MRI at 2:15pm

The MRI is schedule for 2:15 p.m. Riley is still in good spirits, but starting to get hungry. He's watching a Frog & Toad DVD. Next few hours will be tough.

Yesterday when were in the Redwood City ER awaiting transport to Santa Clara, I ran out to Whole Foods to get some dinner for the four of us. On the short drive over there, I was rear-ended at a stop sign by a woman who wasn't paying attention. There's some damage but I can drive it. Fortunately nobody was hurt (she had two kids in the backseat.)

Riley's back in the hospital

Just a quick note since my connectivity is flaky. Riley has been sick for about a week complaining of stomach pain and dizziness. He had an abdominal ultrasound and an albumin test and everything came up normal. But yesterday Suzanne noticed his left eye was droopy. His after-school provider called in the afternoon to say she'd noticed it and Riley needed to lie down.

We called the doctor and cardiologist and they asked that we bring him in. Since Riley has a history of blood clots, there is concern. By the time we got him to the doctor, the droopiness had stopped. They did a CT scan and things look okay. But as a precautionary measure, they transported him by ambulance and admitted him to the PICU at Kaiser Santa Clara. The plan now is to get him in for an MRI. Of course, that will require sedation since he'd need to hold perfectly still for an hour. He has been NPO since 2 a.m. while we await availability from the MRI lab. I spent the night with him in his room and Suzanne took Carter home.

Best case: we get in for an MRI today, things look fine and we can go home. That's what we're hoping for. Suzanne is here now, Carter is at daycare. More updates when we have them.

Talking to Riley's classmates about being different

About a month ago, Riley started complaining about physical education (PE). At first it was subtle - "there's too much running." But after a few days I noticed that his head sunk a little lower on PE days. He also talked about frequently getting a drink of water, which we suspected was a covert way of resting. Eventually he came out with it: "I don't like PE and I get too tired." We encouraged him to tell his PE teacher that when he needed a break, and we reminded his classroom teacher about his condition. Both of them have been very aware of Riley's limitations.

But one day, Riley reported to his after school care instructor that the kids had been picking on him and calling him "slowpoke." We discussed it with him one evening and he broke down in tears as he talked about how hard PE was, and how much he wished he could run and jump like the other kids. We asked him if it would be okay to have a meeting about it with his school, and he agreed.

We decided it was time for a Section 504 meeting at Riley's school. Federal law gives children with disabilities the right to reasonable accommodations that will ensure equal opportunity in school activities.

Despite the necessary legal formality, the school principal, Mr. Triska, and his classroom teacher, Mrs. Mecchi were terrific. They told us what we already knew: Riley is very strong academically, is one of only two readers in the class and displays exceptional social skills and behavior. Because he becomes winded easily, he often falls behind when the class is walking in a line, especially when they climb the hill to music, the playground and PE.

After discussion, we agreed that Riley would have modified PE. Riley will have the choice to participate in PE or an optional activity. Depending on the day, it could include: going to the library, returning to the classroom with his teacher, or even helping out in the office (I'm sure Riley will be an excellent filer!) So far Riley has chosen PE a few times but opted for library time on some other occasions. He is much happier now that he's in control.

We also decided to talk to the class directly about Riley's heart. Riley will know these children his entire life and we want him to be proud of who he is. So this morning Suzanne and I joined Riley's classroom for a circle time discussion about Riley and his heart. I started off by asking the kids if anyone had had surgery or been hospitalized, knowing that one girl recently had eye surgery. I then explained how the heart works, and we talked a little bit about that.

Then Riley talked about how he has had five surgeries to fix his heart, and the kids asked all sorts of questions: did it hurt? how did the doctors do it? did you get stitches? Then Riley read one of his favorites books to the class - Mr. Rogers' Going to the Hospital. He did great, reading several pages perfectly until Mom took over and finished the book. He also showed off his scar. One of the Dads who was volunteering today talked about how he had a scar just like that from heart surgery ten years ago. Finally, we explained that Riley's heart means he gets tired more easily and sometimes needs a break from physical activities, but that otherwise he's just like everyone else, that we're all different in interesting ways.

All in all, it was a good experience. It was amazing to see our confident little guy talk proudly about who he is and what makes him different. Although it's something we knew we'd have to face, we just didn't expect it so soon, and the recognition that our boy is growing up is another reminder that thinking about Riley's future can be bittersweet.

First day of kindergarten

Riley started kindergarten on Monday!

Cardiologist check-in

It's been a while since we've posted about Riley's health, which is A Good Thing. He just finished his first season of t-ball and is almost ready for kindergarten in the Fall. We're all looking forward to a summer vacation in Cape Cod with the Norton in-laws. Other than occasionally feeling tired and being a bit slower and smaller than his peers, life has been reasonably normal.

