The day before....

Tuesday, September 18, 2012

Today was Dillon's so-called day of rest.  He was extremely sick today from the moment he woke up until he finally drifted off to sleep in an exhausted state of bewilderment.  This boy is so courageous and strong.  Between countless episodes of vomiting today, he took all of his meds and did all of his mouth care.  He is on an unfathomable number of medications right now and many of them don't come in an IV form....with all the technology and billions of dollars in the medical research world you mean to tell me that someone has not "invented" all of these meds in IV form so that people don't have to swallow them when they are extremely ill...are you kidding me??!!  This mouth care regimen takes almost an hour in which this child has to swish and swallow and spit and brush and wait and swallow more...three times a day....all in the face of a stomach that cannot even tolerate water....ARE YOU KIDDING ME??!!  And the rule about everyone takes a shower every day....NO MATTER WHAT...this boy could hardly hold his head up and the nurse is prodding him into the bathroom.  With tears streaming down his sweet tired face, my Dillon dutifully did as he was told...scrubbed his head, scrubbed his feet, and sat there trembling when the water was turned off.  I rushed in with a warm blanket and just bundled him up and got him back into bed.  I know there are rules and reasons for all of this stuff....good reasons....but my child is suffering so and pushing himself to the brink of existence and I just don't feel like taking a shower should be the thing that pushes him over the edge.

After a good long cry for both of us, we finally decided that in deed these days are terrible and long and uncomfortable and unbearable.....but we also agreed that after each one passes we are one day closer to going home healthy....FOREVER!!!  With shoulders slumped and big sad eyes, our loving boy asked for a hug and then dozed off to sleep.

Everyone wants to know what medications Dillon is on...so here it goes......

acyclovir every 8 hours
amphotericin B nasal spray twice a day (This spray stings so bad that it makes his entire face hurt)
acetaminophen every 6 hours
benzocaine as needed
calcium carbonate as needed
calcium gluconate twice a day
chlorhexidine gluconate three times a day
clortrimazole troche three times a day
cyclosporine for 2 hours IV every 12 hours
D5W+KCl every 4 hours IV
diphenhydramine every 6 hours
fat emulsion 20% over a 20-hour period every day IV
gabapentine three times a day
hydrocortisone sodium succinate as needed
immune globulin 10% IV daily
lorazepam every 6 hours
magnesium oxide as needed
meropenum every 8 hours IV
micafungin every 24 hours
nifedipine as needed for blood pressure
Sodium chloride normal saline continuous IV
nystatin twice a day
ondansetron every 12 hours
Phenol spray
potassium chloride
sertraline daily
TPN (IV nutrition)
melphalan chemotherapy
ATG
cytarabine
furosimide
methylprednisolone sodium succinate
Lasix
ranitidine
promethazine
packed red blood cells as needed
platelets as needed

Dillon is finally asleep so I am going to go to bed too.

May our white light, golden energy, and prayers be strong for us tomorrow!!!