Care Facility Nightmares

TJ’s Junior picture before his injury

Respite Care
Part 2

When TJ was discharged from Mayo and a brain injury rehab facility, both times our plan was to take care of him at home.  Both places were very concerned about it because of the amount of care he needed. They were concerned his care would be too much for us, and we would get burned out.  They were right. It did take an enormous toll on us.

After reading last week’s sneak peek into a three-hour period of time into our lives, many of you may now be thinking, “OK.  I get it. The care is overwhelming, but if he’s too much to take care of at home, why don’t you put him in a facility?” That’s the issue I would like to address in this second part of the Respite Care series.

TJ and his amazing outpatient occupational therapist, Mary Jo

Let me start by saying that in every hospital and care facility we were in, there were absolutely amazing, fantastic people working in every one of them.  Several of these people I later had in my own home to take care of TJ from time to time. They worked very hard and were very compassionate to the people they served.  Some we developed deep bonds with, and I still stay in touch with them. But as with anything in this life, there were some bad apples as well in these facilities, some workers who shouldn’t even be in health care taking care of helpless, defenseless people.  Our experiences with these people are what I want to talk about in this posting.

After TJ’s injury in the spring of 2013 until Thanksgiving of 2014 when TJ came home for good, he was in and out of hospitals and rehab facilities.  In the fall of 2013, he was in a facility for rehab, and his body was contracting and twisting severely. It was a terrible thing for a mother to watch.  It was involuntary and he couldn’t control it. He was laying on his back, and when the muscle spasms hit, he would arch his back severely. It didn’t even look human.  The position he was in was causing the end of his trach to press into the walls of his trachea closing the hole of his trach and cutting off his airway. I could tell he was struggling to breathe.  I started panicking and told the RN who was standing by that he couldn’t breathe, and she responded, “Well, maybe that’s a good way for him to learn to quit arching his back like that then.” My mouth fell open at her response.  I was shocked that a healthcare worker would say something like that. We weren’t talking about an arm or a leg. We were talking about his airway. At this point I was starting to realize that I would never be able to leave him alone when he was in a care facility.

That same facility would not let me stay overnight with TJ.  After he had been there a couple of weeks, the morning of what turned out to be the last day he was there, I was arguing with his nurse over the phone because they weren’t keeping his lungs suctioned out, and he was having trouble breathing and would get upset and agitated.  She would not listen to me and hung up on me. I was concerned about his respiratory needs and also frantic about the twisting his body was doing, and nobody seemed to be too concerned about it. When I arrived at the facility that morning, five or six staff members surrounded me.  I tried to explain what my concerns were, and I didn’t feel like anybody was listening or was as concerned as I was. I saw one staff member roll her eyes at me. I finally said, “I just want to take him to the hospital. He just needs to go to the hospital.”

A short while later, the supervisor marched into TJ’s room and very irritatedly told me that they would call an ambulance to transport him to the hospital but that I would have to go by myself with TJ.  It was protocol at this facility to send a nurse with a patient to the hospital, but I assume that because I made them mad and they didn’t feel like he needed to go to the hospital, she was not going to send a nurse with me.  At this point I was crying and bewildered at the condition my son was in and at my inability to get anyone to listen to me, so I said that was fine and was just relieved he was going to the hospital.

When we got to the ER, after seeing the state TJ was in, the ER staff was also very concerned about his condition.  I asked if he could be flown back up to Mayo, and they said, “Yes, that’s where he needs to be because they know him best.”  Because of his trouble breathing–which no one at the rehab facility seemed to be too concerned about–the ER staff put him on a vent, loaded him up on a helicopter, and flew him back up to Mayo that morning.  Although I was relieved to be returning to Mayo where I knew he would get exceptional care, the whole thing was terribly traumatic, and I felt, for the most part, that we were on our own.

After arriving at Mayo, the respiratory therapist suctioned and suctioned and suctioned.  She said he was so full that it was like suctioning a bucket. After suctioning he was OK, and they took him off the vent and turned their attention to his twisting symptoms.

