Pre-operative appointments
Children's Hospital, Seattle, WA; 15 March 2003

Emma's surgery is scheduled for Monday, 28 April. Everything works backwards from there. We have a consultation with the cardiac surgeons and the anesthesiologist. Emma has a pre-op appointment before the day of surgery.

Surgery Schedule

We received a packet of information from Children's Hospital. The surgery is scheduled, as well as all the consultations and pre-op work. Emma's current schedule is as follows:

Surgery Consultation
Children's Hospital, Seattle, WA; 18 April 2003

The consultation with the surgeons was scheduled for last Friday (Good Friday), 18 April. We got all the way up to Children's Hospital only to have the appointment rescheduled. The consultation is currently scheduled for right after the lab testing appointment next Thursday.

Pre-Operative Lab Tests
Children's Hospital, Seattle, WA; 24 April 2003 at 11:00am -- Dr. Lester C. Permut

weekend before surgery

Because the consultation was cancelled last week, this visit combined the pre-operative lab work with the consultation. We met with Dr. Permut at the end of the day. The day started at 11:00am when Emma went to get some x-rays. That didn't take very long at all.

Then Emma got an ECG test and a blood/oxygen saturation test. Emma got her blood pressure and temperature measured too. She was also given a "coughing buddy" bear. It is a stuffed bear that is more rigid than other teddy bears. Emma was told to bring it with her to the hospital. She can hold it against her chest as she coughs after the surgery. "Coughing is good."

Then we went to the Laboratory to get some blood drawn. They drew four phials of blood. There is a 50/50 chance that Emma will need a blood transfusion. She is right on the edge with her weight and size of needing a transfusion.

On our way to the anesthesiologist, we took a detour to the cafeteria for lunch. Forty minutes and $15.00 later, we checked in at the front desk of the anesthesiology department. We waited there for a while. The anesthesiologist explained how things would work for Emma going into surgery and coming out of surgery. Emma could get her IV before or after going into the operating room.

1. If she got it before, they could numb her hand before sticking the needle in. Then we could stay with her longer.
2. If she got her IV after going into the operating room, she would have to go sooner and they would put her to sleep with a gas mask.

When we went back to the cardiology department, we met with Dr. Permut. He explained that both he and Dr. Gordon Cohen would be present during the surgery. One of the nurses explained it as a pilot/co-pilot process. Dr. Permut said only one of them would perform the surgery. The other would assist and advise.

Dr. Permut went on to explain the intent of the surgery, various options, and some of the decisions that might have to be made during the surgery. Basically, they will repair Emma's mitral valve. They are confident that they can get a "good" repair. Dr. Permut was reluctant to quantify "good" as a percentage. If they can repair the valve good enough to substantially reduce the regurgitation or "leakage" of blood into the left auricle, they will do that. If they think that they can't get a good enough repair, they will replace the valve with a mechanical heart valve.

Dr. Permut showed us a mechanical heart valve. This valve is basically the tried and true valve of over 30 years. It has undergone subtle improvement over the years. The most commonly used materials include:

• stainless steel alloys
• molybdenum alloys
• pyrolitic carbon for the valve housings and leaflets
• silicone, teflon®
• polyester (Dacron®) for sewing rings

If they get a good enough repair, Emma could go for a number of years without another surgery. With the blood thinning drugs, maybe the repair would be good enough for Emma to never have another surgery. If they need to replace the valve, Emma will have to go on Coumadin and she would need at least one more surgery in adulthood. The mechanical valve won't grow as she grows.

We have to be at the hospital at 6:00am on Monday. Emma can't have solid foods past midnight. She can't have clear liquids past 4:00am. The surgery begins at 8:00am. It will take four to six hours. Dr. Permut said it would probably be closer to the six-hours because Emma has already had open heart surgery before. They have to get through the existing scar tissue. That takes time. When they close, the scar will look almost exactly as it does now. It may be a millimeter or two wider. If Emma gets a valve repair, she is expected to be in the hospital for 3 to 4 days. If she gets a valve replacement, she is expected to be in the hospital for 5 to 6 days.

The Hospital Stay
   Children's Hospital, Seattle, WA; 28 April 2003 at 6:00 am -- Dr. Lester C. Permut

The surgery was performed as scheduled. A quick run down of the hospital stay events are listed below. Emma's mitral valve was repaired; not replaced. A narrative of the details appears in the next section. I took notes as the day passed.

Emma's primary caregiver before and immediately after the surgery was the anesthesiologist, Dr. John Bastien. Dr. Mike Isis was the other anesthesiologist on Emma's case. Dr. Lester Permut is the pediatric cardiac surgeon who performed the surgery. The other pediatric cardiac surgeon was Dr. Gordon Cohen. Karen Killian and Joni Cohen are the nurse practitioners who work in Dr. Permut's office. The ICU staff were Terri (she took care of Emma in ICU), Dr. Erik Harry and Dr. Harris Baiden. The ICU staff were great.

Surgery Details
   Children's Hospital, Seattle, WA; 28 April 2003 at 6:00 am -- Dr. Lester C. Permut

Day of Surgery
4:30am - We left home. Traffic was relatively light for a Monday morning. There was a little slow-down at Boeing Field. We arrived at the hospital anesthesiology desk at 6:00 am. We waited quite a while. There were a number of other children checking in for their surgeries that day.

