Laaaaaaaaaaaate Thursday Night - A Josiah Update

(Josiah on June 22nd)
... play time is for parents too!

(Josiah on June 22nd)
... loves taking in the sights & sounds of the TCU

(Josiah on June 26)

no caption needed

(Josiah on June 26th)
... many servants at beckon call!

(Josiah on June 22nd)
... yay! play time!

(Josiah on June 28th)
... monster booties!

I'm yawning so much right now but I have to get this down before I head to the house for bed!!

Josiah has been having really good days in the TCU up to yesterday. Unfortunately, the last 48 hours haven't been good at all, yet the latter 24 hours have been better than the 24 hours that preceeded it. In not so many words (man, I'm so tired I'm confused by my own typing and reasoning!) today has been better than yesterday but both haven't been that great.

Josiah is probably fighting off some sickness. Yesterday he was quite clammy, lower temp, more frequent and thicker secretions, slept a lot and wasn't his usual self. There has been fresh blood coming with the suctions, a strong sign that he is sick or the result of trauma to his trachea because of frequent dying spells. Unfortunately, when these days come it means Josiah is more prone to his 'dying spells'. Josiah had 4 in the first 24 hours of this icky-ness and 2 in the last 24 hours. He's improving, but still isn't his usual self. In I think 5 of the 6 instances Josiah needed PEEP and the 1 time he just needed O2.

[Time out for definitions: PEEP is basically the nurses provide a constant pressure of 100% O2 so that Josiah can breathe on his own and inhale a large amount of O2 as he is gasping - this is between Josiah having a 'blow by' which is 100% O2 just blowing over his airway and 'bagging' when the nurses force air into Josiah's lungs and regulate his breathes - that's the really scary one, but I have to be honest: every time I see Josiah gasping for air it's enough to make me fall to pieces].

Thankfully in the moments that Josiah was PEEP-ed his sats and heart rate didn't dip below 70. So the episodes weren't in their most severe form, but the frequency is concerning. When Josiah is sick/tired, he doesn't have the strength to sustain himself through an episode and the nurses have to respond double-fast to keep him out of one. When one of our primary's are on, they know how to recognize his distress sounds, but the other nurses in the room don't know what to listen for and are only made aware when the alarms go off (which is too late to prevent an episode because it means he's already in one).

So the doctors have taken a few cultures and blood tests to see exactly what Josiah is fighting right now. The first results came back negative, but they have to observe the cultures for 24 hours to see what develops.

Marie and I of course are worried by this and it wears us completely thin. Until Josiah gets better, Marie will be spending even more of her time in the hospital. For example, tonight she has made arrangements to sleep in the waiting room and to be woken up when Josiah's nurse goes for her break (Josiah has his episodes a majority of the time when his nurse is on her break because even there are other nurses in the room, it becomes an issue of proximity and familiarity with Josiah's triggers, signals, and calming reflexes).

Further, an interesting development: Josiah had two bronch scopes this week and the main doctor believes that a part of Josiah's problem may be due to the fact one of main arteries crosses over his trachea. With the camera, the doctor noticed that Josiah's trachea pulsed as is blood was rushing past it and if that were the case, it would accelerate Josiah's dying spells because as Josiah got more agitated, more blood at a greater force would be pressing against his trachea, causing it to collapse even further. So, if this an accurate reading of Josiah's anatomy then he might go into surgery in the near future, and then have a sling placed around the artery pulling it away from the trachea wall. If this a significant factor in Josiah's dying spells, this surgery could lead us home sooner rather than later, but we'll have to trust God on that one.

Wow. It doesn't seem like much but this post took way too long for me to type up. It's definitely time for bed.

So please pray that Josiah will recover from this sickness, and that there were be no permanent (brain, heart) damage as a result of his many spells. Please pray that the doctors will have wisdom in his to diagnose and care for Josiah's needs, and please pray on his behalf of his potential heart surgery.

Thanks to our visitors this week: Leanne K. (didn't forget you this time!), Tim & Erin E. Paul & Danelle C., ... man, I have such a short term memory these days, but I think I covered everyone!

Oh, and happy b-day's go out to Danelle & Wes (yeah, cards are in the mail) [cough cough]

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