When Aaron was hospitalized in June, the biggest concern that his doctors had was his very low sodium count. We knew he also had something else going on because of his high fever. His pneumonia didn’t show on X-rays for a couple days, but the sodium was a huge problem because it can affect the heart. There are at least three reasons why his sodium may have dipped so low. It could be one of his seizure drugs that he’s been taking for years; it may be a syndrome related to the pituitary gland; or it could be that Aaron drinks too much water. Too many fluids can wash sodium and other nutrients out of the body at too great a rate.
Dr. Broberg, Aaron’s family practice doctor at McConnell Air Force Base, has been seeing Aaron since his hospital stay. He recently checked Aaron’s sodium levels again, twice, and found that they are once more going down to an unacceptable level. Therefore, he wants us to limit Aaron’s fluid intake to about a liter and a half a day. Now, this sounds like Aaron can still drink a lot but when you consider coffee in the mornings and even the water he drinks with his pills twice a day, there isn’t a whole lot left over for Aaron to just casually drink during the rest of the day. At least it’s not a lot for Aaron, who does love his water.
Aaron usually has three cups of coffee in the morning. They’re not always full cups, but still there are three cups. Aaron’s a creature of routine, remember, so if he has had three cups of coffee in the past then he wants three cups of coffee in the present. Three. Not two. And definitely not one.
Aaron also has two water bottles that he keeps in the frig. Each bottle holds 23.6 ounces. I know that now, because I had to calculate his intake on Thursday, our first full day of our new routine. Aaron loves taking those two water bottles to his room and drinking the water while he watches a movie or plays a game. Two. Not one. Definitely not one.
Day Number One: On Thursday morning, I began calculating ounces of fluid before Aaron got out of bed. I decided to give him 10 ounces of coffee, which isn’t much. So I split it between two coffee cups. It really didn’t look like much at that point as I stared down at the halfway filled cups. Well, maybe Aaron wouldn’t notice, I thought. Silly me. Then I allowed him 5 ounces of water to drink with his pills, and that would be his morning allowance.
I didn’t phrase it that way with Aaron. In fact, I didn’t say anything about restrictions or allowances when Aaron plodded into the kitchen that morning. I just poured his coffee as he stared at the empty carafe when I was finished. I poured his pill water, which he usually does, as he continued to stare. He was doing his own calculations, I just knew it, and it didn’t have anything to do with wanting to comply with doctor’s orders. It had everything to do with restrictions, even though I didn’t say that ugly word. It had everything to do with his routine, as well.
I tried to be as normal as possible and as happy as could be without being weird, as Aaron would call me if he sensed that I was being fake. Finally, he said something about only two cups of coffee. Oh boy.
“Remember that you need to be careful about how much you drink?” I reminded him. “And isn’t it great that you can still have coffee? Some people can’t drink coffee at ALL!”
He was pondering that dismal outlook as I left his room, where I had put his two cups beside his desk……in the place where there are usually three cups. Two cups. Not three.
The rest of the morning was without incident. I let our Great Dane ride with us as I took Aaron to Paradigm. Aaron loves that and I wanted Aaron to love as much as he could on this day of the beginning of restrictions. Aaron was happy for me to run into Paradigm and discuss the fluid situation with Barb, telling her of the need to monitor Aaron’s intake. She saw the difficulty in this prospect for Aaron, though she didn’t say a lot about that element. The looks between us spoke volumes.
When Aaron got home that day, he told me that he didn’t drink anything while at Paradigm. I told him that he didn’t have to go without water all day. He took that to heart as he later reached into the refrigerator for his two water bottles, which I should have replaced with smaller bottles earlier. As he started to take the two bottles, I told him to take one bottle instead. One. Not two.
Furthermore, I told him to drink half of the bottle now and then save the other half until later. Surprisingly, he agreed. He was fine for the remainder of the evening, even joking about drinking his other water bottle but not touching it at all. So far, so good.
Day Number Two: I felt confident on Friday since Aaron had done so well the day before. He was handling this restrictive life better than expected. Yet I knew, too, that his attitude could quickly change. This was confirmed when Aaron came downstairs after he got out of bed. He sat across from me at the kitchen table, still sleepy and unsmiling despite my chipper, “Good morning, Aaron!”
“I’m just beginning to hate that doctor,” he said without emotion. “I want my two bottles of water.”
Well, he laid it out on the table first thing. Now to deal with it. God said to ask for wisdom when we need it, so I did. Not out loud. Aaron would have thought I was weird.
“Do I have a doctor appointment?” he asked. He was wondering about the next week. I told him that he did have a doctor visit scheduled.
“Is it that SODIUM doctor?” he asked with emphasis. I told him that it was not Dr. Broberg, careful to use his name, but was with his seizure doctor. I gently tried to clear Dr. Broberg of all sodium charges, explaining Aaron’s situation and history, but of course this all meant little to Aaron. He was simply dreading another long day of drinking only one water bottle. One. Not two.
He watched me as I got up from the table and starting getting out his coffee cups. “Can I have three cups of coffee?” he asked. “Those two went by fast!” he added.
Oh Aaron, you do make me smile even in the midst of your frustration. So I did give him three cups of coffee, which exceeded my desired liquid limit for him…..but the cups were only about half full. He noticed this, of course, and I reminded him that he often has half full cups of coffee since he is often shaky. He accepted that explanation, and I carried his half full cups of coffee up to his room, where I set them in their usual place. Three cups. Not two. Aaron was moderately happy, but still suspicious.
Later, as I was drying my hair, Aaron strode in the bathroom. He had a smile, and now it was my turn to be suspicious. My instincts were correct.
“Mom!” he said with excitement. “I drank my TWO bottles of water!”
“You didn’t,” I responded.
“Yes, I did!” he replied. “But I drank half and then half and then half.”
I just stood there. I wanted to laugh and I wanted to lecture, but I was truly relishing his method. He remembered that I had instructed him the day before to drink half of his water bottle. So on this morning, he decided that referencing those “halves” would soften the blow of his disobedience. Pretty clever, actually. I wanted to tell him that for two water bottles, he really should have added another half to his list. But I decided that this wasn’t the time for a math lesson.
Sure enough, in his room stood his two water bottles. Totally empty. Two. Not one. And not one half.
Today I replaced his 23.6 ounce water bottles with an 8 ounce bottle. Such a little bitty bottle compared to the others! You should have seen his face when I showed it to him! Half amusement and half surprise and half disgust. I guess that’s one too many halves for just one bottle. One. Not two.
Dr. Broberg had no idea of the complications this fluid restriction would cause in Aaron’s life, and therefore ours as well. How could he? Living with autism is complex enough on a “normal” day. Throw in restrictions and changes and routine disruptions, and you have a mess on your hands.
Day Number Three: Today is Saturday and Aaron is happy. We hope that this happiness lasts. He does have three cups of coffee, partially full. Three. Not two. He has one little water bottle. One. Not two.
And I do have hope that we can make this work. I have hope on this day three. I did not have much hope on day two. Let’s pray that we can look back on this day three and see it as a successful day. Then I will want more days like this one.
Day three. Not day two.