Day 107.....WOW.....where do I start

Friday, January 4, 2013


Today's clinic visit was FANTASTIC and it had Dillon's spirits FLYING HIGH all day long!!!!

There is a whole list of changes.....

Number One:  IV steroids have been discontinued.  YAHHOOOOO!!!  With that discontinuation, we will see the side effects that have "accumulated" in his system diminish over the next few weeks (the insomnia, the mood swings, the anxiety, the chipmunk cheeks, to name a few of the external obvious ones). 

Number Two:  As a result of #1, Dillon gets to stop his IV micafungin (an anti-fungal medication).  What this means is NO MORE IV MEDS at home.  We continue with the fluids but that is overnight and it is not a medication so we aren't counting that :))  He was given strict instructions at clinic today to DRINK DRINK DRINK.....the nurse actually wrote it into his discharge notes hahaha!!!

Number Three:  As a result of #1, Dillon gets to discontinue the yucky mouthwash that is an antibacterial, tastes terrible, and has made his teeth gray (something the dentist has assured us can be buffed off once Dillon is cleared to have dental work when he is 1-year post transplant). 

Number Four:  As a result of #1, Dillon gets to discontinue nystatin, which was 2 pills twice a day (so that is 4 pills less).

Number Five:  Two other meds are being weaned (Zoloft for mood stabilization and amlodapine for blood pressure).  They are going to be every other day for a couple of weeks and then those too will be discontinued. The steroid in combination with one of the anti-rejection meds made Dillon's blood pressure quite high; now that the steroid is done the blood pressure should normalize.  Dillon has been a model patient and they feel that he is flying through this whole thing with quite high spirits so they are not overly concerned about stopping the Zoloft. The nurses and doctors congratulated our entire family and support team for caring so well for each other and thus for Dillon and his emotional needs.  Also, the steroids have a HUGE negative effect on mood....so bye-bye mood medication.

GRAND FINALE:   As a result of #1......HE GETS TO STOP THE NOSE SPRAY!!!!!!!  Many many many weeks ago (the week before transplant) Dillon was begun on this terrible, horrible, disgusting, painful nose spray.  He had to spray it 4 times in each nostril twice a day.  He would often cry and/or scream when he used it...every day for the past 100+ days!!!!  He dreaded each and every single one of those days.  (This is a kid with a history of HATING anything up his nose, even saline solution when he was at the peak of his allergies in Santa Fe).  He often told me I did not understand....and indeed I did not.  I could only imagine how bad it was and then adding all of the skin sensitivity and the nausea on top of that during the hospitalization it made the whole thing even worse.  Well today was the day.....I tried the dreaded nose spray.  We had a little bit left of his last bottle.  In my nose it went....HOLY CRAP (excuse my language)!!!!  I almost cried and I wanted to scream. It burned all the way up into my eyes, under my upper lip, and after a few minutes that sensation crawled down the back of my throat.  HUMMMMM , I wonder why Dillon's nose has been running and he has been clearing his throat incessantly for the past zillion days....JEEZE this stuff is bad.  What crazy doctor "invented" this stuff and requires kids to use it???  Dillon was pretty pleased to watch my suffering....."See Mom, I was NOT exaggerating!!!"  No Mr. Pickle, you were not!!!  After that experience I had an idea.  I suggested we KILL the last bottle of nose spray.........see below.

Big D and his dreaded enemy

Dillon delivering the nose spray to its doom

The aftermath of the destruction!!

Totally dead nose spray.....never to be seen or used again!!!!

Steroids cause suppression of the immune system functioning, which increases the chances of infection.  All of the above discontinuations would have happened on day 100....except that Big D was on steroids, which prolonged his need for the extra protection that these medications provided against various infections. 

The question of the day....what was more fun for ME.....running over the bottle of nose spray or taking pills OUT of the pill box this evening???  Hummmm, that is a tough one....I think the nose spray wins!!!  (Fine print::::There were actually 2 pills added today because of things that will happen in Big D's body as a result of stopping the steroids but they will only be for a month or two.)  

Dillon celebrated today's big accomplishment and milestone with a 3-hour gallivant around Denver locating and purchasing (for himself) the perfect pair of basketball socks.....Mission accomplished and Dillon is now ready to take on the court.