Thoracic Institute
Titanium Rib Program

Frequently Asked Questions

ABOUT THE EVALUATION PROCESS

Q. Can I do any of the evaluation testing prior to coming for the visit?

A. No, we do all radiology testing at our facility-there is a protocol that must be followed.  Since this program has been in existence for over 20 years, our facility is very familiar with the testing and procedures that need to be done.

Q. When do you meet to discuss my child after the evaluation?

A. Our multi-specialty team meets once, occasionally twice, a month to discuss the children that have been evaluated.

Q. If my child is accepted, how soon after the evaluation before surgery is scheduled?

A. This will depend on whether or not additional testing and/or recommendations are required prior to the titanium rib implant surgery.  If a child is accepted and there are no additional testing and/or recommendations, the waiting period before surgery is 4-6 months.  If a child is accepted and additional testing and/or recommendations are requested, the wait time will vary.  If the additional testing and/or recommendations are not completed within a 6-month period, new AP (front view) and lateral (side view) x-rays will need to be mailed to our office for review since your child’s condition may have changed within those 6 months.  If required testing and/or recommendations are not completed within one year, the patient will need to be re-evaluated prior to implant surgery.

Q. Why does my child need to have a MRI of the entire spine done before surgery?

A. Every child accepted into the program is required to have a MRI of the entire spine to rule out spinal cord abnormalities.  If your child has had a MRI of the entire spine (lumbar spine, cervical spine, and thoracic spine) done in the past, you should obtain a copy of the report and forward it to our office or have the hospital/doctor’s office forward it for you.  If the MRI is normal, our office will proceed with scheduling the implant surgery.   

Q. What if the MRI is abnormal?

A. If the MRI is abnormal, you will need to have the MRI report and the MRI films sent to our office for review by our pediatric neurosurgeons.  Our team of physicians will review the report and films and will offer their recommendation in regard to whether or not your child will need spinal cord surgery before titanium rib implant surgery.  This review is done to ensure that the titanium rib implant surgery will not cause any spinal cord injuries to the child.

ABOUT SURGERY

Q. Once we have an evaluation and/or surgery date, should I notify my insurance company?

A. No, we will contact your insurance and send a pre-authorization letter; if our office has a difficult time obtaining authorization, we will contact you.

Q. If I live out of town or state, does the MRI have to be done in Texas?

A. No—you can have the MRI done in your home town.  If you require an order from our surgeons, notify our office and provide the name and fax # to your doctor and we will fax the order to him/her.

Q. Prior to surgery, do I need a referral from my PCP?

A. Only if your insurance company requires it.  When you fill out the referral form, please make sure all names and phone numbers to your child’s doctors are complete and correct.

Q. Is there any sort of paperwork we should bring?  Reports? Prescription lists and/or prescriptions?  Shot records?  Notes from regular physicians, etc.?

A. Please bring a list of all the medication your child is currently taking.  If your child is on any type of ventilator assistance, you will need to bring the actual equipment.

If your child has “specialized” formula—please email/call our office ahead of time, so we can send it to Dietary.   If your child has been sick, runny nose, etc, the week prior to surgery— we will need a medical clearance from the pediatrician or other family doctor. Please call our office if your child has been sick for any reason.  It is vitally important that your child be as healthy as possibly pre-operatively.

Q. What if my child does not gain weight on their own?

A. Your child would not be the first to have this problem. If you have tried everything to help your child gain weight, we recommend extra feedings, supplemental formula, etc.  The final recommendation is to have a G-tube (gastrostomy tube) inserted; they will then be able to receive overnight feedings of supplemental formula.  You should start to see a steady increase in weight gain with this option.

Q. Why is it so important for my child to gain weight?

A. When the titanium rib device is inserted, it expands the chest wall or helps to straighten the spine.  The child must have adequate tissue or muscle to cover the device.  If a child is too thin and there is not enough tissue/muscle over the device, over time, the skin will wear and rub on the device and cause skin sloughing.  Patients with Jeunes Syndrome are at major risk for skin breakdown, as the device is curved and balloons out the child’s chest; therefore making it harder to have adequate coverage over the device.

In many patients with chronic skin sloughing problems; tissue expanders are implanted to assist with stretching the skin; this is done by a plastic surgeon.  Our surgeons are experienced in removing these tissue expanders prior to rib surgery.

Q. What happens at a pre-op appointment?

A. The patient will have x-rays, CT scan, echo, ekg, blood work, CBG’s and a VQ scan completed as well as be evaluated by the anesthesiologist.

