Lizzie's Story
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. As of 2019 she is a very healthy young adult!
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
After 2 seasons together, the San Jose Lady Sharks (Brian) get one of two Northern California berths to ASA 12u Nationals in Bloomington, Indiana.
The other berth goes to our sister team, Lady Sharks (Alex). The entire organization is very proud of our two 12u teams. We spend the next few weeks working very hard to be in top shape for the trip, scheduled for the first week of August. We scrimmage some of the best teams in NorCal and plan on playing up in a 14u tournament in Stockton the weekend of July 22-23. Late in the day we remember to wish Rebecca a happy 15th birthday, and have a great dinner at a nearby Mexican restaurant with a lot of the team.
Thursday, July 20, 2006
Lizzie, Nani and I check in at Stanford for a CT scan of her heart. They are looking for anything unusual in her coronary arteries, which have not been able to be seen in the standard echo-cardiogram test in the doctor's office. The cardio-radiologist comes in with a positive finding- something is definitely wrong.
Friday, July 21, 2006
We get the news from Dr. Lappen- there are 2 serious problems that will probably have to be dealt with surgically. Lizzie is to stay on the couch watching movies until further notice. She is grounded from any activity, obviously including softball- this weekend in Stockton, and of course Indiana is out as well. She can not even attend the games in Stockton, as the temperature will be well over 100 degrees the entire week. Her team will have to do their best without her. The next step is a visit to the cath-lab for an angiogram, scheduled for Tuesday, July 25.
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
It's funny how the gears can change- yesterday we were scrambling to get ready for some tournaments- Lizzie's in Stockton and Indiana, and Rebecca's in Pleasanton and Las Cruces, New Mexico. Now it seems that all we have is time on our hands, waiting to hear from the doctors who we will entrust Lizzie's life to.
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
Back to work- give some guitar lessons- try to explain the incredible situation to my students, friends and relatives. A lot of phone calls- mostly friends and relatives checking in, although somewhere in there my friends at NorCal ASA arrange a call to Lizzie from US National Team pitcher Jenny Finch (thanks Mike and John!). She is very gracious and encouraging in an unusual situation but brings a big smile to Lizzie's face.
Tomorrow we head to the hospital for a much more in-depth and invasive procedure.
Tuesday, July 25, 2006
They tell us they will be taking Lizzie to the cath-lab to get a real look at her heart. Nani and I wander around the hospital for a couple of hours after they wheel her in. Around noon, Dr. Stan Perry escorts us in to look at what they found. Following is my understanding at this point, not completely sure of some of the terms, and many of the details are still a little fuzzy.
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
We meet with Dr. Hanley and get a clearer picture. He is obviously on top of the situation and excited about getting a chance, or more accurately another chance, to make a huge difference in a child's life. Nani and I leave with the feeling that Lizzie will come out of this much better than new and will be able to look forward to a wonderful life. She should be able to make the 1st day of school in about 3 weeks and be back in the pitching circle in a couple of months.
Friday, July 28, 2006
Next trip to the hospital for the pre-op visit. Lizzie is mostly concerned about getting "stabbed" for blood samples but does ask about the scar she might have. She now knows she is having open heart surgery but luckily her main concern is whether she will remember anything. She is relieved to hear that it will be just like her cath-lab visit, which she doesn't remember at all. We are there for about 7 hours and even had a couple of pretty good meals in the cafeteria (yeah, hospital food, but it is Stanford). We leave feeling incredibly fortunate to be living in this part of the world at this point in time.
Saturday, July 29, 2006
Not really a whole lot to do today. Lizzie and I go to watch some of her old Branham Hills friends play a tournament in Livermore. We even manage to get a short pitching workout in. A few days ago I had asked Dr. Perry, who had done the cath work, how restricted her activities should be. The answer was that we should not do anything that ever made her faint. Well, generally softball was never the cause so I figured we might try a little. It was great to spend a little time on the bucket again. Dr. Hanley had also told us that activities like ping pong or throwing the softball would be fine.
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
Even less responsibilities today. Lizzie and Rebecca catch a movie, my friend Bruce and I take in a women's tennis match, at Stanford of all places, Nani and Cory spend the day relaxing... torn between TV and napping. The good will messages start coming in as word has spread and Lizzie seems to get a kick out of having her own email account. Thanks to all of our old friends who are checking in!