TJ’s senior picture taken in the fall of 2016

Fast forward now to sometime during the year of 2016 when TJ had been home about two years.  One afternoon TJ and I were fighting about doing home therapy. We were always fighting about doing home therapy.  I desperately wanted him to get better and have a life, and I also was concerned about what would happen to him once my body gave out and I couldn’t take care of him anymore.  So I pushed him all the time to do his strengthening exercises at home so that he could hopefully become more independent. He resented it. One day, exasperated, I said to him, “TJ, why will you not do your therapy?!  Why do I have to struggle with you all the time about this?!”

After fussing and crying and throwing a little bit of a tantrum, he finger spelled to me, “Because I was attacked and beat, and I feel hopeless, and I just can’t get motivated to do it!”  I replied, “What?! What are you talking about?” He then went on to tell me that one of the workers at a rehab facility he had been in had abused him. He told me who the man was, and then I began remembering some earlier encounters we had had with this man.

Toward the end of TJ’s stay at a different rehab facility, we were in the process of transitioning TJ to home on a full-time basis.  We were building a room onto our house for him, and it wasn’t quite done yet. He had been there a very long time, and he was miserable and crying all of the time.  At this point in time, his hands were too twisty to finger spell, so I thought his crying was because he was sick of being there and wanted to come home so badly. We had no accessible shower for him at that point, and I couldn’t get him up the stairs to shower him, so the solution I came up with was I would be with him every day of the week during the daylight hours, and he would come home after lunch on Friday and stay all weekend until Sunday evening. All he basically had to do was sleep there alone, and then either I would be there or he would be at home. I thought that was reasonable and would help him get through the short remainder of his stay there while we finished building his room. He still cried and didn’t like it and it frustrated me.

One Sunday evening as I was returning him to the care facility, one of the male workers came out to the van to help me carry in all of his equipment.  When we got in the room, the man went into the bathroom and turned on TJ’s shower. TJ then made a noise I had never heard him make before. It was like a whimper.  I was alerted and my antennas went up. When the man left the room to go back out to the van, I asked TJ, “Has something happened to you, TJ? Is there something wrong?”  He stared at the floor, paused for awhile and seemed to be thinking, and then he slowly moved his feet back and forth which was the signal for “no.” I felt relieved and thought everything was OK and went back to getting him settled in.

The conversation below is the conversation I had with TJ two years later when we were fighting about therapy.  He finger spelled the entire conversation, and it took us a week to write.

