Cardiology Appointment

Caleb had a cardiology appointment today.  Nothing like an appointment while kids were on Fall Break! Walking in to the hospital, we ran into our friend who's precious little girl is inpatient currently.  New friends that God has put in our paths through this journey are such amazing support and "new family".  We all pray, cry, and cheer each other on.  We quickly hugged and shared quick updates as my crew was quickly getting antsy and we laughed hoping I would remember where they were putting my keys!
  They helped to echo the Xray receptionists calling out for patients, making sure everyone "heard" their names being called and even questioned them what their "progress" was, when they were ready for our turn.  Overall, they were surprisingly wonderful throughout the appointment.  Thankfully, Daddy met us there for a good bit of it!  He had a few questions to ask and it was definitely helpful for backup with the kids.  We questioned whether he needs the oxygen at night since he fights it all night.  He pulls the nasal cannula off, puts it in his mouth and just plays with it.  I'm not sleeping at all because I'm either repositioning it all night or just worried that it isn't on him.  She said to monitor his sats for about 30 minutes to an hour after he falls asleep and if he's above his okay range, then we will formulate a plan.  So, naturally, I just put him on his pulse ox and he's right at 75.  Ugh.  
His xray looked good.  We are stopping one diuretic- Hydrochlorothiazide.  They took bloodwork to check his electrolytes- praying he can stop some of his minerals because I think they attribute to his stomach discomfort.
His cardiologist just is so wonderful.  It has truthfully been and will continue to be extremely challenging at home.  But she just reassured me that he is thriving.  Although it will be touch and go for a while, our time away from inpatient stays will grow.  She was just so pleased with him smiling at her and seeing his adorably cute tongue making faces back at her and even reaching out.  She said that as parents we are doing everything right.  She said she can tell Caleb knows that the world is an amazing place full of love.  It was so pleasing to hear someone say these kind words.  All the medicine in the world couldn't make a Mom feel more "healing" for their child than to hear that someone else can see that their child is truly loved and happy.