Lizzie's Story Part 2

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Monday, August 14, 2006
After 5 days in the hospital we are now at home and start getting back into our normal routine. Lizzie is still asleep at 7:15 as I drag a groggy Rebecca out of bed to get to the 1st of 3 days of volleyball tryouts at Leigh High School.

Liz gets up around 8:30 and says she slept well but is a little sore in the chest. The last 2 days in the hospital she was only on minimal Motrin and seemed to be relatively comfortable, although they sent us home with Vicodin just in case. Her prescribed medications include daily doses of amlodipine and aspirin, as well as an iron supplement. The pain relievers are up to her and she seems to be happy with the Motrin today.

Our next medical check up is scheduled for Wednesday with Dr. Lappen. We haven't spoken to her since Friday, July 21 when we got the results of the CT scan. Unfortunately, she had to leave town for 3 weeks that afternoon. I believe her last words to the Stanford doctors were something along the lines of, "Please have this done by the time I get back." She apparently carries a lot of weight around here, evidenced by where we are now.

Liz is supposed to take a few walks a day and continue her breathing exercises, which mostly consist of measuring how much she can inhale. This morning she managed to register about three times the level she had yesterday evening, but it still is pretty painful. We did get her up and talked into walking around the block. She complained, mostly from being taken away from her movie- I believe she is watching Sandlot, repeatedly. At 10:00 I mentioned to her that I was going to pick up Rebecca at the gym. Lizzie jumps up and yells, "I want to go." In case I didn't mention it before, Liz is a field rat- she loves to hang out at the softball field even when she isn't playing, it's her stomping grounds. If the field isn't available, the gym will do. I figure we're on to something, as at least she will have to walk from the car to the gym when we get Rebecca. When we get there she is puzzled as to why we park so far away.

The rest of the day is a normal August day in the Hogan household. I head off to give some music lessons. Nani and the girls lounge around watching movies and playing computer games. Cory gets up around noon and wanders around until he goes to work at Lunardi's grocery store around 3:30.

Late in the evening, Lizzie had been out walking with Nani. They stopped by her friend Calvin's house and he came over to visit. I think they had fun hanging out downstairs, watching a movie. We had an interesting walk back to Calvin's around 10:00pm. Our 2 cats, Mu-Shu and Potsticker, decided to accompany us. They are small cats with noisy bells on their collars... oops! --I was worried that the post-hospital story might degenerate into a reality show. Enough, enough--

Tuesday, August 15, 2006
Today I spent a little bit of time on the phone with the administrators at Union Middle School, where Liz will be starting 7th grade next Wednesday. We are not sure how much she will be able to handle only 2 weeks after surgery. They tell me her daily schedule will start with band (she plays the saxophone) and PE before she goes into her 4 core classes. I don't think she'll be blowing on the sax or running the track just yet so she might be able to go in late in the morning for 2 classes, come home for a rest at lunch, and if she's up to it go back for the other 2 classes. Otherwise, she might do the morning classes one day and the afternoon ones the next. In any case we probably need to recruit some friends to help her carry stuff around as the doctors said she shouldn't pick up anything heavier than a phone book for 6 weeks.

Lizzie is getting very comfortable being back in her own bed, watching movies and staying in touch online. During the week that the surgery was postponed Nani and Liz painted her room. The plan was to paint and clean but somehow cleaning has proved too ambitious. The best I can say is it was reorganized, or maybe redisorganized. Either way it is still an adventure getting from the door to the bed. The little obstacle course is good exercise I'm sure. Now we just have to find room for her new collection of stuffed animals and mylar balloons. Those things last forever- I think we still have one around here that says, "Congratulations! It's A Boy."

Wednesday, August 16, 2006
One week after surgery and you could run into us at the grocery store and never suspect what has transpired over the last 7 days. We are amazed at Lizzie's recovery and excited about our appointment with Dr. Lappen this afternoon. I'm sure that most people who have heart surgery have other compromised systems in their body. We are unbelievably fortunate to have a very athletic kid in great shape with no other problems.