Monday, July 31, 2006
Another pretty quiet day as we wait for the hospital trip Wednesday. We manage to get the whole family together at once (including the mysteriously seldom seen brother, Cory) and have lunch at Chili's, and try to go about our normal lives. I see many of my guitar students and the girls get in a little hitting practice. I got the word from Indiana that the team had a great 1st game, beating the Extreme, but the girls have already had enough of the heat and humidity.
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
Up early (4:30am) to get Rebecca on a flight to New Mexico where she lands in thunderstorms. Quite a change from sunny northern California. Lizzie spent a lot of the day on the computer trying to respond to as many messages as she could and was sorry she couldn't get to them all. She even hears from folks in Georgia who have started following the story. I can't believe the support we are getting from the softball community.
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
Here we go- We let Lizzie sleep as long as possible and she wanders out about 9:30. Perfect, just enough time to go throw a little and head to the hospital before she gets hungry. We spend a few minutes pitching at our local field, Alta Vista Elementary School, pack up a few things (clothes, guitar and 3 computers just in case we fight over them while we wait!), and drive off with the Beatles blasting in the car, A Hard Days Night to be specific.
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
The last word we got from the hospital was there was a chance we could get rescheduled for Friday, which would be great. About 9:45am we get the call that they can't get us in until next Wednesday, August 9, 1st thing in the morning. Obviously we are a little disappointed but we are still feeling very fortunate that this is even happening so we will have to find a way to fill the time. I think Lizzie and I will head out to Twin Creeks to catch some of the games at Western Nationals. I know she is craving some garlic fries anyway.
Monday, August 7, 2006
I have to apologize for the lack of updates but not much has happened over the last few days. Lizzie and I managed to satisfy our softball fix by spending the last 4 days at Twin Creeks watching the 10u and 12u teams. The news on the softball front is our team had a pretty good showing in Indiana, going 2-3 and losing a couple of close games. I can't help thinking they sure could have used her bat in the line up, as we seemed to be in every game.
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 spent the day trying to tie up some loose ends around the house before we switch into hospital mode. The Lady Sharks came over for dinner, swim, BBQ, ping pong, and just general hanging around. It was great! They brought Liz some souvenirs from Indiana, including stuff from the Louisville Slugger Bat Company- (you get eliminated a few days before your return flight, changing flights is really expensive, you look for field trips within a few hours drive... you end up in Louisville).
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
Not much sleep last night- I'm sure you are familiar with the problem of trying to sleep while anticipating a major event the next day, probably got about 2 hours. Left for the hospital (in 2 cars no less as we weren't sure what other things might develop during the day) about 5:25 and had a pair of pretty relaxing drives. A full moon was setting behind the Santa Cruz mountains as the Flower Kings "Blue Planet" was on the CD player... well, you had to be there. I was feeling very confident that all would be fine.
6:30 AM
We are checked in and waiting in the pre-op room, all systems seem to be go. Lizzie is looking for a sweatshirt and seems to be relaxed, although she does finally ask if they are going to open up her chest. We cleverly dodge the question and figure that many of the specific details of how they work on her heart are better not revealed until after the operation, if ever. We remind her that the whole thing will just seem like a short nap and before she knows it we will be next to her as she wakes up. It looks like I will be spending the day updating the story but I can't connect to the server from here so the postings will happen later. About 6:50 the nurses start arriving to chat and start her IV.
7:15 AM
The anesthesia team shows up and Dr. Hammer has arrived with his best jokes- "Did you hear about the fire at the circus...it was in tents!", followed by a few other tense jokes, well designed to lower people's tension levels. We all get a few laughs out of a couple of silly puns, not to be confused with the serious ones. They give Liz some sleepy stuff and wheel her off. They ask us to come back in about 1 hour to talk to Dr. Hanley before he goes in. We head down to the cafeteria for coffee and muffins with Nani's Aunt Gloria, who has decided she can't go to work today and needs to hang out at the hospital.
9:30 AM
I remember I was supposed to call the house to wake Rebecca up around 8:15 so she could get to a 9:00 conditioning workout for the high school volleyball team. Cory picks up the phone, in a tone that accompanies anyone being disturbed in a deep sleep, and mumbles that she must have gotten a ride because her bed is empty. Later in the day when I spoke to Rebecca she tells me that she slept until 10:00 and must have been in bed when Cory came looking for her. And to think I get accused of not seeing things that I am looking for. Apparently in males this is fully developed in the teenage years.
