Surgery Update - Day 4

Now that Dex is no longer in the ICU, Mark and I can stay with him at night.  We originally thought we would take turns spending the night with him but we both wanted to stay last night.  The night went well except all of our sleep was interrupted every couple of hours with vitals and meds and feeds.  They wanted us feeding him every 3 hours (on the dot) as if he were a newborn again.  Since we've all been sleeping much longer stretches than that recently, this was hard to do!  I actually woke up at 3:30 am with the nurse in my face saying "Did you feed him at 3 am for his scheduled feeding?!"  CRAP.  No, because I was fast asleep and so was he!  Thank goodness we don't have to do that anymore.  They have "liberalized" his feeds which means we can feed him as much as we want, when we want now.  So, we will hopefully go back to his regular schedule.

This morning the goal was to get his Echo, EKG and chest xray done as soon as possible.  Echos are becoming my least favorite thing in the world.  It's basically an ultrasound of the heart and you have to keep your 5 month old still, flat on his back, while someone sticks a wet probe deep into his chest where he just had open heart surgery!  NOT.  FUN.  We muscled through it and we ended up getting all 3 tests done before 10 am.

The Doctors did rounds around 12:30.  We sat outside his room looking at all of the images from the day and phrases like "perfect repair", "he's doing amazing" and "what a strong kid" came out of the Doctor's mouth.  They could not have been more pleased with how he was doing and we were so grateful!  He even talked about being discharged today (it would have been a stretch) but we didn't push it and told them we didn't mind staying another night. A few minutes after they came by, the charge nurse came in and told us they were moving us to a different floor (no longer a cardiac floor) because a child was moving out of the ICU and they were short beds on the cardiac floor.  We were told later that basically Dex was the healthiest kid on the floor which is why we were booted.  I'll TAKE IT!

Nanny and Papa were amazing and drove the kids from Austin to Houston today so we finally got to see them!  I swear they grew 5 inches in the week we've been gone.  I love how happy they were to see us and and how sweet they were with Dex.  I can't thank Nanny and Papa enough for letting us get through this week without having to worry about Jake and Maddie -- all the while knowing they were in the BEST hands.  Thank you Nanny and Papa!!

Now here we are resting on the 14th floor in a regular room where the nurses only check in on us every 4 hours and basically just take vitals and let us go about our business.  In the morning, we hope they will remove his chest tube bandage, remove the IV port and let us GO HOME!  Well, home to Grandpas house for the time being.  We have to remain local until next Friday when we come back for our follow up visit.  Then we can go home to Austin!

Spending the last 5 days in a children's hospital has been humbling.  While walking through the hospital today, there was a bake sale benefiting children with glioblastoma.  The parents were there selling their home baked goods while the pictures of their children were displayed proudly on the tables.  My heart ached.  We were one of the lucky ones.  Our baby's heart could be repaired -- quickly and efficiently -- and now we never have to worry about his sweet little heart.  Now that it is repaired, he will go on to live a long, healthy life.  How these parents deal with their children fighting awful, and some times terminal, diseases is beyond my comprehension.  Tonight, I pray for all of them.  And thank the good lord above that Dex is lying here with a completely healed heart.