As I have gotten back to a normal schedule of lessons over the last few days I have a hard time believing that we just spent 5 days at Stanford going through the whole ordeal. It definitely seems surreal, like foggy dream or a short trip to the Twilight Zone. I am very happy that I kept this log as I can barely remember most of the details I documented last week.

Around 1:00pm Lizzie and I head down to pick up Rebecca after the last double day tryout. She has made the volleyball team and we decide to splurge with lunch at Safeway. We run into a few friends who are glad to see her as many of them have been following along online. She gets best wishes and I get chewed out for not posting daily since Sunday night. Just as I'm explaining that I should have something to report after our appointment with Dr. Lappen, I get a call from Nani saying it has been postponed until tomorrow due to an emergency. A little disappointing but I definitely have a better appreciation for the work she and her colleagues do than I did a month ago. We are rescheduled for tomorrow at 2:00. Lizzie hopes the small stitches where the chest tubes were can come out then as the string bugs her.

Thursday, August 17, 2006
We see Dr. Lappen at 2:00 and she has a lot of information. The 1st thing is the stitches are not ready to come out. Liz is bummed but the alternative, having the skin separate leaving a bigger scar, doesn't seem too apppealing. She also tells us she might need to take the 1st few weeks off of school. This is also bad news. We were hoping to go part time for the 1st week or 2 then onto a normal schedule. I tell Dr. Lappen that we live right next to the school and have spoken to the staff about Lizzie's situation, thinking she might go to just 2 classes each day for a little while. I am usually home during the day and it would be easy to be there on a minutes' notice but she wants to hold off on that decision. As it is, we need to see her again next Wednesday (the 1st day of school) to have the stitches removed anyway. We can renegotiate then.

Dr. Lappen also tells us of a phone call she got from Dr. Hanley just after she returned from her vacation, last Friday. It sounds like he was thrilled that she had referred Lizzie to Stanford for the CT scan, which led to the opportunity to fix her problem. She brings up a couple of recent local situations where kids were not so lucky and doctors never got the chance to correct the problem. I can't seem to get over the fact that this surgery is so rare because there is not usually a second chance. I look back on all the fainting episodes, which we started taking somewhat lightly, and realize that most kids only get one. The one that really stands out is one afternoon when Lizzie and I were alone, running at the field and she went down. As I was moving her arms and shoulders around trying to keep her awake, she mumbled, "I'm gonna die." I remember telling her that she would be fine in a few minutes. Fortunately, I really believed it at the time. It is now hard to look back at all those episodes and face the fact that any one of them could have been fatal. I am having a hard time thinking about families who were not as lucky as we were. I have never been particularly religious but have always felt very spiritually connected. Maybe there is a master plan after all. Later in the day, as I was mired in this philosophical funk, a parent of one of Lizzie's friends summed it up pretty well, "Lizzie is just too stubborn to die," she said. Amen.

Friday, August 18, 2006
A relatively relaxing day around the house. Nani goes to work to set up her 1st grade classroom, Rebecca goes to volleyball practice at 8:00, Cory sleeps in, but Liz wakes up with a headache. This scares me probably more than it should because she never complains about stuff like this. We even spend about 15 minutes searching for a thermometer, which I'm sure we have somewhere but never need. No temp but the Motrin doesn't seem to be working. About the time I think I might call Dr. Lappen's office, they call us. Nothing really important but they needed help with details for a form they were filling out for me about a refund on our tickets to Indiana. By the time we are done, Liz is in the kitchen looking for leftover tacos, courtesy of our friend Livia Neef last night. This is the universal sign in the Hogan household that all is well.

Around 10:00 Liz and I head over to the high school to pick up Rebecca and notice a lot of people at the middle school. She remembers that today is orientation day for the incoming 6th graders. I file this info away and figure it will be a good excuse to get her out for a walk when we return. Sure enough, when I suggest a walk over to the school to see what's going on she's unusually agreeable. We run into a few friends along the way and stop to chat. When we get to the school she spots one of last year's teachers who innocently asks, "So Lizzie, what did you do on your summer vacation?" At this point I need to mention another aspect of Lizzie's personality. She is the type who always has to have the biggest and best story. If you tell her you learned to surf in Waikiki she'll top you with her North Shore stories (not that ever she's been on a board, but you get the idea). To be able to casually shock an innocent questioner with an answer like, "Oh, I had open heart surgery," fits a little too comfortably into her conversational patterns.