We went to San Francisco for an echo and appointment with Dr. Tarnoff this morning. Riley's oxygen sats were 81% which is basically unchanged since the Fontan takedown. Tarnoff says the valve is still "mildly leaky" which is also good news. He reduced his Lasix and aldactone dosages and plans to see us in six months. Also, at our request he switched Riley to a pill form of aldactone, which allows us to breathe a major sigh of relief. The liquid aldactone comes in a special compound and needs refrigeration. It also needs to be refilled every few weeks. Not only does it make traveling a hassle, the Kaiser pharmacy can never seem to get it right. Most of the time the compound hasn't been filled when we arrive and/or the attendant can't find the prescription. Pharmacists these days spend most of their time punching buttons and filling pill jars, so what used to be a regular day's work -- crushing, stirring, measuring and mixing -- now baffles them. So pills are good.

Dr. Tarnoff recapped Riley's condition and outlook: either oxygen saturations will drop or the valve will get worse and "something else" will need to be done. Initially they will use medications, then surgical interventions, then ultimately a heart transplant. Nothing new here. But Tarnoff did say something we haven't heard since the Fontan setback. When talking about time and the uncertainty of interventions, he said "one, to two, to three decades." It's the first time we've heard the word "decades" since Riley was on the Fontan circulation. Every little bit of encouragement counts.

One other little piece of trivia: Dr. Tarnoff mentioned that we don't know where Riley's appendix is. Since he is heterotaxic, several of his organs are flipped. That's something to keep in mind as Riley grows - if he ever needs an appendectomy the doctors might want to poke around a bit before they make the standard right abdominal incision.

A poetic moment

After breakfast the other day, Riley blurted out the following:

How fast does traffic go?
Does it speed away or go slow?

Maybe he'll be a writer just like his mom.

Riley has a check-up with Dr. Tarnoff Monday morning. He'll be having an echo and his appointment will follow.

Cough remains, but much better

The vomiting must have been the last hurrah of the pneumonia. Since then Riley has been feeling much better and has had significantly more energy. He still has a rough cough, but it does not seem to affect his mood, his breathing, or his ability to sleep. We are all very grateful for this speedy recovery. As long as he continues to be energetic and the fever does not return, I'm thinking of sending him back to school either tomorrow or Wednesday. Hopefully tomorrow.

A bout of vomiting

All in all, yesterday was a good day. Riley was slightly more energetic and was even getting into a bit of trouble with his little brother. They were shouting at each other--an annoying game they have--and I decided that kind of game was best played outside.

They were out there for about 10 minutes before I decided to go join them in the yard. When I got out there, Riley was holding his tummy, saying that he wasn't feeling well. Then he started throwing up. Four times. And it wasn't a coughing fit that set it off.

He hasn't eaten much in the last 10 days, so it was disheartening to the see the little remains of his lunch on the lawn. Not sure what to make of this episode. I'm hoping we can just chalk it up to a little too much excitement.

Albuterol prescribed, slightly better

The cardiologist gave the green light yesterday for Riley to get the Albuterol inhaler. After some hesitation, Riley has been doing great with it and it seems to be helping.

Riley actually slept soundly last night--a drastic comparison to the previous night when uninterrupted sleep was infrequent--and actually was a teeny, tiny bit smiley this morning. The smiles didn't last long, but I did see them for a couple of minutes.

The cough is still frequent today, but it seems that it might be a little less intense, with less gagging. I have not taken his temperature today because he hasn't seemed grumpy enough for me to think he's running a fever. Overall, it seems that Riley is getting better.

Unfortunately, he will miss his second tee ball game tomorrow. If he's feeling up to it, we are going to take him over to the park so that he can at least watch his teammates play. I also hope that by next Wednesday, he'll be able to go back to school. It's been a long two weeks at home.

Pneumonia in both lungs

It's been a rough couple of weeks here in San Carlos.

Carter was sick for five days with a fever, conjunctivitis in both eyes, an ear infection, and an upper respiratory infection. He's been on a significant dose of antibiotics since last Wednesday evening.

The next day, Riley started to feel sick and ended up with a fever as well. We didn't think much of it because Carter had just had a nasty cold. Anyway, on day 6, Riley still wasn't improving. I called the advice nurse at Kaiser and she wanted me to take him to the ER, since he was having a little bit of labored breathing. We decided not to do that because he showed improvement after some Tylenol reduced his fever and his breathing became more natural and relaxed.

This morning I took him to the pediatrician and he could hear crackling sounds in both of his lungs. We were sent for a chest x-ray and there was quite a bit of white wispy marks on the x-ray confirming "double pneumonia," although he said that the right lung was worse than the left lung.

He was prescribed azithromycin (a powerful antibiotic), and we will go back tomorrow late morning for a follow-up appointment. He may end up with an albuterol inhaler, but it causes an increased heart rate and we wanted to avoid that until Dr. Tarnoff gave it the green light.