BMT Day +3

Saturday, September 22, 2012

I have said this so many times but it is true yet once again.....three days have slipped by without me blogging.  I am sure you are all wondering what is happening.  Sorry about the absence.  Things are so busy and intense around here that pretty soon it is midnight and I am in bed and yet another day goes without blogging.

One thing that has happened is that Big D's nausea has decreased quite a bit.  He is still not feeling "normal" in his belly but the incessant, uncontrollable misery of extreme nausea 24 hours a day has eased....for now.  We are told that most kids begin their nausea and vomiting AFTER the transplant.  So we are holding our breath, wondering if Dillon was yet again just outside the norm and had his nausea and vomiting early....or if there is more to come just around the corner.

The other major thing that is happening right now is called mucositis.  It is the breaking down of his mucus membranes in his body, the main one being from his mouth all the way down his GI tract.  This presents itself as horrible sores in his mouth (which he had once before at UNM) but this time it is much more severe because of the radiation and it is going all the way down his esophagus.  A layer of the membrane is actually breaking down and sloughing off....which then ends up in his stomach and causes him to vomit the tissue and blood and mucus back up...which then burns his throat because of the stomach acid.  It is terribly uncomfortable and it scares him when he throws up so much blood.  He also has a fair amount of blood in his urine, as the urethra is also a mucous membrane.  The nurses say if we could look inside it would look like hundreds of paper cuts all the way down into his stomach and even into his colon and urinary tract.  This is obviously causing a significant amount of pain....extreme pain really.  The treatment is pain meds, which take the edge off and allow him to sleep most of the day.  There is no "cure" and there is nothing to help it heal.   Basically, he has to wait until the layer of tissue is finished sloughing off and then he has to wait for his white blood cells to heal it and for his body to grow back a new layer of skin on the inside.  His new bone marrow will not even begin functioning for about a month, which is where the white blood cells originate.....so it is a long road.  He is not eating or drinking at all and won't for several more weeks, they say.

You all saw the list of meds....well there are 4 more added to the list now.  It is a never ending flow of substances into my boy's body via his central line.  There are only about 45 minutes during each 24-hour period that he does not have something flowing....and that is the window of time every afternoon that he has to get unhooked and take his shower. 

That is pretty much all that has been happening since the transplant.

Oh yeah....the way they count the days is like this.....

The day of transplant is called day 0....so today is day +3 (as in 3 days after he received his cells).  The very earliest that people get to go home (I mean home home, not to the apartment) is day +100 and that usually only happens if there are no complications or bumps in the road.  I counted on the calendar and day +100 is about a week past Christmas....so I expect we won't be home until January.  We are looking forward to enjoying the Denver snow.

Many folks are asking...."Shari, how are YOU doing?"  I am doing well.  I don't know how but I am really okay.  I am sleeping well.  My worry-o-meter is under control right now.  I am not working at all, so that piece of the stress puzzle is okay (other than that pesky little issue of not having an income).  I have had time to read this week....which has been one of my favorite things to do my whole life...so that feels really good and relaxing (in fact I treated myself to a couple of new books when D and I went do Barnes & Noble before we were admitted to the hospital).  Eating is a difficult piece right now.  I am not allowed to eat in Dillon's room.  There is one little room called the family lounge down the hall where I can eat, however, that is for all 10 families that are here....and only one family can be in there at a time...so if someone is in there, then I just have to wait or I have to leave the floor and eat downstairs.  The other piece is that I cannot have ANY fresh fruits or veggies on the floor...so to drink my smoothies I have to make them at the apartment, keep them in a fridge that is NOT on this floor (some other random fridge around the hospital) and then I have to go out of this area to drink them.  It is definitely a complication in the day and I need to work harder and practice more on how to make it workable.