Thursday, October 18, 2012

Blake's Day

It occurred to me that I've never really blogged about what our day is like with Blake.  For the most part, he really does get to be a normal kiddo during the day.  It might not seem like it, but he does and for that we are grateful. 

Blake gets meds four times a day.  In the morning he gets all of them, 7 in total.  He gets two at NOON, one at 5 PM and 4 at bedtime.  This would be a "Jamie's department" sort of thing.  They continually tweak and make adjustments, so I'm the one that always knows the current dosages.

A lot of Blake's meds are vitamins and supplements.  Because the kidneys can't do what healthy, functioning kidneys are supposed to, Blakers just needs a little help.

This is Blake's abdomen region.  I'm not sure if this would freak a person out or not.  Aaron and I have been looking at this for the past 17 months, so it's just normal to us. 

On the left hand side is his dialysis catheter.  On the right hand side is his g-tube. 
The end of his dialysis catheter.  No, it doesn't get any shorter than that.  We have some netting that we tuck it in to.  That cap on the end?  We take that off and that's what gets hooked up to the dialysis machine.

 This is the g-tube with his extender piece in.  This is used for his feeds since Blake hardly takes anything by mouth.  Kidney kids have an oral aversion since they feel sick to their stomachs all the time.  In addition to feeds, it is a lifesaver because we give Blake all of his meds through this as well.  It goes right into his tummy.
This is what the g-tube looks like without the extender piece in.  It actually kind of reminds me of the top of a beach ball.  It sticks out kind of far, but not terrible.  We have to keep onesies on him so it doesn't catch on anything.  Yes, it can come out.  Yes, it has come out.  Yes, we can put it back in ourselves, although I would rather have Aaron do it than me.

So, when we go to give meds we take the plastic top thing off.
 And get ready to put the extender piece in.
 And in go the meds.  It's pretty simple actually. :)
 Blakers knows the drill...
 And so does Bowen.  I actually find this really endearing that Bowen always takes the empty syringes and "gives" Blake his medicine.
 The set-up in the twins' room:

From left is the dialysis machine on the dresser.  On the iv pole is his feeding machine and that blue machine clear to the right is his dinamap (blood pressure) machine.
Dialysis is a pretty easy thing.  That clear liquid fills up Blake.  It sits there (dwells) for 35 minutes and pulls off excess fluids and toxins.  Then, it drains it off.  Then is fills him up.  Sits there for 35 minutes, then drains.  Blake is hooked up for 10 hours every night, for a total of 12 cycles. 

Every morning and every night we have to take Blake's blood pressure, temperature and weigh him.  This is the first half of our log sheet from October.  At the end of every month, we send them to Iowa City. 
Blake just takes everything in stride.. :)
Coming out his pj bottoms on the left is his dialysis tubing and the right is his feeding machine tubing.  Because Blake doesn't take really anything by mouth, his nutrition (formula) has to come through his g-tube.  We hook him up during his naps and overnight.
And........lights out. 
I'm not sure what this sounds like to a "normal" person.  By normal, I just mean someone who isn't exposed to dealing with a child with kidney disease on a regular basis.  Like I said, we're used to it.  The kids are used to it.  It's just what we do.  :)

We feel blessed that Blake has done as well as he has on dialysis and we pray that this continues until he can get his kidney transplant. 


Val Gregori said...

I just have to say that you guys (Jamie, Aaron and Blake) are amazing! There are people who would not be able to do the wonderful job that you are all doing. To me, you all are rock stars!!

Bodie said...

You are wonderful parents with and awesome family! I kno wit is not what you thought you rlife woudl be but on the other hand I know you would not change it. You keep doing a great job!