The Scary Call: Days 96-97

Little cutie

 The past few days have definitely had their ups and downs just like a microcosm of the NICU rollercoaster but compacted into hours instead of weeks.  On Wednesday - the first full day on the steroids - Benton was definitely showing signs that the steroids were working.  Yay!  His oxygen requirements were definitely better vascillating between 40% and 60% oxygen.  If you remember Benton hadn't averaged 50% oxygen in months so this definitely was an improvement. 

Today we awoke to good news - Benton's oxygen levels had decreased overnight to 41% and his most recent blood gas showed improvement so they had lowered his pressure to 30.  Unfortunately the IV in his head had gone bad and they had to pull the IV and give him his meds orally.  We were afraid that giving the steroids orally vs. intravenously would be less effective so we left a message to speak to the doctors with our day nurse.  Less than 20 minutes later Dr. Ramasethu (the attending doctor) called.  I, being delusional, believed she was calling to discuss our concerns about Benton's medication but instead she told us that Benton had a severe incident.

As the doctor explained, Benton had all of a sudden started to de-sat down to the 40s despite turning up his oxygen to 100%.  As the nurses tried to suction his tube the respiratory therapist noticed that his chest wall was not rising.  This was an indication that his ventilator support was not actually getting to Benton.  As the nurses tried to suction his ET tube to no avail the doctors had to extubate Benton and re-intubate him with a new tube multiple times.  During this ordeal Benton's heart rate slowed and the doctors had to resuscitate him using chest compressions and epinephrine.  As the doctors later explained to us this scary incident was a result of mechanical failure in his ventilator.  His ET tube had gotten a massive mucus plug and this had blocked his airway from being ventilated properly.  Needless to say getting this phone call this morning was terrifying.  Listening as the doctors explained what had occurred I felt numb as a deep dark pit formed in my belly.  All of this news just felt like I had been sucker-punched.  Benton had been doing so well recently that I had finally started to let my guard down and yet here we were again riding the lows of the NICU roller coaster.

Resting after his morning ordeal

Obviously once you hear that your son has just had to be resuscitated you want to rush to be by his side.  Unfortunately the day that this occurred also happened to be one of the biggest snow storms to hit DC in 4 years.  We had to wait for the snow to subside a bit and then we set out for the hospital despite the dangerous road conditions.  Despite being assured by the doctors that Benton had bounced back from his episode we still felt that we needed to be there with him to help in his recovery.  By the time we reached the hospital Benton was back to requiring only 40% oxygen and while we were reading to him he actually hit his lowest oxygen requirement in months 29% oxygen!  It is amazing that our little one can bounce back so quickly after something so terrifying. 

Lowest oxygen settings we have seen!

Because of his incident the doctors suspended his feeds for a few hours to let his belly rest in case there was an increased amount of acid in his bloodstream after his heart stopped.  However, by three o'clock he was allowed to start his feeds again albeit slowly.  To check on his oxygenation after the incident the nurses took a blood gas and it actually came back better than the one that morning so the doctors were able to wean his pressures again to 29.  As we sat next to Benton we were just amazed that despite such a scary morning he was rocking it out on his settings just hours later.  It seems that the steroid treatment is working and now we just need to pray that he sees enough sustained improvement that he can come off the ventilator for good.

Our little fighter!!!

Please keep Benton in your thoughts and prayers.  We are praying for our little fighter to have improved lung function so he can come off the ventilator and for him to stay healthy and safe with no more drama.