Home Again

     We were able to come home yesterday from the hospital with some uncertainty as to what we could expect in the near future.  Medications have been altered, some added and some discontinued.  The ones that have been added need close supervision to make sure the dosages are the best for him.  One med is to make him sleep.  It hurts us to the core when we administer the med!  Every evening when we give it, Jacob is sleeping within 5 minutes.  He sleeps almost the whole night, maybe except for 10 minutes now and then.  It's so nice to see him peaceful, yet concerning to see him so sedated that we can change his dressing and he doesn't even stir.  We follow what the professionals say, yet without God's blessings, all will be in vain.  We pray that God will use the medications for Jacob's good.   
     
      It was indeed one of the most interesting admissions we've had to date.  We seemed to have it all in a matter of 2 1/2 days.  Sadness.  Humour.  Delight.  Surprise.  Overwhelmed.  Pain.  Reality.  Support.  Apprehension.

     We had fabulous nurses, which always makes the road much easier to walk.  One of the highlights was that we had Kim (our previous primary night nurse) on Friday.  It was so exciting to see her love, once again, being poured out on our little boy!  We had a humorous episode with her.  Kim came in to administer some meds shortly after we got the news that we could be discharged.  She was right at Jacob's level talking to him saying that he was going to go home, and therefore they couldn't play together any more.  As soon as she was done talking to him, Jacob let out a huge burp right in her face.  Needless to say, everyone in the room was doubled over (including Kim.)  I believe it was Jacob's way of saying, 'I love you, Kim.'
      
      We dealt with some difficult issues.  The week prior to our admission we were told 'for us to expect weight gain is unrealistic.'  That was the toughest news we've heard in a while.  Again, the negative was set before us.  Our hospital stay brought more things to the surface regarding the care that Jacob is going to need.

      The road ahead looks so bleak, so rocky, and tough in almost every aspect.  One way in which the road looks bright, is to have Lisa walking beside us.  She comes with a wealth of knowledge and experience.  She's genuine.  In the role she plays, she is the bearer of bad news many times, yet she does it in a sincere, gentle way.  She's wonderful.   For our situation (and I'm sure in many others) she's been a huge blessing!! 

Lisa, the palliative nurse practioner

Caleb turning a hospital visit into a game!  No one was able to leave (or enter) the room.

Bein somewhat more agreeable.  We were allowed to leave. It's a beautiful thing for the kids to be able to visit the hospital with a positive mindset!  I'm not sure who loves the visits more - us or the kids!