We have a great time visiting and trading stories with folks at the school but have to head home to rest. As it is, it's time to take Rebecca and the volleyball team to Great America (a local amusement park) for a bonding trip, then we're off to a Lady Sharks pizza party. Our softball world has pretty much become a year-round commitment and we are getting together with the team we have spent the last 2 years with tonight before tryouts for the next season, which start in two days.

Lizzie is very excited about spending time with her teammates, although we are not sure how long she can hang out in the pizza parlor. She seems a little shy as we walk in but soon is hanging with the team like nothing is different than before. It is really great to spend some time with the families we have been with for so long. After about an hour there she finds me and says we have to go. She is definitely tired.

On the lighter side, the cake for our special occasion was thrown together by a bakery not too well in touch with the local youth softball scene. We had asked for a cake for the Lady Sharks, and if they had no softball girls for the top maybe they could at least get boys playing baseball. We got hockey players and nets. I had heard there was a hockey team around here with a similar name but ... Happy Birthday Wanda June?

A few hours later it looks like we might have overdone it. Lizzie got a fever (102F) that stayed with her for a couple of hours. This, combined with yesterday morning's headache, has us a little concerned and we call the hospital. The doctor on call tells us to check her incision for any sign of infection but it looks fine. He tells us not to worry unless the fever is still high in the morning. By 11:00 she is asleep, although still pretty warm.

Saturday, August 19, 2006
I went into Lizzie's room about 7:00am and was a little nervous. We have been so overwhelmed by the recent events and were just starting to feel a little more relaxed about the whole situation. The thought that there might be complications now made for a rougher night's sleep. Luckily, she felt nice and cool and seemed to be very comfortably asleep. Another one of many sighs of relief.

Lizzie has been asking about going out to a movie but we have been a little reluctant to let her visit the mall. We finally figure it might be OK to go to a theater that had a parking lot nearby. We are also not ready to leave her alone so Nani bites the bullet and accompanies the girls to see Step Up. Liz and Rebecca give it a thumbs up and Nani's only complaint is that it's too predictable- probably something that kids like in movies.

Later in the evening Lizzie and I get out for a walk. We plan on once around our block, which is about 4/10 of a mile. I know Liz can make it but once again Potsticker and Mu-Shu follow us. I am a little concerned about our little cats hiking that far but they don't seem to understand, "Go home cats!" When we pass Lizzie's friend, Calvin's house, we see him in the window and stop to invite him along. No problem I figure, as they can hang out at our house for a while. I had not counted on the two of them picking up the pace in the interest of catching an 8:00 TV show. This was not a problem for me but the cats were running out of gas. By the time Liz and Calvin were out of sight I was getting puzzled looks from the neighbors. How often do you see a grown man walking his cats? As it was, I even had to stop to let them rest a few times before I coaxed them back up. I can hear it now, "Animal abuser!"

Later on his mother is shocked to hear that he liked the tomatoes (heirloom) and might even try them again someday.

For dessert they dig into some of Lizzie's edible loot- A cold fruit basket from Lady Sharks' coach Mark Sawyer and a cookie bouquet from our neighbors, the Hideshimas. Overall a very fun evening.

She does have a hard time watching her friends field grounders and fly balls so Nani diverts her attention with a promise of Jamba Juice and off they go. She is smiling when she returns and delivers one to her friend/coach Linnie, just hoping she'll be invited to catch a few balls. Alas, not today, but everybody knows she will be back before we know it. For now, back home to take it easy, doctor's orders.

Wednesday, August 23, 2006
The last couple of days have been relatively uneventful as we are getting ready for school. Nani has been working in her classroom, Rebecca has been working out with the volleyball team, Cory has been his usual Mr. Charming at Lunardi's grocery store, and I have been spending time with my guitar students. Lizzie has been out walking a couple of times each day and seems to be having no problems. She has been concerned about the stitches in her stomach as one of the three seems to be separating a little. Yesterday we saw her dermatologist who said everything looked fine and not to worry about it. I'm not sure if I ever mentioned that she fights an ongoing battle with eczema but it was mostly under control in the hospital. Since she has been home she hasn't been able to shower so we have slipped somewhat in her moisturizing routine. She is definitely looking forward to today's appointment with Dr. Lappen to remove the stitches and give us a decision on school, which starts today. Last week we were not sure if she would miss a few weeks or be ready to go sooner, even if just part time. I think we have all lost some sleep over this and are a little nervous about the appointment.

