Summer/Early Fall ,
2004 - REOCCURANCE SUMMARY
J's Nuss bar from the original
correction, was removed two years after placement in June 2004.
Within weeks of bar removal J's chest began to change. By late
summer we requested an appointment with the surgeon to discuss
The CT scan was showing signs that the changes were more significant than the
expected, initial settling of the chest without the bar for support.
The sternum was showing the slight rotation and cartilage over
growth characteristic of J's pe prior to the Nuss. Although he
was borderline, with Haller index of about 2.5, it was expected
that things would continue to worsen.
We discussed the possibility that
at age 16.8, J had not yet completed his growth. The surgeon had
not experienced this with any of the corrections he had completed
to date and wanted to get information from Nuss' office
about it prior to the redo.
His research and discussions with Dr. Nuss' partner revealed that there have
been two other documented cases like J's where the growth continued well into
the late teens. In one of these cases a redo was completed. The doctors documented
the importance of seeking information about genetic family growth patterns.
My husband commented that his own growth continued late into his
teens and may have had genetic implications. Another clue was that we recalled
comments from dentists and orthodontists about our children's pattern of late
development with teeth. As well, J's and
delayed entry into puberty compared to peers.
While none of this was considered
abnormal, all supported the theory that the reoccurance could be attributed
to delayed growth.
After much discussion, it was decided that J was a good candidate for a Nuss
redo. He was asked if he wanted to wait until the Christmas break to have the
redo or go ahead with it immediately. He did not want to wait despite having
to miss school. He was already conscious of the changes from comments about
his look as well as the increasing difficulty to expand his chest
for taking deep breaths during his swim training.
2004 - PRE SURGERY APPOINTMENT
Entry by J's Father - Hi
Folks... here are my notes from today's [pre surgery] meeting
with the surgeon...
The appointment started off with the expected questions : How are you feeling?
Any problems, colds etc? Has anything changed etc? Jay mentioned
that he was starting to feel a constriction when he trains
hard during his intensive evening swim team practices. The
surgeon inspected Jason's chest again, locating the ribs, bottom
of the breast bone and xiphoid process.
asked if he had discussed the surgery and J's recurrence
with Dr. Nuss. He advised that he had spoken for 2+ hours with
Dr. Nuss' partner (not certain of the name). They indicated
that they had seen a similar recurrence with 2 other patients,
and were beginning to make recommendations that surgeons look
for /question a family history of late or long maturation.
He also noted that another subgroup had been identified with
patients who were receiving hormone therapy for some reason.
For these, as well as those with connective tissue disorders
(eg Marfan's) there was now a recommendation to consider leaving
the bar in longer.
talked about what this would mean for J and determined that
it would be in at least 18 -24 months and that the doctor intended
to track his weight and height in order to determine if he
had stopped growing before the bar would be removed. We noted
that with our Health Plan (Kaiser Permanente) if J was not
in full time college then his coverage would end when he turned
19, which would be a problem if the bar had not been removed.
(the options are to continue coverage under a COBRA scheme
- i.e. we pay for continued coverage - or make certain he
is in full time college).
surgeon then asked J what his feelings were regarding the
small indentation that was left when the previous bar was in
(this was low down under the breast bone). J indicated that
this was not a concern for him and if that was there after
this bar was put in he was OK with that.
that it was his intention to place a bar about where the
last one was, just near the bottom of the breast bone area
and then to see what the resulting dip in the xiphoid area
was like and make a judgment call at the time[regarding a 2nd
bar]- keeping in mind J's position on the issue. The concern
he expressed was that normally 2 bars are both under the breastbone
i.e. higher in the chest. In this case it was unusual to put
one so low and he was a little concerned that there might be
some adverse effect on range of motion, comfort etc given how
low it would be. So we will just have to wait and see.
