This is the story I kept as a daily diary in the summer of 2006 when my daughter was diagnosed with a congenital heart disorder. It has a very happy ending and I am thrilled to say all is well now. She is now a very healthy teenager!
Elizabeth Hogan is 12 years old and the third child of Neil and Nani Hogan. She lives in San Jose, California with her 18 year old brother, Cory, and her 15 year old sister, Rebecca. The girls have always been very athletic and now spend most of their available time playing softball with the San Jose Lady Sharks.
Lizzie has been a solid all-around player since she started playing as a 5 year old with Branham Hills Girls Softball. She played rec ball for a few years, developed some good pitching skills, and then joined the Lady Sharks as a 10u player for their trip to ASA Nationals in Tulsa, OK in 2004.
When she was 7 years old she had a frightening incident at a gymnastics practice that sent her to the emergency room- she fainted in the middle of a fairly strenuous exercise. This led to her starting to see a pediatric cardiologist, Dr. Rhonda Lappen. Over the next few years the fainting spells started occurring a little more often (a couple of times a year), usually when jogging slowly for 5-8 minutes. At a yearly check-up in June of this year, Dr. Lappen felt it was time to get a little more aggressive about looking for answers. Lizzie was scheduled for some tests at Lucile Packard Children's Hospital at Stanford. Following are some of the details, journal style, as they continue to unfold over the summer...
June 18, 2006
Thursday, July 20, 2006
Friday, July 21, 2006
The word we get from Dr. Lappen is that Lizzie is a ticking time bomb and they will move along as fast as possible. The combination of problems she has occurs very rarely and there is not much precedence for this type of surgery. The time bomb is also a guinea pig!
She also says that until a few years ago, kids that needed any similar surgery were sent to the best in the country, usually Boston or Philadelphia. Now, with the arrival of Dr. Frank Hanley at Stanford, this is the only place we want to be.
Weekend, July 22-23, 2006
I managed to have a relatively relaxing weekend watching my older daughter play for a change, as I am part of the coaching staff on Lizzie's team and can't usually get to Rebecca's games. The Lady Sharks 16u team played a great tournament, getting to the finals before losing their 4th game on Sunday.
Lizzie's team as it turns out, played incredibly well too, beating some very good teams, and were the only 12u team to make it to the semi-finals in the 14u tournament before dropping in the heat. They are ready to play in Indiana!
Monday, July 24, 2006
Tomorrow we head to the hospital for a much more in-depth and invasive procedure.
Tuesday, July 25, 2006
Her right coronary artery is not attached to the aorta in the right place. When her heart is working hard, the pulmonary artery and aorta can compress the coronary artery and prevent bloodflow into the heart. This would make her faint. This tells us that the fainting episodes were much more serious than we originally thought and could have had catastrophic results. It is a congenital problem (there at birth) and can be fixed surgically. This procedure is done on children somewhat commonly and is referred to as a reimplantation of the coronary artery. The "A" Team doctor on this case will be Frank Hanley.
Her left coronary artery has a couple of clots (blockages) that are usually found in people over 50 or 60. This is very unusual in children and pediatric cardiologists don't address it very often. This problem is frequently repaired with stints, which are not designed (or proven) to last more than 15 years- probably not a good choice for a 12 year old. She needs bypass surgery as well.
Wednesday, July 26, 2006
The hospital calls and says we are going ahead with surgery ASAP- one week from today. Generally you wouldn't meet your surgeon until the day of surgery. I ask if we can meet Dr. Hanley first and they set up an appointment for tomorrow at 8:00am. I have to say we have definitely gotten the red carpet treatment.
Thursday, July 27, 2006
Friday, July 28, 2006
Saturday, July 29, 2006
Most of her team flew to Indiana today and we hope they keep us updated as often as possible. I finally sat down at the computer and got to work on this journal. I think the next few days will be relatively calm and quiet.
Sunday, July 30, 2006
Monday, July 31, 2006
Lizzie gets a huge lift and is blown away by the amount of the volume of email she is starting to receive. Thanks again to everybody who has been tuning in.
