Happy Shuntiversary Mason!

In the Spina Bifida and Hydrocephalus world you celebrate some unusual holidays. Today is Mason's Shuntiversary!  One year ago today the shunt in Mason's brain was fixed for the sixth time.  Pictures from the next morning are here.  He was not even two years old and had gone through more shunt revisions than anyone close to his age that we knew.  Every shunt revision is a brain surgery. 

 

The shunt is simply tubing and a valve.  It's job is to siphon off the extra fluid from the ventricles pf the brain when the pressure gets to high, draining it down into Mason's abdomen where the fluid can be reabsorbed.  You see, Mason's brain isn't positioned normally in his skull.  It actually grew pulled toward the back, with the bottom of it down in his neck vertebrae.  His goes down to C3.  It gets in the way of the fluid that should be draining down the spinal cord.  This is called Chiari II Malformation.  Mason's Chiari is currently asymptomatic, not causing any symptoms, which is a huge blessing.  When children have problems with their Chiari they face things like breathing and swallowing issues, among other things.  (I know you're wondering if Mason could develop symptoms - yes.  It is possible.  We pray he never does, but as he grows there is a chance he could become symptomatic and need surgery to remove part of his skull and neck vertebrae.)

 

Back to the shunt - we're grateful for it. Without it Mason would die as the pressure built up in his skull and damaged his brain.  Today, for the first time, Mason has had a working shunt for an entire year!  Will this be the first October of his life to NOT have brain surgery?  I'm praying it is!

Surgery #11 Report and Pictures

*Just a warning, there is a post-surgery picture in this post.  It’s not for the faint of heart.  The short version is Mason had surgery to close his open incision and now we wait and hope it heals properly this time.*

What a long week it has been already!  Monday morning Mason went in for surgery #11, a repeat of the last surgery to debride the sacral pressure sore and reclose it.  He was his cheerful, happy self before surgery. 

As more and more doctors came in to check him he started getting unsettled.  It was obvious that he remembered his last surgery, not even a month ago.  We decided that because Mason is a frequent flyer here in the surgery unit, and will have more surgeries in the future, to give him some medication to relax.  We want him to have as pleasant a time as possible with all this. 

Here is my giggly 1 year old who felt just fine once the medicine kicked in.  He was really funny.  A few minutes later we headed to the operating room where I held him until he was asleep. 

Surgery went well, taking a bit less than an hour and a half.  Dr. P ended up doing a full closure (hooray!) with four separate layers of stitching plus glue on top.  It’s not pretty, but it is strong and we hope this time things will heal and not reopen.

We stayed the night at the hospital which was not fun, but we needed to be back the next afternoon anyway for other things, so it worked out well.  Our post-op instructions were to keep Mason on his belly as much as possible so in the hospital he laid in bed, laid on mommy in a recliner, and even ate his meals in bed. 

Now that we are home he is to continue spending the majority of his time on his tummy with up to 30 minutes sitting in his wheelchair or booster seat with a gel pillow type thing.  That lasts for the next two weeks until we go back for his checkup.  It means taking Mason pretty much anywhere is out of the picture, including church, because he isn’t supposed to sit for long.

Our plastic surgeon is also realistic.  He said, “Look, he’s not even two.  I know he doesn’t understand and some days he’ll sit more than he should.  Just keep trying each day.”  So that is the goal, to just keep swimming, as Dory says in Finding Nemo.

Tuesday we got released from the surgery unit and went to the other side of the hospital for a brain MRI.  This was to check on Mason’s ventricles, the fluid filled spaces in the brain.  A month ago they had been uneven following his 6th shunt revision.  When his eye started crossing last weekend we really felt like we might be heading for another shunt revision this week. 

In the end we got to go home because his brain looks wonderful and the ventricles have evened out.  No surgery yet!  The neurosurgeon wants us to go ahead and have a checkup with Mason’s developmental ophthalmologist to rule out vision problems or get them addressed.  Then in a few months when Mason has healed from the sacral surgery he just had, we will do another sedated MRI of the spine and move forward with Mason’s spinal cord detethering, which could also be one cause of the crossing eye.

