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Nuss Redol Journal

Late 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 possible reoccurance. 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 his brother's 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.

Thursday, Sept. 30th, 2004 - PRE SURGERY APPOINTMENT

Journal 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.

We 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.

We 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).

The 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.

The surgeon indicated 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.

One 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.

Finally 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)

Finally 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 SURGERY

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 movement.

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 all things.

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 beyond that.

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 epidural.

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 anything.

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 sleeping difficult.

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 lifting, etc.)

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.