27 April 2012

Enter Neurology

As if we didn't have enough specialists involved in Eddie's care already, we've now invited the neurology team to join in the fun! The crew (six or seven members strong) came by after Eddie's early morning CT scan to share their findings.

They believe that this was definitely a stroke as opposed to a TIA, or transient ischemic attack. Those TIA "mini-strokes" typically last only a matter of minutes, cause no permanent damage, and usually leave little trace in the brain itself. In Eddie's case, the neurologists were able to see clear signs of a stroke in Eddie's brain scans, but the damage was isolated to a very small part of the thalamus. The CT imagery and Eddie's clinical presentation both point to an embolic stroke, most likely caused by a clot from one of the non-visible sections of the Berlin Heart circuit.

Since Eddie has recovered almost all of his speech and motor function, we are confident the worst is over . . . for this particular event. Our biggest risk now is that additional clots form in the circuit and hit the brain again. Where there's smoke, there's fire . . . if one clot was able to form, it is more than likely that others will, too.

I know I sound like a broken record at this point, but the only way we can really address the clotting concern is by increasing his Heparin levels . . . which we have done significantly since yesterday morning. We have turned up his Heparin by 50% in the last 24 hours with, thankfully, no evident bleeding from his chest tube. His pressure levels, perfusion, and skin color are very good (these were all previous indicators of fluid buildup in his heart), so we don't think there is any bleeding in the pericardium. And since the part of the brain affected is so small, neurology believes the risk of cerebral hemorrhage is very low.

We'll see how he does overnight and the ICU attendings will pow-wow tomorrow to determine if Eddie will need anti-platelet therapy, as well. Antiplatelets are a group of medicines that stop blood cells (called platelets) from sticking together and forming a blood clot. This kind of treatment has been exactly what we have been avoiding for so long, but we think we may be starting a new stage in Eddie's care which requires new methodologies.

We also wanted to say that we are very disappointed not to respond to all of your comments and wonderfully kind words. We read every note (handwritten or posted online) and find great comfort in them all. They encourage us to continue fighting and comfort us in those dark hours when things seem to be going in the wrong direction. Thank you.

Working on his gross and fine motor skills . . . at least that's what physical therapy tells us :-)

Finding a few minutes to celebrate our April birthdays at Menchie's along with the aunties!

Meeting a new friend - Paddy


  1. Ugh. So sorry to hear about the stroke and additional complications on this journey. But certainly glad that the lasting effect seems to be minimal. Also love the therapy dogs and the Thomas the Train conversions... How thankful we can be for the people who volunteer to bring some light into children's lives in the hospitals! We are old hat here with neurology, and I am amazed at how plastic the brain can be. Still keeping you guys in our prayers on this side of the country!

    1. Thanks so much for the note, Tiffany. The Child Life team has really bent over backward to make Eddie's stay more restful . . . and, dare we say, fun? It is so comforting to know that other wonderful and strong people like you have traveled this road before us . . . we know we can do this. BTW, several of our nurses and doctors have worked or trained at CHB . . . so keep up the good work back there :-)

  2. What a cuteheart ;) So neat to see photos of Eddie and his activities - all which are probably welcome distractions! Eddie is a fighter - so relieved to hear that he bounced back so quick =)