November 22, 2013

Rokie is so much more alert and able to use his hands more.  His brain is active and he can listen to some simple commands when we play occupational therapy games.  I am so impressed with his improvement since last Sunday.  Back then his eyes couldn’t focus on me and he would get tired so quickly.  Today he played with me for a few hours despite being so tired.  He seems to be more content and not so aggravated. 

He no longer has any lines in him at all except one IV and a feeding tube as I expected.  The ICU staff, along with the Rehab Team, are in agreement that Rokie should be moved to the fourth floor for rehab.  This makes me think that it won’t be too long before he is discharged.  I have not spoken with the surgery team yet.  They may have some other opinions that may lengthen his stay.  I will see what they say tomorrow. 

I emptied the ostomy bag for the first time today.  It wasn’t very bad at all.  I changed his diaper too.  After that, we put a gown and some pants on him before we got to go on a field trip!  The doctors have allowed us to take Rokie on trips around the hospital, or anywhere as far as I understand, as long as we don’t miss his scheduled prescriptions or feedings.  We disconnected completely from the IV, formula bag, and the leads.  I carried Rokie outside to the play structure and he loved it.  I think it really inspired him to do some physical therapy.  He stood on his own feet for about three minutes.  He turned all around looking at the structure and the little girl who was playing there.  On the play structure he did more physical therapy than ever in the hospital.  I think the outside air is amazing for him. 

 

Everyone from the ICU medical staff is so thrilled with his improvements and recover.  With sepsis and HUS there could be or have been very scary long-term effects.  He doesn’t appear to have brain damage.  His muscles certainly have atrophied but with each day he is getting stronger an stronger.  The surgeons feel good about his bowels too.  Of course, he will need monthly or weekly checkups for years to make sure his kidneys are healing or at least stable, but we will deal with that through time.