other thing he mentioned is that bar position might have
to be adjusted slightly depending on scarring internally and
if there had been any adherence of the lungs etc to the scar
tissue (if at all). The surgeon also indicated that he might
consider to bend the bar a bit more to slightly over lift the
chest but that this would be determined at the time.
the doctor presented the sheet for my signature indicating
that he had advised of the possible complications etc (bleeding
- about a half cup he estimated), infection (he would be put
on antibiotics immediately after surgery -~5% chance), anesthesia
problems (J has been under 2 times before and is stronger
and fitter now) and that there was a chance that the surgery
would be ineffective (not likely here)
we discussed J's intolerance for Toradol last time and there
was an indication that they might try Motrin or Advil instead
to reduce the nausea problems...
Friday Oct. 1st, 2004 - NUSS REDO
J was scheduled to arrive for
admission at 9:45 a.m. but due to MATRAK issues we were about 1
hour late. Although we were worried, this did not cause any trouble,
in fact there was still a significant wait before surgery.
The surgeon came to greet us and went over the things discussed in during the
pre surgery appointment (since I did not attend). He indicated
the he was planning to try one bar with more of a curve first
and if need be, then place a second bar. He was concerned that
the second bar would have to be down lower and possibly restrict
After the paperwork was completed
we got moved to a private holding room, were J was asked to change
into a hospital gown and prepare for surgery. He was given some
Valium to relax which made him all wacky as before. The nurse took
him away to place the IV into his forearm near the wrist. He had
no trouble with it, being all drugged up.
We spent the next couple of hours
waiting for surgery. J was bored and messed around with the things
in the room finally settling on making a puppet out of a blown
up rubber glove. That kept him going for quite a while then he
got kind of restless and very hungry. Some craving for fries of
By around 2:00 p.m.
the Valium was starting to ware off and he was able to have
intelligent conversations with the surgery nurse, the anesthesiologist
and the surgeon.
He was asked if he was willing to stay awake for the epidural to be placed.
They thought it would be more accurate even if it was painful.
He agreed. A quick hug and they took him away. The surgeon
stayed behind to reassure me and promised to call with progress
reports. He also agreed to take our camera to get some pictures
for the website.
I settled at the waiting area of the hospital with some food and a few
mags to keep my mind from worrying. At 3:30p.m. I received a call
from the nurse that they have finished the preparations
and were about to begin the surgery. At around 6:00p.m. I got
another call to say that they were closing up. Around 7:00p.m.
I started to worry that I had not been called into recovery.
At 7:30p.m. the messenger came to tell me to proceed to the recovery
room to see J.
Anesthesiology: [from the recount
of the anesthesiologist and J] Upon arrival to OR the anesthesiologist
attempted to place the epidural. Apparently J's EKG went weird
during the first attempt which he thought might have been attributable
to him panicking but thought to keep an eye on it in case he has
similar episodes in the future. The doctors decided to wait for
things to calm before attempting to place the epidural again, this
time with success. J said it was painful and he panicked. When
it was first placed he said he felt numb in the thighs, weirdness
in the chest and nauseated. They let him lie on his side and this
time it went well. He of course doesn't't recall anything else
J was still out when I entered
the recovery room. He was all bundled up and looking comfortable
as the staff completed the post op paperwork. The surgeon showed
me the x-rays of the bar, gave me a copy of images captured by
the thoracoscopy and returned my camera with some footage from
the surgery. After a while I spoke to J and he responded but did
not want to open his eyes. He was experiencing pain around the
shoulders which the doctor said was attributable to air pockets
at the top of the lungs. He had no pain at all in the chest area,
so the epidural was working well.
Later he began to feel nauseated
and threatened to throw up. They gave him some medication for that.
About an hour later they felt that he was stable enough to transition
to the ward.oddly enough
we ended up in the same room that he was in a couple
of years ago when he first had the Nuss correction.