Tuesday, August 1, 2006
The Lady Sharks had a little tougher day today, losing their 2nd pool game to the Shamrocks. Next game is tomorrow at 11:30 (EDT) and we should be able to keep in touch on our way to the hospital
The surgery is scheduled for 1:00 (PDT), Wednesday afternoon and she has to stop eating by midnight tonight. I don't think I mentioned it before but Nani and I are sure that one of the hardest parts of this situation will be keeping Liz away from food all morning before we leave for the hospital around 10:15. This is a child whose most common answer to the rhetorical question, "How' ya feelin'?" is, "HUNGRY!"
As we turn in tonight I can honestly say that we feel Lizzie is in the best possible hands and know that with all the positive thoughts and prayers coming our way she is going to come through this in great shape ready to take on the world. I'm just not really sure how I'll feel as they roll her down the hallway into the operating room...
Wednesday, August 2, 2006
The hospital is pretty busy when we get there at 11:00, with the surgery scheduled for 1:00, we are asked to wait in the pediatric pre-op area. About 12:30 a nurse comes in and tells us they are running a little late and we might as well go for a walk for an hour or so. We know that Dr. Hanley had 1 surgery before us, a one month old baby, and it is running a little long. I don't see much sense in asking him to hurry. As a matter of fact I am worried about the baby's family and more inclined to make sure he has time for lunch and a nap before he gets to us.
I check in with the team in Indiana and here we had a tough time at the plate and lost 2-0. At least I think that's what I heard. Hard to tell whether the connection is bad because of the hospital or a ball field in the humid midwest.
We head over to Nordstrom's in the Stanford shopping center and Liz pick's out a pair of Crocs (some of your kids might know what they are), tries on some sunglasses, and we try to avoid getting near the cafe. She is definitely starving but we keep telling her it won't be long. By the time we get back they are ready to put her in pajamas and wait in a bed. By about 2:45 Lizzie is getting pretty irritated and we consider asking for a sedative or something. I figure it's time to unload some of the junk we've been hauling around and head down to the car with spare clothes and 1 dying computer.
When I return around 3:00 I am surprised to see Lizzie sitting up and smiling. "Guess what," she says, "We're going home!" I have a hard time deciding whether this is good news or bad news. From Lizzie's perspective this is great- it's finally breakfast time, with lunch to follow shortly.
The nurses tell us that the previous case has gotten very complicated and Dr. Hanley needs to postpone our surgery. I can't really imagine what the parents of that 1 month old baby are going through. We are told to go home and wait for a call. They probably can't get to us tomorrow but maybe Friday or next week.
Lizzie heads off with her grandmother and aunt for a nearby restaurant and Nani and I go across the street to the California Cafe for our own breakfast and to gather our thoughts and feelings as well as regroup and decompress a little.
It's now about 6:30 and I am back at the computer trying to reconstruct the day's events. This is how I remember it although I figured I'd better check with my better half before I posted it. When I asked Nani, "So what happened today?", her reply was, "Nothing! Nothing good, nothing bad...NOTHING!"
Thursday, August 3, 2006
Monday, August 7, 2006
Liz spent a lot of time here with our 10u team, who happened to take the championship, both as a fan and assistant coach. She had a great time helping them warm up before games and even got to call pitches occasionally. I can see coaching in her future as she can easily recall details from games years ago that I cannot even remember. I might ask her if we ever played some team I have never heard of and she would reply, "Yeah, we played them on those fields near a lake on a windy day. They had the 1st baseman with the red hair who couldn't hit a change-up, a centerfielder whose brother was in the marines, a left handed catcher, and the pitcher who needed to push more off her back foot, stride a little further, and keep her circle more on her power line," as she demonstrated the weaknesses in her motion. A little analytical...you think?
On another sideline- I didn't realize the interest this journal would generate on a few different levels. I knew it might help me keep my mind off the magnitude of what we are going through but I hadn't planned on feeling responsible to piece together a coherent story. I am thrilled to report that the baby Dr. Hanley was operating on last Wednesday is doing fine and all seems to be well, according to a friend who is a nurse in the hospital. She thinks they are probably at home now. It is very comforting to know that he did all he could to make sure the baby would be OK. I know we will get the same consideration and I certainly have no problem with the 1 week delay.
