Roger Mee - Virginia's Surgeon

Map of the Human Heart

Cleveland Clinic

Ronald McDonald House of Cleveland

Photo Album

Walk on Water

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I have added some more pictures to Virginia's photo album, but most of them are of her having fun at the mall in Columbus. =)

Once we left the hospital on Saturday, we went back to the Ronald McDonald House. As far as medications went, Virginia only had to take one baby aspirin per day, and a small amount of Lasix twice a day. The Lasix is a diuretic to remove excess fluid from tissues in the body. Excess fluid can stress the heart and make it work much harder than usual. The good news for Virginia was that the doctors said she could have caffeinated drinks now! Before, they didn't want her to have caffeine in case it caused her to have an irregular heartbeat. Now that she has been "repaired", she is much like everyone else.

While we were in Cleveland, we went to the Zoo and saw their dinosaur exhibit. We also went to a movie theater to see The League of Extraordinary Gentlemen. But mostly, we hung around the RMH and played with all the stuff and watched all their cable television.

On Tuesday, July 15, we went to the doctors' office for a follow-up appointment before we were to leave Cleveland. The surgical nurse removed the chest tube stitches and said Virginia looked great!

We planned to leave Wednesday, July 16, as Virginia had a follow-up appointment with her Lexington cardiologist on Thursday. The check out time for the RMH was 3 in the afternoon, so we spent the morning cleaning the room and doing laundry. Right before we left, Virginia ran down the hall and fell down. The chest tube spots burst open and blood gushed everywhere. Another mom got some napkins for the blood and drove Virginia and me over to the Clinic. Once we got there, the surgical nurse cleaned up Virginia's middle and put some Steri-strips over the chest tube spots. It just looked a lot worse than it really was, fortunately. Nothing was broken or bruised, other than Virginia's ego, since she knew she wasn't supposed to run in case she fell.

Once we actually left Cleveland, we drove all the way through to Paris and got home about 11 PM. We did stop every so often to stretch our legs or get a snack.

We saw Dr. Vranicar in Lexington on Thursday. He said Virginia's x-ray looked great and that she only needed to take the Lasix once a day for the next month. For six weeks from the date of surgery, she can't ride a bike, run, ride a scooter, skate or do any other activity that could cause her to fall. She can't go swimming in a pool, lake, river or creek (I don't think there was much chance of any creek swimming, anyway). And she can't lift more than five pounds. However, she CAN walk all she wants and climb all the stairs she wants.

 
I have uploaded some new pictures to Virginia's photo album. Luckily, I was able to locate a wireless network for "guests" on the Case Western Reserve University campus. Sharing a dial-up connection on one computer at the RMH has been a challenge!

Back to the story: about 2 in the morning on Thursday, the doctors removed Virginia from the ventilator and put her on oxygen, since she was trying to breathe on her own. Since visitors aren't allowed to sleep in the PICU (since you'd get in the way in the event of an emergency), I left around 3 AM to catch a nap in the Parents Lounge. Mike came down around 6 AM. The PICU is closed from 7-8 AM for shift change, but rounds start soon after. We went back to the PICU at 8, so that we could see Dr. Mee and the other doctors.

Dr. Mee said she looked great! He said she had recovered remarkably well. The other doctors were still wondering whether she should be classified as "absent pulmonary valve" or "abnormal pulmonary valve" with a replacement valve. I figure they can sort it out later. Haha! Virginia slept most of Thursday, thanks to the morphine drip. In the afternoon, she got wheeled down the hall for an echo to make sure the valve wasn't leaking. It was very strange to see all four heart valves in working order!

On Friday, Virginia's oxygen was discontinued at 9 in the morning and she got up to walk in the hall around noon. She didn't really want to, but the nurse said she had to. I guess she figured she might as well get it over with, so she RAN down the hall, then got back into bed. At 6, she got up to walk down the hall to sit in front of the large salt-water fish aquarium. She got up again later that evening to see the fish, but their light was out and they were sleeping.

Saturday was great, because the doctors told us she was doing well enough to leave!

