Day 4 IVIG

Thank you all for your offer for Type O+ blood donations.  It looks like for the time being, we have enough blood.

Today is day 4 for IVIG treatment, tomorrow is the last day and then they test for neurological responses. 

To date the nerve conduction is highly suggestive of GBS, the diagnosis made on Friday.  They are however; testing for botchulism, apparently, we were all educated in the fact that we live in the botchulism belt - from NY to DC.  It's found in soil and water.  They are also testing for West Nile Virus and a host of other ailments.  Aidan's samples were sent to the CDC (Center for Disease Control) and the results should be back late this week.  Botchulism was suspected because it affects the neurological junctions, this is being tested to further determine the current suspected diagnosis and to rule out anything else. 
Because of his current presentation, clinically, neurologically and from a radiographic standpoint the Specialists are fairly certain it is GBS, but the worst form.

His blood pressure and heart rate are stabilized, in part because of the diuretics he is being administered.  He is on a lot of opiates to induce sedation so that he doesn't feel any pain and cannot react to all of the supportive care (ventilator, feeding tube, etc.). 

Once the IVIG is complete and he doesn't show signs of agitation, they will slowly titrate the doses of opiates. 

He currently has fluid in his lungs (and pneumonia + mono - the underlying cause of all of this), namely his lower airways, this is common in patients who are sedated and are bed ridden, they are not able to clear secretions in their airways.  He is being administered a mucolytic (mucus thinning medication) to loosen the mucus, then it is being suctioned out.  He is also receiving CPT (chest physiotherapy) a hand-held percussive device to also help expectorate the secretions; this is done in place of what a healthy person does - coughs.  This combination of pharmaceutical and respiratory therapy effectively helps Aidan clear his lungs.  Today while he was being moved for his 2 hour position change his heart rate shot up and they had to remove him from the ventilator and bag him - he is now stable. 

Next steps - Goal Therapy.  After tomorrow once the IVIG therapy is complete his pain killers and the ventilator will be reduced to see how he reacts.  He is currently showing signs of movement, his shoulder and his eyes when you lift his lids.  He can react to your voice and will move his eyes towards you, this is referred to as tracking.  He did both several times today.  The Specialists are looking for a more realistic neurological sign (marker) once the 'goal therapy' starts.  It's difficult to ascertain his neurological state on so much sedation. 

Good news is he is in good hands,  Morristown Memorial Hospital is a Regional Trauma Center of Excellence; there are only 9 in New Jersey.  He is being followed by a Pediatric: Neurologist, Intensivist, Critical Care and Pulmonlogist and of course his incredible Nursing Staff in the PICU (Pediatric Intensive Care Unit). 

There is not a lot of literature or studies on GBS since it is so rare and hard to diagnose.  But, from what we know it will take 1-2 weeks to show signs of improvement.  Bottom line is we're in for a long haul.  He'll probably be in the PICU for at least 3+ more weeks.

Tomorrow brings the end of IVIG and a 2nd EEG (brain scan), we're hoping for a better response to the physical exam. 

Keep Aidan in your prayers.