Brave boy and the blood test

I took Riley to Kaiser Redwood City this morning for the blood test to measure his PT/INR. I was up at 4:30 so I could get a ride in before I woke him up in time to hit the lab by 7:15. It was the perfect time to go - no line for check-in and no waiting for the test.

The lab technicians always give the kids little stuffed beanie animals. This morning Riley picked out a white seal and a moose. He decided he'd like to wrap them up and give them to Carter for Christmas, so we secured them away in his backpack. Riley was really brave, only a few tears when the needle went in. He was in great spirits afterward and I took him for his traditional post-test donut. We had plenty of time before school so we hung out in the donut shop and I had a coffee. We had a nice man-to-man talk, or as Riley corrected me "man-to-son talk."

Riley was at school and in the classroom before the second bell. Hopefully we'll be able to do home testing soon.

Coumadin and Fontan?

Riley had another TIA incident today at school. There was a message on our home machine that said, "I think we're having an emergency." I was in SF at the time and drove there as quickly as possible. He seemed to be doing much better when I got there, but was very sad and tired. He also said that he was "hot all over." It is possible that the coumadin could be having an impact on how he is feeling. He has had two doses so far. He ended up staying at the after-care program to sleep.

I spoke with Dr. Tarnoff (cardiologist), and he said that we need to get a referral for a pediatric neurologist for an evaluation, including an EEG. We need to determine if these incidents are actually TIAs or something else. Then Tarnoff started to tell me things I don't want to hear -- He said that he will also need to refer us to a different surgeon because Dr. Karl has left UCSF to go back to Melbourne. And why do we need a surgeon? We need a surgeon because we might need "another chance at the Fontan." And what does a Fontan have to do with TIAs? If these are TIAs, a Fontan circulation will no longer allow any direct blood flow connection between the body and the heart. Recall that Riley's current circulation (the Glenn) allows half of his blood to go through the lungs first and half of his blood flow goes directly to his heart. With the Fontan circulation, all of his blood will go through his lungs first, and not directly into his heart where blood flows directly into his aorta and on to his brain. The reason a Fontan would be good for TIAs is because the blood does not flow so quickly to his aorta and brain. I was not totally clear on that and will learn more, if we head down that road.

In the meantime, Riley will be on coumadin for the foreseeable future "until something new or better comes along or until he has another operation." Tarnoff told us back when Riley was recovering from his Fontan-takedown that someone at some point in the future will try to convince us to try the Fontan again, which I believe he told us we should not attempt. If he has another Fontan, what is to say he will not develop PLE again?

I know this talk of surgeries and PLE is getting a little ahead of ourselves, but it is starting to feel the way it felt in early 2007 when Riley was sick and puffy everyday and I kept calling the doctors to tell them something was wrong with Riley. Something is definitely wrong, and we're not sure what it is.

Back on coumadin

When Riley woke up Friday morning, he told Ken that he didn't feel well. We figured it was just Riley not wanting to go school for some reason. Anyway, not long after he got to school, Riley had another incident with a "droopy" eye. His teacher saw it, said he was "unresponsive" and then after a minute he became responsive again, but his left eye was still droopy.

He went to the office and Ken went to pick him up. Ken also saw the droopy eye and when he asked Riley to smile, only half of his face responded. Since this is now the second episode and so many people have seen it (although once Riley was home from school, it seemed to me that he kept squinting his eye to show me how droopy it was), his pediatrician, along with his cardiologist, suspect he may be experiencing TIAs or Transient Ischemic Attacks, or mini-strokes.

As a result, his anticoagulation medication is going to be changed from aspirin back to coumadin. Recall that coumadin requires very close monitoring with daily or several-times-weekly blood tests, which is a real drag for five year olds. Also, Riley is always falling down and cutting open his legs or elbows, so that is also discouraging and concerning. He will start coumadin therapy on Monday.

We're home

The MRI didn't show any evidence of stroke or clotting, so we were discharged and Riley is asleep in his own bed. It wasn't without a fight though: they wanted to keep him an extra night "for observation" despite eliminating all signs of any immediate risk factors. What Riley needs now is rest and recovery, and he certainly won't get that in the PICU.

We came home to find a really cool Get Well book from Riley's kindergarten classmates. Each of the kids had drawn a picture and written a note. We enjoyed reading through the messages like "Riley, you are a good friend, Love Edward" and "I hope you feel better soon Riley, I love you, Cassandra." You can't say we didn't properly prepare them for their classmate's hospitalization.

The boy is in pretty good spirits and looking forward to being back in school on Monday.

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.