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...

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.

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!

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!

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!

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. 

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!

Bowel Management Bootcamp Day 2

This was a long day, which is why I didn't get to typing it up last night.  One of the things they do is a contrast enema to inject dye while doing x-ray to take multiple photos of the child's colon.  Basically they map out the colon to see if it is normal in length, in diameter, etc.  They look for poop in the colon to see how effective whatever bowel management measures you've been using up to this point are.  For us, this meant I needed to bring along an adult helper because I'm 27 weeks pregnant and can't be beside Mason during all the x-rays.  That meant Grandma came along for the day!  We left our house at 1pm and did not get home until 6:30pm - a long day for just two appointments.

During the contrast enema Mason did pretty well, he just wanted them to stop talking to him and get done what they needed to.  Before they begin the enema they take an x-ray to see what things look like (how much poop is there and where).  Then the process takes about half an hour between putting in fluid, taking repeated x-ray during that, draining out the fluid, and cleanup. 

What we found is that Mason's colon has some extra length with a few curves that is not typical but is also not crazy enough to need surgical intervention.  He does not have any unusual dilation, another good thing, because a dilated colon can't effectively empty until it overfills, which leads to constipation and complicates emptying.  What we have been doing (cone enemas) is decently effective and so there was not much poop in the left side of the colon, which is supposed to be emptied by our nightly enema.  (The poop on the right side is the poop on deck for the following day's bowel movements.  The things you learn!)

Once this was over we headed to clinic to meet with the doctors and nurses, who, I am happy to say, were helpful in focusing on our specific child's needs and plan.  They were also open to prescribing the Peristeen system for Mason in a month or two after we've found a good fluid mix for him using the foley balloon enema.  (Peristeen is a relatively new balloon enema system in the US that can be difficult to get.  They warned us that it will probably take multiple letters to insurance to get it approved but that it can be a wonderful option for children like Mason who have Spina Bifida (which affects nerves and muscles) and will be doing enemas for life.)

The starting plan for Mason is as follows:

• Continue taking 1/2 capful of Miralax per day.  They won't mess with this while we're working on other variables, knowing that up to now his body has required the Miralax to avoid constipation. 
• Switch from cone enema to foley balloon enema setup.  I promise to do a picture or two of this in a separate post.  For now, just know that it uses a catheter with a balloon near the end that can be inflated inside your child's bottom to hold the catheter in place while putting the enema fluid in and holding it there for a few minutes so it can travel up the colon.  We used it last night and had no trouble getting it in, inflated, or keeping it in for the time we needed to.
• Begin with a solution of 400mL saline and 20mL glycerin to agitate the colon and get it to expel the fluid and poop.  (This mix may be adjusted over the week of camp).
• Do the enema at the same time each evening.  Take notes in a variety of categories.
• Take Mason each morning for an x-ray of his colon.  Email our notes to the colorectal group.  Wait for them to check the x-ray and read the notes, then email us back with any answers to our questions, new adjustments to make to our process, etc.

During our meeting with the doctors Mason had had enough.  It had been hours of appointments and tests.  He wheeled over beside me and leaned over onto my leg and fell asleep.  Poor guy was worn out!  After our meeting with the doctor we went to the pharmacy for the fluids we needed and made the long drive home.  Our last stop before home was Dairy Queen - Mason had been great through the day's business and had earned himself a treat - vanilla milkshake. 

When we got home Mason played for a little while before it was enema time.  We tried out the new setup, which went smoothly enough.  The one thing I noticed is that if they are wanting the enema fluid to do the work of getting poop out (without Mason's assistance by coughing/using abdominals) we are probably not quite where we need to be.  We spent our hour on the toilet and moved on with our evening.  We're tracking accidents (because he is supposed to be cleared of poop if the enema was doing it's job) and we'll head for an x-ray this morning. 

Here is to a hopefully poop-free day!

Bowel Management Bootcamp Day 1

This may bore most readers but I'm going to share the process of this week long bootcamp for those who come across this blog and have a child with Spina Bifida. 

