January 14, 2012

January 14, 2012

As usual, the schedule has changed.  George said he is going to stop telling his boss when he is going to be back at work because he is starting to feel like an idiot everytime he has to call him back to tell him things have changed.  Here is the new plan:
Sunday- stem cell harvesting (pheresis) provided that the cultures from Friday don't grow anything and nothing else changes.
Monday- come home
Wednesday- Start round three of chemo. We were finally able to arrange our chemo schedule so we won't have to do so much of it during the week days.  That way we can give more time to work.

As for an update on last night, things calmed down overnight and Clayton slept peacefully and woke up happy.  We aren't sure what made his blood pressure dive.  We've always had problems with high blood pressure not low.  A side effect of the chemo has been better blood pressures though, so for now we are going to try and take him off his blood pressure medicine until the numbers tell us to do otherwise.  As for his counts, they are very high which is perfect for harvesting provided it doesn't get postponed yet again.  So we're keeping our fingers crossed.,




Playing peeka-boo with Dad.


The past few days have just been insane.  You would think that some of what we are doing would involve a lot of sitting around and even opportunities for napping, but no.  A third of the day is usually spent talking to doctors and nurses about Clayton stuff, another third playing, pacifying and cleaning up after Clayton and the other third trying to take care of things on the phone or the computer.  Thursday, we literally had people coming in and out of our room at least every thirty minutes from 8 or so in the morning until midnight.  It isn't even that we don't want to talk to the various people (well some we don't), mostly it is a just a matter of wanting a few minutes of peace.  I even sent someone away on Friday when they walked in as George and I were trying to eat.  It has become rare for us to be able to eat at the same time much less eat a warm meal.  All whining aside, today has been fairly quiet and it isn't usually as busy at USACW.
Anyhow, we got moved to the Bone Marrow Transplant floor on Thursday and this is the same floor we will be on when we come back for the transplant.  It is such a departure from the busy oncology unit.  You could hear a pin drop up here.  There are only 4 more kids on the oncology unit then there are up here, but the environment is different.  This floor is all about isolation. Wash in, wash out, don't hang out in halls, can't share a bed with your child, gown and gloves,etc.  When you arrive on the floor, the unit is to the right and you have to ring a doorbell to be admitted to the "sani rooom".  From there you have the clinic to the right and the in-patient unit to the left, but before you can go in either, you have to scrub, scrub, scrub.  The sinks in this unit don't even have knobs they have pedals because of germs.  It is a very different world up here.
 It will be a long month when when we come for transplant. Here is a glimpse of what our digs will be like:
You can see how George and I unfold our chairs into our beds up against the windows.  Comfy!  When we're here to stay for a while, we'll get to make the place homey.  They have mats that we can put on the floor for Clayton to play.  Lots of rules though, they gave me a 210 page book to read to prepare for the transplant and life during and after.

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