10:00 AM
Dr. Hanley finds us in a courtyard and stops by to say hello and ask if we have any questions. We chat for just a few minutes and feel very reassured that Lizzie is in the best hands possible. He tells us he will be a few hours and we'll see him as soon as he is done, and that we'll see Liz about one hour later.
2:00 PM
Not much to report yet. We have been filling the time walking around, reading, visiting the cafeteria, and visiting with Nani's aunts, Caroline and Gloria. I manage to change strings on my guitar and play for a little while in the courtyard but by noon it's getting a little warm and we head in to the surgical waiting area, hoping to hear from Dr. Hanley soon.
3:00 PM
Nani and I are now quietly nervous. They had told us the surgery should take about 5 hours and we are into the 6th or 7th hour as far as I can tell. We are trying to keep thoughts about some of the more painful possibilities as far in the back of our minds as we can. It is getting tougher.
3:25 PM
A nurse comes looking for us with a little news, all is going fine. Dr. Hanley should be out in about 90 minutes and we should see Lizzie around 6:00. All four of us breathe a huge sigh of relief and start talking again. The mood is definitely lighter. Gloria and Caroline go for a walk and come back with chocolate, disappointed that they don't have cocktails available in the gift shop.
4:00 PM
As I am writing the story about Cory and Rebecca above (9:30 entry), Dr. Hanley appears and says everything is fine and they accomplished everything they needed to do. The reimplantation of the right coronary went very smoothly but the bypass proved a little more difficult as the arteries were a little smaller than they expected. They were able to use two mammary arteries to replace the blockages but they still don't know how they formed in the 1st place.
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.
6:00 PM
We head into the Cardiovascular Intensive Care Unit hoping they are ready for us and get the OK from the nurse. Liz is resting comfortably with a whole bunch of tubes coming out of her. They want to keep her asleep until they take out the breathing tube either later tonight or tomorrow morning. She looks really good and Nani and I are thrilled and relieved to be with our baby again.
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.
9:30 PM
She has been complaining about being thirsty since the tube came out and we have to convince her that she is not ready. She gives in after the nurse threatens to put the tube back in and is finally given some lemon swab things- imagine a vinegar soaked cotton ball on a stick. She is beginning to come into focus and I am feeling like we are starting to get out of the woods. It's now a little after 10:00 and I am heading home for a few hours while Nani takes the night shift here.
Thursday, August 10, 2006
10:00 AM
Quick update- Liz looks great and is wide awake and hungry. They tell her she will probably get to eat by lunch time today. We also hear that she is almost ready to be moved to a regular room, they had told us possibly 3 days originally. Gotta run- I'm taking Cory and Rebecca up to see her now. She should be ready for visitors soon!
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.
10:00 PM
After three round trips to the hospital today (about 30 minutes each way) I am a little fried, although I have to tell you Nani and I are amazed at Lizzie's recovery. Again, had there been a bed available, she would have left the ICU in less than 24 hours. It was especially clear that she was well on her way back when I tried to crack some silly jokes and all I got from Liz was, "You're stupid." I know we are all hoping she'll be her normal self soon but maybe I should have asked Dr. Hanley if we could have gotten an attitude adjustment to go along with the coronary adjustment.
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
I head to the hospital about 9:00am to relieve Nani, who has spent the last two nights in the hospital. I arrive at 9:30 and they have started disconnecting most of the stuff attached to Liz to get ready to move her upstairs to a regular room. She is in some pain from the removal of two drainage tubes in her chest and holds one of the attending doctors, Fred Tibayan personally responsible for her discomfort. He is now added to a very long list of people who have crossed her one way or another.
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
7:00 AM
Nani and I got a great night's sleep last night as her mom, Gerry came in from Reno and wanted to spend the night in the hospital with Liz. I might even have time for a short bike ride or work out before we head back up to Stanford. We are hoping they can remove the last drainage tube from her chest today. We were told that was one of a few things that had to happen in order for her to go home tomorrow. Another is she has to be working hard with the breathing meter. It is still pretty painful but she has to practice inhaling very deeply. Her lung capacity and strength are measured by a little float that she has to keep in the middle of the meter as long as possible. She's a kid who likes challenges and I am sure this will go well today.