Today was what will be the simplest day because it did not involve bringing Mason.  I attended a lecture that is a general overview of how the bowel works, basic enema and medication based solutions for bowel problems, surgical interventions that are possible depending on circumstance, etc.  They also demonstrate the foley balloon enema (how it's put together, how you fill and prepare it to use with your child, etc).  That was interesting because we've not used that setup, we use a cone enema.  I'm hopeful that this will be a good option for Mason.

They talked about the variety of things that they look at and coordinate when planning a bowel program for an individual (including looking at the colon's size, function, nerves, and more).  They talked about products to mix for a solution, about fiber supplements and laxatives, and more. 

The group was generic to a degree because in the room were a variety of people there for different underlying issues.  That meant it was not as helpful to me personally, in that most of the situations they described won't apply to Mason.  He has no sensation and won't be able to eventually learn to empty his bowels on a timed routine (without an enema).  As far as we know today, he has no anatomical abnormalities that could be surgically corrected (the contrast enema tomorrow will detail that for us, but we have no reason to suspect abnormalities). We have already been doing enemas and laxatives for 2 years so we're in familiar territory. 

They opened up the room for questions and I was able to ask specifics.  You could see the confusion on some faces as the nurse demonstrated and described using the foley enema.  The nurse wasn't specific enough in some ways.  I was able to ask specific questions that clarified the process because I already knew what to ask, having enema experience.  For example, in the sample pictures (with a doll) in our binder they show a child laying on their belly and knees during the fluid going in process.  That's pretty awkward.  So I asked about alternatives like laying on their side or our current setup with sitting on the toilet during the entire process.  It turns out both options are valid, and from experience with Mason I know they are more comfortable for him as well as easier for him to play or do an activity while waiting through the process. 

One poor woman asked, shell shocked, if they would need to do an enema every single night once they head home after this week. She was under the impression that after this week their child's issue would be solved. Yes, yes you will.  Yes, it will change your family's routine.  Yes, it's overwhelming at first.  But you'll find a new normal. 

Don't get me wrong, I appreciate the nurses and doctors we'll be working with.  I know they have some experience that will hopefully help us improve what we are already doing (especially the alternative liquid mixes to put in that may stimulate Mason's colon to do some of the work to get poop out).  However, the nurse demonstrating the foley enema setup was young (early 20s is my guess) and when asked by a mom if this balloon enema is something a child can eventually learn to do on their own she was adamant that it wasn't possible.  The woman asking has an 11 year old.  If you know me in real life you know I'm not shy so I spoke up.  I told the mom that the nurse was wrong, that people CAN and do learn to use a balloon enema setup in some form to do their own enemas, because I'm part of many FB groups related to spina bifida and read their stories and chat with them.  Can a young child learn to do it?  Probably not.  But an older child, teen, or adult?  Yep.  Like anything, it would take practice and finding a setup that works for them (probably one that includes doing everything on the toilet like our setup instead of transferring from the floor). 

Sometimes I get so frustrated at how people limit others without even letting them try something new.  No, they will never learn to do something independently if you never let them try.  Sigh.  Hopefully that nurse will learn as she continues with her career that many things that seem difficult are in fact possible. 

Anyway, that was the gist of the evening.  Tomorrow Mason has a contrast enema (dye goes in, x-rays are taken to map out his colon, etc) and we meet with the doctor for a plan specific to Mason.  It should be interesting!

A Quiet Blog Means...

Life has been moving along on a pretty even keel.  Mason really has not had any major medical changes.  He had his 2 month checkup last week to see how the new glasses are working out with the bifocals (just great, he learned to use them with no problem).  Urology has some checkups scheduled near the end of this month because he is leaking more often between cathing.  We want to check bladder pressure, look for reflux, and see if it is time to increase his dose of Ditropan. 

The big news is that this week Mason begins Bowel Management Clinic!  Basically, while Mason has a bowel management program that works (cone enema nightly paired with daily dose of Miralax), we are wanting to see if there are any ways to tweak this to be more effective for his body.  Right now our enema gets poop out IF:

1. His poop is soft - thanks to Miralax.
2. He coughs or does other abdominal tightening pushing to actually get the fluid and poop to flush out.  If he doesn't cough the fluid will leak out in bits but not with enough movement to bring the poop along with it. 

