The sun was just peeking over the horizon when I awoke. I laid in bed for a while staring out the window at the sunrise. My thoughts drifted back to earlier days when TJ was alive. As I listened to the faint tictoc of the clock in the background, I thought, “What would I be doing right now if he was still here?” It certainly wouldn’t be laying in bed and slowly waking up as I was doing. Just thinking about the old routine made the stress start to well up inside of me, and as I rolled over, not wanting to leave the warmth of my blanket cocoon just yet, I whispered to myself, “I’m so glad we don’t have to live like that anymore.” Guilt then washed over me for even thinking something like that. Of course I would rather have TJ here…but not like he was. I’d want him healthy, but sadly, I couldn’t have both. In an effort to fend off the guilt feelings that plagued me, I got up to make the morning coffee. As I traipsed down the stairs, I reassured myself, “Don’t feel guilty. Guilt is not from God. TJ would understand how you feel, and he would feel the same way.”
Our sleeping arrangements had become rather unusual since TJ’s brain injury. Because he was trached and our room was a floor above his, we didn’t feel comfortable leaving him downstairs alone at night. We were afraid his trach could come out. It had happened a few times in the past. He was unable to clear his throat or swallow, and if the trach came out, after a while his trachea could get occluded with secretions, and he would be unable to breathe. Dr. Schiltz once told me the feeling of not being able to breathe is one of the worst feelings you can have. I had seen it happen to TJ three times. It was terrifying. I quivered at the thought of it happening to him while he was alone. The thought of him struggling to breathe and not being able to get anyone’s attention gave me nightmares.
Initially the baby monitor we bought seemed like a good idea, but the signal proved to be unreliable. TJ’s room was an addition and far away from our room. The signal haphazardly cut in and out of service. Secretly, I was happy it didn’t work because I don’t think I could have left him downstairs by himself with just a monitor anyway. I was too afraid we wouldn’t wake up if he needed us. Not waking up could mean death for him. It just wasn’t worth it.
After rearranging TJ’s room several times in an attempt to find the best configuration for good sight lines from the family room, we finally decided on putting the head of TJ’s hospital bed against the back wall of his bedroom and centering it between the two windows. Beside his bed was a black metal futon with a black and tan cushion for his dad or I to sleep on during the night. It wasn’t comfortable at all. After only a few uses, a deep canyon split the cushion where the futon folded. Why would a furniture designer think a cushion could hold its shape after being folded and laid flat, folded and laid flat repeatedly? It was junk.
Initially my husband Travis and I took turns sleeping in TJ’s room, but I tossed and turned all night, and sleep eluded me. I was always listening for him, always making sure he was breathing. Most nights were spent dozing off only to awaken again a short time later. After much frustration with my inability to sleep, my sweet husband volunteered to stay in TJ’s room every night so I could sleep upstairs. I was relieved. However, even in the comfort of my own bed, I still didn’t sleep well. The underlying anguish of having a sick child just won’t let a parent’s mind rest. Night after night I laid in bed for hours replaying in my mind that first week after surgery in an attempt to solve the mystery of what happened to him. When I was satisfied that I couldn’t make sense of it, my mind inevitably shifted to figuring out what we could do now to improve his life. No matter how much I grappled with turning the thoughts off and giving them to God, I never succeeded at overcoming them.
One particular morning I went downstairs at 5 a.m. to begin TJ’s morning routine while my husband Travis rested. My hope was to get to him before he had an accident, although quite often he was already wet when I got there, soaked actually, and this day was no different. He was wet everywhere, his sheets, blankets, comforter, pillows, pants, shirt, and even in his hair. In an effort to bring some levity to the situation, with a half smile on my face, I asked, “TJ, how on earth do you manage to get pee in your hair, buddy?” He didn’t appreciate my poor attempt at humor. He was embarrassed and humiliated by the incontinence and began wailing as I was trying to wake myself up and tend to him. I reassured him that I wasn’t mad and that I knew he couldn’t help it, but it didn’t matter. He knew how hard it was on us, and he felt like a burden even though I had told him again and again that he wasn’t.
