Questions and Answers

It has been an exhausting day, but at least we have some more information to deal with as we prepare for transition to life back in Kitchener.  The target date for returning home (and it is a moving target), is next Wednesday. 

There are a number of things that we need to learn and practice before we can take him home:

• Inserting and caring for his NG tube
• Giving his meds through the NG tube (at some points in the day he has half a dozen or more at one time -- each has different viscosity, so there is a preferred order for administering them, and then proper flushing of the tube when done)
• Giving his enox shot in his legs twice a day (Elizabeth has already been able to do this several times but Graham has not learned yet)
• Attaching his nose prongs and applying his oxygen level
• Giving him his fortified milk through the NG tube (this involves loading a special container and then prepping the hose that attaches to the NG)

So, if you are praying for us, you can pray that we can learn quickly and feel confident when performing these important functions.

Josiah celebrated his seven month birthday today!  He had lots of smiles today and enjoyed his stroller rides.  He did a lot of sleeping throughout the day, which was handy as we were in a number of meetings so could not be with him.

As mentioned previously, we had a meeting today with 11 of the staff that provide leadership to various aspects of Josiah's care.  The meeting started at 11:30 AM, but we ended up being brought to the meeting at closer to 12:30 PM as they wanted to discuss Josiah before we arrived.  It was good to hear from the team and to clarify some miscommunication.  Even though they were delivering bad news in the sense that Josiah's long-term prognosis is not good (barring a miracle), we felt supported and left encouraged. 

Later in the afternoon we were able to meet with the palliative care team.  They outlined some of the options we have when looking toward having Josiah back home.  As well, they asked that we start planning what we want "life" to look like for our family and for Josiah particularly upon our return to Kitchener.  We will begin to fill in those details over the next several days as we gather information about resources available in the community and mull over what our hopes and dreams are for Josiah and for our family for the next weeks/months/years.  It certainly brings things into perspective to consider that we have a limited time with him, barring a supernatural intervention.  We continue to pray for daily wisdom as we make decisions.

After our meeting with the palliative care team we were able to go to RMH for a gourmet meal provided by Timbercreek Asset Management.  It was good to be out of the hospital for even a few minutes and to enjoy a free meal.

So, it was a good day in many respects.  We were able to talk through some very difficult issues with the amazing staff here and to cry through our questions.  The harder part is still to come, but we know that Jesus will give us our daily bread as walk with Him through this time.

Thanks again for your prayerful support.

Blessings,

Graham and Elizabeth