Wednesday, 15 January 2014

Off and Away Again

Today marked the day that Jacob went to the respite home.   As much as I love the extra time with my hubby and our other children, it sure leaves an empty place in our home. 

At the home they ask for new developments and things of concern that we want them to watch/monitor for.  Most months this is a fairly simple process.  Usually there is one (the odd time two) item(s) that we discuss.  The doctor and nurses are a huge help in the sense of having skilled eyes on him for several days in a row.

This month there were several serious things to discuss, so admission took way longer than normal.  They want to make sure they understand 100% before I leave.

We discussed Jacob's apnea (not breathing) spells.  These are downright scary.  They come and go with no warning, with no special triggers; he just quits breathing for up to a minute.  His oxygen saturation drops dangerously low.  What can we do about it?  Nothing but watch him not breathe.  We can move him drastically and still that won't trigger his brain to start breathing.  There is nothing the medical world can do to help him.   That's tough.
We discussed Jacob's copious amounts of phlegm, yet his lungs are decently clear.  Bizarre.   It is clear that if all the phlegm was coming from his lungs, he would be having an extremely hard time breathing, but he isn't.  We are hoping for some tests in the coming months to help us understand what is going on inside his little body, as the increased phlegm has almost been for 3 months.  There are days that we suction out almost a litre of phlegm.  This aspect of his care has caused me to be close to him at all times.  We are always concerned about him swallowing his phlegm and it going into his lungs, and then causing an infection. 

Another discussion point was his jerky/startling behaviour.  We are hoping that Jacob's EEG next week will reveal what is going on in his brain.  The findings may not be pleasant, but not knowing and constantly be playing the guessing game is not fun either.

The child life ladies are going to work with seating options, as he loves to sit, instead of lying down.  It's also really good for his lungs to be in an upright position :)

Sometimes when I look on our past, I'm amazed at how our journey with Jacob has changed.  It's constantly changing, always keeping Paul and I, plus Jacob's team on their toes.   

Our bulletin had the following meditation, which was a huge comfort for us:
The infinite forethought, wisdom, and goodness which have marked each line of our new path have also provided for its every necessity....
     each exigency in the new year has been anticipated;
     each need will bring its appropriate and adequate supply;
     each perplexity will have it's guidance;
     each sorrow its comfort;
     each temptation its shield;
     each cloud its light;
     each affliction will suggest its lesson;
     each correction will impart its teaching;
     each mercy will convey its message of love.
The promise will be fulfilled to the letter, "as your day, so shall your strength be."
Octavious Winslow

I have some pictures to share, but they'll come later :)