Thursday, May 29, 2014

Jack's Journey - The Early Years Part III


After three months in the Pediatric Intensive Care Unit (PICU) and a third failed extubation, I resigned myself to the fact that the only way Jack was ever going to get home was with a trach. Shortly after they reintubated Jack, I conceded and said “okay” to the trach. Fearing I might change my mind, the PICU staff couldn’t get the consent prepared fast enough. Later in the day, I saw Jack’s cardiothoracic surgeon in the hallway and when I told him I signed the damn consent, he just smiled.

Surgery for the trach was several days later. After Jack came out of surgery, I was standing at his bedside just trying to take it all in when one of the PICU fellows came over. I commented to her that I’m sure they were glad that I finally agreed to the trach. Her response is something that I’ll never forget. She said, “You haven’t made one wrong decision regarding Jack.” It meant a lot to me that she understood how difficult a decision it was for me to agree to the trach and that she was compassionate enough to validate my decision-making process. Although I never saw her again, I still remember her name after all these years. 

day of trach surgery


The day of Jack’s trach surgery was also the day of Mary’s kindergarten graduation. Jack was out of surgery about an hour before I had to leave to get to Mary’s school. I didn’t have time to dwell on all that had transpired that day because I had to suck it up, put on my happy face and do my best to be present for Mary. I’m sure it was the first of many times after Jack was born when I fell short in the “being present for Mary” department.

 my beautiful kindergarten graduate



Jack remained in the PICU following his trach surgery. We spent the next few weeks mostly learning how to suction him. We had to do at least one trach change before we could take him home, which I eventually did, although it’s not something that I have any recollection of. The PICU intensivist asked whether I wanted to do an overnight in the hospital with Jack before we took him home. My answer was an unequivocal “No!” I was sick of hospitals and the last thing I wanted to do was spend the night in one. I knew that Jack would have nursing at home, so I didn’t feel compelled to participate in a trial run on my own. Thankfully, they never pushed the issue with me.

Because Jack was coming home on a vent, someone had to manage him and his vent after he left the hospital. At St. Louis Children’s, a pulmonologist typically follows kids on vents.  I was asked who I wanted to follow Jack.  Over the course of the many months that Jack was in the PICU, I had encountered all of the pulmonology attendings and there wasn’t one that I particularly cared for and there were a few I flat out didn’t like.  My answer to the question of which pulmonologist did I want to follow Jack was “none of them”. Now what? I was given the name of a pulmonologist who managed a lot of vent kids, but she worked out of a different hospital.  I called her office and was told she wasn’t taking any new patients. Strike two. Apparently, the PICU staff knew I was serious when I said I didn’t want any of their pulmonologists to follow Jack because one morning, one of the PICU intensivists came up to me and said that he would follow Jack on the vent if I wanted him to. He told me that he would enlist one of the PICU fellows and together they would manage Jack’s vent. It was unconventional, but I jumped at the offer. To this day, I don’t know why this particular intensivist offered to manage Jack’s vent, but I can tell you that fifteen years later, this same physician spoke at Jack’s funeral.

Jack’s remaining days in the PICU were spent weaning him off the vent during the day, re-introducing him to the bottle now that there wasn’t a tube down his throat, and sessions with physical and occupational therapy.

hospital PT

On the home front, we worked on getting nursing set up and all his durable medical equipment and supplies ordered and delivered. The day the home (portable) ventilator was delivered to the house, I had to be there so that the respiratory therapist with our equipment company could give me an orientation on the workings of the vent. I remember trying to listen to the guy with tears rolling down my face. I so did not want to do this! I don’t think I heard much of what he had to say.  

The week before Jack’s discharge, a woman showed up at Jack’s bedside in the PICU and introduced herself as the nurse manger for the agency that would be providing nursing care for Jack after his discharge. I was so overwhelmed with the fact that my kid had a trach and was hooked to a machine that I didn’t really pay much attention to what she had to say. I think I just stared at her the whole time with a shell-shocked look on my face. My past experience with nursing when Jack was discharged with only CPAP was not a positive one, but I knew this time around, I could not go it alone.