Kelly:  How did they find out that you didn’t like Ricky?*
TJ:  I think I started to hate both the DON and Ricky after I had asked that the cameras need to be checked.
Kelly:  How did you communicate that to them?  And who did you tell?
TJ:  The first was my speech therapist, Marcy.*
Kelly:  Did you use your communication device to tell her?
TJ:  Thumbs up.
Kelly:  What did you say?
TJ:  I asked her if she could check the cameras.
Kelly:  What did she say?
TJ:  She said, “I will.”
Kelly:  Do you know if she ever did?
TJ:  No. I don’t know if she ever did.
Kelly:  Did Ricky find out you told Marcy to check the cameras?
TJ:  Yes.
Kelly:  What happened?
TJ:  That was the first time I got beat.
Kelly:  OK. So you didn’t start getting beat until after that.  So why were you telling them to check the cameras? What were you wanting them to see?
TJ:  Him taking my iPad.
Kelly:  Larry* and David* had been taking it up to that time too.  Did Larry and David do anything to you?
TJ:  No.
Kelly:  Can you give me the details of that first beating?
TJ:  No.
Kelly:  Well, what are we going to do then because we have to know what happened? They need this information.
TJ:  It’s mainly because I don’t remember.
Kelly:  Why don’t you remember?
TJ:  Because he hit me.
Kelly:  Where?
TJ:  On the top of my head.
Kelly:  How long after you told Marcy did it happen?
TJ:  That I don’t know.
Kelly:  Rough estimate?
TJ:  I think it was a day or so.
Kelly:  OK. Now describe as much as you can remember about that first time.
TJ:  Harry Potter was playing on TV.  It was after 12 o’clock. All I can remember is a deep voice, dark person coming in my room.  I also remember him saying snitch.
Kelly:  Anything else you can tell me about that?
TJ:  I woke up around 2 o’clock.  I thought this couldn’t happen and I fell back to sleep. I woke up at 7 o’clock the next day.
Kelly:  Tell me about the next assault and anything that happened in between there.
TJ:  I remember this day because it was really cold outside at the time.  Ann*, PT, was being really offish with me and I just wanted to scream at her and say what the heck had happened to me but I know I couldn’t.
Kelly:  Is this significant to you because you were hurting inside and you couldn’t tell anybody and Ann was probably pushing you and you just wanted to cry?
TJ:  Thumbs up.  (Crying.)
Kelly:  Can you tell me about the second attack?
TJ:  This is what happened.  It was a lot like the first time, but he said something about my crying BS.
Kelly:  So everybody knew you were crying then?
TJ:  Thumbs up.  Besides that, everything was the same.
Kelly:  Did he hit you in the head again?
TJ:  Nods.
Kelly:  Did it knock you out or daze you again?
TJ:  Thumbs up.
Kelly:  Same time of day?
TJ:  Thumbs up.
Kelly:  How soon after the first attack did the second attack happen?
TJ:  One month.
Kelly:  Did anything trigger it?
TJ:  I think it was all the crying I did in front of you (pointing to mom).  All of the attacks were pretty much the same. Once I woke up and I remember having trouble breathing.  The third, fourth, and fifth attacks were because I was crying in front of you.
Kelly:  Each time did he knock you out or were you dazed?
TJ:  I remember being dazed four out of the five times.
Kelly:  OK. Talk about what else was happening there that you were upset about.
TJ:  All I can say is you are going to be mad.  One time one of the CNAs came in and pulled the call light out of the room, between 5-10 times.  Another time it was the CNA that dropped the F-bomb while I was showering. Then about eight weeks later the same CNA came into my room and literally had laid down on the floor to pull away my call light because I was in the eagle nest.
Kelly:  Why did they take your call light away?
TJ:  That I don’t know.
Kelly:  Do you think you were hitting it too much?
TJ:  Thumbs up.
Kelly:  Why were you hitting it a lot?
TJ:  Because I needed something.
Kelly:  What kinds of things were you needing that you kept calling and calling about?
TJ:  Being suctioned and bathroom and things.  One time I remember having to go to the bathroom so I hit the call button and I peed and pooped my pants and I had to wait for hours to be changed.
Kelly:  Why did it take so long?
TJ:  I had Liam* and a blonde girl working on my hall and they came in my room, looked at me and left.
Kelly:  Did Ricky say mean things to you?
TJ:  He was extremely mean to me.  If I had an accident he would say something like, “Oh my God!  Why do you always have to piss and [expletive] every [expletive] day?”  That’s all I can remember.
Kelly:  Was he rough with you?
TJ:  Thumbs up.
Kelly:  Was he just angry and mad?
TJ:  Thumbs up.
Kelly:  Was that every time you had an accident he would be like that?
TJ:  Thumbs up.
Kelly:  Were there other people who would get angry too?
TJ:  Thumbs down.
Kelly:  Was Ricky in your room alone when that was going on?
TJ:  Thumbs up.

Before I started recording our conversation, TJ asked, “Mom, do you remember how when you were there, he was always standing outside of my room?”  I had forgotten all about that. When I was there visiting TJ in the evenings, the man was always outside of TJ’s room which was unusual. Nobody ever did that.  I remember wondering what he was doing out there all the time, but because I was so naive, I thought at the time that it was great. Usually I could never find anybody when I needed something, but he was always right there.  I never put it together that it was because he was listening to what TJ was telling me. TJ cried and cried the whole time I was there, and I never knew why, but the man heard it and he knew why. After I left for the night, he would return to TJ’s room and hit him in the head for crying to me.  TJ also told me that he threatened him, told him he knew where he lived and would hurt me and his sisters if he ever told anyone.

