Aaron’s been home from his hospital stay for a week now. He’s doing well, regaining his strength and overcoming side effects of some of the strong meds that he was on. This was Aaron’s first major hospitalization for a serious illness, and we certainly pray that it’s his last. It was interesting to watch him in that setting, and sometimes sad, sometimes funny, and often frustrating. Gary and I were so thankful for the very patient and understanding nurses, aids, and doctors who cared for Aaron, for caring for special Aaron at times takes special calmness…..and some thick skin as well.
We were actually amazed that Aaron handled hospital life as well as he did. He was totally out of his element, out of his routine, and out of anything remotely familiar. He didn’t have his bed, his blankets, his clock, his animals, and so many other things that make Aaron’s life his life. For the first several days, Aaron spent more time sleeping than anything. But he still had to answer questions, some of which he thought were particularly dumb. He really didn’t like questions pertaining to his bowel habits, and sighed and mumbled a definite, “HUMPFFF!” It took him awhile to understand the annoying catheter, and let’s just say that bathroom trips for the other were very dramatic.
“Are you going to flush?” Aaron would ask immediately. Because this is what he does at home, and these nurses were taking too long, he thought.
“Yes, we’ll get that in a minute, Aaron,” they would answer as they tried to balance very weak Aaron and keep him from falling.
“When are you flushing?” he would quickly ask again.
“We’ll do it in a second,” they replied again.
“But you need to flush!” Aaron repeated.
“We know, Aaron. We will,” they responded.
“When are you flushing?” he asked again.
And I just sat out in the room smiling, because I know Aaron and I know that this flushing business is supposed to be done a certain way by him. He was realizing that he couldn’t count on the nurses to do it correctly at all. No big deal to you and me, but huge to Aaron.
He wanted some normalcy, so on the day that he was admitted and I was going home in the evening, I stood over his bed and told him that Dad was staying while I ran home. “Mom, can you bring me my watch and my glasses?” Of course he wanted those things. When I returned with them, he immediately put his watch on his arm, pushed up high the way he likes it, and there it stayed for the remainder of his time there.
He had been wanting the movie “Tremors” that he had seen in Wal-Mart. In the midst of his fever, coughing, and pain, he asked if he could have that movie. On Sunday I ran up to Wal-Mart nearby and got it for him along with some head phones, for Aaron MUST listen to movies with head phones. He tried watching it right away that day, but he mostly slept through it.
On Sunday morning, his coupon cutting day, he remembered. “Mom? I just want to go home and cut coupons.” I felt so sorry for him! But I assured him that I would save the coupons for him.
In his sleep one time, he said, “This is not fun.” Again my heart hurt as I looked at him with needles and tubes and gadgets all around him, burning up with fever and coughing, trying to swallow pills when needed. Then later that same night, he unexpectedly said, “I love you, Mom.” For Aaron those words don’t come often or easily, so with surprise and with hidden tears I stood at his bed and welcomed his hug. He was scared and he was so sick. I was scared, too, but I couldn’t let him know that.
|You can barely see his watch on his arm. 🙂|
Several times that week he looked at the clock sometime after 7:00 at night, and told us that he missed Wheel of Fortune. It bothered him to miss his show, but he was so often sleeping soundly during that time, and Gary, who was with him then, wouldn’t awaken him for that. I wouldn’t either, so we again assured Aaron that he could watch Wheel of Fortune when he got home. His routine was totally a mess!
His bluntness was often embarrassing to us. I was so very relieved that the staff understood the autism, and that they made sure to brief all the staff that came on during the shift changes. I went down with Aaron to get another chest X-ray one morning. The technician said, “Well hello, Aaron! Do you remember me? I took your X-ray yesterday.” Aaron immediately replied, “Who cares?” I heard it out in the hall and Aaron heard me calling his name to correct him, but the nurse standing there with me laughed.
All the nurses and others assured me that they understood Aaron, and they truly seemed to do just that. Yet still I would find myself apologizing and explaining, even as they told me that it was fine. They genuinely seemed to like Aaron, even when he would call them a jerk. Yes, he called some of them a jerk, especially when he was feeling terrible and didn’t want them messing with him. Once I went out to the nurse’s station, and they were laughing, asking each other if they had been called a jerk yet by Aaron. Proud Mom moment. At least they thought it was funny. Andrea told me that Aaron just said what lots of other patients wish they could say when they felt bad.
There were so many moments with Aaron. One night, late, he just wanted to go to sleep but had to take his meds and have his vitals taken, a new IV started, and so forth. He was so tired, and when the nurse was finished he said, “You can go out of my room now.” And one day when the sweet nurse’s aid walked in, I said, “Aaron, there’s your buddy.” He looked at her and said, “You’re not my buddy.” Very matter of fact, not hatefully, but he made his point.
Physical therapy was interesting. Aaron didn’t want to answer all their questions on their first visit…..questions about our house so they would know what he faced when he went home. He sighed a lot and rolled his eyes a lot, and I fussed at him a lot. One day he was in bed when they came to walk him up the hall, so out of bed he came and up the hall he walked. We knew that Aaron needed to sit in the chair when he returned to his room, but he walked over to his bed, looked down at it, and told us, “I said I want here.” Nope, Aaron. You’re not getting your way, even if you call us jerks.
When his fever finally broke on Wednesday night, and he felt much better all day on Thursday, he was even more vocal about how frustrated he was. Feeling better made him miss home more, and missing home more made him more vocal. He never totally lost control, but he was more unhappy and bossy, that’s for sure. I told the doctor on Friday morning, before she came in the room, to be sure that she had put her thick skin on. But when she came to see Aaron, her face was all smiles. His chest X-ray that morning was better, and she said he could go home! YAY!! Aaron smiled a huge smile, and was the happiest I had seen him all week.
One of the last things he had to do was let Occupational Therapy come and give him a shower. He was willing to do that. In fact, he had enjoyed showers the past two days. He did think sitting on the chair was pretty weird. The occupational therapist was there to observe Aaron and to show him some ways that he could shower more safely. I listened as I packed up our belongings out in the room.
“Aaron, first you need to wash your hair,” she said.
“No,” Aaron replied. “I do it this way.”
And as he did it his way, she tried to instruct him. But Aaron told her that he did it THIS way. She finally told him to at least wash the top of his head, too. My former suspicions about his showering were confirmed.
This scenario continued as I listened and quietly laughed.
“Aaron, now you can do this,” she would say.
“But I like doing it this way,” he would reply.
“OK, let’s do this,” she said.
“No, I do it like this,” Aaron stubbornly replied.
On and on it went, with the OT giving Aaron suggestions while Aaron would have none of it. Nope, he was not about to change how he showered or how he dressed afterward. I realized after several minutes that this nice lady wasn’t instructing Aaron on how to shower. He was telling her and showing her how he showered. She was basically helping him shower, his way. I was thankful that she helped Aaron shower, and I was hoping that maybe something she said stuck with Aaron, but I seriously doubted it. Aaron’s routine isn’t changed so easily, even if you are an OT.
We left the hospital with hugs from our wonderful nurse that morning and a big smile from the aid, the one who was Aaron’s buddy whether he agreed or not. I’m sure Aaron left his mark on everyone. I have the utmost respect for the hospital professionals who worked so well with Aaron, even when he was grumpy and at times rude.
And was Aaron ever glad to get home! That story will be for another time.