Whether I was ready or not, Jack’s discharge date was scheduled for Tuesday, June 8, 1999. I booked flights for me to fly the girls out to Phoenix the weekend before Jack was to come home. I thought it would be easier if the girls weren’t underfoot while we tried to adjust to the insanity that was about to take over our house. A few days before we were to fly to Phoenix, I was feeding Jack his bottle and I noticed that there was formula leaking out around his trach. I pointed it out to the nurses, a dye test was ordered and sure enough, Jack was aspirating his formula. Knowing that Jack’s discharge date was less than a week away, they scheduled Jack for g-tube surgery immediately. I was in Phoenix the day of the surgery and it was the only time that I wasn’t with Jack for surgery or a procedure.

Discharge day arrived and the mood in the PICU was almost party-like. I’m not sure if they were happy that Jack was finally going home or if they were just glad to finally be rid of me! Pictures were taken and notes were written in a memory book.  

 discharge day

one of Jack's primary nurses came in on her day off to say good-bye

sporting the hat given to him by Dr. Garcia - the PICU fellow who 
was going to follow Jack on the vent at home

Jack and Dr. Garcia


We loaded Jack and several carts full of his stuff in the car and drove away from what had been Jack and my home for most of the last six months. Jack was discharged on trach collar only. No ventilator (or nurse) accompanied us in the car on the way home. We arrived to an empty house with a ventilator that I had no idea how to use sitting on a cart in our living room next to Jack’s crib.

the car ride home


About an hour after we arrived home with this child we didn’t have any clue what to do with, the same nurse who introduced herself at the hospital a few weeks prior, knocked on my door. She took one look at Jack and knew he was having trouble breathing. I, on the other hand, was clueless. She hooked him up to the ventilator and the pulse-ox. I, again - clueless. 

Jack hooked up to his "portable" ventilator and pulse-ox. 
Can you say "overwhelming"?

The nurse stayed until later that evening when another nurse showed up to take over for her. The night nurse was confident, talkative and very much “in charge”. She also happened to be the owner of the nursing agency. She was a former Cardiac PICU nurse at St. Louis Children’s Hospital who decided to open her own nursing agency. She was smart, funny and a bit manic and she and I immediately clicked. She worked almost all my night shifts during Jack’s first month home and I often stayed up into the wee hours of the morning just talking with her. All the nurses who worked Jack’s case were an invaluable source of training, information and support to me.

Jack and his nurse Holly

The first summer home with Jack was a huge learning curve, but I eventually became comfortable with the vent, the trach, the pulse-ox, the g-tube and all things Jack. There were many emails and phone calls exchanged with the PICU intensivist and fellow who were following Jack on his vent. I've saved almost all of the emails between Jack’s doctors and me over the last fifteen years, including the first email I sent to the PICU intensivist with an update on Jack. His response:

Thanks for the update. I’m glad he’s doing well overall. Of course babies change and events happen, but when we send home an infant on a ventilator and he/she is able to stay home for the first few weeks, ie, they don’t need to be readmitted for some emergency right away, we feel this is a good sign. Go Jack go!

 our first summer home with Jack pics





Jack made it through the entire summer before we found ourselves back in the PICU. This time for reasons other than respiratory.  

Stay tuned.

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I realize these early years posts are ridiculously detailed and, therefore, long. But, the fact is I remember so many minute details of much of Jack's life. I guess that's why we were so connected. I think the further out we get from Jack's first year, the less detail I'll have to share. In the meantime, bear with me and thanks for reading. 

2 comments:

ssouth said...

I just completed the CMD trach survey and was surprised at how fuzzy those early details are. This inspires me to go back and dig through my journals one day. LOL at the portable ventilator. It's good to see some things are improving in the trach world. It's a wonder you ever left the house. Thanks for continuing to tell your story.

Susan said...

I don't know that I've seen old pictures of Mary. I think of her as always having been a young lady. She looks to be about Evie's age when Ainsley was born. They really were practically babies themselves when you look back. To grow up in the shadow of a sibling with special needs, I'm sure it's had it's effect. Especially during those very difficult early years. I hope you have been able to spend some extra time with your other beautiful children while you grieve the loss of Jack. I am always glad to read your posts. You are in my thoughts often. Much love as you transition to the next phase of your journey. XOXO.