I came home to a house full of sick children coughing everywhere.  The oldest 3 are on the tail end of it and now all my little ones have started.  Needless to say I didn’t get a lot of sleep last night, though Mason slept pretty well.  I had one child coughing and throwing up (he throws up pretty easily), and the baby was up a lot coughing, plus the usual middle of the night cathing and now antibiotics for Mason.  We’ve officially started our Christmas break from homeschool and the plan is to snuggle down and watch movies all day.  On our tummies of course! 

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.

Neuro Checkup–Done!

We had an easy appointment today at Children’s.  Mason saw his neurosurgon for a checkup post-surgery.  His head is healing beautifully (I could have told them that!).  The plan is to have another Brain MRI done next month to see how the new shunt has settled.  We’ll do that when we go to Myelo clinic.  We also want to see if there have been any changes to Mason’s hip and foot then, hopefully changes for the better.  We will go from there with planning what to do next to help his foot and hip.  Most options include surgery of some sort, though I would prefer leg surgery over spinal cord surgery of course. 

For now we are continuing to stretch and do physical therapy, watching for signs of shunt failure, and praying that things change in a positive way!  Tomorrow Mason’s physical therapist comes for a visit. 

Mason is still battling this cold and having breathing treatments around the clock.  He’s so relaxed through them now, which is wonderful.

Home with More Wait and See

Here is Mason this morning, happy to be home.  We came home from the hospital yesterday afternoon.  The MRI showed a working shunt – for now.  Mason has a checkup in two weeks with the neurosurgeon.

We also got a referral from Wound Care while we were at the hospital to see if Mason’s plastic surgeon Dr. P thinks he can close the wound on Mason’s bottom.  It has filled in from the bottom up really well but isn’t closing.  I really have no idea if Dr. P will be able to close it.  It would be great if he could, because while we would still have some healing to do and it would probably mean another surgery, it would be a step towards complete healing.  We have been dealing with this wound since July.  Multiple bandage changes each day has become routine and Mason is very patient.  It would be wonderful to get past this though!

Mason is cheerful this morning and slept very well in his own bed.  He was really miserable yesterday evening at home, crying and oh so tired.  I expect to see that again today sometime because his body has taken a huge hit with the shunt revision.  We’ll aim for a really good nap this afternoon and see what happens.

So far he seems to have about the same function as before the surgery.  His balance is a bit off what he had before surgery when sitting, but will probably get back to normal soon.  His foot and hip are both still contracted and can’t flex into neutral positions.  I don’t know if that will be something we can adjust with a lot of physical therapy or not.  He may need foot and hip surgery first.  Of course he also may end up needing the small tethering of his spinal cord fixed.  Like so many things on this Spina Bifida journey it is another ‘Wait and see”.  

Life’s never dull around here, that’s for sure! 

Morning Hospital Pictures

It’s morning here at the hospital and Mason is doing just fine.  We’ve had breakfast and he’s coloring.  He slept pretty well and we’re waiting around for the MRI that will tell us (hopefully) that we are free to go home today.

Here is a picture of the incision.  It’s looking pretty good.

 

We’ll update more later!

Post Surgery!

Right now this is what Mason is doing.  Sweet boy is all done with his 6th shunt revision.  He and I have been watching Cars and snuggling and he finally gave up and fell asleep. 

Here he is before surgery this morning.  Bear came along to help Mason today.  The IV team started his IV and only blew one vein in the process.  Mason cried but laid willingly while they worked, snuggling Bear and Mommy. 

When Dr. G came in he had to mark the surgery site.  He drew Mason a pirate ship, which I took this picture of so Mason could see it.  Too fun!

According to Dr. G the shunt was clogged and only a trickle of fluid could get through the catheter in his brain.  They changed that out and now we wait to see if that fixes everything or not.  We’re hoping to head home tomorrow.