7:00am - We finally went into induction. Emma changed into a hospital gown and one of the nurses put some anesthetic cream on the backs of Emma's hands. This would numb the area where the IV would go. Emma was also given the liquid medicine that makes her "loopy." The purpose of it is to relieve any anxiety about going into surgery and getting poked with needles.

8:00am - We parted company with Emma. She was under the care of Dr. Bastien, the anesthesiologist. We went to the ICU to pick up a pager. We would be paged a couple of times during the procedure to keep us informed of Emma's progress. Then we waited in the hospital cafeteria and in the Family Resource Center.

10:05am - We were in the Family Resource Center trying to pass the time. We hadn't heard anything yet; it had been two hours. So I called the ICU for an update. They reported that the surgery had started, but Emma was not on the heart/lung by-pass machine yet.

11:25am - Terri (ICU nurse) paged us. She reported that Emma was off by-pass. There was about another hour of surgery left. Terri told us that Dr. Permut and Dr. Cohen had elected to repair the valve rather than replace it. We were very pleased to hear this news! Terri invited us on a tour of the ICU before Emma arrived.

12:30pm - The ICU paged us again. After the tour of the ICU, we decided to get some lunch in the cafeteria. The ICU told us that Emma was coming back from surgery and into the ICU. When we got there, Dr. Permut met us. He told us that he was able to get a fairly good repair on Emma's mitral valve. The repair reduced the regurgitation or "leaking" substantially. Before the surgery, Emma did have very heavy regurgitation. Now she only has moderate regurgitation. Dr. Permut was very pleased. He said that inevitability Emma will have to get her mitral valve replaced. But this repair could buy her three to eight years. It would be better to replace the valve when she is bigger. Plus this way, Emma can stay off the blood thinners and not worry about getting a scrape or two.

1:00pm - We waited a little bit longer so the ICU staff could get Emma situated. Dr. Isis, the anesthesiologist, talked to us too. He said that from his perspective everything went well. Emma did need a little blood transfusion.

1:10pm - We were invited to the ICU and Emma's bedside. There were a lot of tubes, including three chest tubes, a central line, two IVs , a breathing tube, and pacer wires. Even so, Emma did not look as bad as the 1997 surgery. It should be one to two hours before Emma wakes up.

2:45pm - Emma began to wake up. She drifted in and out for quite a while.

4:00pm - The breathing tube was removed. Emma was very thirsty. She was not allowed to drink. She could only suck a wet sponge. If she drank, it would come right back up.

Rest of the day - Emma experienced a form of arrhythmia called ventricular tachycardia (VTAC) twice three times during the course of the evening and early morning. This concerned the ICU staff very much. Dr. Permut said it was probably due to the pacer wires touching her heart. When the pacer wires are removed, it should clear up.

five days after surgery

Days of Recovery
The next day, the central line was removed. Emma was transferred to a regular ward room. She began complaining of side pain and neck and shoulder pain. Emma got up several times to walk a short distance. Emma got an EKG and a chest x-ray on the second day. The x-ray showed fluid around the lungs. Emma was given lasix to help clear the fluid. Emma also had trouble with nausea and got sick several times over the first three days. Emma was taken off of the narcotic painkillers, such as Tylenol with codeine. She was put on regular Tylenol and Ibuprofen. This reduced the nausea greatly.

Emma began to eat better and her spirits picked up with visits from her friends on Wednesday and Thursday. While she still had a lot of fluid around her lungs, she was released on Friday. The diuretics seemed to be working well and should continue to work. Emma has a follow up appointment scheduled for next week.

Surgery Follow Up
   Children's Hospital, Seattle, WA; 8 May 2003 at 11:30 am -- Karen Killian

The nurse practitioner, Karen, said Emma was doing fine. She said that Emma only had a little fluid left around her lungs. Apparently, Emma had quite a bit of fluid when she was released last Friday. Karen said she fully expected us to call her during the week about pain or irregular breathing. Emma's dose of diuretics was cut by two thirds.

Karen reiterated to Emma that she should take it easy. Karen told Emma that that scar running down the middle of her body means she had major surgery. There will be no bike riding, roller blading, skateboarding, scootering, running, or jumping for six weeks. In fact, Emma may begin half days at school next week, but she is excused entirely from all physical education until the end of school. She has an appointment with Dr. Portman in two weeks.

Further Surgery Follow Up
   Children's Hospital, Seattle, WA; 19 May 2003 at 1:00 pm -- Dr. Michael Portman

Dr. Portman examined Emma. He said the regurgitation has slowed significantly and Emma's heart is reduced in size. However, he was not as enthusiastic as he was before the surgery. We got the feeling he was a little disappointed in the results. Dr. Portman said it is a wait and see situation. The mitral valve repair might last a long time; it might not. Emma is allowed to do most anything she wants now, except for the activities mentioned above. Emma must wait the full six weeks for the bone to heal before she can do the other things. Emma will be completely free of activity restriction by June 6th.