Feeling his wet clothes touching my bare arms and pajamas, I wrestled him up to a standing position in order to help him to the bathroom, which was not an easy task with his lanky, 6 foot 1 inch body that he had no control over. Like pinballs in a pinball machine, we ricocheted off walls and furniture as we made our way to the doorway. I was always afraid of falling and hurting him or hurting myself and pulling a muscle in my back.
I removed his wet clothes and sat him down on the toilet. I hurriedly ran back to the bed and stripped it down. The urine odor was heavy in the room, so I quickly opened his outside door a crack to let in some fresh air. I then raced back to the bathroom, picked his wet clothes up off the floor and added them to the wet bundle I was already carrying. He was still sitting there waiting for me to finish. “I’m sorry, buddy. I’m trying to hurry,” I said. “Give me just a couple more minutes.” I ran to the washing machine and started it as fast as I could. I had to be quick. He was going to start getting cold soon and then would be upset.
After returning to the bathroom and assessing the situation, I concluded that he was too wet to clean up with a washcloth. Preparing myself for the conflict that was about to ensue, I reluctantly told him he was going to have to take a shower. As usual, the wailing started up again, but this time it was even louder. Instinctively I knew the issue was he didn’t want to take a shower right then. He was a grown man and despised always being told what to do and when to do it by his mother. I begged and pleaded with him to stop crying because it was early in the morning and I was so tired even though I already knew I was fighting a losing battle. I knew he wouldn’t be able to stop howling. The brain injury had left him with an inability to control his emotions.
Most everyday this was the scenario that took place, but there were other mornings when the wailing would start up, and I would automatically assume that he was shrieking because he didn’t want to shower. Out of sheer exhaustion, I would scold him for his behavior, and in turn his wailing would escalate even louder after which my scolding would escalate even louder until eventually we were in full blown chaos, only to find out later that the issue was something else entirely. Sometimes he was cold or his trach was bothering him or the water was too hot or something was hurting. Upon learning what the real issue was, guilt then consumed me, and I hated myself for not being more patient with him and for assuming things and not checking with him first. I felt sorry for him that he had to live like this. I felt sorry for myself that I had to live like this.
Other times when his emotions were elevated, he was unable to calm himself enough to finger spell the sign language alphabet and communicate what was wrong. My stress level shot up as I desperately attempted to identify and correct the problem. Not being able to communicate was miserable. It was a level of misery I had never experienced before. We tried and tried to figure out a solution to make things easier for all of us, but nothing worked. As the years went by and the realization set in that this was now our life, it became increasingly harder to shut the hopeless feelings out. We were slowly sinking under the weight the demands of the brain injury created.
On this particular morning after fighting me and attempting to exert his manhood, he eventually conceded and got in the shower. I don’t know why he always fought me. Once he was in the shower, he loved it. The warm water loosened his tight, twisted muscles, and for a little while, his body could relax.
Taking a shower with a trach, however, was no easy task. I was always careful to make sure water wasn’t hitting directly on his trach, and even though we used the trach guard, water would still find its way behind it causing him to violently cough and leaving me with more guilt feelings for not protecting his airway better. His life was incredibly hard, and sometimes I accidentally made it harder.
While he soaked in the shower, I turned my attention back to the bed. I wiped it down with Clorox wipes, remade it as quickly as I could, ran back to the shower, washed him up with Axe shampoo and body wash, which was his favorite because he thought the ladies liked it, and then let him soak again until he signaled by pounding on the wall that he was done. After drying off and wrestling with arm holes and pant legs that twisted limbs don’t easily fit into, we jostled our way back to the bed. I laid him down and threw his warm comforter over him. After spending so much time in hospitals, he had grown fond of the warm blankets from the blanket warmers, so I recreated them at home by using the dryer. As he nestled into his bed and felt the warmth of the comforter surrounding his body, a look of pleasure and contentment finally broke out across his face.
As he rested, I mixed his morning meds with water in med cups and administered them through his G-tube. The meds calmed his twisting down and relaxed his muscles. I couldn’t stand seeing his body tight and his arms twisted up over his head. Sometimes his arms were in positions that didn’t even look human. His shoulders looked like they would dislocate at any moment. Frequently, I counted the hours until it was medication time. For a short time after receiving medication, he would be comfortable. After finding a good show on TV like Dog the Bounty Hunter, which I didn’t consider good but he did, I was finally able to slip away for a few minutes and drink my morning coffee before returning to finish the rest of his cares.
