Day -4

I swear that time is not a constant in the hospital.  It either goes very, very slow...when you are waiting for chemo to start, or waiting to get the heck out of here.  Or it goes very, very fast and before you know it, it's 9pm and you have had a shower or dinner yet.  Today was definitely a time suck day.  Though, I do know where our time went today.  We were very busy.

Nate continues to do well.  His eating seems to have slowed down a bit, but he is still eating.  I spend a lot of the day running back and forth between our room and the family lounge (where there is a fridge and microwave) making and getting food for Nate.  He can't decide exactly what he wants most of the time.  He is still throwing up at the thought of medication, but then, gets right on with his day.  They've gotten rid of some of his yucky medicines, but as long as his tummy is still wonky, as soon as he sees those syringes...he turns green.  Still, I am very happy with his level of nausea because he is only throwing up a couple times a day and it isn't slowing him down at all.

We moved rooms today.  Some rooms have benches to sleep on and some have chairs that lay flat.  We far prefer the "bench rooms".  The bench is much more comfortable to sleep on and it is right by the window and provides a nice place to have Nate walk over to during the day to sit and play.  I requested a switch to a bench room if possible, when we got here, and one became available today.  This room rocks!  Really, it's the little things that get me excited.  It's quite a bit bigger and just a whole lot more comfortable.  We are going to be here awhile...we might as well get comfortable.  It was a bit of a process to move over (we are going to need a U-Haul to move out of here when this is over), but we are all settled in now.

Today was also "Nate's day" in the play room.  They have a play room on this end of the 7th floor for the bone marrow transplant kids.  Normally, the kids are allowed to play in there as long as their ANC is above 250...they also used to be allowed to wander the hall.  This is not the case right now because it is RSV and flu season.  Apparently, last season they had a flu that got on to the floor and almost killed a couple kids, so all the kids have to stay in their room, no matter what their ANC is.  They have decided to let the kids have access to the play room one day at a time and it gets cleaned in between each kid.  Today was Nate's day.  Unfortunately, we didn't get confirmation that he could go to the play room until the afternoon, when most of the day was over.  Nate was a good boy and wore his mask to walk to the play room...something he NEVER does.  Really, the play room was nothing to write home about.  A few toys, but not as much fun as the main play room.  It was just nice to get out of the room for a bit.

I also spent a great deal of the day talking to the doctor, nurses and pharmacist about a medication error.  Two of Nate's chemo drugs are 24 hour infusions.  They were hung yesterday afternoon at about noon and because of a tubing change, started infusing about 2:30pm.  Which means the infusions should end at 2:30pm today and the bags would be switched.  Last night, about midnight, one of the bags went dry...all the medication had been infused.  I didn't know anything about any of this until this morning, but apparently last night everyone was called at home and trying to figure out what happened.  All of the nurses checks and balances were done.  All of pharmacies checks and balances were done.  We sit here and watch the nurses check themselves when hanging the chemo, making sure to double check the patient, the drug and the infusion rate.  I asked to pharmacist to come up and talk to me about their checks.  The pharmacist spent a lot of time going over their whole process.  Everything checks out.  So, what happened?  We don't know.  It will probably always remain a mystery.  Was Nate given the medication too quickly?  Honestly, this would be the best scenario because this chemo can be given faster and would probably cause no harm.  Was he given the correct medication?  Everything from pharmacy says that he was.  The only conclusion they can come to, is that it was a faulty pump...the same pump that gave the meds correctly the previous two days.  Unfortunately, a faulty pump is not very likely...but, there is no other explanation.  I am choosing to give this to God.  Everyone involved has gone over this again and again.  There is nothing more that can be done.  I am praying for protection for my boy.  Protection from the poison we know is going in to his body at the correct rate and protection from the unknown that happened yesterday.

At about 2:30pm tomorrow...a little over 15 hours from now...Nate's chemo will end...FOREVER!!  That's right!  Nate will not have any more chemo...God willing...EVER!!  We still have so far to go, but I am grateful to have that part of this journey behind us.  I am excited to see his hair again.  Nate has been off chemo so long (clearing up the blood infection) that peach fuzz has started to grow all over his head.  He also has a bit of eyebrows and beautiful lashes coming in.  Unfortunately, this will all fall our in another week...but, it is a beautiful glimpse of what we will get to see in the next couple months.