Tuesday, November 3, 2015

Quiet Blog, Quiet Life

Honestly, I have been slack on blogging here but have no huge updates.  I'll try to hit the main things:

  1. Mason is in good health generally.  He's happy, growing, learning, and so full of personality.
  2. He still has occasional headaches.  We wonder if they are related to his bifocals.  Neurosurgery checked him over and the shunt and everything else looks fine.
  3. Bowel management (enemas) is going great.  We've moved his enema to afternoons instead of evenings and love having our evenings free for family time and relaxing.  He is generally cleaned out well with the balloon enema and has no accidents.  It takes us about 50 minutes from starting the fluid to getting off the toilet.  He does still require miralax daily for the enemas to be successful (keeping poop soft enough that it will come out). 
  4. Feet/legs and bracing - This is one area things are not working in.  He outgrew the standing braces (HKAFOs) but at the same time his right foot has contracted and so his shorter braces (AFO, begin just under the knee) don't fit either.  And the bracing doc can't fix braces enough for that, we're needing to see his orthopedic surgeon and possibly looking at another surgery to release that foot tendon again.  As I'm having baby #9 this week we've chosen to wait a bit on pursuing the appointments that will lead to that decision, we'll revisit it come January and are working on stretches to see if we can change things in a good direction with the foot instead (which is what his surgeon prefers we try first). 
  5. Mason's osteoporosis has improved!  We had his yearly checkup with the nephrologist and a bone density scan and while his numbers are not yet normal, they are better.  We will continue the IV infusions of Zolodronic Acid, spacing out to every 4 months instead of every 3 for the next year. 
  6. Large Motor Development - Mason is at a pretty stable place right now.  He can climb into and out of his wheelchair, climb a flight of stairs, get into and out of chairs/on and off furniture, and shows large amounts of strength in upper body.  His balance when sitting is decent, and we don't expect it to improve beyond what he can already do.  He generally can do anything he really wants to do, whether using his wheelchair or not, and if he can't figure out a way he is not shy about telling us what he wants to do and insisting we pick him up/carry him/ help him. 
I think that's it!  He currently loves pirates (Jake and the Neverland Pirates, Peter Pan, and pirates in general), is beginning to enjoy building with Legos, still loves playdoh, and talks up a storm.  He sleeps through the night in his toddler bed (we cath him at midnight but he sleeps through it).  He does not like loud noises (very normal for someone with hydrocephalus and a shunt) but he does like music and dancing if the music isn't too loud.  He does not like to sing.  He does like playing instruments (we have piano and guitar) and is asking for drums for Christmas.  We'll see...

Wednesday, September 9, 2015

Visiting Caves and other Updates

A fun note - we went to some caverns about an hour and a half away from us on Labor Day.  Only 1/3 of the hike is wheelchair accessible so after the first portion Mason rode through the rest of the caves on my back using our Ergo carrier. 

Yes, 8 months pregnant me.  It was easier for me to do that than chase my 2 year old through the caves.  I left that job to my husband. Mason's eyes are closed in this shot because of the flash - it was bright after being in the dark caves for a while.  ;)  The pictures in this post are from that day in the caves.

Life moves ahead with the usual cheerfulness on Mason's part.  He is having headaches occasionally and we are not sure why (we visit the neurosurgeon next week).  He has outgrown his AFOs (short leg braces) and HKAFOs (standing braces) so I need to get appointments set to work on those.  In other words, things never stay the same and he's growing.

Bowel management goes relatively smoothly.  We are navigating the waters of getting settled with a new medical supplier for his enema supplies (their first shipment sent us one item of the 10 we needed -- and it was latex so he can't use it!).  He is almost always poop accident free now - which is wonderful. 

He will also visit his nephrologist later this month to have a bone density scan and see what the results of his first year of IV infusions for his osteoporosis are.  We will make a dosage and frequency plan from there (more or the same dose, IVs every 3 months or more or less often). 

Also, one more note - I have had to close the comments on this blog due to spam comments full of hatred for our pro-life (even in the case of disability) stance.  It's sad that people feel that way because all life is precious.  Hopefully they will continue to read Mason's story and find their hearts changed.

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.