Another Day

       To many people, today was just another day.  The same old.  For us, it was indeed another day; another day in which we were able to cuddle with, care for, and love Jacob.  A precious gift indeed. 

      As a whole, his lungs are on the upswing.  Every day now they are slightly better :)  :)  

      We continue to monitor him closely for all sorts of 'odd' things.  The only large scare I had today was when his heart rate was 55 - 60 beats/minute for several minutes.  Jacob's norm is around 100 beats/minute.  He didn't look in distress, so there wasn't a whole lot I could do.  I'm unsure what the irregularity means. 

     Today our visiting nurse came.  She truly is a gem.  She knows Jacob very well, as she's the one in the community who's followed him since the first full day we were home with him (back when he was 6 weeks old.)

Not sure how, but Jacob slept through the entire dressing change.  That sure makes life MUCH easier.

      She's extremely supportive of our decisions.  She's going to also be playing a much bigger role in the days ahead, as more treatment and assessing will be done at home, as opposed to the hospital.  Our night nurses and visiting nurses know him better than any nurse in the hospital, plus we pretty much have a hospital room set up in the house.  The palliative care team is always a phone call away and they can now direct the nurses and myself in what steps should be taken. 

     We know we have a dedicated nurse when...yesterday was her day off, but she still came to the meeting here, so she could take it all in, and be on the same page as everyone else.  That takes a special person.  Again, we are provided for, beyond what we deserve.  It is so humbling how God has provided us with such fantastic support.   “O the depth of the riches both of the wisdom and knowledge of God! how unsearchable are His judgements, and His ways past finding out!” Ro 11:33

The instant the stethoscope was on him, he woke up and started crying.  That's super loud in the ears.
Good thing the nurse is a good sport :) 

      The kids are struggling with reality.  It hurts to see them hurt.  Hopefully they can find submission with the road that they are called to walk.  The last week and a half has been a real eye opener for them.  If they can keep talking about their emotions and thoughts it's much better, but for some, to talk about their emotions, can be a chore.  As parents, we need much wisdom in dealing with these matters also.