I'll post more later, as my battery is running low on the laptop, and I must get back for the Hawaiian Luau cook out at the RMH.

 
I apologize for the update delay, as I hadn't counted on the lack of a wireless network at the Cleveland Clinic. =)

On Wednesday, we got on the shuttle to the hospital. Virginia didn't have to be there until 11, as she was the third and last operation of the day. We hung around in a room, watched TV and got bored...so we walked down to the play room. The first case took far longer than anticipated, so Virginia didn't have to go anywhere until 4:30. The nurse gave her some medicine to help her relax, even though she didn't seem nervous. Then she got in a wheelchair where a stuffed Sully (James P. Sullivan, top scarer from the movie Monsters, Inc.) was waiting.

Once we wheeled into the operating room area, Mike and I got gowned up with hats, masks and booties. The OR nurse asked us some questions (who are you and why are you here) and then we all went inside the actual operating room. Virginia got out of the wheelchair and hopped up on to the table by herself. She talked to the anesthesiologist's assistant and got ready for The Gas. Virginia was asleep in no time flat. Mike and I got to kiss her through our masks and then had to leave her at 4:50.

We went to the first floor cafeteria to eat and then went to the Parents Lounge to wait. At 5:30, June, the OR Nurse, called us to say everything was going just fine. She called us every half hour or so to give us updates, and that was very reassuring to both of us. By 8:30, the surgery was complete and by 9:00, we were able to visit Virginia in the Pediatric Intensive Care Unit.

Dr. Mee came to see us in the Parents Lounge after the operation. He told us that he patched her ASD with some of her own pericardium, so it won't have to be replaced in the future. He said that her pulmonary valve was replaced with a homograft; that is a human valve from an organ donor. Since it doesn't have blood vessels of its own, there's no chance of rejection, as there is with other organ transplants. However, the body does recognize it as a foreign object and tries to cover it up. Thus, the valve will eventually calcify and need to be replaced. Dr. Mee said that it would last five years if Virginia is unlucky, and twenty years if she is extra lucky. He said that for most people, the replacement valves generally last ten years. Dr. Mee also said that he cut Virginia's pulmonary artery down to normal size and repaired it with permanent sutures. As to the enlarged aorta and the possibility of collagen vascular disease, Dr. Mee felt that the enlargement was just due to the large volume going through it over the years, not to any systemic problem. He sent off some tissue to pathology, though, just to be sure. We thanked him and I gave him a big hug.

 
Today we had a long day at the Cleveland Clinic. We took the shuttle bus over from the RHM, then started in Radiology. They have a separate waiting area just for kids...a fabulous idea! We took Virginia's chest x-ray up to the doctor's office on the fourth floor of the Children's Hospital and got checked in.

In the office, Virginia got labs drawn, an echocardiogram and an EKG. We met with Cheryl, our nurse, who told us that Virginia's surgery will be the third case for Wednesday. Virginia is last because she is the oldest patient! Dr. Rosenthal came in to the room next. He is a pediatric cardiologist and works closely with Dr. Mee. Dr. Rosenthal added a new phrase to our vocabulary: "collagen vascular disease". He said that since her aorta was also enlarged to a point beyond what is considered "normal" with an Atrial Septal Defect, AND that since she is ultra-flexible, she could have collagen vascular disease. He said they would take a tissue sample during surgery to rule this diagnosis in or out.

Dr. Rosenthal asked us what we'd been told by our doctors at home, and I said that she was born without her pulmonary valve, and that's what caused her right ventricle and pulmonary arteries to be enlarged. Dr. Rosenthal said that he thought maybe there was something else involved, as Virginia has some flaps of tissue where her PV should be located. He said that if there were something else causing the pulmonary artery to be enlarged, that could cause the valve not to work, as none of the leaflets could reach each other. Of course, once Dr. Mee gets inside, perhaps everything will be made clear.

Next, we saw Jeff, the Child Life specialist. He took us on a tour of the PICU and the floor where Virginia will stay while she's in the hospital. It is right down the hall from the doctor's offices, so everyone is within shouting distance.

