Day 90.....this feels like a HUGE important number

Tuesday, December 18, 2012

The countdown in on.  Ten more days until the magic DAY 100

Ever since the initial consultation at Children's Hospital Colorado, Day 100 was hung out as a carrot.  After day 100 meds start being reduced.  After day 100 there is less danger of life-threatening infection.  After day 100 the new immune system begins to ramp up its function.  After day 100 there is the possibility of GOING HOME!!!!!   (As I have stated, with Dillon's gut GVH and the steroids and such we are looking at more like day 120 to 130 for going home....but still.....the countdown is on!!!!)

Dillon had clinic today.   We had to be there from 11 a.m. until 5 p.m.  UUHHHGGGG.  Every three weeks he receives these two infusions that just take forever....but they are part of the life-saving cure so we grin and bear it.  We actually had a good time.  We ate lunch, Luca read to me, I read to Dillon, there were various video games, we played Frog Juice (which Miel got us hooked on while she was here), watched some classic Tom and Jerry cartoons.  Other than being trapped in a tiny little hospital room we had a pleasant and relaxing day.  

Dillon's counts are all great except for his liver.....which is presumably taxed because of the PILE of pills he has to take.  We got to discontinue one of his meds today....YAHHHOOOOO!!!!  This is going to be a more common occurrence over the next few weeks.  His steroid was cut in half again so now he is only on it once a day in the morning, which will hopefully help with the insomnia that he has been experiencing.  We continue the IV med that is an antifungal and the overnight fluids at home.

We "celebrated" our discharge today by going out to dinner.  Dillon has lost yet another 2.2 pounds or 1 kg and the doctor told him that he needs to try to focus on meat as his protein source if he can.  The only meat that Dillon has been willing to eat lately is baby back ribs.....and you all know his obsessions with super garlicy Caesar salad.....so off to Outback we went.  The other "rule" the doctor made for Dillon was that when he gets full he needs to "force" 2 more bites.  His stomach is so small and shrunken from the 2 months with no food that it needs to be trained to tolerate a quantity of food large enough to sustain his body weight.  So Dillon ate and ate and ate this evening....enjoyed every bite.  We laughed and talked and had a ball.  Luca was so enthralled with his hamburger that he wrote a note to the cook and folded a dollar bill into it as a tip.  He gave the waitress very strict instructions that this note was to go to the man who cooked HIS burger.  Shortly thereafter we were then presented with the check.....that was already paid!!!!  The waitress, with tears in her eyes, said that we were such an amazing family and that the boys were so cute and well behaved that she took care of our bill for us.  The generosity of people will NEVER stop amazing me. 

Tomorrow we get to see the dentist....oh joy!!!!!  I HATE going to the dentist and I am not a particularly nervous or fearful person......so I can just imagine how Dillon is feeling (actually he needed medication to get to sleep tonight because of his ruminations about the appointment tomorrow).  He has some gray spots on most of his teeth, which they think is a side effect (yes another one) of some of the treatments but we are going in just to make sure they are not early cavities that need attention.  Of course drilling and scraping of gums and teeth is HIGHLY discouraged because of the chance of infection, but if the case is severe then we have to weigh the risks versus the benefits.  The complexity and far-reaching effects of what Dillon's body has been through continues to overwhelm me.

I think that we are now all caught up.....did I leave anything out.....do you have any questions?  For those of you that have trouble posting comments just shoot me an email....I am always happy to respond.

Until next time.....HUGS TO YOU ALL!!!!!

Oh yeah.....one more thing.   Tonight was my sweet loving husband's debut as the Jazz Ensemble teacher at Santa Fe Waldorf High School.  Sean, I am so very proud of you and your musical talent and love of sharing that with kids.  You amaze me every day and your little family supports you in moving into the direction of a more spiritually fulfilling career.  You are my rock.  I love you more every single day.  We are blessed to have you as our man, our leader, our provider, our nurturer.  GOOD JOB SEAN!!!!  You deserve the world knowing how amazing you are!!!!!