So we're hoping to use a different solution in the enema (something more irritating to his colon to hopefully provoke it to actually do some rhythmic contracting to move things out).  We're also hoping to try a different setup than the cone because the cone has to be held in place by mom/dad and we want to work toward something more independent for Mason to use.  There are a few possibilities so I don't know what we will end up with. 

I'll update more as we get through clinic!

Enema Updates - A New Setup

Life quickly becomes routine even when there are special needs involved.  For nearly 2 years we have done a cone enema every single night with Mason.  He simply doesn't poop (neurogenic bowels that are pretty bad) so in combination with paying attention to how much fluid he drinks, what foods he is eating, and taking Miralax daily, we also have to do an enema. 

If you really want to understand how huge this update is then please take a moment to remember what our enema routine has been. 

We use a cone enema because Mason’s anus is really weak and doesn’t hold fluid in well.  So what you’re looking at is a bag to hold fluid, a tube, and a white cone on the end of the tube.  We use water and mineral oil currently for the fluid.
There is a lock that slides open and shut to control the flow of the solution.  The cone keeps things from coming out.  Why is that important?  Well, we want the fluid to have time to go up through the whole colon.  The cone mostly keeps Mason’s bottom from leaking.    
The process takes time and will take longer the older he gets.  For nearly two years we've laid Mason on his side on a towel right outside our tiny bathroom.  We hang the bag inside the bathroom on a hook.  Then we put just part of the cone tip into his bottom and hold it there.  Open the lock and let the fluid in, then close the lock and wait, holding that cone in place.  Our wait time is about 10-15 minutes.  During this time we need to keep Mason happy laying on his side, and we have to keep holding the cone in place.  It’s a good thing he’s so easygoing!  This has become a special tv time for Mason.  He can choose a cartoon to watch on the Kindle Fire while he's laying here. 
When our timer beeps we remove the cone and move quickly to the toilet.  That means standing up, picking Mason up, and setting him on the toilet. It is sometimes a very messy moment...ahem.  We need to keep Mason on the toilet until he poops.  (Isn't that a cute photo?  It's from a year ago!)  When he is older he will learn to use his abdominal muscles to try to bear down.  For now the most effective ways to get him to engage that abdomen are:

• Laughing like crazy.
• Coughing
• Crying

Mason is finally at a point where he'll cough at us when we ask - which we do on and off while sitting on the potty.  The other thing he does on the potty is play games with us or continue watching a show, taking breaks to cough.  This part of the process takes between 20 and 40 minutes, making our enema routine about an hour long every single night.

Another challenge is that Mason doesn't have the balance to sit on here safely on his own.  Daddy or I sit on a low stool right in front of him and hold on to him.  It's pretty awkward because of the small bathroom (there is a sink right behind you) and it gets more awkward when you add in the fact that I'm pregnant and growing rapidly.

NOW you can understand why today's change is going to be wonderful on several fronts.  Here is our new setup:

 

We bought this Drive Medical Folding Bedside Commode on Amazon and it arrived today.  We put it together and left off the bucket that would normally act as the toilet bowel.  Then we adjusted the seat so it sits a few inches above our actual toilet seat.  Why?  Because that way I can slip my hand in between the actual toilet and Mason's bum up on the new seat (with our soft potty insert on the gray seat).  I hold the cone in while Mason is already sitting on the toilet!  It is a little messy when I take the cone out, but not as messy as it was lifting him off the floor and carrying him over to the toilet like we had been doing.  No more transferring from the floor to the toilet! 

Other wonderful things about our new setup:

• The arms!  This folding toilet setup has armrests that Mason can use when he's feeling unsteady.  If he tips to the side he catches himself on the armrests.  It's a beautiful thing.
• I can sit on a taller stool, making it a more comfortable process for me or another adult to do. 

