It’s been a busy week!
This past Friday was Nate’s one year study visit at NIH. This was follow up for the trial of aricept that he was on for 6 months- from last October until this past April. They will continue to follow him through next April. This meant that we had to go through the full battery of tests…again. All the assessments, 5 paper surveys for me,
a two hour interview, physical exam and tests, and the sleep study. I dread these appointments for weeks. I just hate them. The mornings are not so horrible- it’s nice
to have some one on one time with Nate- in the car, between tests, at
lunch. I consider it a bit of special
time- we both have such jam packed schedules that it’s a rarity to have just
mommy and Natey time, so that is nice.
The sleep study? It’s the bane of
my and Nate’s existence at this point- it SUCKS the first time, and the third
time? Yeah, it really sucks.
I think I may have to call our most recent visit the worst
one to date. It started with in insane
day at work the day before, getting ready to take the day “off” HA! I was working on cases after the kids went to
bed, and that’s really unusual fortunately.
Just one of those days.
The next morning was nothing short of a circus. I mean seriously, cue the music. We actually left just barely in time to get
to NIH- those of you who know me personally know that this is unheard of for
me- I am chronically early. It’s just
me. So OF COURSE we hit ridiculous
traffic going to DC- it’s always ridiculous but on Friday morning it took me 40
minutes just to go down a ramp to get onto a highway (95 for the locals). So I called to let the staff know we would be
late- this appointment involves approximately 10 people- MD’s, PhDs, child
therapists, and research assistants. So
yeah, I felt like crap about that.
Luckily, the DC beltway was better, and I pulled into NIH a mere 15
minutes late- not bad. Now back at our
first visit a year ago, both Nate and I had to bring birth certificates and
social security cards and go through preliminary background checks so that we
could get long term id’s to get on campus.
If you don’t have a long term id, when you pull onto campus you have to
go to a security building, your car is searched, you have to get out of the
car, go inside, present your multiple forms of id and go through a metal
detector. Then they will allow you onto
campus. Anyway, I pull up to swipe my
id, and it beeps. Hmmm that’s odd, I try
again- beep. I called the security guard
over and he told me that my long term id expired on 9/30/14 (it was October 3rd). Fanfreakingtastic. I would be relegated to multiple searches
now. So I had to back out of the
entrance (there are separate entrances for guests) and into the other entrance
to begin a process that usually takes about 30 minutes.
When I pulled up, they asked for my driver’s license and
social security card- no problem. Then
they asked for Nate’s id. Well of course
I didn’t have it, because he had a long term id to get on campus. They started to tell me that they couldn’t
let us through. I threw as much of a
hissy fit as I was brave enough to throw while surrounded by security, metal
detectors, and I am sure video cameras.
I had them call the clinical center to confirm that Nate was in fact the
patient and had to come inside. After
they did this, they were extremely solicitous- they scanned me outside so I
wouldn’t have to get Nate out of the car- scanned him (which just cracks me
up), searched the car, and then provided me with a paper pass to get on
campus. Phew. The security guard told me to just wait for
the car in front of me to pull through and I would be all set. So we sat, and sat. After about 5 minutes I put down my window
and asked the guard if there was an issue, so he went to check. Turns out, the car in front of us had broken
down!!! You just can’t make this stuff up!
So they moved some cones, had me back up (again) and let me in a
different way. At this point I was
laughing like a hyena.
All of that before the actual appointment- not a great sign -
but I told myself that all the bad stuff had now already happened so we were
all set.
And honestly, the appointment was pretty uneventful. Just the usual feelings of despair that come
with confirming for the fifty thousandth time that your child is in fact
profoundly delayed and that thousands of hours of therapy have not, in fact,
helped very much. That pretty well sucks
every time, it’s a given. That being
said, Nate was much more communicative with the evaluators- maybe not in the
way they were hoping for, but his expressions were killing them (and me)- soooo
funny. They brought me in for one of the
evaluations, I was to just sit in the corner and “blend in”. Nate was wrapped around my legs which made
that a tad difficult. At one point they
started calling his name (to see how many times they would have to do it before
he turned to them- this is a risky game- I have gotten as high as 40 when he
really wants to ignore me) they tried 5 times and then asked me to try. I called his name once and he whipped his
head around. They tried expressing
happiness through their facial expressions (to see if he would share in their
enjoyment) and he looked at them like they were on crack, I did the same and
had him laughing within seconds. They
pointed at pretend objects in the distance to see if he would follow their
fingers, he didn’t. They asked me to do
the same- he did nothing- hey you can’t win them all! We did our usual 15 minute “play on demand”
session in the room while everyone sat outside the two sided mirror and
watched. Just for kicks I brought the
book “Brown Bear, Brown Bear” and asked if I could sub it for “I love you
through and through”. I was told that
would go against the standard protocol.
