Monday, June 4, 2012
I'm thinking of buying a personal hospital room for poor Ryder!! He is once again back in the hospital. He's lost 1 1/2 lbs in the 2 short days he was home since the last stay :( I have a feeling this stay will be our longest yet. They are planning a series of test and ultumitely will place a GJ tube instead of his current G-tube. The GJ tube provides nutrition directly into his small intestines instead of his stomach. Ryder just can seem to keep anything (even a few drops of pedialite) down :( As I email back and forth to Ryder's neuro and am having sleepless nights, I have really been doing a lot of research. What ever is causing all these issues with Ry is still unknown. The doctor is pretty sure it is a mitochondrial diesease though. I ran across: Mitochondrial Neurogastrointestinal Encephalopathy Disease during my research and it really seems right on to what Ryder is going through. I'm asking them to run a test for this while he's in the hospital. It's still progressive and degenerative, but from some articles I've read individuals have lived into their 30's with MNGIE (better prognosis then we have been hearing). However, on 70 case in the world have been reported, so that data info isn't based off much! Ryder will also be getting a suction machine for home. He continues to regress with swallowing. We need to stay on top of it to prevent pnemonia or choking. I'll be in school all day Tues-Thurs this week. We are already going stir crazy so if you want to visit or text let me know!!