Background
Beginning in
October, Chloe began having episodes at night where she her oxygen saturations
would drop significantly and she would have difficulty breathing. I tried a number of things to fix this but
ultimately, her pulmonologist advised that she should begin wearing a bipap
mask every night. The bipap machine
provides a constant lower pressure to keep her airway open and a higher
pressure each time she inhales to improve her lung capacity and the amount of
air she takes in. This has been a very
difficult adjustment for her. Many
adults give up on their CPAP and bipap therapies because they are unbearable. It was eventually agreed that Chloe needed to
come to the sleep lab to have her bipap pressure settings calibrated to provide
her adequate support but not overwhelm her.
This study is called a Titration Study.
Chloe has had multiple regular sleep studies in the past, all of which
indicated that she has very minor sleep apnea; nothing requiring pressure
therapy.
Her
pulmonologist ordered the Titration Study and we were scheduled for February 14
at a TCH satellite office. The day prior
to the study, the location called me to confirm. We discussed some discrepancy with the study
orders. The sleep dept, which reviews
the study order from pulmonary, had changed the type of study to a regular
study. Since this was incorrect, the
scheduler promised to contact the sleep dept and double check the type of study so that we did not make a trip
for a study that was incorrect. The day
of the study, the scheduler called me and informed me that the order had been
corrected and it would indeed be a Titration study.
The Study
We arrived
around 6:30pm and were taken back around 7:00.
After some preliminaries, the technician went over the study order with
me. The order she had was the old,
incorrect one. She had no knowledge that
it had been changed. After some argument,
she agreed to call the sleep physician on call to check the type of study but
insisted that if I wanted to get the titration study, we would first have to go
through this regular study. Stuck in a
position of not knowing who to believe and not being able to contact anyone
about it, I agreed that she should wire up Chloe with all the sensors so that
Chloe could get to sleep, then the tech would make the phone call. (My other
option being to pack up and go home).
Because the
order the tech had was for a regular, diagnostic study, she was not permitted
to put any kind of mask and pressure support on Chloe. Since Chloe has been sleeping with pressure
support for more than two months, this
did cause me some concern, and I was sure she would have a distressing
episode. The order stated that if Chloe
met certain Apnea criteria after several hours of study, she would be set up on
CPAP.
At 9:00,
Chloe’s setup was complete and the tech left the room to call the on call physician
and the scheduler who had told me the order was corrected. The tech did not return.
Confident
that Chloe would at least qualify for the cpap and that collection of EEG data
was important, I did not call the tech back in, assuming that she had decided
not to wake me. I was so angry at the
entire situation, not getting the study I had been promised by so many people,
that sleep was far from possible.
At 1:00,
Chloe had her typical desaturation episode and labored breathing. As agreed earlier, we let her go for awhile
to collect data on the episode. Thirty
minutes later (29 minutes longer than I would wait at home), they put her on
some oxygen. She had not qualified for
the cpap. (In hindsight this is not
surprising, since she doesn’t really have sleep apnea). Over the next hour or so, the tech came in
multiples times to increase the oxygen supply.
Eventually it leveled out at 4 liters per minute, twice what I ever have
to give her at home. Her breathing
continued to be labored. Another hour
later, my concern growing that more sophisticated action was needed, I again
asked the tech about pressure support.
She said she was not authorized to do that.
Around 3:00,
I paged the pulmonologist on call at the hospital and (briefly) told her our
story. She recommended that enough data
had already been collected and that I should abort the study and either take
Chloe home or to the ER. When I informed
the tech that I was ready to leave, she said she had to call the on call sleep
dr and tell him. So I had to wait for
that. The tech came in and said the dr
wanted to talk to me. After ten minutes
of arguing, he finally understood that Chloe is on bipap at home, every night
all night, and that this situation was not what she was used to and was more
than she could tolerate. I told him that
“I am concerned that if this situation continues, she will become so fatigued
with the act of breathing that I will have to take her to the ER and she might
be put on a ventilator to help her breathe.”
He asked to speak to the tech. I
went back into the room to pack up some more and could hear the tech arguing
with the dr that Chloe “did not meet the cpap criteria”.
I’m in the
room, as packed as I could be, waiting for the tech to come unhook the million
wires, when she enters the room with a
bipap mask and says we’re going to put her on bipap. It was 4:00.
By this time Chloe had been in some distress for three hours. I hoped that the mask would calm her distress
enough that I would feel safer taking her in the car by myself. Forty minutes later, she had not improved. I told the tech we were finished and this
study was over. Again, she had to call
the dr but this time there was no more fighting.
By the time
Chloe was completely disconnected and in her wheelchair ready to go, it was
5:30. I put her in the car, connected her to the oxygen tank I had brought for
back up. Almost immediately, her
distress improved and I was confident that I could manage her at home and that
an ER trip wasn’t necessary. At home,
Chloe was fatigued both physically and respiratorily, but much more
comfortable.
The Aftermath
In summary,
this was not the study we were promised, not the study that we needed. At no time did we calibrate bipap settings,
so we made no progress in getting Chloe the help she needs. We wasted the night and caused Chloe A LOT of
unnecessary discomfort. I probably
should have aborted in the beginning or at least much earlier after the episode
began, but I made the best decisions I could.
A lot of people lied to me over the course of this adventure.
On Friday,
there were many angry phone calls by me, many apologies by the sleep and
pulmonary depts but no sufficient explanations.
Since she still needs the bipap titration, I felt I had no choice but to
agree to another go round, this time with a lot more confirmation that it would
be as expected. We are scheduled for the
study on Feb. 21. This time I’ll be more
dragon mom and if it’s not right, we are going home right away.
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