Q&A with Dr. Lupinetti, the cardiac surgeon
   in no particular order

These are questions we had for Dr. Lupinetti in 1997. Dr. Lupinetti was the pediatric cardiac surgeon at Children's Hospital in Seattle, WA. These are the list of question we brought with us to a consultation before the surgery.

• What are the risks of general anesthesia and this open heart surgery for Emma?
• What will the scarring be like? Can a plastic surgeon do any work on Emma's scar?
• What happens if the valve needs replacement rather than repair?
• Will Emma need more surgery? What will be her treatment as she gets older?
• Will Emma be able to handle stresses to the body, such as child birth?
• How will the growth of the heart affect the valve repair? Will the repair hold as Emma and her heart grow larger over time?
• How long is the surgery?
• What will the hospital stay be like?
• Will Emma's skin virus (molluscum contagiosum) cause any problems during surgery?
• How long before the surgery should Emma stay healthy - no colds, coughs, etc.?
• What is the treatment for pain after the surgery?
• How do we prepare Emma? Should she be restricted from certain activities before the surgery? How about after the surgery?
• How will Emma be when she wakes up? What will she look like? How will she feel?
• What will Emma's recovery be like, and how long will it last? How will we be able to tell she is improving over the course of her hospital stay? When can we expect her to be back to normal and fully recovered?
• What is the severity of Emma's condition? Can it already be affecting her energy level? She often complains of stomach aches - is it related? She complains of being tired and not feeling good. Is it just behavior or is she genuinely fatigued?
• If there is a need to postpone the surgery, what effect will that have on Emma?
• How urgent is the condition? When her doctor at Children's Hospital in Tacoma, WA said, "a couple months," does it mean if we wait longer to have the surgery, it will hurt Emma?
• What are the possible complications after surgery - a collapsed lung was a possibility with Daniel?
• When will her blood typing be done? What about giving blood for her just in case from which ever one of you matches, if it is Mary, can one give blood when nursing.
• What direction will the scar run? Up and down or other? And how long will it normally be?
• Is the anesthesiologist special to pediatrics?
• We don't recommend preparing Emma except to vaguely tell her where she is going and what for and that you both will be with her. After surgery she will no doubt be given morphine and Regina says that has an amnesia effect on children. And the prep question means that she shouldn't be treated any differently before surgery unless and except she needs some kind of medication.

Surgery Consultation Results
   Children's Hospital, Seattle, WA; 8 Jan. 1997 at 10:30 am -- Dr. Flavian Lupinetti

Rather than provide answers to the specific questions listed above, I've decided to just document what we learned at the consultation with Emma's cardiac surgeon. When we met with him, we covered a lot of ground in just talking about different things. It would be very time consuming to provide a specific answer to each question.

Mitral valve repair is considered a low risk procedure. There are always risks associated with any surgery. Emma will be put under general anesthesia and it is open heart surgery. All the associated risks summed up constitute about a 2% chance of complications during the surgery. Speaking of general anesthetic, the anesthesiologist is not only a pediatrics specialist, he or she will be a pediatrics heart specialist. This means the anesthesiologist is specialist for children having heart surgery. This pool of pediatric cardiology anesthesiologists is only five doctors.

The procedure will be to sew up the hole in the wall between the two upper chambers of the heart and sew up the hole in the mitral valve. The valve ring will overlap the repaired part of the valve and continue growing as Emma and her heart grow larger over time. Emma will see a dermatologist before the surgery to treat her skin virus (molluscum contagiosum). It is probably not a problem and won't be of concern during surgery. The skin virus may cause the doctor to prescribe a different regiment of antibiotics after the surgery. The surgery will last 3 to 4 hours. There is 90% to 95% chance Emma will never need any more surgery on her heart. If a second surgery was required, Emma would be middle-aged or older before it was required.

Emma will be in the Intensive Care Unit (ICU) for two days after the surgery. Then she will move to a four-bed ward, where she will stay for 3 to 4 more days. Emma will be given a continuous feed of morphine for about two days. This has proved to be a better method than multiple larger doses of morphine. The continuous feed provides a small amount of morphine over a longer period of time. The pain is controlled better while giving Emma an overall smaller amount of morphine. After a week or so in the hospital, Emma will come home. Over the course of the next week Emma's energy level will increase, and she will begin to be herself.

The scar will run the length of the breastbone and grow as Emma grows. The doctor will use the latest plastic surgery techniques to close the incision. He will use absorbable succors under the skin. This prevents the railroad track look. But there will be a line. Of course it will fade over time, as most scars do.