After learning all of this, it started making sense why he always wanted his iPad in bed with him when I left for the evening.  It was a big ordeal every night. I couldn’t figure out why he always wanted his iPad because he couldn’t use it. We only had it there so the nurses could play music on it for him.

Travis and I both felt terribly guilty that we didn’t pick up on the fact that something was wrong and that we didn’t take his crying more seriously.  The man terrorized him. We just never dreamed that somebody would do something like this.

There was also a female worker who called him names while he was in the shower.  His trach was not covered when he was in the shower. They just left it wide open, and I never realized they weren’t using a guard until right at the very end of his stay there.  I just assumed they were being safe. I’m guessing what probably happened during the shower was he was getting water down his trach, couldn’t breathe, and started going crazy. The female worker got sick of it and called him a “[expletive] psycho.”  He told on her, and after that incident she was removed from his hallway and was not allowed on his floor again but apparently would later come back and remove his call light if she heard he was using it too much.

I believe the reason why some workers were pulling out his call light was because communication was so difficult and they didn’t want to take the time to figure out what he needed, so they would just walk in the room, turn it off, walk back out, and then he would call them again.  I believe it is actually against the law for patients to not have a call light. Also he was trached, and if the trach came out, he wouldn’t have been able to get a hold of anyone.

TJ also reminded me of a time when I had seen his call light unplugged.  I had forgotten about that as well. When I asked the nurse why his call light was unplugged, the nurse said, “Oh, I don’t know how that happened,” and plugged it back in.  I just thought it was an accident and really didn’t think much more about it. TJ told me a CNA had unplugged it that morning.

There were many good nurses, but TJ was so complicated, and sometimes they didn’t always understand his needs.  Other times I assume they just thought I was an over-the-top, crazy mother and didn’t know what I was talking about.  But one particular time, I was sick and wasn’t able to go to the facility where TJ was. I was worried about him, so my husband went to check on him.  When he walked into the room, TJ was covered in secretions all down the front of him, and he was crying, agitated, and very upset. His nurse came in, and because of his agitation, she was going to give him some medications which would make him drowsy.  Travis told her that the problem was he couldn’t breathe and he needed suctioned. He started suctioning then and an enormous amount of stuff came out of his trach and lungs.

After TJ came home, a social worker visited us once a month.  The first thing she told me when she took on our case was to keep TJ out of the nursing homes and group homes because they were not good.  She said he won’t make it. She went on to tell me that there was a man who was very similar to TJ who was in a nursing home. At night he had a machine that he was connected to because he would stop breathing.  One night they forgot to plug his machine in, and he stopped breathing and died. She said he would have laid there knowing what was happening the whole time and wasn’t able to contact anyone.

For these reasons, even though it was very difficult and at times almost too much, we knew we had to do everything we could to take care of our son at home.  During his time at home, a black cloud that we tried to ignore hung over us. We knew one day our bodies would give out and we wouldn’t be able to take care of him at home anymore, and then what would happen to him?

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As I stated last week, my goal is to raise awareness about the challenges families with special needs or brain injured loved ones are facing.  I believe there are people who care but are unaware of what’s really going on in the brain injury and special needs communities.

Travis, TJ, and I at the Iowa Statehouse speaking at a Press Conference to stop a bill that would cap medical malpractice awards at $250,000

I no longer need to be in the special needs community…..but I cannot leave it.  My eyes were opened when we entered this whole new world that I knew nothing about.  I was shocked to see how poorly families and people with special needs are treated, dismayed that there was no help available, and frustrated because it seemed like many did not care.  In response to the Holy Spirit’s nudging, I felt I needed to do something, anything to help improve the lives of special needs families, so I’ve begun writing about our experiences.

