Friday Morning - A Josiah Update

Hi Everyone

This is a quick update on a new concern and prayer request for Josiah. Over the last couple of days he has demonstrating something new and a little alarming. It is too early to tell if the spells are taking different forms or if we are dealing with something completely different.

At least 6 times in the last two days Josiah's heartrate has dropped considerably when he's asleep. He is never provoked prior to these moments and it has been noted that on at least one occasion it appears he wasn't breathing for a longer period of time prior to his brady. In these moments his heart will often self-recover and they last for only seconds, but some have been longer. The most troubling aspect of these new spells (or whatever they are) is that Josiah's eyes may open although he's not alert and won't focus or respond. Often he'll need PEEP to pull him out of these moments (it forces him to cough and break this weird glazed over expression, wake up) and he'll usually fall right back to sleep as if nothing happened. It doesn't appear to be secretion-related because we never draw up much secretions at these times and Josiah is never upset or crying during these moments.

Like I have mentioned, it is hard at this point to determine whether these are spells triggered by his malaysia or if it something like a seizure. We were aware the seizures are a common component of Pallister-Hall Syndrome, but has Josiah never demonstrated any symptoms up to maybe this point.

So your prayers would be extremely grateful. These moments have happened all throughout the day, whenever Josiah is sleeping. Pray for Josiah's protection, the wisdom the doctors need, the vigilance and speed the nurses will need, and for the hearts of Marie and I. Marie may be staying by Josiah's bedside more often in the coming weeks just to help monitor him (she stayed there again last night and Josiah had 4 of these moments during one 12-hour shift).

Thanks.
- Andrew, Marie & Josiah