 

 

An enema is one more thing that *needs* done in our life. We have to be home for at least an hour every single evening to do the enema.  We also have the every four hours cathing schedule (8am, 12 noon, 4pm, 8pm, 12 midnight).  Then we have physical therapy and stretches to do several times a day.  Oh, and his medication needs done twice a day (8am and 8pm).  Add in cooking and mealtimes, playing, homeschooling siblings, cleaning the house, and life in general and you can see why we live by a routine.  We have to!!!  However it IS routine for us.  This is just normal everyday life now and feels that way.

Oh, and if you made it this far did you notice Mason's new black glasses?  I'll post about those soon.

One Week Post-Hip and Heel Surgery

One week ago Mason had his double surgery.  Today, if he didn't have to wear his cast/ace bandage merman getup, you wouldn't know he'd just had major surgery.  He's feeling great, is tired of laying around instead of sitting, but is being extremely patient for a 2 year old.  One week down, FIVE to go. 

We have developed a bit of a routine to keep him laying but busy.  Meals are eaten picnic style.  We have a daily art time.  Playdoh is out at least twice during the day.  We do daily quiet time/nap time.  We move upstairs to the bedroom to play with Legos at some point each day. There is daily piano playing for Mason.  And we have cartoons on a LOT. 

At the moment he still has the dressing over the hip surgical site.  It's coming loose a bit at a time and if it's not fallen off before next Wednesday the 20th it will be removed on that day at his checkup. 

Enemas have gone better than expected.  After trying a few things we have settled on something very similar to what we were already doing.  Basically, we now tape trash bags over his casts after we take the ace bandage off, to keep them dry.  He lays on the floor on his left side with some towels bracing him and the orange cast.  We use the cone enema to put the fluid in, then we sit him up (he's on a diaper and towel) and quickly lift him onto the toilet.  We do have a child potty seat insert on the toilet.  I sit in front of him on a footstool and hold him because the heavy casts wreak havoc with his balance.  We sing silly songs, watch silly videos, and do anything that makes him laugh.  Laughter + Enema solution = Poop.

He is still taking an increased dose of Miralax daily to keep his stool very very soft, just this side of diarrhea.  We are generally avoiding the main constipating foods (cheese/rice/bananas/etc).  We're also encouraging Mason to drink lots of fluids.  He won't drink juice but we've found he will usually eat juice if we freeze it into a popsicle, so that is a regular snack each day too. 

Oh, and we're doing a lot of dancing right now.  He's loving it!

Just keeping it real folks…

We had a scary Monday with Mason but are 90% sure it’s nothing.  He was lethargic (falling asleep every hour all day), wanted held nonstop, and developed a high fever (almost 103.)  It’s one thing I hate on this journey. Running through my mind are worst case but oh-so-possible scenarios.

1. Fever could be a major infection.  With a wide open incision this is a very real and very scary possibility.
2. The lethargic and miserable child could be shunt failure #7. 
3. Both at the same time was a distinct possibility.  It still is. 

We watched him closely because it could also be that he was finally coming down with the nasty bug that has been working its way through our family.  It seems that is the case.  We think. He’s not eating well still today (Wednesday) but the fever was gone in 24 hours and the lethargy was too.  It could still be shunt issues as Mason rarely presents with classic failure symptoms but it is seeming less likely.  He is already scheduled for an MRI to check in on the shunt in about 1 1/2 weeks. 

  Mason on Thanksgiving with the cousins and siblings.

In the mean time life moves forward.  We are still packing his incision and doing daily bandage changes.  He’s very patient with the process, which takes over an hour between his nightly enema and the actual bandage change. 

The enemas have become essential on a daily basis again because spending so much time in the wheelchair has affected his bowel function.  We were doing enemas every other day for a while.  What was already barely moving along with help now is constipated again.  We’re increasing miralax, spending longer time with the enema process to allow the fluid to work it’s magic, and trying to increase his water intake and watch his diet to avoid constipating foods. 