There are all different levels of severity of special needs and brain injured, and not everyone is in the same dire circumstances that we were in.  On one end of the spectrum, some have challenges and frustrations but are able to manage them, for the most part, and maybe just need a few hours of respite every few weeks.  But then on the other end of the spectrum, there are families like us with extreme cases who get no respite and are desperate and feel there is no help available and nowhere to turn.  

This is an enormous problem, and I am just one person.  My hope is that as people become educated about the needs in these communities, more will get on board to help make a difference so that lasting change for the better can occur for these families.

*Names have been changed.

Our Morning Routine

Respite Care
Part 1

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.”

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TJ trying to read a book about an Xbox game

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.

The infamous futon

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.  

TJ at 15 years of age with his nephew Dylan

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.  

TJ signing “I love you”

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….


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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.

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.

A Constant Friend

“A friend loves at all times,
and a brother is born for a time of adversity.”
Proverbs 17:17

Ambiguous Loss.  That is a term you’ve probably never heard before.  What does it mean? In the 1970s Dr. Pauline Boss, a professor emeritus from the University of Minnesota and an educator and researcher, introduced the term “ambiguous loss.”  She describes it in her book Loss, Trauma and Resilience as “an unclear loss that defies closure.” She goes on to say that “ambiguous loss is the most stressful kind of loss. It defies resolution and creates long-term confusion about who is in or out of a particular couple or family.  With death, there is official certification of loss, and mourning rituals allow one to say goodbye. With ambiguous loss, none of these markers exists.”

She did not say that ambiguous loss is the most painful of all losses, because let’s face it, loss is loss and it all hurts.  Ambiguous loss, however, is unique in that it is an “extraordinary stressor — a producer of uncanny anxiety and unending stress that blocks coping and understanding.  It freezes the grief process and defies resolution. It understandably encourages denial of loss. It can lead to immobilization and more crises.” (Boss) Ambiguous loss is loss that is seen in families traumatized by war, terrorism, natural disasters, and chronic illnesses and disabilities.  The brain injured, the stroke victim, the Alzheimer’s patient as well as the kidnapped or imprisoned also fall into this type of category. In my own words, it is hell on earth.

Having a child with a brain injury can be a lonely road.  There are few who understand. Twice I sought help from two different Christian counselors to talk about my grief from watching my son suffer from what I called “living in between life and death.”  He wasn’t dead, although it felt like in some ways he died the day of his surgery, but he wasn’t alive either…..not really alive, just existing. The person who he had once been was gone. It is an excruciatingly painful place to be.  I went to therapy because I wanted to talk to someone who understood, but after two sessions with two different counselors, I left even more frustrated than when I went in. It became very clear to me that unless a counselor has specific training in brain injury grief and loss, they do not understand the uniqueness and complexities of it.  

In an article written in Brain Injury Journey magazine, Janelle Breese Biagioni, RPC, states, “Then we have what I identify as extraordinary grief resulting from a disease such as Alzheimer’s or a catastrophic injury such as a brain injury.  This kind of grief is profound. People must grieve who they were, and the family also grieves the person who is no longer there, albeit physically present.  Sadly, I think society as a whole is only beginning to understand how profound this type of grief is.”

So even if most counselors don’t fully understand it, then how can a friend of a mother of a brain injury victim understand it?

Well, the answer is….they can’t.  During the years my son lived with his brain injury, I heard over and over again how hard it is to be the friend of a person who has experienced this kind of tragedy.  I have seen people struggling not knowing whether they should bring it up or not bring it up. If they do bring it up, they don’t really know what they should say because they fear they may say the wrong thing and cause more hurt.  I believe that is why some do nothing and say nothing and avoid the injured altogether. While it is very understandable why some would react this way, it probably is not the best way to handle it. Handling it this way actually causes the injured more loneliness and pain.  Exiting their life translates to “I don’t care about you” even though that may not be true.

So how do you relate to the mother of a child who now has a brain injury?  I think the first and most important thing to do is to stay in their life even though it’s hard.  It’s not necessary to be there daily or even weekly, but it helps them if you just check in from time to time, like once a month, so they know you care, and it can be something as simple as just sending a text.  I had no shortage of friends in my life while my son was alive, and I am grateful for every one of them. Many checked in on me often, took me to coffee or lunch, or just simply sat on the couch and cried with me.  They were one of God’s many blessings during that time. I knew I was loved and cared about.