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.
8:30 AM
I start feeling a little too antsy and like I have been away too long and decide to gather my stuff and head up there. When I arrive, I am surprised at how quiet the hospital is until I remember it's Saturday and there is a lot less going on- even the valet parking is shut down. Lizzie is with her grandmother, Gerry, and seems very happy and comfortable. She has been eating well and working on her breathing exercises. Today we have to spend a lot of time taking laps around the floor to help the chest tube drain, and increase her lung capacity. The tube is probably not coming out until tomorrow so now it looks like we will be here until Monday.
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.
11:35 AM
Lizzie wakes up (which means we are back to ABC Family shows) and she is a little on the grumpy side. It may be because she is off most of the pain medication but it's more likely just another signpost on the recovery road. I convince her to talk a walk around the floor and she complains but seems to have no problems.
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.
1:00 PM
We seem to have slipped through a karmic crack- yesterday they brought Lizzie two lunches, apparently one must have cost us today's as still no sign of the lunch wagon. As we all know by now, food is pretty high on Lizzie's priority list and she is not happy. At 1:40 they come by with good and bad news- the good news is they are taking out the chest tube, which means we might be back on a plan to be discharged tomorrow. The bad news comes in two parts- lunch arrives with nothing she likes on the plate, but worse, she needs a pain killer for the tube removal which means no food right now anyway. Luckily we get some volunteers to run for chicken nuggets and Lizzie is pumped when they get back around 2:25. After lunch we will try another lap around the halls.
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.
7:00 PM
By the time we get back to the hospital Nani's mom has returned with dinner from a nearby restaurant, Ohana Hawaiian BBQ, and everybody enjoys some home cooking. Lizzie is especially fond of spam musubi and wolfs down a couple. The three teenagers have a great time testing their lung capacity on Lizzie's inhaling machine. We pull the plug on the activity when Julia breaks everybody's records and nearly passes out. It looks like it's time to take them home. We decide the plan for tonight is for Nani to stay for what we hope is the last night.
The last word we got from the staff is they are pretty confident Liz will be going home tomorrow as her progress has continued to be outstanding. A little earlier one if the nurses, Angelina ordered Lizzie to take a lap around the floor. I had pleasantly asked Liz the same thing myself but she occasionally has a hard time taking direction from me- this wouldn't surprise anyone who has ever seen the two of us on the softball field, but I digress. In any case, Liz was back at the door in a couple of minutes and when asked incredulously if she had gone all the way around she insisted she had taken two laps and left her grandmother and aunties Annie and Janet (my sisters) in the dust. I think she is well on the way to competing with kids her own age.
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
8:00 AM
Short and sweet for now- good night's sleep, getting excited, heading for the hospital hoping to bring the baby home.
9:30 AM
Dr. Perry and a small group come by and tell us they need one more chest x-ray and if all looks good we can go. We walk Liz around for a little while and she is moving fast, more interested in getting it over with than enjoying the rehab aspects of it. At about 10:30 we take a trip down to the radiology lab and now just have to wait for Dr. Perry to check the x-ray.
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.
11:00 AM
The mood has improved a little as Liz is back in bed with the remote control in one hand and the computer on her lap checking on today's messages. Her smile starts coming back as she finds some very positive emails from some school and softball buddies. Thanks again to everybody who has been checking in.
11:55 AM
We get the word from a doctor that they are sending us home! Lizzie has started saying she's ready to go so we start packing up, although I think there is a lot of red tape ahead of us and it might be a little while. One of the transplant kids, Ben, and his family are on their way up to the roof and I decide to tag along. It is a beautiful day here in Northern California and it is great to trade positive stories with another family thrilled to have a new lease on life.
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.
2:00 PM
We pull into the driveway, head into the house and not unexpectedly Lizzie heads straight for the refirgerator. Right now she is enjoying some chicken enchiladas, courtesy of Sheila Billings and Patti Hill, and back in front of the TV. I'm not sure when I'll get back to updates, right now I have to wrestle her for the remote.
Monday, August 14, 2006
The post-hospital story is continued here... The Story Continues
Triple Crown Championships |
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NorCal Championships |
Salinas, Spring 2005  |