We went back to the office to see Dr. Mee. He said that he expects to insert an adult-sized homograft pulmonary valve for Virginia. He will use a piece of her own pericardium to patch up the hole between the two atria. Lastly, he will check the pulmonary artery and see if he needs to clip it down to a "normal" size after the replacement is complete. Mike gave Dr. Mee a bag containing a bottle of Woodford Reserve and he thanked us heartily.

After a short ride back to RMH on the shuttle bus, we've decided to go out to eat someplace nice. Virginia votes for Taco Bell! Right now, she is down in the kitchen playing with Buster the Black Lab who has come to visit the children. She told me to write "La la laaaaaa" for all those who have come to read her updates. =)

 
We got settled in at the Ronald McDonald House of Cleveland last night. If anyone wanted to mail anything to Virginia (hint!), they could use the following address:

Ronald McDonald House
10415 Euclid Avenue
Cleveland, OH 44106-4709
Attn: Virginia McKee Room 231

Some bank employees came tonight and grilled up a picnic for supper. There were hamburgers, hot dogs, chicken, pasta salad, potato salad, chips, drinks, watermelon and loads of desserts.

We loafed today. Virginia has been all over the House and has made many friends. There are plenty of activities and fun places to be found.

 
I took a picture of Virginia and Mike at supper tonight with my Palm Zire71. I have uploaded it to a Webshots album at


Virginia's Surgery

so hopefully everyone can go there to see the latest pix.

I've also added a link to the photo album over on the left. The photo album contains a Guestbook feature, so feel free to leave a message for Virginia.

 
We left home this afternoon around 2:30-3:00 in the afternoon. Before we left, Nancy from Dr. Mee's office called to make sure Virginia wasn't ill or running a fever. Meanwhile, Virginia packed two backpacks full of things. One backpack contained only Caffeine Free Coca-Colas - her favorite.

Once we got to Ohio, we saw more state troopers in one hour than we'd seen all year in Kentucky. On the plus side, our radar detector works. On the minus side, the speedometer doesn't. The odometer quit right after 193,731 miles. I see a trip to the Honda dealer in Cleveland in our future.

We stopped in Columbus at the Grove City Hampton Inn. We unpacked the bags, took a break in our room, then ate supper at the Bob Evans next door. Once we returned to the hotel, Virginia went for a swim in the indoor pool. The hotel has high-speed wireless Internet access, so she spent some time online, as well.

Tomorrow we plan to eat at the free breakfast bar, then visit some places in Columbus. Later in the day, we'll drive on to Cleveland.

 
Virginia's Cleveland Clinic Appointment Schedule

Tuesday, July 8, 2003

9:40 am

Radiology - Chest X-ray

10:15 am

Pediatric Cardiology - Routine Lab Visit

10:30 am

Pediatric Cardiology - Echocardiogram

11:15 am

Pediatric Cardiology - Electrocardiogram

11:30 am

Pediatric Cardiology - Dr. Geoffrey Rosenthal Office Visit

12:00 pm

Pediatric Cardiothoracic - Dr. Roger Mee Office Visit

Wednesday, July 9, 2003

Hospital admission for surgery

 
Virginia has a dentist appointment at 2:30 in the afternoon on Wednesday, June 9, 2003 to make sure that she has no active dental infections.

I found out that even though The Cleveland Clinic accepts my insurance plan, the insurance will only pay 50% if I don’t get Virginia’s procedure pre-certified at least SEVEN days in advance. I’ll be making that call tomorrow, I guess.

 
Installment 2 of the Oft-Requested History of Virginia =)

I called my husband and told him we needed to go to the OB’s office and speak with a pediatric cardiologist. Mike met me there and we were ushered into a small room where we were introduced to the PC. He said that he had reviewed the tapes and that our baby had a serious heart problem. We asked exactly what was wrong and were told the baby had Tetralogy of Fallot with an absent pulmonary valve. He explained that ToF by itself is generally corrected by surgery after birth, but that ToF without a pulmonary valve was a fatal situation. The OB said we needed to know about this right now, in case we wanted to terminate the pregnancy. If we wanted to do that, we’d have to travel out of state, as I was now 21 weeks along. We were given time alone in the office to “think about” our decision.

