I Can’t Do Any More

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.

TJ and I at his 20th birthday party at Principal Park

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.

Dr. Steele

On April 22, 2013, my 16-year-old son, TJ, underwent heart surgery to repair a newly-diagnosed heart defect. He woke up from that surgery with an abundance of medical problems. At that time doctors were unable to diagnose him, so my husband and I made the decision to transfer him to a higher level of care hospital. On May 10, 2013, TJ was flown to Mayo Clinic in Rochester, Minnesota and admitted to the PICU at St. Mary’s Hospital.

I had been told that Mayo was one of the world’s best hospitals. Upon arrival, I had hope that doctors would quickly figure out what was wrong with my son, fix him, and send him home so we could get back to our lives.  But that is not what happened.

One of the first doctors I met was Dr. Steele.  She is a pediatric intensivist at St. Mary’s Hospital. Initially I did not like her, and every time I saw her coming, I wanted to run. She said things like, “Your son is very sick, and his lungs have taken a beating.”  “We think he may have had a brainstem stroke.” “He may never get off a vent.” Her words felt cold and harsh. Most times after speaking with her, I felt like she had just punched me in the gut.  I wanted to throw up. “Doesn’t she care how much this is hurting me?” I thought. I wanted her to tell me that my son was going to be okay and that he was going to go to college, get married, and have children like I had planned.  But she didn’t tell me that. No matter how hard I tried to get her to tell me that everything was going to be okay, she just wouldn’t say it.

After a couple of months in the PICU with many ups and downs, TJ started to improve. During evening rounds, I walked into TJ’s room and found Dr. Steele throwing a ball back and forth with him. She was laughing, and I could tell she was delighted to see his progress. My heart started warming up to her just a little.

One evening I had questions for her that I didn’t want TJ to hear. She took me into another room and spent quite a bit of time explaining to me what had happened to him. By this time I had started accepting TJ’s brain injury, and I was beginning to handle bad news a little better. I could now talk more openly without getting defensive. I appreciated her spending so much time with me and teaching me about my son’s medical condition.

Over time I could tell that she was genuinely sad about what had happened to TJ.  When she learned he had been a drummer, in an effort to bring him some quality of life, she had her husband come in and play his guitar for him.  My heart warmed up to her a little bit more.

Finally, after two and a half months, TJ had improved enough to be discharged from PICU and transferred to the rehab floor.  The medical staff told me that in order for him to be discharged, I had to change his trach three times, clean the trach, and learn how to suction it.  I absolutely did not want to learn. I had never wanted to be a nurse in my life. I had watched TJ have three respiratory failures, and I was terrified of his trach.  I wanted them to fix him and get him back to the way he was. So, I half-heartedly tried to learn. When the nurses noticed my lackluster efforts, Dr. Steele showed up and had a talk with me: “You need to learn. You have it a lot easier than some of the other parents around here do. They’ve got babies with trachs and the trachs are tiny.” After that I decided I didn’t like her anymore.

Soon after eventually learning all of my tasks, TJ was finally discharged to rehab.  When we were leaving, Dr. Steele said, “TJ, I don’t want to see you again until you walk through that door.”  I made a mental note and was determined that when he was up and walking again, we would come back to the PICU and show her how much he had improved.

However, we did not stay in rehab long.  TJ became very ill, and we were sent back into the hospital. After two more months of bouncing around the hospital with many peaks and valleys, we finally made it to rehab and stayed in rehab.  TJ began to improve greatly. He was walking with a walker, so toward the end of our three-week stint in rehab, TJ and I, along with his physical therapist, trekked down the hall to the PICU.  When TJ walked through the door, we saw Dr. Steele standing on the opposite side of the room. Upon seeing him, her jaw dropped to the floor. She came straight to us and exclaimed, “I’m so happy for you!” There was much joy and excitement.  And I began to really like her again.

A couple of days before TJ was discharged from rehab to home, Dr. Steele was sitting at a desk outside of TJ’s room.  I was excited to see her sitting there, and I went out to talk to her.

“You used to make me so mad,” I said with a grin.

“Why?  What did I do?” she asked.

“You told me the truth and I didn’t like it! Many times I would ask you a question, and when I didn’t like your answer, I would walk away muttering, ‘She don’t know everything.’”

She laughed and jumped off her chair and hugged me.

And from that day forward, she became my most favorite doctor ever.