Shunt Revision #6 Tomorrow

I find it ironic that October is National Spina Bifida Awareness Month and it is the second October in a row where Mason’s had shunt surgery.  Welcome to real life with Spina Bifida!  It’s official, Mason has his 6th shunt revision surgery tomorrow morning around 10am.  The neurosurgeon is optimistic that this will also help fix the leg issues Mason is having.  If it does not the we will probably pursue a detethering.  While we were told Mason’s cord is not tethered that isn’t exactly accurate.  It is tethered a little bit.  It just isn’t a big tangled mess. 

My sister asked a very good question:  Why won’t we move forward with a detethering surgery if Mason’s leg gets better?  We know it is tethered some, don’t we need to fix that?  Yes and no.  Eventually we will have to do a detethering surgery but it is risky and can cause further damage to Mason’s spinal cord and nerves.  If we detethered tomorrow it could reattach worse and need redone in a year and again and again.  If it is not causing problems we will leave it alone as long as possible to minimize the number of times we have to do that surgery.

How is Mason right now?  He’s pretty good!  Happy and comfortable, he is playing with a puzzle and needs a bath. 

How is Mommy?  A wee bit stressed.  I know this is what we need to do right now but it doesn’t make it any easier.  This time the possible complications from a shunt revision weigh heavily on my mind.  Brain damage, bleeding out, stroke, death. 

Don’t get me wrong, I’m grateful for shunts and neurosurgeons.  Without them Mason would have died shortly after birth.  I know that Heavenly Father isn’t surprised that Mason is having surgery again.  He’s got this all worked out, planned out even.  Nights like tonight remind me how glad I am that God doesn’t show me everything that will happen from now until I die.  I don’t think I want to know just how many more surgeries are ahead of Mason.

What about you?  Would you want to know what’s ahead in life or not? 

As always, prayers for Mason, the doctors, nurses, and family are appreciated.  Prayer is powerful!

MRI Results are In

Well, we’re home and I want to give an update to all those who are following Mason’s story.  This is a picture of him this morning, waiting around for the MRI of his brain and spine.  He was coloring in his zoo coloring book.  Let me give the short version and the long version of the story.

The Short Version:  Mason will have brain surgery next week because his shunt is failing and he has a lot of fluid building up in his brain.  The good news is that of all the possibilities that was not the worst.  His spinal cord is NOT tethered.  Hooray!  That means we avoid the risky spine surgery for now.

The LONG Version:  This morning Mason and I went to Children’s for a sedated MRI.  He needed to be under general anesthesia because the imaging takes upwards of 2 hours and he has to be still.  We spent a few hours waiting and playing together. 

Mason brought his bear today.  I am so glad he finally picked a lovey because we were able to talk through everything that would happen to Mason and bear.  They both had blood pressure checked.  Mason would take a nap, bear would take a nap.  Mason would breathe in a mask, bear tried it first. 

I accompanied Mason to the MRI and held him and chatted while the anesthesia was given by mask.  While he had a big pouty lip under the mask he didn’t cry, just snuggled bear and I and then his eyes rolled back and he was asleep.  My mommy heart was so grateful for that peaceful beginning.

I then went to the surgery waiting room.  The plan was simple, I would be told when Mason was finished and what recovery room to go to by the receptionist.  I sat, ate the breakfast I had packed, and read a book.  About the time I began watching for the receptionist our neurosurgery nurse practitioner appeared and my heart sunk.  I wasn’t supposed to see anyone from neurosurgery until next week.  I knew then we had surgery coming.  She took me to a private room to look at images and explain them.

Mason’s spine looks the same as it did in February.  No change is a good thing.  She didn’t even need to tell me something was wrong with his brain, it was obvious in looking at the pictures.  Large areas of fluid have built up in the ventricles.  The shunt is not working, or is only partially working.  Time for brain surgery number SEVEN. 