Q. How long does the pre-op appointment take?

A. It is difficult to determine an exact amount of time, but it should take several hours to complete, which will include the visit from the anesthesiologist.

Q. Can my child eat normally and have his/her normal medicines/vitamins before and during the pre-op appointment?

A. IF your does not have to be sedated for the CT scan, they can eat/drink—the scan does not take long, so if they will cooperate and lie still/down for 5 minutes, they should be ok. IF sedation is required—do NOT give them anything to eat/drink by mouth or GT after 2am.

Q. What could cause the doctors concern enough to postpone or even cancel surgery?

A. IF a child has been sick, is sick or if the child does not have adequate soft tissue coverage to cover the devices and skin sloughing would surely occur then the surgeon may postpone or cancel surgery.

Q. How could we avoid those problems?

A. For 2 weeks before the scheduled surgery date, we suggest keeping your child at home, away from crowds (even church). If anyone is ill, has a cold, etc., please keep them away from your child.

Q. How will the doctors decide which side to put the implant in first?

A. This will vary. The surgeons will review the CT scan, x-rays, VQ scan, etc. to make this decision. The VQ scan is a test that measures the amount of oxygen being circulated in the lungs—the lung with the less amount of oxygen circulating is usually the side implanted first.

Q. Should we bathe our child with antibacterial soap the evening or morning before the surgery?

A. At the pre-op visit, you will be given a special soap to bathe your child with the night before and they will also be washed in the operating room prior to surgery.

Q. How long before the surgery should we stop giving him/her formula and/or medicines?

A. This will be covered with you by the program nurse.  Your child can have their regular diet until midnight and ONLY clear liquids until 4am.  After 4am, your child should not be given anything to eat/drink.

Q. Can we stay with our child until she falls asleep before surgery?

A. This decision will be made by the anesthesiologist.  He/she will talk to you about it when you meet.

Q. Where will we wait during the surgery?

A. There are two lobbys available to family members who have a loved one in surgery; one is a quiet room while the other has a television.  These are located down the hall from the operating room. You will be directed to these rooms by one of the operating room technicians (folks in purple scrubs).  There is a waiting room down the hall from the OR.

Q. Can you give us a simple step by step procedure of what the surgeons will do during the surgery?  For instance, how many incisions, will they cut her ribs, etc.

A. One large thoracotomy incision- a half-moon shape, from the top of the shoulder blade to the bottom.  For Jeunes patients, they will cut the ribs down the middle and then attach a C-shaped titanium rib device to balloon out the chest.  Different types of syndromes call for different rib devices, so the incisions are different for each child.  Please feel free to ask the nurse or the surgeon prior to surgery about the procedure planned.

Q. How long does the implant surgery normally take?

A. The implant surgery normally takes 3-4 hours.

Q. Will we be updated periodically during the surgery?

A. Yes.  Someone will inform you about the start time and will give you updates to include when the device has been implanted, when x-rays are taken.  After the surgery, the surgeons will come out to speak with you and will show you the pre-implant x-rays as well as the post-implant x-rays to show you the difference, if applicable.  Please make sure and check in with the volunteer in the OR lobby.

DURING THE HOSPITAL STAY

Q. Can I stay with my child in the hospital?

A. YES—the Surgical Intensive Care Unit (SICU) and the 6th floor post-operative unit all have parent beds available. The SICU does not have shower accommodations, but you can shower on the 6th floor. One parent or adult over age 18 is allowed to stay overnight.

Q. What if my stay is longer than anticipated, is there a place to wash clothes?

A. The Child Life department have washer/dryers available on the 5th floor; ask for detergent.

Q. Can I hold my child after surgery?

A. Not while they are intubated in the ICU—they will be sedated at this point, once they are off of the ventilator, you may hold your child.  The nurses will assist with picking up and placing in your lap, remember they will still have drains and tubes attached that require extra care with movement.  After surgery- do not lift your child under arms; rather lift by placing an arm behind the shoulder and knees, and scooping them up.
If you lift under the arms, this puts pressure on the incision; the incisions take about 6 weeks to completely heal; after the 6 week period, you may lift under the arms.

Q. Can I stay with my child in the hospital through out their stay?

A. Yes, there are beds/pull out chairs in the ICU and post op floor.  We encourage parents to go to the hotel, etc the first post-op night, as your child will be sedated and have nurses and doctors at his bedside. Once your child is off the ventilator, they are going to want their parents at the bedside, so we encourage parents to get rest while they can.

Q. Can I bring favorite toys and blankets for my child’s crib for after the surgery?

A. Absolutely—bring movies, book, etc—anything that they enjoy at home.

Q. I realize my child will be intubated and on a ventilator, have an IV, etc.  Will he/she have other tubes and be connected to other machines that we may not realize?