OK, that’s fine. But then I go in
the room and they have replaced the boring pots and pans with ones that hiss
and making boiling sounds- how fair is THAT?
I bet the kids like those better, just like Nate would have liked my
book better. Oh well. We ended up staring at the mirror with him
yelling jump, and me lifting him up to see himself over and over and over
again. Hey, it was reciprocal
interaction.
After this, we had a break for lunch, then did inpatient
registration, then went to the registrar for meal reimbursement and then went
to get our new long term ids. Then we
went to his inpatient room so that the research neurologist could come do
preliminary tests and a physical exam.
Now, anyone who has ever been admitted to the hospital (or has admitted
someone) knows that the process is a flurry of activity- height, weight,
vitals, medical history given to a nurse and then the doctor, menu
explanations, discussion of the plan of care, and last time we were so lucky as
to have the catholic chaplain drop in to discuss the blessings that autism can
bring (yes that was sarcasm). It did
seriously happen though- for a good 40 minutes- and you can’t be rude, because
it’s the chaplain. Anyway, by the time
the doctor came in to examine Nate he had been poked and prodded a bunch
already, and through all of the tests from the morning- he was done. She tried to listen to his heart and lungs
and he repeatedly threw himself on the ground, so I did what I always do at his
pediatrician’s office. I put him on my
lap facing me so she could listen on his back.
And he bit my chest- HARD. This
is about the fourth time he has done this to me recently- he has also done it
to his dad, his teacher and my mother, and a few staff members at Cisco
Center. Usually it revolves around
making him sit on the potty. Here he was
clearly frustrated with all the activity and his lack of control of the
situation- but he broke the skin- on my chest – yow!!!
Of course after that happened the doctor was very firm that
when we placed the EEG electrodes we would need to put him in the papoose
(read: straight jacket) for safety
reasons. I was in no position to argue
since I was bleeding. We were
transferred upstairs to the neuro floor for the lead placement and sleep
study. The lead placement took over an
hour as usual and Nate was pretty much hysterical the whole time- hiccupping
and everything. A few times he almost
fell asleep. After the placement he is
usually so happy because it is done- but this time he had a complete meltdown-
it took a long time to calm him down, but I did, we had dinner and then it was
time for bed. He did great when it came
to falling asleep- he fell asleep a little after 8- it lulled me into a false
sense of security. And then he woke up
at 9:30pm. And stayed up- for a long
time. I didn’t look at my watch but
figured he fell back asleep at around 1 or 1:30- in the morning the sleep study
tech told me it was 3:30. He woke up for the day around 5:30am. Yeah that sucked. He just thrashed all night long- it was the
darned leg leads again. When he goes
through his sleep/wake cycles and moves around he gets really upset when he
feels something on his legs. I
reiterated this to the neurologist on Saturday morning and she assured me that
“next time” we can leave those off.
beautiful face :-)
Which brings me to my dilemma- next time. I just don’t know that it’s worth putting
Nate (and me) through all of this again.
I don’t have to decide until next April, so it’s not really a pressing
issue- but it is a difficult decision.
Is this benefitting Nate at this point?
It is reassuring to have him assessed by their team on a regular basis,
but I don’t feel like they are getting any great data when they don’t get a
long period of sleep from him. And he is
out of it for days afterward. I have to
decide if it’s in his best interest to go back- which I think it probably is
just for the assessments if nothing else- and if I am willing to go through
this all over again. Honestly that part
doesn’t much matter, as it’s just not about me.
The other aspect of the decision is honoring our commitment. We signed consents when we began the study,
and I knew what we were getting ourselves into.
But of course part of the consent states that one can quit the study at
any time. One thing I am not is a
quitter- we have given them ¾ of the data they need for the study. Am I really going to say “nah, never mind”
about that last bit of information we signed up to provide? When I know that they can give us very
detailed, independent developmental assessments that can assist with Nathan’s
transition to his “kindergarten equivalent” next year? It’s not likely. We entered this study for two reasons- first
in the hopes that the actual drug in the trial would help him, and second, to
provide Nathan access to some of the best qualified professionals in the
area. I think that we need to follow through. But I am allowed to whine and say I don’t want
to, right?
We made it home. We
slept all of Saturday afternoon, woke up to eat, and went right back to
bed. We survived. Until next time NIH!
