Tuesday, August 25, 2015

Urology Updates

Mason had a day of urology testing and appointments yesterday.  Because one of the tests involved a series of x-rays Daddy came along with us (pregnant mommy isn't allowed in during x-rays).  Our day began with the VCUG.  Basically they inject dye into the bladder with a catheter and take repeated x-rays to track where the dye goes, how much the bladder holds, etc.  It can show reflux into the kidneys.  It shows the shape of the bladder.  The great news with this particular test was that Mason's bladder holds more than expected for his age and the cathing and medication he's been on for so long has done wonders for his bladder muscle itself.  The last VCUG we had a few years ago showed a very lumpy, overworked, spasming bladder.  This time we saw a nearly smooth bladder.  He also is NOT refluxing into his kidneys, which is great because reflux damages the kidneys.

Test number two was a urodynamics study.  This measures his body's response to the increasing pressure as his bladder fills, as well as how much his bladder holds before leaking, sphincter function, etc.  Again, we compared the past results to current results and found things look great.  He holds more than four times the fluid that he could before beginning medication and cathing.  Horray for a growing bladder!  Pressures look good. 

We met with the doctor after tests to go over results and the plan - which is to keep doing what we're doing.  That means we continue cathing Mason every 4 hours (8am, 12pm, 4pm, 8pm, 12midnight) and keep his Ditropan dosage the same. 

Wednesday, August 12, 2015

Bowel Management Bootcamp - Day Neverending....

 
(Mason was a happy guy today - he bought this purple monkey at the hospital with a gift card to celebrate getting through a week of bowel management bootcamp.  Then he promptly named it Grape Monkey.)
 
So today (Wednesday) was our follow up in clinic for Bowel Management Bootcamp.  I came in curious to see what the x-ray showed this morning because we've noticed over the course of the week that Mason's poop has become more solid - which is due to bootcamp asking us to lower the amount of miralax we give daily.  They usually get rid of miralax all together and I told them I was 90% sure that wouldn't work for Mason. Turns out I was right.  The x-ray today showed more stool in the colon - he's beginning to not get cleaned out all the way by the enema. 

After a bit of discussion on the options (increase miralax, increase the glycerin in his enema, etc) we went with increasing his miralax.  So that means our daily x-rays are not over with.  Drat.  We will continue to have x-rays and email reports to colorectal, who will email back results and any changes we need to make.

I'm not surprised, really.  Mason IS staying clean, which is great.  However slowly backing up over time is not going to be a good thing at all.  So we may have to work out some wonky routine where we do more miralax every few days to balance out the firming up of the stool (which took a full week because he was on double the dose of miralax before beginning bootcamp - doing a cap full per day).  Who knows?!  One thing I love is that just because our week is over doesn't mean the support is over.  They will continue to accept reports, order x-rays, and communicate daily with us as we figure out the right balance for Mason specifically. 

As for Mason - he doesn't care.  Poop happens.  Enemas happen.  They've been a daily part of his life for so long that he doesn't remember anything else.  I'm so grateful for my easygoing, cheerful little man!

Tuesday, August 11, 2015

Bowel Management Bootcamp - Day 6

Yesterday was a very full day so I didn't get to sit and type up our report.  After a weekend of doing the new foley balloon enemas with Mason and having no accidents I was interested to see what the x-ray would show.  The doctors said it looks great, that the current plan is emptying his colon where it should.  Hooray!  So this is what we stick with for now:

  • Liquid solution of 400mL saline and 30mL glycerin
  • Time putting fluid in/holding fluid: 10 minutes
  • Time sitting on toilet total, including fluid time: 60 minutes
Mason will have an x-ray today (Tuesday) and then on Wednesday he will go to Children's Hospital for a final x-ray and meeting with the colorectal team to finish out his week of Bowel Management Bootcamp.  Then we just keep doing what we are doing.  We will also probably play with the length of time Mason sits on the toilet after this week is over.  During the program they ask you to be very exact in what you do to control all variables.  However we're noticing that Mason doesn't seem to have any fluid coming out after about 45 minutes sitting.  So we'll drop our sit time to 50 minutes and see if he remains accident free.  Why?  Because sitting on the toilet for an hour is a really long time for a 3 year old!  He does amazingly well at being patient, playing games with us or watching cartoons, but if we don't have to sit for exactly an hour then we won't.

The other big thing for Mason yesterday was his fourth IV infusion of medication for his osteoporosis.  It ended up being a long-ish afternoon.  We left at 11am and returned home at 3pm.  It would not have taken so long but one of the things we always require is that they call down the IV team to place Mason's IV.  His veins tend to collapse so we have a standing order in his file that they are to call IV team.  We also have them place IVs in his feet (unless all those veins blow out on a bad day).  So a large chunk of our time yesterday was spent waiting for the IV team to make it to Mason.  They finally got to him about an hour and 45 minutes after his appointment time.  The regular nurses offered to try and start the IV when they heard from IV team that it would be an hour and a half wait.  We declined, telling them we were happy to wait and that we always come knowing we will need to wait.  You could see they were skeptical. That is when I tell them that Mason's record is blowing 6 veins and finally getting an IV placed in the 7th vein.  We're not willing to mess around and are happy to wait for the people who literally spend all day placing IVs to make this as easy on Mason as possible.   

Well, that's really all I have to report today so I'm off to wake Mason and head to x-ray!

Sunday, August 9, 2015

Bowel Management Bootcamp - Day 5

Another day has gone by and no accidents.  Hooray!  We just finished Mason's enema for the night and it went well, no leaking.  I'm looking forward to finding out tomorrow if this is actually cleaning out Mason's colon all the way - he has another morning x-ray each day for the next 3 days.  I will update when we find out how things look tomorrow!