Dermatology Appointment
   St. Peter Hospital, Olympia, WA; 8 Jan. 1997 at 1:00 pm -- Dr. Michael Merchant

Emma's skin virus (molluscum contagiosum) seems to have subsided. Therefore, she will not see a dermatologist before the surgery.

Surgery Schedule

Emma has had a cold and the runny nose and cough are hanging on. Dr. Lupinetti, Emma's cardiac surgeon, would like Emma to be completely healthy for two weeks before performing the surgery. We have also found new homes for Winky and Todd, our part Siamese cats. Dr. Lupinetti and Dr. Sarah Murdoch, Emma's pediatrician, think Emma is probably allergic to the cats. That is why colds hang on for so long and possibly the cause of Emma's eczema. The surgery has been rescheduled as follows:

The Hospital Stay
   Children's Hospital, Seattle, WA; 14 March 1997 at 6:00 am -- Dr. Flavian Lupinetti

The surgery was performed as scheduled. A quick run down of the hospital stay events are listed below. A narrative of our thoughts and feelings and what we learned appear in the next section of surgery details.

Emma's primary caregiver before and immediately after the surgery was the anesthesiologist, Dr. Jumbo Williams. Dr. Flavin Lupinetti is the pediatric cardiac surgeon who performed the surgery. Karen Killian and Joni Cohen are the nurse-practitioners who work in Dr. Lupinetti's office. We learned a lot during this ordeal.

Dr. Williams told us that Emma would be "puffy" or bloated when we saw her after the surgery. When Emma was put on the heart/lung by-pass machine, her heart and lungs stopped working. The machine oxygenated the blood and pumped it back into the body, doing the job of Emma's heart and lungs. The blood reacts with the plastic tubing in the machine, which causes the blood to activate and release water into the surrounding tissues more easily than it otherwise would. Emma was essentially retaining water. It would take a couple days to get rid of the excess water.

Surgery Details
   Children's Hospital, Seattle, WA; 14 March 1997 at 6:00 am -- Dr. Flavian Lupinetti

We arrived at the hospital surgery registration desk at 6:00 am. After a little waiting, Emma received another physical exam to make sure that, one last time, she was still healthy enough to go through the surgery. Emma changed into hospital pajamas. Dr. Williams explained how she would be prepared for surgery.

Expectations
When general anesthesia was applied, Emma would fall asleep. Then all the tubes and wires would be hooked up to Emma. Children's Hospital does all this after the children are asleep to avoid unnecessary "pokes." Emma had an I.V. in her left arm and right ankle. She a standard urinary catheter and a catheter that entered through a vein on the right side of the neck. The neck catheter was used to administer medicines in the larger vein that would have a burning effect on the smaller veins used in the hand I.V.

Induction
At induction, Emma was given some medicine that really made her disoriented. "Loopy" is the best word to describe it. Emma became very happy and carefree. She didn't care where she was or who was with her. This medicine takes about 30 minutes to take full effect and helps to prevent separation anxiety when Emma is wheeled away. Although, they didn't give us any of that "loopy" medicine.

Surgery
Emma was wheeled away and prepared for surgery. Dr. Williams administered the general anesthesia and put all the I.V.'s and catheters in. Mary and I began our long wait! We went to the ICU to get instructions and a tour. We picked up a hospital pager. The ICU would keep us updated on Emma's progress. Then we went to the cafeteria and ate a little breakfast. then we went to the "parent resource center" to wait some more. We drank coffee and soda pop and waited some more. We were paged when the surgery actually began. We we paged again when Emma went on heart/lung by-pass. We were paged a last time when Emma went off heart/lung by-pass. About 30 minutes later, Dr. Lupinetti came to talk to us.

Prognosis
Dr. Lupinetti said Emma was doing fine and she would be in the ICU in about 30 minutes. We could see her in about an hour. He said the atrial-septum hole was fixed with no problem. The mitral valve was more malformed than they originally thought. They did not get a 100% fix on that. They fixed most of it, but there is still a leak there. Emma may need another surgery some time. It could be a year or decades before she needs it though. If she does need another surgery, it will most likely be a mitral valve replacement. Emma will continue to be monitored by a cardiologist.

First Sight
We went to the ICU waiting room and waited to see Emma for the first time after surgery. Going into the critical area of the ICU, we had to wash our hands up to our elbows for three minutes. In this area, Emma had two nurses watching over her. We were somewhat prepared for how Emma looked. So it was not a total shock. She had all the tubes coming out of her plus the leads and wires for the heart monitors. Emma also had a "chest tube" positioned directly below the incision to drain fluids caused by the surgery and the blood-plastic reaction. Emma had a breathing tube down her throat and taped to her face. She was still asleep. They woke Emma up later in the afternoon. She couldn't talk because of the breathing tube, but probably didn't feel much like it anyway. When the doctors were satisfied that Emma was breathing well and could maintain the oxygen intake levels on her own, they removed the breathing tube. This made Emma much more comfortable. She was feeling no pain because the morphine drip was going.

