Sunday night John wasn’t feeling well and woke up Monday morning around 4am still feeling bad. Long story short around 12pm I decided his condition had gotten to the point we needed to go to the hospital. When his ammonia levels rise he slows down and becomes confused (all signs I know to look for) this time they came on so fast I was worried it might be his potassium levels from his new meds or something else.
At the hospital they did a CT and thought they saw something on the scan that signalled he was having or had a stroke so they started doing all kinds of test and sent him to the stroke floor. After being in there till fairly late in the afternoon on Tuesday we finally got word that the other test were fine and they were not sure why but nothing was wrong so they went back to my diagnoses of elevated ammonia levels. We came home this afternoon with the decision between us that from now on no matter how bad it was we would just treat it at home since there is nothing they can do we can’t. If I can’t fix it at home with mega doses of his medication then the last resort is where they remove his blood and try to filter it but from what I have been told at that point it is just a hale Mary and probably won’t work.
SO our plans have changed some for our trip to Emory instead of going Thursday and spending the night we are getting his brother to drive us there on Friday morning and we will let everyone know what they tell us when we know. Now more than ever I am going to work hard on our trip so if anyone has any contacts or ideas about hotels let us know.
Thanks for going along with us on our journey.
Mary and John