Home sweet.....dumb idiot curse you bags of doom

When you come home.


So here's the post that starts to matter.


When you come home. Its not just Yea you get to start cathing and all is well.  The bladder has to heal and it cant have any pressure on it.

So that means that whatever goes into the bladder needs to immediately come out of the bladder.  Now the fun would be to have to cath every hour right? Yea no.  So you come home with bags.  2 of them to be exact.

This handy little bag will be your best friend and your worst enemy. You will love it and hate and want to curse at it and want to hug it.

The reason you have 2 is why you will hate it.  inevitably at one point one will not work. Something will happen. The catheter which will be inserted into his stomach will get pressed right up against the bladder wall or there will be mucus clogging it (if you have a bladder augmentation, which will be a separate post) And since the bladder cant have any pressure you have 2. One will always work (well should always work) 

One will be your monti drain (remember monti is pee pee) and the other will be your super pubic drain.  

This will have to be irrigated (again, with a bladder aug, which we have) So 2 xs a day we take a 60ml syringe and put sterile water into his bladder by unhooking the bag. (the catether is stitched in place and shouldnt go anywhere) so you push the water in and then you pull it right back out. The mucus and water should come right back with it.

Now here's the stinky part. Sometimes you will happily push the sterile water in and then nothing. You pull back and nothign happens. The syringe doesnt budge. And you start sweating. sweating and possibly swearing. 

Have no fear. It happens   The best thing to do is reposition the catheter has much as you can with it being stitched. there is usually a little bit of wiggle room. Or have your child move. If all the water goes into the sp tube then just try again.  with a bladder aug YOU HAVE TO GET THE MUCUS OUT.  no question. 

Then once you stop sweating and the Monti is working and has been flushed. You move on to the SP tube and pray and hope it goes smoother. 

This will be the struggle. At least it was for us.  Our poor doctor had to hear from us a lot because irrigating wasnt working. 

Also, dont leave the hospital without asking for an overnight bag. This was an over site on my part during the revision. Kids pee and they can pee a lot overnight. You need a bigger bag. This one just wont cut it.  It just hooks right on to the end of the catheter so you have take off the day time bag and put on the night time bag.

The day time bags have leg straps.  My sons legs were way to small so that didnt really work.  We used an ace bandage (latex free) and just wrapped the tubes around his waist when he was walking. I wont lie the bag stag stinks. its the worst.  But you make it through.

  Also ask for at least one extra set of day time bags. At some point these are gonna gross you out and you just want new and clean looking. 

Also  you will have a JP drain. aka the ball of blood.  This usually doesnt go home withyou though. So dont freak out too much about this prettiness. 

Again, feel free to comment and ask questions.  feedback helps me no where to go from here.