Come Wednesday, he woke up in the late morning breathing very hard and
with a frequent cough. Coughing is
difficult for Ammon, he really has to put his whole body into it to get a good
clearing cough. By early afternoon the
coughing and breathing had become more extreme and Summer was concerned. A call was made to the cancer clinic at
Primary’s and they said to bring Ammon to the ER immediately. Upon arriving at the ER, Ammon deteriorated
quickly from a respiratory perspective.
His secretions had become more excessive and he wasn’t responding well
to the respiratory treatments they were applying. To put it bluntly, things quickly became
extreme.
A decision was made that Ammon needed to be intubated. This is where they put a tube down your
throat and a respirator breathes for you.
Despite the weeks and months Ammon has spent in the hospital over his
life, even with dire respiratory illnesses, he’s never been intubated. This was something new, and it was our first
indication that this was different, something new was wrong. I left work immediately and drove quickly up
to Primary’s.
The intubation process did not go well.
It took multiple attempts and Ammon continued to regress. Once the tube was placed, Ammon stopped deteriorating,
but he wasn’t improving either. He was
moved up to the PICU, and when I arrived at his room I counted 15 professionals
working on him. Many of them had worked
with Ammon in his previous visits, and many of them know and love him. He holds a special place in many of their
hearts. Dr. Sato came down from oncology
and stayed next to Ammon over the next several hours, monitoring the other professionals
and providing important direction. She
didn’t need to do this, it was after her own long rotation was already complete
and she was actually on her way home when the call came that Ammon had been
admitted. When she finally left later
that night we thanked her for staying with Ammon, and she simply replied, “It’s
not a problem, he makes us all feel so happy.”
(When Dr. Sato came by today to see Ammon I made sure to give her a big
hug and thanked her again).
Going back to when I first arrived at Ammon’s PICU room, the doctors
spent the next hour trying to correct his breathing and other issues. Ammon’s reactions didn’t make sense to
them. They would apply one procedure or
medication with an intended purpose in mind and an unexpected result would
occur. One of Ammon’s doctors simply
remarked, “It’s Ammon” as the explanation.
Ammon keeps them on their toes, sometimes causing the procedural book to
be thrown out, and (whether it’s stated this way or not) moving forward by
faith. After trying multiple settings
and procedures, someone suggested a different approach, and gratefully Ammon
started to stabilize. The lead
respiratory therapist kept saying to the PICU doctors, “I really don’t know why
it’s working, it shouldn’t be working this way, but let’s keep doing it.”
After Ammon had been stabilized for an hour or so, Summer and I were
assured and felt comfortable we could slip down to the cafeteria for a few
minutes to grab a quick dinner. I think
it was around 9 o’clock or so. After we
had purchased our food and made a few phone calls, we were eating and trying to
digest everything that occurred so far tonight.
A nurse we didn’t recognize came rushing into the cafeteria and asked if
we were Ammon’s parents. She said she
had been sent to get us and we needed to come with her to Ammon’s room
immediately. We left our food, bags, and
coats at our table and took the shortcut up to the PICU. In approaching Ammon’s room, I again counted
15 professionals working around him, but they were moving much faster, there
was more commotion, and doctors were talking over each other. The concern on their faces and in the tones
of their voices was immediately apparent, and not reassuring. I looked at the monitors and saw that Ammon’s
heart rate was not normal, and his oxygen sats were in the low 70s, like 70 and
71. I heard the head PICU doctor asking
if the respirator could be turned on any higher, and the lead respiratory
therapist responded that it was already on the highest setting, there was no
more to give. I entered Ammon’s room and
one of his doctor’s looked up and said, “We put the CPR board under him in case
we need to start performing CPR.” She
must have thought I saw the board and knew what it was. CPR?
What was happening? “His heart rhythms
are not good, we don’t know what’s causing it,” she said. It’s Ammon being “tricky” again. They decided to “bag” him, which is a
respiratory procedure, and Ammon’s lead nurse, Nicole, said she would manually
bag him all night if that’s what he needed (thank you Nicole). It was amazing to watch hands moving
everywhere and professionals working around each other, each seeming to be
doing an important task; I really don’t know how they kept everything straight
and how so much was getting performed all at the same time. It was then that I noticed what appeared to
be the crash cart (two crash carts actually) just outside Ammon’s room. I knew what these are for. If CPR doesn’t work they trying shocking your
heart; it’s really the last procedure performed, the last line of defense. If not for all the doctors and being in the
PICU, Ammon might have passed away while we we’re down in the cafeteria.
Minutes passed slowly and quickly, the doctors were baffled, and the
discussions had seemed to take the tone of, “Anyone got any more ideas?” They decided to try turning down the
ventilator machines, continue manually bagging, and hope for the best. It started to work. Ammon’s sats rose to the low 80s and he didn’t
have additional heart issues. Was he
starting to stabilize? During this time,
Dr. Sato pulled us aside and we had a very difficult discussion. We’ve never had the DNR discussion. Summer asked what DNR meant, and
unfortunately I knew the answer to this one.
“Honey, it means do not resuscitate…”
Dr. Sato explained that Ammon had been through so much, and sometimes
when the body just becomes weaker, with times of improvement followed by another
round of gradual decline, that it’s the body’s way of saying, perhaps Ammon’s
way of saying, I have fought the good fight.
I didn’t realize till right now how hard that is to write that.
I looked over at Summer, and then looked over at Ammon in his
room. He is such a special son to
us. He is a miracle. While we we’re speaking with Dr. Sato, Ammon’s
sats had continued to recover. The
procedures were working. Ammon, true to form, was fighting through
it. It was yet another fight he was
going to win. In all of my hospital
experiences, and observing other patients, I’ve never seen such strength of
spirit be matched, time and time again.
Our response to the DNR discussion was clear. Sometimes Ammon might need a little help
taking the last steps to reach the summit of a new medical challenge, and if
that means administering CPR followed by shocking the heart then he will
receive that help. We know it is the
right decision for Ammon, should the unfortunate need ever arise again.
Eventually, Ammon stabilized completely. He’ll likely be asleep for days at least, if
not more than a week. We could be here
for a week or several weeks; Ammon will let us know. Thank you everyone for all you do for Ammon
and our family. Clearly, Coleson and
Brynn have been loved and well cared for in our absence. To put it simply, we are surrounded by
angels. Perhaps the one request we have
is to just keep Ammon in your prayers. As we gave him a priesthood blessing, it was
important for him to know that he is loved, that he does have more to do, and
that he will again experience and be able to express joy and happiness. One other thought. We have two good friends in our neighborhood
that are continuing in their own cancer journeys. One just started within the last week and the
other has been traveling for some time.
Please remember Kathy and Casey in your prayers as well.
We’ll post more soon. Thank you.
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