari surgery last Monday he became so weak he could not move and his arms went numb. The er doctors checked his shunt for blockages (there were none) and gave him a bag of IV fluid and anti nausea medicine. He continued to throw up even with the pills and on Wednesday morning he had his first seizure. He collapsed and we had to call an ambulance. They put him on anti-seizure meds,gave him a bag of fluids and glucose and sent him home again. Last night while throwing up he blacked out on the bathroom floor twice. He has a doctor appointment on Tuesday and I am going to insist that he be re-admitted to the hospital. When your child is sick it is so hard to concentrate on anything else other than getting them well again. I feel so helpless as to where to turn now. I feel as though the doctors are not listening to us. They just shake their heads and say this is uncommon but happens sometimes with chiari. NOT ACCEPTABLE!

I really need to be strong and healthy so I can be here for my son. I urgently need a kidney donor and now more than ever! Please, if anyone reading this is interested contact Vanderbilt Transplant and give them my name, they will instruct you on how to proceed with the testing. Please help me live so I can take care of my son. Thank you for all the prayers.

Monday, July 1, 2013

Dealing with a chronic illness of any kind is demanding and life changing. I can handle the effects of my own illness and have been doing just that for many years. I continue to wait for my transplant,my potential donor is unable to donate at this time and may never be able to. It is my son and his diagnosis of Chiari Malformation that is foremost on my mind at the moment. He is still having a lot of problems even after all the surgery and everything he has gone through. The decompression and shunt has not relieved any of his symptoms and the doctors cannot give me any straightforward answers.  I am one upset mama right now and am going to battle for my son. We are just now learning how devastating CM is for many patients. Unfortunately Ryan is one of the 25% of  those who do not do well after the surgery.Many prayers are needed right now for my son and also for me to stay strong.