After taking a 15-minute break, I returned and began vest therapy. I wrapped a vest around his chest, and two tubes were inserted into pockets on the vest on one end and connected to an air-pulse generator on the other end. When turned on, the vest inflated, and the generator delivered rapid bursts of air that created a vibration against the chest wall and helped loosen mucus. We ran three 10-minute cycles increasing the settings with each cycle and suctioning the mucus out through his trach as it loosened.
In between cycles I cleaned out his suction machine which was the job that nobody else wanted to do. While cleaning it, I looked away and thought about something else to keep myself from retching. We spent our life chained to that suction machine. It was used multiple times an hour, and we couldn’t go anywhere without it. It was the most crucial piece of equipment he had. People were grossed out by his secretions, and he knew it. He had once been a handsome, outgoing, friendly teenager. The kind of boy any parent would want their daughter to date. Now he had become an untouchable, a leper, a reject that many were uncomfortable being around. Memories of who he used to be played in my head as I watched him now struggle everyday. It was agonizing.
For breakfast I poured his liquid food into a pouch that hung from an IV pole. The pouch was connected to his G-tube with plastic tubing. While eating, his bed had to be at an incline of 30 degrees. If it was lower than 30 degrees, we’d run the risk of aspiration which could cause pneumonia. Sitting at 30 degrees was very difficult for TJ. His body continually fell to the side. Multiple times during his feeding, I wrestled him back up into a sitting position.
While he ate his breakfast, I brushed his teeth which was the job I dreaded most. It was even worse than cleaning the suction machine. TJ had a tough time opening his mouth. His jaw was very tight, and he had little control over it. If by chance he had his mouth open, when anything like a toothbrush or suction catheter got close to it, his jaw rapidly snapped shut. Sometimes his tongue or lips were in the way and would get caught between his teeth. He would squeal in pain while I desperately tried to pry his mouth apart to release them. It was so stressful. Brushing the lower teeth was also a challenge. I had to push down very hard on his lower jaw to keep his mouth open and frantically brush the lower teeth before his mouth snapped shut all the while worrying that the toothpaste would slide down his throat into his lungs and cause an infection. But today everything went smoothly, and I was relieved that brushing his teeth was done.
By this point Travis was awake, and we were ready to tackle our very last chore of the morning routine which was doing site cares on his trach and G-tube and changing his trach strap. The inner cannula of his trach was removed and cleaned with a wire brush, and the skin under the actual trach was cleaned with water and Q-tips. Dressing was inserted under his trach. The skin area around the G-tube was cleaned in the same way, and dressing was also applied.
The hardest part of his trach cares was changing his trach strap, and it required two people. A trach strap is the strap that goes around the neck and holds the trach in place. He hated having his trach strap changed. He fussed and cried and wiggled and fought which made it that much more stressful. While the trach strap was being changed, either Travis or I manually held the trach in place while the other changed the strap. Today, because of his wiggling, the trach came out. I hurriedly inserted the obturator, which is a guide with a point at the end, into the trach, lubed it up, and slid the trach back into his trachea. Travis held him down while I hastily fed the Velcro ties through the tiny holes of his trach and put his replacement trach strap on. Whew! All done and everyone is still alive. Mission accomplished.
Finally, it was 8 a.m. and he was ready for the day. I was covered in secretions and urine, but my morning routine was finished. I then went upstairs to take a shower. Travis had left for the day, so I had to be quick because I didn’t like leaving TJ downstairs alone. Just as I was preparing to get in the shower, I heard the all too familiar wailing sound coming from TJ’s bedroom, the telltale sign which indicated he had had another accident….
This week begins a four-part series on an enormous issue in the brain injury and special needs community: lack of respite care and social support for brain injury and special needs families. It is an issue I personally experienced and one that I repeatedly hear other families are experiencing as well. This issue no longer affects me personally, but I know there are many families still out there buckling under the weight of their daily routines. During this series, my goal is to educate others on the mental, emotional, and physical exhaustion the brain injury and special needs families and caregivers experience on a day-to-day basis and to bring awareness about the kind of support these families desperately need.