Day 119......we have a plan!!!!

Wednesday, January 16, 2013

.....deep breath in before I plunge into this mass o' info.....

So the vitamin D level recheck came back finally.  Dillon's level is 9.  The first time around it was undetectable.  When most kids go to the doctor and get a vitamin D level checked a 25 would be considered low and in need of a supplement....so 9 is EXTREME.  When a "regular" person is told to take a vitamin D supplement they are usually given 400 I.U. per day.  Dillon is taking 3,000 and could go as high as 15,000 if his body does not respond within the first month to the 3,000.  One of the main side effects of raising the vitamin D too quickly is seizures.  You knew there had to be something bad, right.  We cannot just get a treatment and go about our lives....we constantly have to add these freaky scary side effects to our list of stuff that we are watching for. Calcium was also low and that is supplemented with 1,000 mg three times a day for a few weeks.  The other low blood level was zinc and that is being supplemented as well.  It is just 15 mg a day, which is actually a small amount, so this one is less toxic on his system than the vitamin D supplement.

Now to the bones.  His x-ray series came back showing low bone density, but not at a dangerous level, not at a "break a bone if you trip and fall" type of level.  The cause for the low bone density is complex:  One is that he was basically bed-bound for weeks at a time beginning in May.  He had spurts of being up and about but if you add up the number of days that he was in bed so sick he couldn't even walk all the way to the bathroom......it is a lot and his bones really missed the weight-bearing exercise; in addition to the lack of sunshine exposure for the past 8 months.  Second is his nutritional status.  Obviously not eating at all for weeks and then continuing to eat a very limited amount of calories and nutrients for months on end (which is still continuing) his body was not getting what it needed.  The IV nutrition that he received in the hospital is not assimilated well by the body so even though he got enough calories to help maintain his weight, his body was still "starved" in a way for nutrition.  Now you add the use of steroids both during his treatment at UNM in Albuquerque and the most recent 60-day course here in Denver for the gut GVH and you have a lot of calcium leaching happening....this is one of the main side effects of steroid use.  So his actual diagnosis at this point, as far as bones, is osteopenia, which is a couple of steps below osteoporosis. 

The vitamin issues could be contributing to his continued nausea, low appetite, and inability to drink enough.  With that being said.....if these things do not improve in the next 2 weeks of supplementation then we will be getting some more testing done.  The other suspect for the continued belly problems is some of the meds (big surprise )...not just the fact that he has to swallow so many pills multiple times each day, but the actual medications themselves.

Now that the GVH has officially been healed and we know that Dillon won't be going back on steroids.....he gets to begin tapering some of the anti-rejection meds, one of which is notorious for causing belly trouble.  So this week his dose was cut in half and next week it will be discontinued altogether.  The doctors said that some kids find that a few days after the last dose suddenly their tummy is much improved.  So everyone....cross your fingers that this is the scenario for Mr. Pickle.  This particular medication is vital and essential to not rejecting the transplant....which is why he was not allowed to taper off until now.

There will be a steady taper of a couple of the other meds over the next month (mind you....he had to add the vitamin D, zinc, and calcium so his actual pill count is in fact it is up by 2, darn it!!)

Over the next month Dillon will also undergo a handful of tests for his lungs, kidneys, heart, ears, eyes, teeth; another bone density check; in addition to another PET scan (which checks Dillon's whole body for any sign of tumor activity....this is just a checkup type of scan, no one expects anything to show up, especially given his most recent bone marrow biopsy results).....plus one more surgery.....the removal of his central line/Broviac!!

After all of this stuff; the tests, the med tapers, the continued work on eating and drinking-----

The current projected date for us to go home is the week of February 18.....after the Celtics basketball game which is on the 19th....the grand finale of our time here in Denver.

The doctors and I discussed all of our options and we decided that this would be the best and most convenient plan for Dillon and the family. This is, of course, if all goes as planned.  The date could change so don't mark it down on your calendars just yet.  I was so impressed and grateful that the team actually sat down with us, asked us our preferences, our plans, our desires, our fears, and we came up with the schedule for returning home.

People ask me what will happen after we get home....will Dillon be "done"......
 Followup once we are back in Santa Fe will be going to UNM every 2 weeks to get checkups and blood work and coming back to Denver monthly for infusions, exams, and blood work.  That will continue until his 1-year anniversary in September.  I don't know what happens after that :))