Tomorrow we will have an informal BBQ at our house with the team, who has brought a few souvenirs from Indiana for Lizzie- kind of a "Bon Voyage-Get Well Soon-Welcome Home" party. I'm sure we've all been to them.
Tuesday, August 8, 2006
We are not really sure how tomorrow will go. I know that after waiting a week we are a little more uneasy than we were last week. I think we tried to go about our normal routine as much as possible but I know I am a little more distracted. Nani managed to get into her classroom to prep for the upcoming school year and I gave a few lessons Monday and Tuesday. I have been taking a lot of pictures lately, maybe tomorrow during surgery I'll get around to editing and posting them. Either that or I'll be playing guitar in the hospital corridors.
In any case, we are supposed to be at the hospital at 6:00am for the 7:30 surgery, which means up around 4:30 and out the door by 5:15. Lizzie is asleep and I'm on my way, I hope...
Wednesday, August 9, 2006
Dr. Hanley seems very cool and collected while Nani and I feel like we've been through the ringer. I ask him if he had to postpone someone else's surgery due to the length of ours and he calmly answered that he was heading in for the next patient. I have no doubt that he is still in top condition. Earlier today I had asked one of the nurses how someone could be so focused under such extreme circumstances and pressure. She summed it up very succinctly, "There's God, and then there's Dr. Hanley."
They tell us that Lizzie will probably sleep through the night but we should be able to see her around 5:30. Nani and I head off to the cafeteria as we realize we have not had much in the way of food or water. We also made a few phone calls to relatives to let them know everything was fine.
Quite a few relatives have arrived and they take turns checking on Liz in the ICU. Around 8:00 Lizzie seems to be waking up and is really mad about the ventilator tube stuck down her throat. She tries to move her hands to pull it out and we have to hold them. The doctors would like to leave it in until they are sure she can breathe on her own. One of the nurses looks at the clock and remarks that had it come out then, it would have set a record for the shortest time a kid spent on the machine after surgery in this ICU. Knowing my kid, I suspect she heard this and the competitive juices might start kicking in. Sure enough, a few minutes later it is taken out and we think she can put this record on the trophy shelf. A small but important 1st step on the road to recovery.
Thursday, August 10, 2006
By noon they say she is ready to leave the ICU but there are no beds available in the regular rooms so she is moved around the corner to clear some space for more critical patients. We knew she was tough and in great shape and it is really showing in how fast her recovery is progressing.
Earlier this morning I was telling one of the nurses, Stephanie, about our softball lives. She mentioned that she had played in high school and wishes she had never stopped. Pretty soon another nurse who had played got involved and it almost felt like we were hanging out with the Lady Sharks, or maybe their parents or older siblings. It definitely cheered Lizzie up. I have to say the response from our softball buddies has been phenomenal and Liz really appreciates the emails, although it is a little difficult for her to respond to most of them now. She sends special thanks to the California Rapids and the Georgia Impact.
We had plenty of visitors this evening and that gave Nani and me the chance to go out for a nice dinner. We stepped across the street to the California Cafe and managed to reconnect and refuel by ourselves. We are very fortunate to have so many friends and relatives nearby offering their love and support.
Tangent Alert- I have to mention that my 1st and last drives of each day have been pretty cool. Each morning around 6:00am as I drive to the hospital I have been treated to the full (or nearly) moon setting and each evening as I drive home around 10:00pm it is rising again. This morning, as I approched Stanford, the sun was rising as well over the golf course. Some common astrological events and some great tunes on the CD player have helped keep me in a great frame of mind as our story continues. Back to your regularly scheduled programing soon...
Friday, August 11, 2006
A little after 11:00 we load up her stuff and start navigating the hallways, pushing a somewhat cooperative bed. After parking in a few main aisles, creating a rush hour style traffic jam, and knocking over some once valuable equipment, we arrive on the 3rd floor and set up camp in room 3215. It is a lot less hectic and noisey here than in the ICU. They tell us she has 1 more tube that will stay in until tomorrow, and we may be going home Sunday. She also has to work on some breathing exercises. She is warned that this will be painful and difficult but is a very important step.