We got a call today from the orthopedic surgeon’s office asking to reschedule Mason’s appointment for a month later.  “Sure thing,” I said, “though we probably won’t see you then with everything going on.  And by the way can you let Dr. K know Mason isn’t wearing any of his bracing and hasn’t for months because his hips and feet are contracting and he needs a spinal cord detethering, which he won’t get for months yet because his other surgery failed and we’re waiting for an open incision to close?” 

The silence on the other end of the phone lasted for a few seconds and then, “Oh I’m so sorry.  Is he going to be okay?”

“I don’t know.  I really just don’t know,” and then I had to get off the phone because it’s true, I don’t know if Mason will be okay, and I start to cry. 

I don’t know if the nerve damage he’s gaining while we wait to do the detethering will be permanent.  I don’t know if this incision will be closed soon or if it will take months.  I don’t know if his shunt, which has already failed SIX times, is failing again already.  I don’t know what this means for tomorrow or next week, much less a month or a year from now, and my precious son is not even 2 years old yet. 

These moments sneak up on me, moments when I crumple under the weight of the never-ending, bone-weary, uncertain road ahead of us.  The endless circle of medicines, catheterizations, enemas, bandage changes, surgeries, and tests.  The doctors who can only say, “I don’t know…”.  This process is agonizingly slow, two steps forward and three steps back. 

If you came here to hear some upbeat post about how easy parenting a special needs child is, come back another day, or read through the past posts.  Because many days are easy.  The routine carries us through our version of normal and we don’t notice the weight because we are so wrapped up in the joy of this child who loves wholeheartedly, laughs with abandon, and does amazing things every moment of every day.  He is a living, breathing miracle.  I don’t take that for granted.  But not every day is easy.  Some days are hard and usually they come unexpectedly.  Today was one of the hard days.

Myelo Clinic–Things Not on My Radar

Time to update again!  Mason had his team appointment in Myelo Clinic yesterday so we’re full of information, not all of it good.  Read on! 

First we’ll talk about the good.

Mason is doing great from a occupational therapy standpoint.  He uses his fingers and hands appropriately to manipulate things, stacks blocks, does puzzles, passes things hand to hand, etc.  With the obvious long-standing limitation that he does these things best when he’s strapped into his wheelchair or something that supports his sitting so he can use both hands and remain balanced. 

Urology took a look at Mason’s bladder and kidneys yesterday by ultrasound and they look beautiful.  The ditropan (medication to paralyze the bladder) and cathing Mason every 4 hours (8am, 12pm, 4pm, 8pm, 12midnight) is protecting those organs well.  No changes here.

Weight gain has finally been accomplished!  Mason had not gained any weight in over 6 months, sitting right at 24 lbs.  He’s now 24 lbs 11 oz.  Slow, but it’s something. 

Eating skills are progressing again.  After all Mason’s oral aversion issues around the brain surgery fiasco last fall and winter was (5 surgeries in 4 months) he is about where he should be with eating.  He uses a fork well, is figuring out a spoon, and finally closes his mouth to take bites about 75% of the time.  This shows itself in big ways like Mason actually taking bites of a bagel or other food instead of everything needing cut into bite size bits.

On to the not quite great but also not bad news:

Poop is still a work in progress.  We’ve been doing daily cone enemas for a month or so to clean Mason out and keep poop off his butt wound.  They work most of the time in combination with his Miralax.  We’ve reduced the Miralax drastically over the month to find a balance between soft enough for the enema to work and firm enough that he’s not pooping in between enemas and getting his wound dirty (infection risk).  It’s just a balancing game that varies daily based on what Mason has eaten and drank that day.

Wound Update!!!  He is healing S.L.O.W.L.Y.  He had some dead skin building up around the edges of the wound in calluses so he had debriding yesterday.  It sounds nicer than it is.  Basically they laid him on his belly and went to work with tweezers and a scalpel to cut off tissue.  Mason didn’t feel a thing, of course.  As a matter of fact his reaction was to fall asleep for his nap.  Yes, I’m serious.  They didn’t get all the calluses off but we’ll see how they’re doing in a few weeks.  Here’s a picture for those who have asked.  We’re to keep changing his bandage with every diaper change and continue limiting his sitting time in things like the booster seat at the table, his wheelchair, etc. 