A. He/she will have a foley catheter to drain urine, maybe an Naso gastric tube in his/her nose, and most likely he/she will have a drainage tube attached to his/her g-tube to keep the secretions out of the stomach.  He/she will have a chest tube or other type of tube to drain excess fluid out of the chest, an arterial line to monitor blood pressure, etc.  If you have questions about any of the tubes, please do not hesitate to ask your nurse.

Q. What should we expect as far as bruising, incisions, stiches, bandages, drain tubes, etc.?

A. Your child may have some bruising along the incision line, but that will fade.

Q. What is done for pain management, especially for someone so young?

A. Your child will be on IV sedation (anesthesia, will go over this), an I-flow pain ball, a non narcotic inserted in the incision to help with pain management (the Thoracic Institute nurse will show you one when you are here); every child is different, so they adjust accordingly.

Q. Will he/she be able to have his/her regularly prescribed medicines and vitamins?

A. Yes, AFTER he/she is off the ventilator and tolerating G-tube/oral feedings. If you child is on any type of bowel treatment at home, continue the regimen up to the pre-op day.

Q. About how long will he/she be intubated and on a ventilator?

A. That is up to him/her--- the first night, he/she will be completely sedated, they start weaning the child off the ventilator and lessening the sedation to get him/her to breath on his/her own. This can take 1-3 or more days. It is more difficult for Jeunes patients to be weaned off the ventilator.

Q. How do the doctors decide he/she is ready to come off the ventilator?

A. He/she may have a few trials of coming off- if he/she is extubated and his/her carbon dioxide levels increase he/she may have to be re-intubated—this all depends on the child.

Q. On what will the doctors base their decision in regards to releasing us to go home?

A. The doctors will base this decision on the following: taking regular diet well, pain controlled by oral medication, peeing/pooping well, ambulating and close monitoring of incision. Juenes patients are a high risk of skin slough over the device.

Q. Do we have to stay in San Antonio for a few days after we are discharged?

A. No. Some families choose to stay in town for a couple of days to see how their child will do. Most families fly or drive home the day they are released.

Q. What type of clothing should I bring for the stay and trip home that will be most comfortable for after the surgery?

A. Something simple—you do not want anything that you will have to pull over the head. Some little girls wear the sun dresses that button at the shoulder.

Q. What will need to be done for follow up care?  Ex. Removal of stitches, Changing of bandages, monitoring of O2 sats?

A. He/she will have steri-strips over the incision that will come off on their own. This information will be covered during the final discharge from the hospital by the Thoracic Institute nurse.

Q. Who should be responsible for follow-up care?  Pulmonologist? Ped. Surgeon? regular pediatrician?

A. Pediatrician is fine, having someone local who knows your child is ideal. IF for any reason you question the device and are not sure if there may be a problem; x-rays should be done and sent to our office; an AP and lateral of the entire spine—the only way to tell if a device has become dislodged or migrated is to visually see the x-ray.

Q. My child will be flying in a plane.  What should we do to keep him/her comfortable?

A. Medicate prior to the plane ride, pick him/her up every 2 hours to change positions, etc.

Q. The next day from the plane trip, he/she will be riding in a car for 5-6 hours.  What should we do to keep him/her comfortable?  Besides padding his/her car seat, would a harness that will allow him/her to lie down in the car be better?

A. Same thing, medicate, stop the car every 2 hours and let him/her walk around. If the surgery is done to straighten the spine, you may need to have your car seat/wheelchair or stroller adjusted.

Q. Once home, what sorts of activities should we avoid?

A. Let your child do whatever they can tolerate.  If she has PT- no abduction greater than 90 degrees for 6 weeks post-op.

GENERAL QUESTIONS:

Q. Does the hospital provide money for meals?

A. No, each family is responsible for their individual meals/snacks.

Q. Does the hospital provide transportation to the hotel or Ronald McDonald House?

A. No, several hotels are within walking distance.  The trolley, bus and taxi are available.

Q. If I stay at the Ronald McDonald house, do I need a referral?

A. Yes. Our office will send a referral for you. Your responsibility is to tell us that you are staying there, when you will arrive and how many people will be with you.

Q. What is the weather like in San Antonio so we can pack appropriately?

A. Winter time, something with long sleeves, the days are usually sunny, but the nights can be cool. The hospital is cold most of the time.
Spring/Fall—most people wear shorts; temperature may range from the 60-90’s—just depending.
Summer, HOT, HOT, HOT—bring loose, comfortable clothes.