Day 43....let the eating begin

Thursday, November 1, 2012

Today, November 1, I am going hardball with Dillon's eating.  Each day I am going to "force" him to eat a few bites of real food several times.  They say if you don't use your stomach "muscles" then they forget what to do and they just sit still instead of churn around when food goes in...he is close to that point.  So this morning it was cream of wheat with a tiny bit of milk, butter, and brown sugar.  He ate it about 30 minutes ago...has been breathing through the nausea that hit as soon as he swallowed...do we have success on the first "FORCED" feeding....I don't know.  I just think if he would get started it would snowball and his stomach would get "stronger" and then he would be more willing and able to eat.  They started him on an appetite stimulant.  I am wishing we had easy access to medical marijuana to combat the nausea and the lack of appetite....won't that be more natural and better for him than the 4 anti-nausea meds and now the synthetic appetite stimulant???  Apparently the process of obtaining medical marijuana is arduous and takes up to 60 days, aside from the fact that much marijuana is coated in mold spots that could sprout in Dillon's body and kill him....darn it!!!


I told you about the costume contest at the hospital that Dillon insisted on staying for on Halloween.  Here are some photos of that.  It was staff groups from the hospital.  It was so fun.  There were literally hundreds of people gathered in the lobby of the hospital.  The middle of the hospital is open from the first to the fourth floor with glass walls all the way around....so you can stand on the first floor and look up to the 4th floor and all you see is glass and walkways.  Well each of the floors was FULL to capacity with people looking down through the glass to the first floor where the party was happening.  There was an amazing energy and fun spirit pulsing through the crowd.  I was nervous for Dillon because we were way up front. He was in a wheelchair and I thought to myself...."if this kid decides suddenly that he needs to get out of here because he is overwhelmed or feeling sick we are in BIG trouble".  There was wall to wall people for as far as I could see and there was no path or opening to escape.

wall to wall people watching the costume contest

Scooby Doo and the gang

Ms. Pacman and ghosts

Alice in Wonderland

Thing One and Thing Two

Ghost Busters

Cars

Very Hungry Caterpillar

The hospital "mascot" or logo

 Well....I have been writing this for a while and Dillon is now asleep....the cream of wheat is still IN!!!! YAHHOO

Sean and Luca left this morning.  They got picked up by a shuttle here at the apartment at 7 a.m. (Sean wanted to be super early just in case there were backups at the airport because of the closures happening on the East coast).  It is quiet and calm now.  We LOVE LOVE LOVE having our boys here but calm and quiet is not something that happens easily when they are here.  It was lovely to be a family again all in the same place, sharing meals, doing dishes, watching movies.  We even got to see the classic Charlie Brown Halloween...all crammed on our tiny couch eating candy and popcorn!!! 

Dillon's checkup yesterday was GREAT!!!!  He has not needed platelets since last friday the 26th (in the hospital he got them every other day, sometimes every day, and once in a while twice a day).  He also has not had red blood cells since he left the hospital.  That is HUGE!!!!!  It means that his body is doing 2 things: One.... it is "holding onto" the transfusions that he has received and Two.....his body is beginning to function and produce some of its own platelets and red blood cells.  Although they are immature and not fully functional they are beginning to grow, which means the bone marrow is really settling in and getting to work.  Tomorrow he has another lab check to see if he needs any transfusions.  Monday is a long appointment day because he is getting two IV medications that are administered intermittently throughout the post transplant period...and monday is the day.  So we will be in clinic for several hours.  He gets a private, glass enclosed room with a bed and a rocking chair for these infusions so we are both "fairly" comfortable.  I am able to leave and grab food if I need to.  There is TV and XBOX 360 in the room as well.  Dillon's preference is to sleep through the whole thing if at all possible :))  Those video games have no hold over this boy when it comes to getting his beauty rest...hahaha.