We see Dr. Lappen around 9:00 and she is very happy with Lizzie's progress. Her incision is healing beautifully and her color is coming back. She has had no pain to speak of. She tells us Liz can go back to school for an hour or so, even today, which happens to be the 1st day of the year. We need to check up on her at least regularly but this is no problem as we live just around the corner from the school. Lizzie is pumped about being to see some of her old friends again and trade, "What we did on our summer vacation," stories. It is hard to believe that her surgery was only two weeks ago today.

The way her schedule is laid out at school is perfect- She has some morning classes that are not as crucial to attend (band, PE and a rotating elective) then her four core classes, two before lunch and two after. We figure we can take her to the 1st core class today around 11:15 and play it by ear. We also had been trying to schedule a family lunch out with the five of us over the last few days and decide to make it breakfast today. Seems like an obvious opportunity to Nani and me but when we call home to get Cory and Rebecca to join us we realize we had a couple of sleeping teenagers to deal with. A few phone calls later we are waiting patiently at The Flames and continually telling the waitress we really are expecting two more in our party. Eventually they show up and we all had a great, relaxing time just hanging out together- something that has certainly become less common over the last few years as the kids get older, more independent, and more involved in their own lives.

A little after 11:00 we check into the school office and head off to her class. Dr. Lappen had told us the only restrictions were no carrying anything heavier than a phone book and to stay away from anyone with a cough or cold. As we walk across the school yard Lizzie is greeted by many of her buddies but seems a little shy. We tell her she is going to have to come out of her shell and answer their questions as well as she can. In just a few minutes she takes off to say hello to Calvin and we yell across the lawn that we'll check back after class, in about 50 minutes. She waves goodbye with a familiar, "See ya' and get lost," look in her eye.

We return around noon, not sure if she'll be ready to come home or stay all day. We had already decided that two classes would be the absolute max for today but if she was the slightest bit tired we would take her home now. Not surprisingly she sees us coming, says she feels great and we should go home. I get a glimpse of the smile I have not seen for a few weeks- it is clear she is very happy to be back in the comfortable surroundings of school and her friends.

Another 45 minutes later we come back and get the same story- she wants to stick around for lunch. We had already decided that we would rather take her home too early than too late. We hope to make the other two core classes tomorrow so we are leaving, feeling like it was a very successful trip.

Lizzie spends the rest of the day around the house, then runs some errands with Nani and Rebecca, before finally getting into the shower late in the evening, something she has been looking forward to since getting home from the hospital. A day with nothing but positive milestones.

Friday, August 25, 2006
So Wednesday she tries two classes, no problem, Thursday she went to one class in the morning and then her two afternoon classes with a break at home in between. There are no signs of anything she has recently been through. I can't help but wonder whether she is really healing this fast or just running on adrenaline because she is so excited about being back to school and seeing her old friends. We decide that today we will try two classes before lunch and I will check back then.

A few minutes before I need to head over to the school I remember that I said I would bring her a sandwich so I ask Rebecca to throw together one of Lizzie's favorites- turkey, mayo, and bread- simple but tasty. Rebecca looks at me with a, "You have got to be kidding!" stare, but says she can probably handle the special order. I squeeze in a quick shower and when I return to the kitchen she is eating one of her own, "It looked so good," she said, as she was cutting Lizzie's sandwich into six perfectly matched pieces. She had to include a note, "Lizzie, I made this sandwich just for you. Hope you're sternum feels better. (signed) Rebecca K.K. Hogan- aka your sister whom you love."

I got to the school a few minutes later, handed Liz the sandwich, and she had a good laugh over the note. She told me she wanted to stay for one more class as she had a math test to finish, and we agreed that I would come back in an hour to take her home. It was great to see her hanging out with her friends at lunchtime, again looking as if nothing unusual had happened over the last two weeks.