The Bad

Now we come to the part of the visit I don’t want to think about.  The scary part.  You see, going in I had a page of questions and concerns.  It’s the only way to keep track of everything when seeing so many specialists in one day.  On my list was a reminder to let the orthopedic surgeon know Mason’s right foot/ankle and hip have had drastic changes in the last two months.  They have always been ‘tight’.  The hip is hard to straighten, the foot/ankle is hard to bend into a ‘flat’ position like when you are standing.  Which is why I do stretches and physical therapy several times a day with Mason. 

In the last two months it hasn’t mattered how diligent I was, we were seeing things regress.  We can no longer straighten his leg at the hip completely and cannot get his foot/ankle into a flat or neutral position.  That triggers a few problems, including not being able to fit/wear his HKAFO braces for standing, not being able to wear the foot brace at night without bruising, not able to wear any structured shoe, etc. 

We saw the physical therapist first.  She quickly told me I was right, there was a significant difference, and went to grab a few people.  Neurosurgery and orthopedic surgery.  WHAT?!  Neuro?  I knew that was not a good sign. 

The neurosurgery nurse asked me just two questions to start:

1. Has Mason had a significant growth spurt in the last few months?  Yes, he’s gained nearly 2 inches.
2. What changes have we seen in his body?  The ankle and hip contractures.

Then she said words that hadn’t even been on my radar.  “We’ll need to check for a tethered cord.”  My heart dropped into the floor.  I knew in theory that one day Mason might face that.  You see, when your spinal closure is done at birth the cord and nerves may begin to attach or tether to the scar.  A spinal cord is not stretchy.  Often when a child has a growth spurt their body stretches and the cord does not.  That causes neurological symptoms, and very often damages the spinal cord or nerves further. 

If Mason’s cord has tethered they will do a surgery where they try to separate the cord and nerves from the scar.  In the process there are very real risks that they will cause MORE damage to Mason’s nervous system.  In other words, he could come out of surgery with even more paralysis and problems.  For example, that hip function he has, the ability to pull up at the hip, could disappear.  The weak abdominal and back muscles we already fight to help him sit and balance could be made weaker or completely paralyzed.  I just don’t want to think about it. 

I’ve gotten comfortable with Mason’s disability.  Things like a wheelchair make me happy, they give him independence.  I’ve accepted what limitations he has and thrill to watch him push and make the most of what he can do.  A tethered cord could make us go through the process all over again with new levels of disability.  Loss of function.  Three little words that could change everything.  Again. 

What Comes Next

There is still a possibility that Mason’s cord is not tethered.  We may just be facing some leg surgeries to cut tendons, casts, and a lengthening process.  If I had to choose I would take that in a heartbeat.  Even if his cord is tethered we may end up needing those surgeries too, to stretch out and lengthen things that have pulled tight.

We expect to hear from the neurosurgeon Monday with a plan for a sedated MRI of Mason’s spine.  Under general anesthesia they’ll take a series of pictures and compare them to his baseline MRI done earlier.  They will look for changes and go from there. 

Another scary thing to think about is that a tethered cord can happen again.  And again.  And again.  And each time there is a risk of doing more damage. 

In My Head

How does this feel as a mother?  Terrifying.  Helpless.  Angry.  Peaceful.  Talk about a contradiction!  While I want to cry and shake my fist and pound on the doors of Heaven asking ‘why?’, when I look back at Mason’s life so far I have peace.  I always remember the very first priesthood blessing I had when we learned Mason would be born with Spina Bifida.  Here are my thoughts from the very first post on this blog:

“…the blessing only confirmed in my heart that this is not going to be an easy journey.  There was no promise of healing, that the troubles would all go away.  Instead I was promised physical health and strength to bear this burden, that it will be used to draw my family closer together, and that God was with me and with my son.  I was told this is no accident, God planned this path for our family, and gave this body to my son to accomplish God’s purposes.  I know that His plan is the best one, though it is often not the path we would have asked to walk.”

