So, in June, Amory finally got laid off. He lasted longer than most and we were very thankful for that. He tried to do dry-walling for a while but it was ultimately not a good fit for him. So, at the end of June I got a job as a COVID screener/greeter at a Seniors Lodge in Lacombe. I love it and it's been an amazing experience. The people and the job itself is exactly up my alley and I have really been enjoying being able to get out everyday.
However, we did notice around this time Katha had started to decline. We noticed in July that she started choking on solid foods. I mentioned to her doctor at one of her procedures that she had started choking on solids. He was immediately concerned and told us that if she is choking on solid foods, that was a significant sign of progression in her disease. We needed a swallow test immediately which, if showed she was choking significantly, she would need a G-tube. Even with a G-tube her life expectancy would be months rather than the years we had discussed back in March.
A G-tube is a tube that would be surgically implanted into her stomach and we would feed her formula through a bag into her port. We feel that this would really be a bad thing to happen to Katha because she loves to eat and it is a huge motivation for her to keep fighting on this path she been on for her entire life.
So, we had the swallow assessment done and when I was in the room with them, the first time the technicians saw her swallow on the floroscopy, they all gasped. So, I figured it wasn't good news. As we were leaving the test (which took 15 minutes instead of the hour it usually does) they told me that the doctor should be able to give us the results later that afternoon.
The test results weren't in until the next day and they were worse than expected. Katha can no longer simply swallow any consistency of food. Everything gets stuck in her throat and the only reason she hasn't already asphyxiated is because of her voice box and they don't know how long it will be able to keep her from asphyxiating.
Basically, they told us it was a miracle that she hasn't asphyxiated already, that she probably will soon and that they need to put in a G-tube as soon as possible.
Even with the G-tube, Katha still has to swallow her saliva and she gets sick a lot at night. We have been told that she is now medically terminal (which generally means less than 6 months).
As you can imagine, this has been a huge blow for the family. We are just enjoying our time that we have left with her and being thankful for having so many more years than the doctors had originally thought. We will be putting in a G-tube so that we have to worry less about choking but know our time is short.
We will try to keep the blog updated as much as possible but it may get difficult in the coming months.
Please keep Katha in your prayers.
Now the symptoms:
Enlarged liver and spleen: The same as far as I know. We had an ultrasound but heard nothing from it and usually no news is good news.
Dysphagia (trouble swallowing): Obviously, bad. Katha has been choking at least once a meal, we are just waiting for her to start asphyxiating.
Basal Ganglia (holding limbs at awkward positions): Katha has a hard time with washing her hands or anything where she has to hold her hands straight. She also can't straighten her legs or her ankles anymore.
Dementia (memory loss): Katha doesn't know the days of the week, the month or even the year. She knows her family, but doesn't really pay attention to anyone else to remember them.
Seizures: Still none
Gelastic Cataplexy (falling down in response to a large emotional outburst): Katha still "passes out" when laughing. If she does this too many times in a row she will stop breathing as well as seem very confused when she regains consciousness.
Sleep related disorders: Katha will sleep for 30 hours then be awake for 30 hours. There is no way to regulate her sleeping. We just try not to have to wake her up very often.
Vertical Supranuclear Gaze Palsy (Trouble moving the eyes up and down): This comes and goes. She can sometimes look up a little but not very much. Sometimes she can't look up at all.
Hearing Loss: Katha still refuses to wear her hearing aids but doesn't seem to have trouble hearing us when we are talking about procedures. She will immediately start crying, even if she isn't anywhere near us.