I was running a little late an hour later and by the time I got to the office she was sitting there ready to go. It looks like today she did just the right amount of time at school and now we should head home for a little couch time. I continue to be amazed at her recovery but I think we both look forward to a weekend of rest.

Tangent Alert - Lizzie seems to be showing no signs of the kind of pain or discomfort you might associate with open heart surgery. This afternoon she brought up the fact that she needs a cell phone. I remind her that Rebecca got one around Christmas when she was in 7th grade, which is the grade Lizzie is starting now. I figure this will be good enough but I make the mistake of saying that she might get one when she can hit 56mph on the radar gun again. Turns out that this may go down as a, "What was I thinking?!" moment in my fatherhood experience-

Around 7:30 this evening, Nani and I were wondering what kind of pain a pitching motion might bring on. We asked Liz to come in and tell us what it felt like to hold her arms out extended at 90 degrees like before a warm-up pitch. "No problem," she said. Then, simulating a 1/2 throw, "No problem." At this point I have trouble believing her chest can't be hurting a little.

Sometimes when we can't get to the field we pitch bundled socks in the hallway so I suggest she try a full wind up, expecting some chest pain. She picks up a teddy bear that is conveniently sitting on the couch... "No problem," she says, as I try to avoid the kamikaze bear heading for my face. Ironically, the bear was a present from her pitching coach, Leann Emery. I smell a sinister plot developing and figure I will be in trouble if her doctors get wind of any of this... She may be "Trick or Treating" with a cell phone after all.

Monday, September 11, 2006
I really have to apologize for the lack of info lately. As you may have guessed, things are going really smoothly. As a matter of fact, since school started we are all pretty much into our normal routines. Unfortunately, my normal routine never included sitting at the computer and documenting the Days Of The Hogan's Lives for an hour or two. In a nutshell...

Three weeks after surgery-
By now Lizzie is going to 4 or 5 classes each day. I would take her to her Film & Lit class at 8:30 then bring her home (during PE) to relax for a little while before going back at 10:40 for English and Social Studies. Home again for lunch, then back at 1:00 for Math and Science. By the end of this week (Friday, Sep. 1) she seemed to still have a lot of energy left at the end of the day. She also had a 3-day weekend ahead to rest up so we figured we might try a little more next week.

Four weeks after surgery-
Pretty much the same schedule, except now after school she wants to stay and watch tryouts for the boys volleyball team. This is the Liz we know and love- any excuse to hang out where thae action is. I think her ulterior motive is really checking out the competition. Sure enough she comes home with a report. When I ask how they look, her reply is the expected, "Terrible!"

In case it's not obvious, Lizzie is very competitive. Last season she had a running bragging contest with her friend Danny over whose team was better, his baseball travel team or her softball team. The two of them had even tried to work out a game between the teams. She and I had discussed at length how we could work out the differences in the two games to level the field. I think we had a reasonable plan but fortunately some of the other logistics proved insurmountable and it never happened. Just as well to leave this type of rivalry as playground trash talking and not really settle it on the field.

On Thursday, Sep. 7, we saw Dr. Lappen for her 4-week check up. Lizzie had even asked if she could start PE, or at least running a little. She said still no stressful activity for two more weeks, mostly to let the scar heal as much as possible. She had told us that it would be necessary to keep sunscreen on it for about a year, even when it was covered by her clothes. We are now in the habit of putting some vitamin E and sunscreen on all the time. She also said that when we came back in two weeks Liz would be ready to start exercising and get back in PE. We probably wouldn't see her again for a couple of months after that. I am sometimes still in disbelief that this whole thing is happening so fast.

As far as the running thing- a few days ago Liz had told me that she was a little afraid to run, mainly because that was what caused her to faint. I told her that I would be there with her for a lap or two and assured her that everythng would be fine. As I said this, I was fondly carried back to many years of distance running in the hills when I was younger. As many of you know, I am not a small (or even medium) sized person and knees are not reallly designed to haul this much mass as far as I asked them to do for 20 years. Realistically, I'm sure Lizzie will be fine on the track, the bigger fear might be whether she can carry me home or not.