I know none of this is a surprise to God.  He’s with Mason and He is with us on this winding, uphill climb.  The best part is that He never leaves us to climb alone.  We have the God of Heaven and the Savior of the World on our side.  He is strong when we are weak.  His atonement strengthens us to take one more step.   He gives us peace no matter the circumstances and he loves us through our tears, our anger, and our fear.  His mercies are new every morning.

Our Current Enema Routine

Life is always busy at our house so I’ve been a bit lax in posting about things.  I think it has something to do with having my eighth baby last month…LOL.  I wanted to do a post sharing more about Mason’s enema routine because it’s something I was curious about before we were doing it. 

Let me start by explaining why we are doing enemas.  Mason has what is called a neurogenic bowel.  The nerves to his bowels are damaged (part of his Spina bifida).  This means different things for each person.  For Mason it means that his bowels do not eliminate poop on their own because his colon doesn’t have the rhythmic muscle movement needed to push things down and out.  We are not sure yet if his colon has ANY muscle movement.  If we keep his stool very soft he will poop some when crying or crawling around because he’s using his abdominal muscles and that naturally pushes somewhat on the colon/pelvic area.  He has spent more time constipated than not.  We use Miralax to try to keep poop soft but often we swing from constipation to diarrhea, not a good cycle. 

Mason has an open wound we’re trying to get healed on his backside (skin tore when he was scooting and it is really hard to heal).  In an effort to keep poop out of that open wound and avoid infection we started daily enemas.  It was something we were needing to begin soon anyway, this just moved the timetable up a bit. 

We went with a cone enema because Mason’s anus is really weak and doesn’t hold fluid in well.  So what you’re looking at is a bag to hold fluid, a tube, and a white cone on the end of the tube.  We use water and mineral oil currently for the fluid.

There is a lock that slides open and shut to control the flow of the solution.  The cone keeps things from coming out.  Why is that important?  Well, we want the fluid to have time to go up through the whole colon.  The cone mostly keeps Mason’s bottom from leaking.    

The process takes time and will take longer the older he gets.  Right now we lay Mason on his side on a towel right outside our tiny bathroom.  We hang the bag inside the bathroom on a hook.  Then we put just part of the cone tip into his bottom and hold it there.  Open the lock and let the fluid in, then close the lock and wait.  Our current wait time is 5 minutes.  During this time we need to keep Mason happy laying on his side, and we have to keep holding the cone in place.  It’s a good thing he’s so easygoing!

When our timer beeps we remove the cone and move quickly to the toilet.  I usually have a diaper on him for this transfer to save my floors from the fluid rush.  Remove the diaper and entertaining part two commences.  We need to keep Mason on the toilet until he poops. 

Right now that is still being tweaked.  It takes 5-10 minutes at least.  What we are still tweaking is the amount of fluid to use.  We need enough that it brings the poop out with it.  Mason’s body isn’t helping at all.  He simply doesn’t seem to have any muscle reflexes working for us.  When he is older he will learn to use his abdominal muscles to try to bear down.  But how do you get a 1 year old to do that?  For now the most effective ways to get him to engage that abdomen are:

• Laughing like crazy.
• Coughing
• Crying

We try to get Mason laughing but it doesn’t always work. 

The biggest adjustment to this has simply been making a consistent time each day to do the enema that works with everything else going on.  It’s one more thing that *needs* done.  I think some days our life is run by when things need to be done for Mason.  We already have the every four hours cathing schedule (8am, 12 noon, 4pm, 8pm, 12 midnight).  Then we have physical therapy and stretches to do several times a day.  Now we have enemas.  Oh, and his medication needs done twice a day (8am and 8pm). And bandage changes at every diaper change.  Add in cooking and mealtimes, playing, homeschooling siblings, cleaning the house, feeding/diapering/seeing to the needs of baby Samuel, and life in general and you can see why we live by a routine.  We have to!!!  <smile> 

 

What is something you’ve had to adjust in your family’s routine?  Was it easy to make time for something new or did you struggle with it?