"Things are going well"

We just heard that "things are going well," but doctors don't have an estimate for when they'll be done. At this point, he's been in surgery for more than seven hours and since they didn't have an estimate, we're guessing that they are not close to finishing up. It's probably going to be a few more hours. At least I've managed a few naps on the sofa in the waiting area outside the CVICU (cardiovascular intensive care unit) where Riley will end up after his surgery.

A pre-op view

R distracted with SF Giants highlights

Just a picture of Riley sporting his hospital-issue, Mickey Mouse pajamas before going back for surgery this morning. Nothing to report yet, just waiting, and waiting, and then wandering the hospital before waiting some more. Fingers crossed that no news is good news at this point.

Full speed ahead

The transplant that delayed us this morning fell apart and the team moved quickly to get Riley ready for his surgery. Once he said goodbye to his siblings, bonus parents, and Grampy from the registration waiting area, he went into the pre-op suite where he shedded his civilian clothing for Mickey Mouse scrubs, plain blue hospital pants, and grippy yellow socks.

Numbing medication went onto his hands to prepare IV sites. He also received a large dose of Versed to help relieve some of his anxiety and despite it's miserable taste, he managed to keep it down with some distraction. One of the team members overhead that Riley likes the Giants and promptly handed over his iPhone so that he could watch some Giants' highlights. That relaxed him almost instantly...and I'm sure the Versed was already kicking in as well.

From there Ken and I gave him some hugs and the team rolled him out of there to get prepped for surgery. That was around 9:30 am. Dr. Hanley would go into the operating room a few hours later. The whole procedure should last less than nine hours, but we should get periodic updates from the team. We had the opportunity to meet briefly with Dr. Hanley just outside the family waiting room. He went over the complex procedure and talked a bit about chylothorax, which is something Riley has suffered from in the past. The takeaway is that he may get it, but it's unlikley. The biggest risk is that he comes out with a permanent pacemaker.

Surgery delayed

An emergency transplant has delayed Riley's surgery. At this point we are simply waiting to see if it is delayed for a few hours or if it will be rescheduled for another day.

Second grade

Here's a picture from Riley's first day of second grade.

From First day of second grade

Status quo

Riley had a cardiology appointment on Tuesday and everything in basically unchanged. That is the best we can hope for right now. We go back again for another check-up in six months. I guess it's true: no news is good news.

Neurologist appointment and sick with pneumonia

Last night we had a consult scheduled with the pediatric neurologist to follow up on Riley's droopy eye. Riley's cough has been getting increasingly worse and he stayed home from school yesterday. Suzanne called the advice nurse and they scheduled time for us to see a pediatrician in Santa Clara right after the neurology appointment.

The neurologist is skeptical that Riley is having TIAs and instead suspects seizures. The fact that each episode presented the same symptoms - droopy eye, partially paralyzed face on the same side - makes a TIA unlikely. If clots were breaking off and entering his brain, you'd expect them to hit a different part of the brain each time and cause different symptoms. Further, he said you can see the after-effects of a TIA on an MRI up to 24-48 hours later, and he sees nothing on the MRI.

We're going to schedule Riley to have an EEG to further investigate seizures. If indeed the cause isn't related to clotting, Riley presumably can come off the coumadin therapy and we don't need to (yet) have all that scary talk about trying the Fontan again. We're going to push to get the EEG done before the holidays. If see him exhibiting the symptoms again, we should have him try several different things and try to videotape it. The neurologist asked us to post the video on YouTube and email him the link, I love 21st century medicine!

The pediatrician suspects that Riley has pneumonia again. She prescribed prednisolone and azithromycin. Riley's cough and sleeping improved considerably overnight as the prednisolone took effect. He's home from school again today but is sitting up and in better spirits.

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.