As I catch up to real time (back to Monday, 9/11) I have to remember to schedule an appointment with my orthopedic surgeon as I can see more knee pain in the future.

Six weeks after surgery, Wednesday, September 20, 2006
We have really been looking forward to today. We have an appointment with Dr. Lappen and are hoping she clears Lizzie to start exercising again. She has had about enough sitting around, although she has managed to fill her time with a few fun jobs, like working the scoreboard at school volleyball games. Of course she is chomping at the bit to bump the ball with the team- I think really just to show the boys who's the boss...

At about 9:00 we see Dr. Lappen and she asks Liz how she's been feeling and what she has been doing at lunchtime. Lizzie doesn't quite get that she wants to hear something like, "staying away from the playground and taking it easy," but I have to say that we have been really good about keeping her from any activity. I'm not sure whether this has been harder on her or me. Dr. Lappen says she looks great and can resume all her normal stuff, but to get back into it slowly and cautiosly. I'm thinking this means we grab her cleats and my bucket (which have been mysteriously packed in the truck) and head to the field but Nani reels me in and suggests we take her to school and let her try walking a lap with her PE class. OK, I guess softball can wait until tomorrow afternoon.

Thursday, September 21, 2006
Lizzie and I got out this afternoon and spent a little time throwing and jogging. She is still afraid of running because that was usually what caused her to faint. We started with about a 2-minute run just to see how it felt to breathe a little harder. I have to remind her that the doctors have assured us that the problem has been completely diagnosed and fixed and she won't faint again. As soon as we get her confidence back I know she will be fine.

Throwing seems to go fine as well, although after a few minutes she asked if we were just going to throw or try pitching as well. I am a little more interested in just light conditioning and stretching but she is anxious to give it a try. After a good warm up I get back on the bucket and she goes into a full motion. Her mechanics look pretty good but her control is a little suspect, the first few batters probably would have been hit in the knees. She threw about 20 pitches at about 75% intensity and we called it a day.

One one hand it seems like an awfully long time since we've been here, and on the other I find it hard to believe we weren't out just yesterday. I'm sure now that Liz will be back in shape in a couple of weeks.

Friday, September 22, 2006
Lizzie and I make what should be our last trip to Dr. Lappen's for a few months. She mostly wants to check her blood pressure so we can start thinking about getting off the follow up medications. She has been taking Norvasc since the surgery to keep her heart from having to work too hard. Her blood pressure has been consistently around 114/64 (don't we all wish...) and that's about where it is today. We will cut down and eliminate the Norvasc over the next week as long as it seems under control.

One of the last things we need for school is a note for the PE teacher. Even though the doctor's note excusing her for the 1st month of school has expired, the teacher insisted on a more formal note spelling out exactly what Lizzie could do. Dr. Lappen pulled out their form letter with about 6 levels of activity listed. The highest one was something like, "Cleared for all activity, including varsity level competitive sports." The next was anything but varsity level competitive sports. I think, seeing as how the kid is in 7th grade, we can live with that.

I dropped her off at school around 10:00, reminding her to hurry home afterwards as we had to get some running and throwing in. She ran off with the familiar look of, "Yeah right, dad." I finally had the sense that this was behind us and we are ready to get back to our normal lives.

In Closing ...
As we left the field earlier I asked her if she enjoyed her six week break from softball, hoping that any sense of burnout she might have been feeling had passed. She pointed out that she had a break until she was 5 years old and that was probably enough. I hope she will enjoy softball for a long time, and am confident she will. I know Nani and I are thrilled to know her heart problems are behind her she is ready to resume her very active and athletic life. We are definitely looking forward to enjoying the ride.

This pretty much wraps up this chapter, and I'm not sure there will be another in the immediate future. We will work on getting back in shape (both of us!), practicing with some Lady Sharks' teams, and plan on being back out on the field for the spring season. Thanks to everyone who has been following along and sending best wishes, prayers, and messages. If you see us at a tournament or on the field anywhere, please feel free to come up and say hello.

Neil (aka Lizzie's dad)