The second most important thing when you do have contact with them is don’t judge them or what they talk about.  There were many times when I probably sounded irrational to some. There were times I was stuck in certain areas of the grieving process like anger or the never-ending pursuit of trying to find answers, or the most painful of all, the loss and change in TJ’s social standing.  Although I may have sounded unreasonable, it really was a normal reaction to an abnormal situation. Many times when we don’t understand or haven’t experienced a situation before, we make judgments of others that they’re irrational, frustrating, feeling sorry for themselves, complaining, etc., but in reality these reactions are normal and have to be processed so the one experiencing the trauma can learn to cope with ambiguous loss.

The best thing the friend can do is just listen and say things like, “I’m so sorry this happened to you.  “I can’t imagine how hard this would be.” “I can understand why you would feel that way.” “I just want to be here for you and be a listening ear.”  Part of the healing process for the one suffering is being able to talk about it without being judged for the way they feel. If they’re angry, let them be angry.  If they’re frustrated, let them be frustrated. If they’re sad, let them be sad. Allow the one suffering to feel the way they feel without correcting them. Over time, as they process through their feelings, they will figure out what they need to do differently themselves.  Understand this process can’t be sped up, and there is absolutely nothing you can say that will heal the hurt and make it all better. You are not there to solve the problem; you are just there to be a listener.

My friend Amber did an amazing job at being my friend during the course of TJ’s brain injury.  Once a month for three years she showed up with two Starbucks coffees in hand, one for me and one for her.  During each visit, she sat and talked with me for a couple of hours. She let me talk about my grief, sadness, and my frustrations.  She also shared what was going on in her life which helped me feel connected to the outside world. It couldn’t have been easy for her.  My problems were heavy, chronic, confusing, and long term, but she stayed by me and loved me and truly modeled what being the hands and feet of Jesus looks like.  She was a gift from God and very wise at knowing how to be the friend of a mother of a brain injured son.

What We Believe Determines How We Will Live

I had been a Christian for a long time, but nothing made me doubt God’s word more than burying my son.  Once your child is gone, every inch of your body yearns to be reunited with that child again, and it is all you think about.  Thoughts began to float through my head like, “What if he wasn’t saved and I never see him again?” “What if God really isn’t real and when we die we just die and there is no heaven or hell and I never see my son again?”  Deep in my inner being, I know TJ was saved, and I know that God is real and none of these thoughts are true. I have seen countless evidences of Him throughout my lifetime. He’s laughed with me through the good times, held me in His arms through the hard times, and carried me through the really hard times.  “Why am I struggling so much with this?” I thought to myself. I began praying for God’s help to conquer these relentless thoughts that were causing me to doubt.

At the beginning of this year, I was asked to be in a Bible study with some friends.  It was a read-through-the-Bible-in-a-year study, and I eagerly said yes. We started reading at the very beginning in Genesis.  Shortly thereafter, we came to the story of Joseph, my favorite story in the Bible.

Jacob was Joseph’s father and he had 12 sons.  Joseph was the favorite, and his other brothers were very jealous of him.  One day when Joseph was 17 years old, the brothers decided they had had enough of this spoiled kid, and they plotted to kill him.  Reuben, one of the older brothers, did not want the boy killed and persuaded the other brothers to throw him into a pit. Reuben’s plans were to rescue him from them and take the boy back to their father, but shortly thereafter, a caravan of Ishmaelites was traveling by, and the brothers sold Joseph to them.  

Genesis 37:31-35

“Then they got Joseph’s robe, slaughtered a goat and dipped the robe in the blood.  They took the ornate robe back to their father and said, ‘We found this. Examine it to see whether it is your son’s robe.’

He recognized it and said, ‘It is my son’s robe!  Some ferocious animal has devoured him. Joseph has surely been torn to pieces.’

