A big weekend, but a long road ahead

Naaman has had a rough few weeks, there is no doubt about it and the time has seen a full range of emotions from dread, fear and despair to anticipation, happiness and hope. One thing that has never changed, however, is our love for Naaman. 

A busy weekend

Naaman has had a busy weekend. It is still very early but he has shown some signs of turning the corner, as put by the rounds team. After undergoing a breathing trial called a CPAP, Naaman’s breathing tube was taken out on Saturday as was his catheter. They also removed his main arterial line in his left hand on Sunday along with his chest drain tube.  

His levels overall have been pretty steady. He is retaining less fluid and his platelet, ANC, red blood cell and ammonia levels have stabilized in the short term. He is also getting closer to his original weight when he was in clinic, his belly shrinking and being much softer overall. 

Time to heal

We do want to reiterate that while Naaman has turned a corner and shown improvements that he is still far from full recovery. A doctor put it well one day. “Everything we are doing is to support his body to heal the liver”.  His liver is still quite large and will need a significant amount of time to heal.  His lungs have a lot of congestion that will have to go away on their own. Naaman is also suffering from severe withdrawal symptoms from his sedation medications.  In addition his levels have to be closely monitored as well as for fevers and infections. He will eventually need lots of therapy to recover his lung and body functions.  Then there are the unexpected bumps in the road that we all know too well. This will all take time and lots of patience. We continue to appreciate your support. 

With the breathing tube out and his eyes open again, we see glimmers of our old Cheeky. His still can not really talk yet, is very sleepy, jaundice, emotional and sad but gives the nurses a high five. We, and the entire YNHH staff, are eagerly waiting for him to continue to emotionally and physically be his old self. 

The medical staff

The doctors and nurses throughout have been collectively and tirelessly working together to heal our little guy, not just by their knowledge, but by consulting with outside clinicians and separate research.  Working as a cohesive unit has given Naaman the best chance possible, by allowing the team to react almost minute by minute and hour by hour as conditions changed. They’ve had to make tough decisions along the way, and still do, all while explaining them to us as best as possible. For that we are grateful.