Saturday Afternoon - A Josiah Update

A few things to bring to your attention:

Josiah's MRI results are still not in. I'm betting that we'll have to wait until Monday because few things can be done over a weekend.

Josiah seems to be pretty much past his infection. He still has a temperature, but his secretions look a lot better and his heartrate has improved a little. He still needs 25% oxygen though.

Josiah's seizures are getting worse - a lot worse. He's had about a dozen already today. They are often brief, but happen in a flash with no indication or warning. The strange thing is that he can be awake and playing or totally in a sleep, it doesn't matter. Essentially he blanks out and it's difficult to PEEP/bag him because the seizures seem to cause his airway to 'seize up'. The seizure looks very different from his malaysia spells, mostly in that he's 'not there' fighting and cognitive. The seizures are certainly shorter in length, but are frequent, unpredictable and alarmingly neurological (it seems). The staff are still not 100% convinced that what he is experiencing is seizures, but it's more likely that then say apnea (breathing spells) because his strange moments happen while he's awake (apnea is normally just during sleep).

The doctors couldn't figure out why Josiah was so puffy for the last few days. They ruled out everything else so they took Marie's idea: that his heart wasn't circulating properly. Sure enough, an ultra sound proved Marie's theory right. I'll try to explain this in simple terms (mostly because I totally don't do anatomy!)

There is one artery that delievers oxygen-rich blood from the heart to the rest of the body. While it's not uncomon for children to have an extra vien come of this artery and go back into the lungs, Josiah has between 15-18 viens that run off from the artery back into his lungs. What this means is that atrium (compartment of the heart) that is pumping good blood back into the body has to work extra hard because not all the blood is circulating: some is back into the lungs. Not only is this affecting his circulation, the muscle wall of the atrium is starting to tire out from working so hard.

The doctors are giving Josiah medicine that will strength his heart and help it do it's job. Unfortunately, it's going to be another week before the doctors make game plan because the main cardiologist is away. The doctors have only seen Josiah's condition (of 15-18 extra vessels) 3 times in this hospital, so they aren't really rushing into anything. This condition hasn't shown up any earlier because the viens needed to grow to be visible on ultra sound and also to be a liability to Josiah's ability to circulate blood. Also, he is growing so it's more work to get blood to circulate from head to toe. It could very well be that this heart condition is related to his seizures, but that is far from confirmed.

So we need your prayers. It's been a long time since Marie and I have been scared, and we are pretty frightened right now. When Josiah's awake he's still his normal self, but you can tell over all that things are not right. We pray for miracles, we pray for protection, and we pray that the doctors know what they are doing.

Thanks.
- Andrew, Marie & Josiah