Then Jacob tore his clothes, put on sackcloth and mourned for his son many days.  All his sons and daughters came to comfort him, but he refused to be comforted. ‘No,’ he said, ‘I will continue to mourn until I join my son in the grave.’  So his father wept for him.”

Meanwhile, Joseph spent the next 13 years as a slave and then as a prisoner, but all the while the Lord was with him and showed him kindness and granted him favor.  After many twists and turns in the story, Joseph was eventually miraculously brought up out of prison by Pharoah and put in charge of the whole land of Egypt. Through another series of events, Joseph and his brothers were eventually reunited and Joseph extended forgiveness to them.  And then the great reunion between father and son took place.

In years past I have always been astounded by the timing of God in this story, by the patience of Joseph and his trust in God through his suffering, and by his amazing forgiveness toward his brothers.  But as I was reading the story this time, I had a thought that I had never had before, “I wonder if Jacob regretted being sad all those years he believed Joseph to be dead? I wonder if he had regrets of not enjoying his life more and not enjoying his other children and grandchildren because of his all-consuming longing to be reunited with Joseph?”  Joseph had been alive the whole time, but it didn’t matter what the truth was. What mattered was what Jacob believed.

I pondered this more, and I then asked myself, “If I believe that my son is dead and in the grave and I will never see him again, then how will I live?”  After thinking about this for awhile, I decided that my answer would be: I will waste my life. I won’t be able to get off the couch most days, and I won’t be effective in winning the hearts of man toward God.  I won’t enjoy my life or the family or friends God has blessed me with, and I will probably one day have many regrets.

I then asked myself, “But if I believe that my son is alive with Christ in heaven like God’s Word says he is and that I will see him again one day, then how will I live?”  My answer: I will continue the work that God has given me to do, knowing that I will receive eternal rewards for my perseverance through suffering. I will have joy and fullness in Christ despite my suffering, and I will enjoy all of the many blessings He has given me on this earth as I eagerly look forward to heaven.

In what area of your life are you having a hard time believing God’s Word?  What we believe determines how we will live.

Hebrews 11:11 “Now faith is confidence in what we hope for and assurance about what we do not see.”

The Sovereignty of God

Hebrews 11:13  “All these people were still living by faith when they died.  They did not receive the things promised; they only saw them and welcomed them from a distance, admitting that they were foreigners and strangers on earth.”

I lead a group at my church for moms of children with special needs.  At the beginning of each meeting, we read a devotional that’s designed to center us on God before we begin sharing our hearts.  Right now we are reading a devotional called Refresh: Spiritual Nourishment for Parents of Children with Special Needs written by Kimberly M. Drew and Jocelyn Green.  After reading the devotional, we talk through discussion questions and anything else that is going on in our lives that only another mother of a child with special needs would understand.  

Our devotional at a recent meeting for me was very insightful.  It was titled “Sovereign Moments.” The story begins with Kimberly sharing her story about how her daughter, Abbey, came into the world.  Because of the traumatic nature of Abbey’s delivery, it resulted in her having lifelong multiple disabilities. The doctor had written in his notes that it was because of “poor maternal effort.”  Kimberly said what he failed to mention was that he was asleep in another room for almost the entire delivery and that right at the end of the delivery, he rushed in, looked at her vitals, and yelled, “Now!”  A few minutes later, Abbey needed to be resuscitated. For many years Kimberly blamed herself while her family and friends blamed the doctor. She later came to accept that God could have intervened at any moment during the birth of her daughter and yet chose not to.  Over time she grew to find comfort in the sovereignty of God.

Kimberly closes her devotional with this profound paragraph:  “At thirty-five weeks pregnant, my dear friend Allison woke up from a nap covered in blood.  She was rushed into an emergency C-section for a second-degree placental abruption. It was my obstetrician who saved her life and her sweet baby’s life.  Mere men make mistakes in one moment and rise to do amazing things in the next. God is sovereign over them all.”