There wasn’t a lot of talking after the doctors left. I remember staring out the window. I couldn’t believe this was happening to us. The baby started kicking me. We had our answer.

When the doctors returned, I asked what would happen if we didn’t choose to end the pregnancy. The PC said the baby would most likely die in utero. I told them then that’s what would have to happen, because I didn’t have the authority to end someone else’s life. Both doctors seemed saddened by our decision. The OB said I would need more frequent monitoring to check the baby’s status, and the PC said he would schedule for us an appointment with one of the pediatric CT surgeons.

I had an amniocentesis performed to check for genetic problems and we found out we were having a girl. We picked out the name Virginia and set about getting ready for what might happen. I read up on congenital heart defects. I was sad to think that I would have to tell my daughter that her new baby sister had gone to heaven before she ever came home.

At each OB visit, the doctor was amazed that the baby was growing and doing well. We met with the surgeon and he formulated a plan of action. He said that when the baby was born, she would be taken away for immediate surgery. There would be two teams of surgical specialists at the ready, and everyone would hope for the best.

Finally, the Big Day came. On September 6, 1994, we went to the hospital as I was in labor. There was a large crowd in the birthing room, but with all the medication I’d been given, I didn’t notice. When Virginia was born in the early afternoon, she wasn’t breathing. After she was resuscitated, they took her vital signs. She was a full-term baby, weighing nine pounds, six ounces and measuring 19.5 inches long. The doctors took her away and Mike followed them. After further testing, it was determined that Virginia had an absent pulmonary valve and an atrial septal defect. While this condition was serious, it did not warrant immediate intervention.

Virginia was kept in the Neonatal Intensive Care Unit for nine days to make sure she was stable enough to go home with us. She was the largest baby there, and there was a bit of a scramble to find her a little shirt to wear. They gave us a very nice handmade quilt to keep, and a prescription for liquid Digoxin. She would also have her own pediatric cardiologist to see regularly.

Our journey had only just begun...

 
In order to address a frequently asked question, the next few installments will feature a condensed history about Virginia and her heart defects. Even though the story has been abridged, it’s still a bit longer than your standard Reader’s Digest Version.

When I was pregnant with Virginia, the obstetrician recommended a routine ultrasound be done at 20 weeks gestation. I hadn’t had one with my first child, and asked why one needed to be done. He said that our insurance had relaxed its policy regarding the “medical need” for a routine ultrasound and now classified it like the other tests pregnant women are offered. I figured it could hurt and scheduled it for a day my husband Mike could be there.

We showed up for the ultrasound as if it were any other office visit. It was exciting to see the baby moving around. Then the ultrasound tech started measuring something intensely and stopped laughing with us. She excused herself from the room. We wondered what it could mean…the tech returned with the OB doctor who began taking measurements, too. He explained that there appeared to be something wrong with the heart, but that sometimes ultrasound machines displayed incorrect results. He suggested we see a pediatric cardiologist who specialized in fetal echocardiography.

I went to the appointment with the specialist one morning and went back to work afterwards. It was handy for me, as I worked “down the hall” from their office. About an hour later, a nurse from the OB office called and asked if I could walk over to their office and bring my husband, too. We were having some sort of celebration lunch at work right then, so I asked if we could come over in a couple of hours. The nurse put me on hold and the OB got on the phone. He said it was “very important” that we both come to him office right away, as a pediatric cardiologist was there to talk with us.

 
Hopefully this web site will allow Virginia's information and updates to flow smoothly. =)

Virginia has been scheduled to have surgery on Wednesday, July 9, 2003 at the Cleveland Clinic Children’s Hospital. Dr. Roger Mee will be her surgeon. Virginia must be at the hospital the day before for a pre-surgery workup, and will have to stay in the Cleveland area for five to seven days after surgery for follow-ups.