General Recovery
Emma was moved to the more general area of the ICU early the next morning, Saturday. There was one nurse for every two patients here. Emma was moved to a standard ward later in the afternoon. She was also taken off the morphine and put on Tylenol w/ codeine. Her urinary catheter was removed and she got up several times to use the bathroom. Sunday, Emma's chest tube was removed. She was given some morphine before the procedure. Two of her I.V.'s were removed as well, and her heart monitors were removed. On Monday morning, Emma went to three tests, an EKG (ultra sound on the heart), ECG (heart beat graphs), and chest x-ray. The doctors looked over the tests and said Emma could go home in the afternoon. Emma's last I.V. was removed and she was released. Emma has a follow up appointment with Dr. Portman on Friday, 21 March.

Emma - Recovering in the Spring 1997

At home, Emma has been doing fantastic! She was out of bed most of the day on Tuesday. In the hospital, she kept saying she wanted to go home. Being home has made every difference. Emma is mostly off the Tylenol w/ codeine and is taking children's Advil - better for heart patients. The Emma we all know and love is emerging very quickly - much more quickly than even the doctors thought. Emma is in the top 2% of heart surgery recoveries.

Surgery Follow Up
   Mary Bridge Children's Hospital, Tacoma, WA; 21 March 1997 at 1:00 pm -- Dr. Michael Portman

Only seven days after surgery, Emma is doing very well. She got another chest x-ray and an EKG. Emma's heart is normal sized. The atrial-septum defect is completely repaired. The mitral valve cleft is still leaking; although much less than before the surgery. There is a chance Emma may need more surgery. It is a waiting game. The mitral valve repair could last a year, or it could last decades. If another surgery is required, it would most likely be a valve replacement. Emma's next cardiology appointment is in six months. From there, Emma will continue annual checkups.

Relapse
   Mary Bridge Children's Hospital, Tacoma, WA; 26 March 1997 at 1:00 pm -- Dr. Michael Portman

Late one Friday night, Emma began to complain of severe back pain. We took her to the on-call pediatrician here in Olympia the next morning. He examined her, and Emma got an EKG done. Everything looked fine, and Emma was no longer complaining. Two days later, Emma began complaining again. Dr. Sarah Murdoch, Emma's regular pediatrician, examined her and suggested that Emma get an ECG done. The closest facility that has the equipment is Mary Bridge Children's Hospital in Tacoma. Because it was after normal business hours, we took Emma to the emergency room. The ECG revealed fluid around the heart and Emma's heart rate was a very high 165.

Emma was immediately put into the Intensive Care Unit (ICU) and given medicines to reduce her heart rate and help her body flush the fluids. Emma stayed in the ICU overnight and went home the next day. She was put back on her diuretic medicine to flush fluids from the body. Emma was also given a steroid called Prednisone to take in decreasing dosages over seven days. Prednisone is a personality altering medication. Emma was very cranky for the next week. Emma is doing fine now and will see her cardiologist in six months.

1997 Summer Progress

Emma - Summer 1997

Emma had a fairly nice summer. Her energy level seemed okay and she was able to keep up with the other kids for the most part. Emma's pediatrician became concerned with Emma's lack of weight gain. So in September, Dr. Murdoch scheduled Emma for a checkup with her cardiologist, Dr. Portman.

Emma had a chest x-ray that indicated to Dr. Portman that everything looked good. As a precaution, Emma had an echo done. This showed that Emma's heart was enlarged. The mitral valve regurgitation was causing the heart muscle to stretch. Dr. Portman prescribed heart medication that would help Emma's heart pump more efficiently. The medication is an ace inhibitor called Captopril. Emma has to take this three times a day - eight hours about. We have her on a schedule of 8:00am, 4:00pm, and 12:00am. (Yes, we do wake her up to take her pill.)

Emma has responded well to the Captopril. She weighs 32.7 lbs. now (2 January 1998) and she weighed 32.0 lb. in September. Bare in mind she is still growing. Kids go through several long-skinny phases and short-fat phases as they grow. Their weight and height rarely seem to be in synchronization. Emma will see Dr. Portman again in February.

In the meantime, we think we have discovered that Emma has an allergy to dairy products, which has caused on ongoing struggle with her eczema. Emma avoids all diary and chocolate products.