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update

Posted by on Oct. 15, 2014 at 11:15 PM
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So I am still sitting in the hospital next to my son's bed. We finally got past the worst and major illness. But it left massive destruction in it's wake. They still do not know what the initial cause of this was. They feel it was a viral meningitis, but all tests have failed to produce what. After a lot more complications, and fear of losing my baby, we have turned that corner. An MRI showed that the spinal column was clearing and the initial source of our pain was on it's way out. However, it lead to a complication. His body began attacking his own brain in the process of killing the disease. This has lead my son with an inability to swallow and lift his own head up. He is just beginning to be able to move his own head from side to side a little and a bit up and down. My son was given a nasal feeding tube, but after further swallow studies looks like we will be looking at a more permanent feeding tube into his side, until he can finally recover. The future looks as if we are heading to a rehab facility after this, so that he can receive much needed OT and PT. The doctors hope that he will be able to be home in a couple of months. There still is no guarantee that he will regain all functions, or that he will not have recurring issues in the future. The prognosis is good for a good recovery, but they mentioned they never had it so that a patient lost head control or total swallow. Generally it is lose of extremeties, which is serious, but not as much as what he is experiencing. So. I'm here. Sorry I haven't been able to get on much. I hope that once things settle and I can get into a good routine with rehab, finding time to actually see the rest of my family and so forth (since we finally are out of the medical necessity aspect, not that I plan on leaving my 5 year old too long alone.) I hope to find time to be around. I could use our basic chit chat about various topics. 

Hope all is well with all of you! 

by on Oct. 15, 2014 at 11:15 PM
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Replies (1-3):
Roisin07
by Cynthia on Oct. 16, 2014 at 7:44 AM

 My heart is aching for you luv. Though, you have one tough lil man there as he's shown. He's overcome all these hurdles and he will with these ones as well. Again, if you need anything. Someone to talk to even please let me know. I work with people with all these types of issues and feeding tubes etc. So I have a lil hands on knowlege on some aspects if you need advice on anything. I'm here.

Liz132
by Head Admin on Oct. 17, 2014 at 6:53 AM
I'm so sorry your family is going through this *hugs* Thanks for the update. I'm glad he is turning towards recovery.
baconbits
by Bronze Member on Oct. 17, 2014 at 10:47 AM

 Sorry to hear that things got so bad for your family. Glad to hear that you did get some good news and praying that he continues to improve.

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