Regroup: Take 3

We had to regroup after Joshua's malrotation incident, we had to regroup after his first bowel resection surgery, now we have to regroup after his second bowel resection surgery.  You go through shock and denial, you grieve for what you lost, you drastically lower your expectations, and you regroup and move on.  There is no other option. But, this time has been much, much more difficult for me.  I am sick and tired of seeing my sweet son suffer.  He has had enough tubes shoved down his throat, trachea, and stomach.  He has had enough IV's, blood transfusions, X rays, and heel sticks.  And now we are in for many more months of just that.  It is hard for me to wrap my head around it. 

I have shelled myself off so I can avoid questions I don't have answers to.  I am already frustrated I don't have solid answers and it's even more frustrating to try and explain this to others.  It is also depressing to verbalize what is ahead of us.  This is something David and I need to process and face together and we are.

We were able to speak with our surgeon today about the specifics of Joshua's surgery and his progress so far.  She told us Joshua has 52 cm of small bowel left along with his duodenum and his entire colon besides the ileocecal valve.  Apparently Joshua had less small bowel to begin with because of his gastroschisis condition.  He also lost approximately 52 cm of small bowel which in his case is half his small intestines, but would only be 30% in an average infant.  On the scale of severity for short bowel syndrome, Joshua is somewhere in the middle.  His long term prognosis after many months of continuous feeds and IV nutrition is good.

Our surgeon said his incision site looks great, his belly is nice and soft, and he is progressing really quickly from a post surgery perspective.  She even said Joshua had the best looking tummy in the NICU!  His Anderson stomach tube has already been removed and he is pooping with almost every diaper - good signs.  The fly in the ointment is upper airway inflammation causing him to have difficulty breathing.  It is expected that the steroids he is getting will kick in and he will be able to get off the ventilator tomorrow.   I can't wait for him to get off the ventilator since he hates that tube more than any other.  He gags on it, his head turns red, and his face contorts in pain.  It is agonizing to watch.  Besides a few gagging incidents, Joshua looked relatively comfortable tonight.

Worry, fear, anxiety, and heartbreak.  I know every parent goes through these emotions, our situation just amplifies the feelings.  It is all so worth it for our against the odds warrior, our strong son, our little hero - Joshua "Tough Guy" Folden.
 

Joshua resting tonight.  He is getting so long his little feet won't fit in the blanket.