Tuesday Night - A Josiah Update

Hello Folks!

So sorry to leave you update-less for so long. Monday was a ridiculously full day for myself that left me no time to post anything. Today has also been full so I'm making some time now in the late evening.

Josiah has been OK today, but he didn't get off to a good start. He was wide awake (and probably pretty fussy) from 2-7 AM and only slept for about half an hour before Marie showed up in the morning. Marie tried to hold him for a while this morning, but he ended up 'brady-ing' in her arms and that really disturbed her and pushed her over the edge. There's been a lot on Marie's plate this weekend and I think that was the last straw. Josiah was sedated in the afternoon because he wasn't sleeping and he's been doing really good ever since. His secretions throughout the afternoon and evening have been minimal and he really only gets crabby when he fills his pants - who blames him?! :)

Marie and I were able to get away from a while and went to Kits Beach for an hour. Beautiful place but the wind was terribly cold. Marie really needed to put some healthy distance between herself and the NICU since it's pretty much consuming her. She'll admit she's not a really good place emotionally (which is to be expected) and so she's been back at Easter Seals sleeping since 4:30-ish.

Like I mentioned earlier, Josiah's been having a really good deep sleep through the afternoon and evening. I was planning on getting some youth work done, but instead I'm reading and playing Sudoku beside his crib. :)

Hmmm ... I'm pretty sure I was going to write something else ...

A lot of Marie's mental space has been dedicated to processing all the G-Tube info she received over the last couple of days. We thought that it was pretty simple - Josiah's getting a G-Tube and it's a good thing - but then the surgeon dropped by and stated his reluctance because of Josiah age and Marie was convinced that we could wait. THEN the OT (occupational therapist) came by and told Marie a G-Tube was necessary ASAP because a NG-Tube (through the nose) wasn't recommended for long term. THEN we were told that G-Tube surgeries are usually delayed until the child is ready to be discharged. Obviously Josiah is ready to go home yet because he needs to work on his breathing, so all this information really left Marie unsettled because it brought us back to a place of uncertainty. Darn that fog!!

So we have basically put forth that we will give Josiah a few weeks to work on his breathing as we wait from God to know when we are to let him have an attempt at extubation. Our plan - and we are confident that this is God's plan too, but hey we're always open to more clarification from Him! - is that Josiah will be successful at extubation and then sent home with a NG tube. What we tell the doctors - after we tell them that God is going to heal Josiah - is that if the extubation is unsucessfull then we'll trache and G-Tube him simultaneously.

There is a lot tears right now and we (Marie and I) really feel as though we've hit a wall. Thankfully, God has gifted us in different ways. What I mean is this: in our marriage we have always joked that when one person is up, the other is down - we can never be on the same page emotionally or whatever. Of course this isn't entirely true, but has been proving true some days in the last 6 weeks. There have been so many times when I've been an emotional wreck but Marie has been strong or vice versa. Today was one of those days where Marie was down and I was up. It may have been Marie's hardest day to date, even worse than those post-partum nasties in the first week.

So please continue to pray for us and our Josiah. In fact, here's a list of current prayer requests to make it easy:

• Pray that Josiah will not self-extubate and will be able to rest well'
• Pray that Josiah's secretions will lessen and that his trachea will expand and firm up to what it needs to be - Pray that God will heal him!
• Pray that Josiah will receive all the primary nurses he needs (we even have now nurses who can't be primary asking other nurses on our behalf to consider primarying Josiah just because they see the big need - cool eh?)
• Pray for Marie as she carries a lot emotionally everyday, dealing with Josiah's up's and down's and working with nurses to care for Josiah (it's always hard when the nurses disagree with Marie's gut instinct which - of course! - usually is right)
• Pray for myself, for travel safety (and sanity) and as I balance family and work, especially for the gentleness and wisdom I need to be the husband Marie needs right now

I think that's enough prayer requests for now. Tomorrow I'll try to get around to posting some fresh pics of Josiah. I've been reading a book called The Emotionally Healthy Church and there was a portion talking about the 'ministry of weaking' and the gift of a handicap'. It's more than a coincidence that the very first example of 'handicap gift' was - believe it or - having a child with special needs. Talk about getting your attention ...

Toodles for now! Thanks for all the love and prayer. Thanks to Trina U. for dropping by yesterday to hang out with Marie, and for Marie's parents and my grandparents dropping in on Sunday. Yo Carly Simla! How goes it?! Just like you asked - my email address is andyman_sdg@hotmail.com. :)

Thanks for praying for us and spreading the word. I am blown away each day as it seems another person that we would have never met otherwise is praying for us and Josiah. God is good, so good.
- Andrew, Marie & Josiah