By 11:30 Nani is ready to head home for a much needed nap. We go down to the garage to rearrange some supplies and when I return we have visitors. One of Lizzie's school buddies, C. J. and his dad, Bruce have found their way to her room. Their visit definitely cheers her up- the smile is starting to return to her face. Warning to any other visitors- they had a difficult time finding us as Stanford Hospital is huge and laid out like a maze, be sure to follow the signs to the Lucile Packard Children's Hospital. It is now 1:30, Liz has had lunch and seems to be on her way to a nap as well. I guess I'll have to get with that plan too.
Lizzie and I had a pretty quiet couple of hours and around 3:30 the nurse tells us they need another echo-cardiogram. We get Liz up and she walks to the elevator, which we take down to the heart center. She does a great job on her feet for the 1st time. Dr. Silverman finishes the echo and we take an express wheelchair ride back to the room- pedal to the metal for 2 reasons- a technician who was late for a date (at Target no less) and a patient who had to go to the bathroom. Back on the 3rd floor they have decided to move us again, this time to a private room. We settle down in 3245, for the time being.
Things are again pretty quiet after dinner and I have a chance to work on a page of photos- Check out The Photo Gallery.
Saturday, August 12, 2006
I think today will be visitor's day. Visitor's hours are 11:00-8:00. Children's Hospital is at 725 Welch Rd., just off Sand Hill near the Stanford Shopping Center. Visitors should park in the main lot ($5 for up to 6 hours), get a visitor's badge at the entrance, take the elevator to the 3rd floor, take a quick right just past the day lounge and room 3245 is right there. The hospital does not allow flowers or latex balloons.
About 10:45 Liz falls asleep and I finally get control of the TV remote. One of the hardest parts for me is the constant din of Nickelodeon and ABC Family shows in the hospital room. I manage to get my fix of tennis on ESPN for a little while. It brings back memories of watching hospital tennis when Cory was born- Martina Navratilova at Wimbledon in 1988 as I recall. Oops, I should have sent out Tanget Alert #2.
There are quite a few kids roaming the halls, including 2 kids who had heart transplants last week. I forgot to mention that the day Lizzie had surgery the hospital was packed with news crews and families giving interviews. Dr. Bruce Reitz had done 3 transplants in 36 hours last week. I met one of the dads, Gary, yesterday and he had a plastic bag with what looked like a radiator part in it. Turns out it was a Berlin Heart that had kept his son Ben alive for 51 days while they waited for a donor.
Over the next few hours most of our family and many of our softball and volleyball friends show up to say hi. Everybody shares a cupcake cake (you'd have to see it to know what I mean) and enjoys a big, loud balloon (again, you'd have to see it... or be a big fan of "Don't Worry Be Happy"). Around 6:00 I head home to pick up Rebecca and a couple of her friends, Angela and Julia, for an evening visit.
As I sit here writing this around 10:00, Cory comes in and makes fun of me, accusing me of being a blogger. I'm not sure if this is good or bad. Then he tells me that he enjoys reading my ramblings. I'm not sure if this is good or bad either. In any case I have to say it has been fun and theraputic for me so I probably won't let the opinion of a misguided teenager with questionable genes affect me one way or the other. Now, if he was inundated with emails... well, never mind. I guess this qualifies as Son of Tangent material and I'd better call it a night.
Sunday, August 13, 2006
Earlier he had mentioned that we should expect some questions and concerns from Liz about the entire ordeal. We should be ready for some mood swings and possible depression. As if on cue, she came out of the bathroom pointing to her incision and said something to the effect, "I can only wear shirts that cover up to here," and then got very quiet and a little teary-eyed.
One of the doctors coming around this morning, seeing Liz for the 1st time, remarked in disbelief that the condition she had is rarely repaired because there are usually no symptoms until it is too late. From our point of view the scar will be a treasured souvenir and a constant reminder of just how lucky we were.
Around 12:30 they come in with the paperwork, we load all the stuff onto a wheelchair (which means Lizzie has to walk), and head downstairs. It almost seems like we are leaving too quickly now. I have that feeling like we may have forgotten something or somebody. I manage to get over it, after all we are not that far away, and after twisting Lizzie's arm into a going away picture in front of the hospital, we're off.
Monday, August 14, 2006