I notice that he is beginning to lose weight as well and he assures me that he is dieting and the speech is an after effect from the stroke. Even his primary thought this was the case. My only issue is if it was a stroke shouldn't he be able to have rehab. Instead, he was just getting worse.
FInally Dec 2016 rolls around. I had been after my dad for months to get a second opinion from a neuro and he finally agreed but wanted to wait till the new year as he just had gotten better insurace. We make the appointment for Feb 27. We all go in thinking that he is having mini strokes and a change of diet would do the trick. We get to the appointment and after about a 10 exam the doctor says I think you have ALS. She insisted we get a second opinion but at that moment my whole world closed in on me.
I don't know if you have ever felt like you were going to pass out but at that moment I saw my vision going. My dad was extremely stoic about the whole thing, thinkiing that it was a misdiagnosis. We were referred to another doctor in Sarasota but the wait was extremely long to get into him.
April 2017 we were able to see the doc and he confirmed what we were most afraid of. ALS. He told my dad he needed a peg placed and wrote scripts for bipap, suction machine and cough assist. At this point my dad was in complete denial about the diagnosis and said that there was no way he was going to get a feeding tube no matter what. So we continue this dance for the next month or so, me asking him what he ate, him lying to me about his weight until I finally called him out on how much he lost. He admitted that he had lost 20 lbs in a month and could no longer swallow.
Off we went to meet with the suregon. By this time we were worried that it was too late for the surgery due to his weakened state. We were able to schedule the surgery but he was frightened and insisted I stay in the room with him up until they took him back for the procedure. He was in and out of surgery relatively quickly. We received minimal information about the care of the peg tube and we were sent on our way.
The first night was difficult as he was in a lot of pain so I spent the night on the couch at his house. I will admitt we fumbled through the first few feeds and found that bolous feeds only made him feel overly full and gravity bags worked much better for him.
Several days after surgery dad was complaining that the incision site hurt. Turns out he developed an infection at the incision site. He had a fever, puss coming out of the wound, so I went round and round with the doctor (sending pictures to his nurse as I didn't want to risk him being exposed to anything with an infection rolling around in him.) Antibiotics were prescribed and we were on our way. Still things didn't seem real. Almost like the disease hadn't fully registered with us, even though I knew deep down things were going to change and soon.