Glenn update #4 - last day in PSHU

Hi all,
Jonah is still doing good.  He had his chest tube and one central IV removed today.  We're expecting to go to the step-down unit tomorrow afternoon.  Earliest we'd be discharged would be on Monday.  Here are some quick highlights...

He can still get pretty angry when he's awake, but at least it's getting easier to hold and swaddle him now that he's got fewer things attached to him.

We've had a couple scares each night.

The first night, when we came back up to see Jonah after dinner, the nurse asked us if Jonah's pupils were always different sizes.  What?  No.  Well, the one pupil was bigger than the other and they were watching his neurological signs closely, but everything else looked normal.  Obviously we went to bed worrying about potential neurological problems, but fortunately at the 3:00am assessment both pupils had returned to the same size.  They are guessing that some of the excess pressure from the Glenn had built up behind one of his eyes to cause this, and as the pressure subsided, so did the enlarged pupil.

The second night (last night), when we came back up to see Jonah after dinner, the nurse asked us if Jonah's chest gets all red and blotchy when he gets angry.  No, we replied, his chest gets the same color as the rest of his body when he's pissed off.  Sure enough, when we unwrapped him to take a look, it was obvious something wasn't right.  To me it looked like a rash, like someone had rubbed poison ivy all over his chest, but it wasn't puffy, raised or hot to the touch.  Thoughts like infection and allergic reaction are running through our heads.  The nurse quickly paged the attending doctor, and she arrived promptly.  Her assessment was that it may be a skin reaction to the Tegaderm transparent dressing they used to cover the incision on his chest.  It didn't make entire sense at the time, because Tegaderm was also on his legs and he didn't have the same reaction.  But after 24 hours the redness started to fade on his chest.  The case against Tegaderm was also strengthened when they removed the Tegaderm from his legs today, the same skin reaction took place.  I guess it's just sensitive skin when the adhesive is removed.

Yesterday we got the most time with Speech Therapy since Jonah's been born.  The Speech Therapist worked with Jonah on the bottle and gave us invaluable information.  Most importantly, Jonah can do it - it's just he needs a lot of help and support - and you can't just shove the bottle in his mouth like a normal baby and expect him to take it.  There were techniques that we were never taught, but they worked and continue to work.  For example, we need to apply surprisingly firm upward pressure on his chin or lower jaw to help him latch on.  At the same time, we need to be placing the bottle nipple on the middle of his tongue and applying pressure downward.  He also needs frequent breaks so he can catch his breath.  We can try this for 10 minutes and then feed the remainder via NG tube.  So far it's been slowly working, however today wasn't the most ideal day for working with the bottle.  In order to remove the chest tube, they wanted Jonah's stomach empty.  Then after they remove the chest tube, they do an x-ray, and then someone has to read the x-ray before they give the OK to resume feeding.  So he went 7 hours today without eating - not a lot of opportunity to work on the bottle as you can imagine.

The Ronald McDonald House has been great, and it's really eye-opening to see how important a place like this is for so many families.  There are some families that have been here over 6 months, babies that were here when Jonah had his first surgery, but they haven't been home yet!  There are some truly heart-wrenching stories, and it makes us feel fortunate (but very guilty) that we are "in and out" so quickly with Jonah.  It's just a reminder of how serious and risky these congenital heart defects are, and that we should never take for granted Jonah's health.