Littlest Man update

Posted Mar 8, 2010 10:01am

Hello friends and family...wow...it's been a long time since Kaden's last update and so much has happened. In a nutshell, we've been to National Jewish to see the pulmonologist, and we've started seeing a new cardiologist. We've changed his treatments and meds around a little bit and have seen some changes for better and worse. Kaden is still having apnea along with several other obstacles in his little life. He misses his daddy terribly. He's been grieving a lot lately and asking for him constantly. My heart aches with him and for him. His behaviors are changing as well. His hospice counselor said that he is struggling and to be patient with him. Sometimes he puts a smile on my face because he's so darn cute. When he feels like being kind, he's so loving and fun. At other times he's very mean and self-absorbed. It's hard to detect if that's due to him missing Brian, needing an increase in his meds, or him just being a typical 3 year old. As for medical stuff he definitely is facing some challenges. 23 Dr.'s have determined and agreed that all of Kaden's major complications are due to his brain. We got test results that proved this is not genetic. He is an anomally. The main docs that are involved refer to him as scary, troublesome and bothersome. He is untreaded waters for a lot of his physicians. We will be doing a lot of traveling as his need for intervention increases to see his specialists. His autonomic dysfunction is just so rare that nobody really knows what his prognosis will be. For example, he may continue to improve with medications and treating his symptoms, he may do the total opposite and there is nothing we can do. His heart is structurally sound, but his brain is sending the wrong signals to it. All of the medications that are available to help his heart have negative side effects on the lungs and gut so those can't be used. His respiratory system is compromised already. His stomach and digestion are too. He still struggles with solid foods due to the hemi-parisis and aversions, but his vocabulary has grown immensely. He loves imaginary play and his outings to the bookstore with my mom. (Thank you for that Momma). His nursing team although limited is phenomenal. Not only are they great with Kaden, but they put up with me feeling so out of control of my own life too. I'm doing everything I can to advocate for Kaden and will not give up on him. He has several more tests to endure before the docs decide what else they can do to help him, but without Brian I need more time to figure out an action plan since he needs to be there for 5 days of testing. I truly feel like he will overcome a lot of this. He is in God's hands. Time really does seem to heal all wounds. Including but not limited to his broken nose (that was not fun) and all of the recent ear and sinus infections. But seriously...to those of you that have been there to support us through this hard time...I can never thank you enough. I know for some it's scary to be around Kaden, but it means so much to him. I know God has a plan and everything happens for a reason, but sometimes it's hard to have total faith when so many things go wrong in such a short amount of time.I will do my best to keep faith and keep everyone informed more regularly. There is so much more information, but it's very detailed. I'd be happy to answer any questions should you have any. Take care everyone. We ask for strength, patience, healing, and understanding. Please lift our family up in prayer. It really does help.
Sincerely, Julie