Me? I’m attempting to go through our journey and countdown 31 things I used to have to do for Danny, that I don’t have to anymore. This exercise has already taken me down roads I haven’t traveled in my mind in quite some time. It has, and will allow me to be reminded just how far we really have come since August 16, 2005.
7. Feeding Time
You already know that Danny had a feeding tube for months, but it was a slow process to get him to a point that he could have whatever he wanted.
Although Danny could use his right arm and handled a spoon like a pro, it was important to slow him down.
Danny had issues swallowing. The flap that covered his wind pipe would not fully seal as he swallowed, allowing food or drink to slide into his lungs. This could develop into pneumonia, so we had to gradually add things to his diet.
In speech therapy at home, the therapist started him with baby food. Guava and Mango were his favorite.
Then he tried chocolate pudding and he wouldn’t quit.
This was why we had to feed him. Danny had to eat slowly. Not only did we need to control it because of his swallow, but also because the left side of his tongue was seemingly paralyzed. This made it difficult for him to control the food in his mouth or clear his throat.
He would take a bite and go straight for another. We would hold his arm and ask him to say ‘ahh’ so we could see in his mouth. We usually would ask him to clear his throat and swallow again.
Between each bite.
And, he couldn’t have anything to drink.
The baby food, the pudding and then even the soft foods like bananas or cooked carrots, were supplemental to his tube feedings. These were just practice to see how his swallow was functioning.
Once he got cleared for pureed foods, we started him very slowly. However, he wanted to eat everything in his sight.
We discovered he felt no fullness in his stomach when eating. His stomach and his brain were not connected so no signal was being sent to his brain that he was full and should stop.
So, we had to control it more by serving food in the kitchen before bringing it to the table. It was hard.
He hadn’t had real food in so long that we just wanted to give, give and give. However, his swallow wasn’t 100% yet. He still couldn’t have liquid or solid foods.
When Danny entered inpatient rehab at Shepherd for the second time, one of the first things they wanted to do was another swallowing test.
He was cleared on Day One to eat whatever he wanted.
It was a party!
You want chocolate milk? How many cartons? You want pizza? How many slices?
We gave him what he wanted and it became a runaway train.
He gained weight quickly and we were happy because he’d been frail for so long. But, then the weight kept coming because he kept eating. Before we knew it, we’d enabled him to gain 50lbs.
His brain was still not communicating with his stomach and we had to pull in the reigns. Yet, eating was the one thing that Danny could do for himself. Picking what he wanted to eat at a restaurant gave him freedom when the rest of his life kept him bound.
We fought and battled over food.
For so long, we’d wanted to give him that Arby’s Beef ‘n Cheddar that he’d begged for. And, now we could, but it wasn’t healthy.
The added weight made it more difficult to move him about and the added weight made it more difficult for him to move himself about.
The only point of freedom he had, we had to control so he really wasn’t free in anything. He knew it too and would accuse us of wanting to control him.
It was a battle.
Thankfully, it’s now a deserted battlefield. Danny’s stomach and brain talk to each other and Danny is conscious of his diet. He’s lost quite a bit of the weight he put on and is still working to reach a personal goal.