December 9-11

December 11, 2013

Rokus moved rooms today!  He is no longer in the ICU.  It is good and bad.  Good that the doctors believe he's healthy enough to move on but bad that we get a lot less care.  It is one nurse for four patients as opposed to one-on-one in the ICU.  I am happy that he is getting better though.

Rokie's ostomy bag continues to fall off regularly and barely lasts four hours.  The hospital staff does not seem to have any solutions after a few weeks now so I am taking it upon myself to figure it out.

December 10, 2013

Rokie's ostomy bag keeps falling off and it is really problematic.  If it continues to do so then I don't see how we can go home.  I hope we can figure something out.

December 9, 2013

Rokus is doing so much better.  The nurses are giving us more breaks, coming to visit Rokus, and just see our miracle child.  So many nurses and doctors are really surprised at how well he is doing.  Unfortunately though, his kidneys and bowels are still not healing.  They both want the opposite treatment.  The kidneys want lots of fluids through the GI tract and the bowels want very little.  Rokus is also learning how to eat again.  He seems to vomit everything he eats but at least he has the desire for food.

Since I visit him on the weekends, all the fun places at the hospital are closed so Rokie and I make up our fun activities.  He loves riding in his wheelchair.  He always asks for walks so he can leave his bead and return to a "normal" life again.  I took him down to the cafeteria and there we kicked around a ball and I made him chase it to develop his muscles.  Everyday he gets stronger and gains balance.

December 5, 2013

This week has been interesting.  Rokie is much better than before, but we are having complications understanding what is the right treatment for his body.  Basically, his kidneys and bowels need healing; however, the treatment for each organ is the opposite.  What works for the bowels reduces healing for the kidneys and vice versa.  The doctors say that if Rokie is able to take foods orally then perhaps he can help heal both the kidneys and bowels simultaneously.  As of today, they are wanting us to challenge him with any foods he is really interested in just to see how well he does.  I am praying he can improve and process real foods quickly.  If he can do that over the next 1-2 weeks then he can avoid an additional surgery.  Come on Rokie.  You can do it.

After today's meeting with the doctors, it sounds like Rokie won't come home this month. 
As far as his long-term care is concerned, the doctors believe he will need regular checkups his whole life.  His kidneys are at least 60% failed right now.  We don't know if they will ever be 100% healed.  We hope his bowels will function normally even though sections have been removed.  He currently has an ostomy bag that we will be responsible for taking care of.  Whenever he comes home, there is a chance he will have an IV and feeding tube.