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 where I fell short in
the “being present for Mary” department.
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. A pulmonologist typically follows kids on vents and 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.
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 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!
Jack made it through the entire summer before we found ourselves back in the PICU. This time for reasons other than
respiratory.
Stay tuned.
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.