For me, prior to TJ’s injury, when a doctor entered the room, the heavens parted and the angels began to sing.  I thought they were the smartest people on earth and knew all the answers. TJ spent more than a year of his short life in the hospital, and during that time, I began to view doctors very differently.  Although most times I was fascinated by their brilliance, I also at times saw them as imperfect human beings like me who make mistakes, who do not have all the answers, who can’t undo a tragedy, who do not control life and death, and who are limited by only the knowledge God allows them to have.  I began to realize that putting lofty expectations on them was unfair and should be reserved only for God. We knew there had to have been oxygen loss during TJ’s surgery, but his strange presentation after surgery along with an MRI that didn’t match his symptoms were a mystery to doctors, and after years of struggling to find answers, I finally came to believe that if God wanted us to know what happened, He would have given the doctors that knowledge.

Like Kimberly, our son’s brain injury and eventual death was caused by, in our opinion, a doctor’s mistake.  Over time I too have also grown to find comfort in the sovereignty of God and that He also could have intervened at any moment during my son’s surgery and yet chose not to.  Through the years, I’ve started to see the lives that could be won for Christ because of TJ’s powerful story, and I could also see God’s presence everywhere in our lives as He lovingly carried us during our unimaginable trial of suffering.

A friend of mine who is a nurse once told me,“Regarding surgeons, always listen to who the nurses recommend because they see the patients coming out of the OR.”  We chose TJ’s surgeon because he was highly regarded in our community. We had heard nothing but wonderful things about him. He had done a lot of good for a lot of people.  During the years following TJ’s surgery, I’ve seen many shocked faces from medical staff upon learning who TJ’s surgeon had been. I’ve come to the conclusion that this kind of surgical outcome was unusual for him.  Even though my son’s surgery had a devastating result, I would still say his surgeon is a good surgeon. Although I didn’t understand it at the time, looking back I can see the look of pain in the surgeon’s eyes that first week as TJ rapidly declined, and even though it has been a process for me, I now have compassion for him.

I believe there were higher forces at work that fateful surgery day in 2013.  I don’t understand it all, but I do believe God was in control that day. And because of the work that Christ did on the cross for me, I am forgiven, so, therefore, I can be obedient to Him and live a life of forgiveness trusting that He will make all things right in His time.  I believe one day we will all see the far reaching effects TJ’s story has had for growing the kingdom of God. My prayer is that God will extract every ounce of good from TJ’s suffering and will use it for His glory.

What about you?  Where in your life are you having trouble trusting the sovereignty of God?  He says in His Word that He loves you and always has your best interest at heart.  Take a step of faith today and trust Him. He will never fail you.

Dr. Brenda Schiltz

On April 22, 2013, my son TJ at the age of 16 went in for 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 knew Mayo was one of the world’s best hospitals, and upon arriving at Mayo, 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.

Dr. Brenda Schiltz

One of the first doctors I met was Dr. Brenda Schiltz.  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 brain stem 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 just wanted her to tell me that my son was going to be okay and he was going to go to college and get married and have children like I had planned.  But she didn’t do 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 and many ups and downs, TJ started to improve. During evening rounds, I walked into TJ’s room and found Dr. Schiltz throwing a ball back and forth with TJ.  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, so she took me into another room.  She 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 2½ months TJ was getting well 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 know 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. And when the nurses noticed my lackluster efforts, Dr. Schiltz then showed up and had a talk with me.  She said, “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. Schiltz said, “TJ, I don’t want to see you again until you walk through that door.”  I made a mental note of it 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 and many peaks and valleys, we finally made it to rehab and ultimately stayed in rehab.  And then TJ really started to improve. He was now up and 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. Schiltz 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. Schiltz 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. I told her, “You used to make me so mad.” “Why?  What did I do?” she asked. I said, “You told me the truth and I didn’t like it!” She laughed. I then told her, “Many times I would ask you a question, and when I didn’t like your answer, I would walk away muttering to myself, ‘She don’t know everything.’”  With that, she jumped up off her chair and hugged me.

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