Isaiah 30:21 “Whether you turn to the right or to the left, your ears will hear a voice behind you, saying, ‘This is the way; walk in it.’”
My son TJ was discharged from Mayo Clinic the first time on September 3, 2013, after a four-month hospitalization. Despite his very complicated medical condition, our plan was to take care of him at home. He was 17 years old and still a child. He had been through a harrowing experience, and I wanted him to have the comfort that only being at home could provide. I couldn’t bear the thought of placing him into a care facility after all he had been through.
During our stay at Mayo, the medical staff was very focused on training parents on how to take care of their children with medical problems. As I stated in earlier posts, I despised learning and didn’t appreciate being forced by the medical staff. My hope was that if I held off long enough, he would get better, and I wouldn’t even need to learn his healthcare routine. But after being told that he wasn’t getting out of PICU until I learned, I begrudgingly started working on checking off the boxes of my to-do list which included daunting tasks such as changing a trach three times and CPR training. After completing all the tasks, I decided I had had enough and I wasn’t going to do any more of it until we got home.
The next morning when I walked into TJ’s room, after updating me on TJ’s night, the nurse told me that I needed to do his morning site cares. Site cares involved cleaning around his trach and G-tube with Q-tips and changing the dressing. I had already checked my three boxes off for having done site cares, and I felt that I knew how to do it good enough. Upon hearing her instruction, I immediately started bawling and exclaimed, “I’ve done my three times already and I can’t do any more! I’m tired! There are other things going on in my life right now that you don’t know about!” She said, “Well, you still need to be doing them. You can’t just stop. You’ve got to keep practicing.” I turned my head away and looked out the window, and the room got very quiet after that.
What were those things that were going on? Well, I was grief stricken and heartbroken, and my body was beyond exhaustion. I wasn’t getting much sleep. I tossed and turned every night wondering if my son was going to get better. I wondered what kind of life he was going to have and how we were going to live like this. I went over and over in my mind his decline that first week trying to figure out what had gone wrong. Even doing
5 minutes of site cares seemed to be too overwhelming.
The nurse began to do his site cares then and gave me a break, but my relationship with her was never the same after that. She was quiet around me and didn’t make eye contact with me anymore which bothered me. Looking back, if I could go back to that day, knowing what I know now but also remembering how I felt then, I still don’t know I could have reacted any other way. However, what I would tell that nurse now is, “Thank you for pushing me. Thank you for putting up with me. Thank you for making me learn how to take care of my son. Don’t ever stop pushing parents when they protest and give you a hard time. What you are doing is so important.” Once we got TJ home, I began to realize just how vital those skills were and how the medical staff at Mayo knew that.
Several months later, my son was admitted into a brain injury rehab facility. Most days I stayed with him all day and went home at night to sleep. Early in his stay there, one afternoon I heard the all too familiar sound of his trach gurgling which meant it needed suctioned. While the nurse was in the room, not even thinking twice about it, I jumped up and began suctioning. I looked up, and the nurse was standing there stunned with eyes wide open. I asked, “What’s wrong? Did I do something wrong?” and she said, “I have never had a family do that before.” That was when I first began to understand what a rarity our knowledge was.
TJ also had a G-tube. Once in awhile it would get clogged, and I would be unable to get it cleared. We would then load up in the van, go to the hospital to Interventional Radiology, and sit there for hours until they removed it, put a new one in, and then x-rayed it to make sure it was in the right place. I hated going down there and sitting all day. It was uncomfortable and hard for TJ to sit in his wheelchair that long, so I decided I would just have extras available at home and I would do it myself. I thought if I can change a trach, then I certainly can change a G-tube. The only thing I couldn’t do was x-ray it, but I decided we would be okay, although I figured a doctor would probably disagree with that.
A few months later TJ had an appointment with the GI doctor. When he asked me how often the G-tube gets changed and who changes it, I was afraid to tell him that I was the one who had been changing it and wasn’t getting it x-rayed. I reluctantly confessed to him that it was me and prepared myself for the scolding I was about to receive. He then said, “You’re doing it? That’s wonderful! I never have patient’s families do that! You’re doing a great job!” A feeling of relief washed over me, and I once again realized how unusual our medical knowledge was.
Another time toward the end of TJ’s life when he was in the hospital with pneumonia, a pulmonologist came in to talk to me. As we went over TJ’s symptoms and treatment, the doctor commended me on the great care we had been giving him. He said, “He hasn’t been in the hospital for two years which means you are doing a very good job taking care of his lungs.” Upon hearing this, I was beaming inside and knew it was because of the training I had received at Mayo.
Many times since that initial brain injury in 2013, I have thanked the Lord for his guidance during our son’s illness. Even though this terrible disaster had occurred, the Lord was with us every step of the way, taking care of us, and pointing us in the direction we needed to go. Life flighting TJ to Mayo was the best decision we ever made in those early days after tragedy struck, and I am thankful that the Lord put people around us who encouraged us to go there. I am thankful that God had provided Travis with a job that had impressive health insurance that allowed us to life flight TJ to Mayo in the first place. I am also thankful for the medical staff in Rochester who greatly care about the people they treat and are in the trenches battling with you at the time when you need them the most.
There are times in our lives when God leads us into things that we don’t want to do. I didn’t want to learn my son’s medical care, but I’m so glad I did. My life was richer because of it, and I was able to spend three years with him at home. Because of the battle we were in together, the bond between TJ and I grew strong, and it was hard for us to be separated from one another. I hugged and held hands with my 21-year-old son every single day. There are not many mothers who get to do that. I was very blessed, and I am looking forward to the day when we are together again.