ALS Clinic Visit #7

I think yesterday’s clinic visit takes the record for the shortest visit we’ve had yet! We got there at 9 and were done by about 12:45!! It was nice to have such a short visit, but there are tradeoffs. You see, having that short of a visit means that there isn’t that much to talk about anymore. We spent most of our time discussing where things are at with eating, communicating, and breathing – there was really no discussion at all anymore about how Tim can live independently, as it is a foregone conclusion that he can’t, and he won’t.

As always, the first thing we do is see how much Tim weighs. I think he has done really well this time. He weighed 159.4 lbs. If I’m not mistaken, that means he has actually gained a little bit since April.

Next we met with nutrition and speech therapy. We will be starting to add nutritional supplements through Tim’s g-tube now. Meals have been taking about 45 minutes for him to eat. After about 25 minutes, he is starting to get tired. Now, he can eat until he feels tired and then we will put 1 or 2 cans of nutritional supplement in through his tube to finish his meal. It will be entirely up to him how much or little he wants to start utilizing this option. If he’s having a great day, he can eat the entire meal on his own; if he’s really tired and just doesn’t want to deal with it, he can have his entire meal through the tube.

We have also been made aware that he probably isn’t getting enough water. So we will be putting more water in through the tube now, too.

Maxine (speech therapy) flat out told Tim to start using his Dynavox for communication purposes. Right now, he only uses it to read and use TV remotes. We’ll see how well he listens to that instruction. Quite honestly, I don’t think he will, but he may surprise me yet.

Another piece of this discussion was the constant problem of phlegm stuck in Tim’s throat. That’s what causes him to cough the most. It also interferes with his talking. There are a couple things that we can try. We will be getting a suction device as well as something called Cough Assist. Tim seems willing to try the suction, he didn’t seem as interested in the Cough Assist. We’ll see what happens as we experiment with them.

Next, respiratory measurements. Last time, we were quite surprised to find that his lung volume had dropped to 45%. This time, it was no surprise at all to find that his lung volume had dropped to 24%. His voice has gotten so soft over the past three months. He has almost no voice at all now. Thankfully, he is not feeling short of breath right now.

Dr. Rubens (pulmonology/palliative care) met with us last. He discussed with us at length the breathing issues we are currently dealing with as well as what is to come. Tim asked about being on oxygen. Dr. Rubens’ answer was exactly what I thought – adding oxygen would only help if Tim’s asthma were acting up. What’s happening in Tim’s body is not anything to do with oxygen levels. It’s all about how much the muscles are (or are not) opening up his lungs to fill completely. “Adding oxygen won’t make a difference in the lungs.”

Looking ahead: without enough deep breath, the lungs won’t  be able to expel the extra CO2 in the body. There will be a CO2 buildup, so Tim will eventually get more and more sleepy. He will also start to feel short of breath. There’s really nothing that can be done to change that. But there is a way to trick the brain into not feeling like it’s short of breath. One side effect of narcotic pain medications is that it blocks that feeling of shortness of breath. When Tim starts feeling like he is short of breath, we can just call in and get a prescription to help this. But in the end, the CO2 buildup will be toxic to Tim’s system. The most likely scenario is that Tim will fall asleep and just not wake up.

This is a very “clinical” update on where things are at with Tim. After getting home, I spent the rest of the day escaping into reruns of Bones on Netflix. I struggle to stay in the real world. As much as Tim and I had problems over the years (as all couples do), the fact is he has been my friend and intimate companion for almost 20 years now. I already miss him – and that’s just because he doesn’t talk much anymore. I am not ready to say goodbye to him yet.


One thought on “ALS Clinic Visit #7

  1. Oh Barb, so much for you to carry. So much to mourn. So much….. So much…..

    I got together with some friends last week and we prayed together for each other. We prayed for you and Tim. Thinking of you.

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