Upon arrival to the ward J was
asked to transfer beds. He found this quite difficult. The pain
around the shoulders was bothering him but not enough to take extra
pain medication. So he proceeded to settle for the night with just
the epidural. Over the next few hours they continued to monitor
his vital signs, pain level and did blood works to check his blood
count. (monitoring for possible infection). We was also receiving
antibiotics, IV fluids and had nasal oxygen tubes for comfort
and to help rid the oxygen pockets at the top of the lungs (causing
the shoulder pain).
Over all the night went well with
good rest and pain levels maintained around 3-4 with just the
Saturday Oct. 2nd, 2004
They took out the urinal catheter
and we got some clothes on J, brought from home. J was told that
he had to get up by 9:00a.m. and walk around a bit. He managed
this quite well not being pumped full of pain killers, he was motivated.
He decided that he also wanted to drink some juice and maybe even
eat later. Unfortunately, all the juice came back up just when
the anesthesiologist was visiting. They gave him some medication
through IV to help cope with the nausea and some itching
he was experiencing around the abdomen area. The doctor thought
that he was likely nauseated from the narcotics in the epidural
but that the medicine would help to counteract that. Unfortunately
the medicine made his sleepy and unmotivated to do much of
Throughout the day J got up and
walked a few laps in the corridor. He didn't
have much of an appetite but managed to eat a bit. He slept a lot and
watched TV. The surgeon came by later to check him, everything
was in order. They continued the antibiotics but he did not
need any more pain medication or anti nausea medication. The
pain in the shoulders for the pockets of air diminished but
he had to continue to wear the oxygen nose tubs and pulse monitor.
The night was a bit restless with
nurses frequently waking J up to check on him. He also got a roommate
during the early hours and there was a lot of commotion that made
Sun. Oct. 3rd, 2004
J woke in good spirits with some
humor. Ate a bit of food, walked around and did some light grooming.
The anesthesiologist came to check on him early. He was more or
less indicating that he would not return which we interpreted as
the surgeon's intention to discontinue
to epidural soon. The day before the doctor commented that
he did not intend to keep J on epidural for the entire hospital
stay. The surgeon said he preferred to oversee the effects
of the transition from the epidural to pain meds while J was
still in the hospital.
Midmorning the surgeon called to
see how J was doing. He said he would come by and assess him later
in the day. The day continued with some localized pain
by the stitches on the left side but no breakthrough medication
was required. The epidural kept things under control. J also had
some slight nausea in the afternoon and for that the
nurse gave him some medication. Later he was able to eat a couple
of slices of pizza and after a bit of a walk he began
to settle for the night.
The surgeon dropped by around 9:00
p.m. to check on J and to discuss the plan for the transition and
release. He said that they would discontinue the epidural in the
morning and transition him to oral pain medication. He indicated
that if all went well, J could be released..the
night was quiet with good rest.
Mon. Oct. 4th, 2004
J woke up irritable and all worried
about the transition. He predicted from his prior experience that
he would be in for a rough day. An intern visited and removed the
bandages from the cuts, leaving only the tape that holds the cut
together. The nurse gave J 800 mg of Motrin around 7:15a.m. and
made plans to discontinue to epidural about one hour later.
At around 8:30 a.m. the nurse removed
the epidural. It was not in very deep and came out easily. J changed
and walked around freely now without being attached
to the medical caddie. Later the nurse offered some Vicatin
and J decided to take it with his pain level
now up to about 5-6 (prior pain level with the epidural was about
3-4). The medicine made him sleepy.
The afternoon continued much the
same with Motrin and Vicatin for the break though pain. The doctor
called to check on things and said he would be around later to
arrange for the release.
The family arrived around 5:30
to collect J and the surgeon was paged to attend to the release.
J was given prescriptions for both the Vicatin and Motrin and instructed
about the recovery restrictions (washing with mild soap, no heavy
The 2 hour ride home was uneventful
and much to the relief of J, without nausea....he settled on the
couch for the night with another dose of Motrin.