Sunday Afternoon - A Josiah Update

I'm sorry for leaving you all hanging after my last post, but there's been a flurry of activity over the weekend and I'll try to sum everything up before I head to church!

Josiah had an EEG (brainwave scan) on Friday and his wave activity confirmed that he is having seizures so he started his seizure meds (I call them 'brain juice') on Saturday. The neurologist will start with the lowest dosage and then work up according to Josiah's needs. The good news is that ever since the first dose we haven't observed any of the radical seizure activity from previous acts (the deep-brady and eyes-open response) and he's only had a few minor and brief spells.

Further, Josiah's bloodwork revealed that he is not receiving enough sodium (confirmed by the fact that his urinary exam - cathader, so mean - showed that he was not urinating an abundance of salt and that nothing else is wrong up there). The doctor has order that SLF (formula powder) and sodium be added to Josiah's breast milk to compensate and get his weight up. The doctors feel that his need for sodium is because most babies would be working on solid foods right now and as a result be getting more sodium in their diet. Yet Josiah has gained some weight this week (though it looks like it's mostly water weight!) which is so good because he had plateaued for the longest time (his tapering off in weight gain and length might be do to the fact that he has a syndrome, but that's just speculation).

Saturday night Josiah's G-tube popped out again (for the third time I believe). It seems that his body wreaks havoc on G-tubes: they are supposed to last for months, but Josiah has gone through 2 in less than 2 months - the balloon inside develops a leak -and they cost $500 a piece!. Josiah was too squirmy/upset and made his tummy too tight to have the g-tube reinserted Saturday night (Jenny and Naomi witnessed the incredible sight of Josiah's abs - absolutely out of this world, people) so a smaller foley cathedar was put in for overnight. Josiah was given chloral Saturday morning before his g-tube was put back in so that he's be really calm, but he really didn't need it because he was given his first dosage of 'brain juice' 45 minutes early and was pretty much knocked out because of them (the meds will make him drowsy until his body adjusts to them). In fact, Josiah slept pretty much the entire day and whenever he woke up he was never really with it. Because Josiah was so relaxed by the chloral, we realized for the first time how bad his spine really is. It seems that his stomach muscles really hold his spine in place (the best they can) and when he's zonked out the spine curves even more to the left.

Josiah also started to develop a fever yesterday, and was having a hard time maintaining his sats even though his airway was more or less patent. He has been on a little bit of oxygen assistance and is doing a lot better this morning clearing out his airway of all the secretions (which have been for the most part clearer and loose - good news), but his heart rate continues to ride about 10 beats/minute higher than normal and he continues to demonstrate labored breathing from time to time (hopefully he will have an x-ray of his lungs today to make sure nothing is wrong down there). The doctor sent an aspirate sample away again yesterday and confirmed that Josiah does have an upper respiratory bacterial infection, and so Josiah will be on antibiotics for the next 7+ days. It could very well be that this fever/infection brought on the seizures as Josiah's brain/body had to switch to combat the illness and as a result 'give up' on holding off the seizures (I don't know if that makes any sense to you, but that's how the doctor described it to us).

Josiah's first tooth has also officially popped through for good (another reason while he has a fever). The fever has gone down a bit from yesterday and he's much more alert, so much so that Marie was able to give him a bath today (which he enjoyed as usual).

So yeah, that's the whole scoop on our weekend. Thanks for the prayers and again I'm sorry for not being able to give you an updated sooner (hard to find internet access on the weekend). Thanks to Jenny L., Naomi R. and Danelle C. for visiting Marie and Josiah this week. That's again for all your prayers, and we ask that you continue to pray for us. We are still very concerned because Josiah has been throwing us a lot of curve balls and new things over the past few days, and there are a lot of prayer requests scattered through this entry as you can tell.

Thanks again. In God's Graces.
-Andrew, Marie & Josiah