Saturday, August 8, 2015

Bowel Management Bootcamp - Day 4

This is Saturday and the one difference for the weekend during bootcamp is you do NOT go get an x-ray each morning.  Today Mason had zero poop accidents before his evening enema - yay!  He played hard, even cried over something when he was upset, and no poop. 

For the enema itself we kept the same fluid mix as yesterday: 400mL saline + 30mL glycerin.  I (Mom) was on my own to do the enema as Daddy was gone for the evening.  Mason had a small amount of fluid leaking around the balloon near the end of his 10 minutes of holding the fluid in.  No big deal, the catheter stayed in place and didn't fall out (which I've heard can happen).  After the 10 minutes it was just a matter of time waiting for things to come back out.  Mason sits for a total of 60 minutes from start to finish.  Usually he's playing Starfall on the Kindle Fire or watching a cartoon. 

What We Think of the Process So Far:

I like the foley balloon enema setup for the simple reason that I don't have to hold it in place for 10 minutes like the cone enema.  It is a bit more complicated than the cone because we have to inflate the balloon with a syringe, but nothing that is too difficult. 

The fluid mix we're currently trying seems to be more effective than the water/mineral oil mix we used in the cone.  His body is actually pushing out the fluid and some of the poop just from the irritation the glycerin provides to Mason's colon.  He IS still coughing some near the end of sitting time to make sure he's gotten out the last of the fluid and poop.  The difference is that with the water/mineral oil mix he had to cough on and off the entire hour to get anything beyond pure liquid to come out.  So this is a step in the right direction. 

We still have half a week of recording data and will be doing more x-rays to see if he's being cleaned out completely done on Monday, Tuesday, and Wednesday. 

In other upcoming medical - Monday is Mason's 4th IV infusion for his osteoporosis.  He'll spend a few hours at Children's getting that done and then we'll have made it through the first year.  That means it's time for a checkup and another bone density scan to see what the medication has done. 

Foley Balloon Enema Setup

For those who are interested in just what our new enema equipment is I have taken a few pictures.  Be sure to peek at this post to see our past setup with the cone enema if you want to compare the two.

This is the bag, already hanging up on a nail.  You may be able to see the white funnel with a lid that is built into the bag.  That is where you pour in your liquid.  In my hand near the bottom of the photo is the end of the thin tube coming out of that bag, with a white cone shaped end.  I'll show you where it goes in a moment.  One thing not pictured is a slide lock on the tube for stopping the flow of liquid.  It's like the one on the cone enema in the post I linked above, just smaller.

Here is the foley balloon catheter.  Mason has the larger size, with a balloon that inflates with up to 90mL of air.  The smaller size only goes up to 30mL. 

That white cone end from the bag goes right into the blue silicone end of the foley.   It fits nice and snug so no fluid leaks at this joint.

You probably noticed there were TWO ports at the top of the blue foley catheter.  One is for the fluid to go in.  The other is for a special syringe to push air into the balloon of the foley catheter.  You see, one of Mason's challenges is that the lack of feeling and muscle use in his bottom means he can't hold the enema fluid in without help.  Prior to this we held a cone in place, the tip inside his bottom blocking the fluid from leaking back out.  Why?  Because we need that fluid to have time to make it up into his colon and reach the poop we hope to flush out.

Here is a picture of that syringe full of air being pushed in through it's port.  This happens once the blue foley end is already in Mason's bottom and the result is this:

See the balloon?  We have a specific amount of air we inflate the balloon with and when we remove the syringe there is a one way valve and the balloon stays inflated. 

At that point we begin allowing the liquid to flow into Mason's colon.  When it has been in his body for the correct amount of time we use the empty syringe to remove the air from the balloon using the correct port of the foley.  Once all the air is removed the catheter slides out and the poop and liquid have a clear path into the toilet.

Ahem. 

Friday, August 7, 2015

Bowel Management Bootcamp Day 3

This day the plan for bootcamp is pretty simple.  Mason needed to get an x-ray of his colon done before 10am and I was to email my notes for yesterday/this morning to colorectal.  As you can see he was not impressed by having to wait for another x-ray. 

By midafternoon Mason had 3 small accidents in his diaper (boo!) and colorectal had emailed to say there was still stool in the colon on Mason's x-ray so tonight we're upping the glycerin to 30mLs.  They responded to my questions and let me know glycerin can cause nausea, which is why Mason said his belly was getting sick yesterday during the enema (He did not throw up though).  So, knowing that we're increasing the glycerin tonight I'll be sure we have a bucket and extra towel on hand. They did say if nausea becomes a big problem we can try different solution in the enema. 

****************************************************************************
Evening Update:

We did Mason's enema tonight and it was different.  I suppose I couldn't expect it to be easy all the time.  Tonight we put the fluid in slower than yesterday because every so often it would leak.  The balloon didn't come out, but fluid was getting around it.  We did inflate the balloon more to see if that would help and can inflate it further if needed. 

Mason did NOT tell us about any nausea.  I asked how his belly felt and he said good, so the increase in glycerin doesn't seem to have bothered him.  He sat for the full hour, watched some cartoons on the Kindle Fire, played games with mommy, and ultimately asked to get down. 

He had a decent output into the toilet.  Now we watch and see if he has any accidents between now and tomorrow evening's enema. 

I did get pictures taken of our new equipment so watch for a post about that to show up sometime this weekend!