Josh is off the ventilator!

By Ken Falkenstein | Sunday, July 24th, 2011 | Virginia

Three months ago, my wife gave birth to our twin baby boys, Joshua and Dylan.  They were premature, arriving at 31 weeks, and both had to stay at the hospital.  Dylan progressed quickly and came home after 4 weeks.  Josh, who has Down Syndrome and was born with a related heart defect, did not fare so well and has been at the hospital since he was born.

I wrote back in May about the wonderful treatment that Josh was receiving at Children’s Hospital of the King’s Daughters (“CHKD”) in Norfolk.  At that time, Josh was in the Neonatal Intensive Care Unit (“NICU”), where he underwent numerous procedures to fix his obstructed airway.  At the time I wrote that first article, we thought his problems had been resolved and that he would soon be extubated from the ventilator.  Unfortunately, Josh failed three extubation attempts.

Finally, a decision was made to insert a tracheostomy into his throat, and the procedure was scheduled.  However, the cadiologist intervened and suggested that the problem might be Josh’s heart condition.  We had known since before Josh was born that he would need a heart surgery, but we did not expect it to be so early after his birth.  But on the recommendation of the cardiologist, they cancelled the tracheostomy and scheduled the heart surgery instead.  They transferred Josh to the Pediatric Intensive Care Unit (“PICU”) to prepare him, and the procedure was performed on June 23, 2011.   I posted updates here throughout the day.  Josh came through the procedure well, and we will be forever grateful to Dr. Mohammad “Ali” Mumtaz, the brilliant pediatric heart surgeon who saved our son’s life and continued to take such extraordinary care of him following the surgery.

Although Josh did well in the surgery, echocardiograms taken after the procedure showed some leakage in a valve, and the doctors could not predict whether this leakage would cause Josh any problems or not.  The only way to tell would be to attempt to extubate him from the ventilator after his recovery from the heart surgery and see if he could breathe without assistance.

Just as Josh was reaching the point that they could start thinking about extubation, he contracted several infections, including sepsis, a life-threatening blood disease.  The doctors fought this infection aggressively with antibiotics, platelet infusions, and other appropriate treatments.  After a week and a half of sleepless nights and intense prayers by our family and hundreds of relatives, friends, and supporters around the country, Josh was cured of the sepsis.  However, the treatment itself caused him to become bloated to literally double his normal body weight.  His skin was stretched so tight that it literally shined, and we could see the veins under his skin.  It was horrific.

We were told that it would take 3-4 weeks for him to process off all of that excess fluid and that during the course of this recovery, he would remain susceptible to reinfection.  We therefore limited visitors and took extra precautions to avoid touching him very much when we went to visit.  And over the course of the following two weeks, Josh did indeed process off most of that excess fluid.

More significantly, over those two weeks, they were able to start reducing Josh’s setting on the ventilator.  Yesterday, exactly one month after Josh’s heart surgery, we received the call for which we had been waiting for three months:  They extubated Josh from the ventilator, and he was doing fine breathing on his own!

Kim and I went to see him a couple of hours later, and when we arrived he was being held by a nurse.  We immediately scooped him into our own arms, passing him back and forth because neither of us wanted to let him go.

Before yesterday, Kim and I had only gotten to hold our son on two or three occasions, while he was still in the NICU hooked up to the ventilator, and under strict conditions that required us to wear special gowns and sit very still.  We had not had any opportunity to hold him since he was transferred to the PICU.

Yesterday, for the first time, we were able to hold and cuddle our son like a baby should be held and cuddled.  It was the most wonderful experience of my entire life.

I just got off the phone with Josh’s nurse, and today he’s doing even better, breathing room air and perfectly happy and comfortable.  Kim and I can’t wait to go hold our baby boy again today – and tomorrow, and the day after that.

They will begin working to teach Josh to take a bottle possibly as early as tomorrow.  Once he is able to take all of his feeds orally, he will be able to come home.

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