Mason is asymptomatic, which means he is not exhibiting the classic signs of shunt failure (headache, vomiting, irritability, excessive sleepiness, high blood pressure, etc).  The leg and foot tightening we’ve observed are probably from the shunt failure because pressure in the brain affects the nervous system.  Because Mason is comfortable and asymptomatic we are scheduling surgery (instead of doing it right then, which they were considering if he had other symptoms).  We have a face to face consultation with our neurosurgeon Tuesday afternoon and the expectation is Mason will have surgery Wednesday.  If he begins to be symptomatic before then we will go into surgery a.s.a.p.

Where I’m At Mentally

Relieved and sad at the same time.  I am so relieved that his spinal cord is not tethered.  That is a huge blessing!  I am sad that Mason has to go through yet another shunt revision.  This one lasted the longest yet, almost 11 months.  I know from experience that one revision may trigger a whole series of them as brain matter is stirred up.  (Last fall/winter Mason had 5 shunt revisions in 4 months).  

In the mean time we’ll prepare for surgery in several ways.  Mason gets a haircut this weekend so it’s less obvious when they shave part of his head in surgery.  I’m planning meals for next week so that the children here at home are taken care of while I stay at the hospital for a few days with Mason.  Babysitting is being arranged with time off work for Daddy one day and Grandma another day.  Homeschool is going on break for a week because we’re flexible like that.  Homeschooling year-round (without a traditional 3 months off each summer) means we can take time off when we need to!

I’m peaceful.  This is not a surprise to God.  He has a plan in place and we just get to learn about it as it plays out. 

Small Updates and Cute Pictures

Things have been pretty quiet for Mason since our last update.  I heard today that his HKAFO custom parts are ready and the fitting will take about 3 hours.  Yikes!  That is an appointment I don’t want to bring any of the other kids along to so I’m only able to schedule for a Monday when Daddy will be home to watch the rest – and one when Mason does not already have appointments.  Next available – February 18th!  A whole month from now.  In the mean time we’ve reached a milestone – it has been 2 months since his last brain surgery!  This shunt seems to be working well and we’re praying it stays that way. 

Other highlights:

 

 

 

 

 

 

 

 

 

We are seeing Mason use two hands to play while sitting for brief moments (about 5-8 seconds).  Progress is progress!  His abdominal and back muscles are getting stronger and his balance improves.

 

 

 

 

 

 

 

 

He still tries to pull up on the couch by brute strength.  More and more we find him in this kneeling position.   He sits there with his hands for balance for a while.  He has started trying to clap.  Yes, just now.  Remember it’s hard to clap with two hands when you can’t sit without using those hands to hold yourself up.

We are still struggling in the solid foods department and by solids all I really mean are pureed foods.  Mason eats 2-3 times a day but it is very hit or miss if he’ll love it or hate it.  We’re playing around with flavors, temperatures, and textures but there is no real predictable pattern to what he likes.  He still is getting his main nutrition from his special formula. 

I think those are the main updates for now!

Poop Matters and other General Updates

Asleep on the floor during his bout with the flu.

Have you been wondering how Mason is doing?  I’ve been holding my breath to be honest.  Tuesday was the 1 month mark from his last shunt surgery.  Mason got the flu this week after his older siblings hit their flu recovery stage. He has handled it pretty well and is feeling better. He only had one day of vomiting and is back to drinking semi-well so he is staying hydrated.

We had a shunt scare with a bulgy fontanel for a few days last weekend.  We also had 5 of the other kids down with the flu at the time and Mason was constipated.  We have discovered that even minor constipation is a really bad thing for Mason, it affects his shunt.  Isn’t that funny? 

Basically, the tube that drains all the fluid from his brain into his abdomen can’t drain well if the pressure in his abdomen increases from constipation.  When the fluid can’t drain his fontanel gets bulgy, pressure in his brain increases, and things go downhill from there.  Some kids shunts are not so badly affected with a tiny bit of constipation.  I suspect they have more fluid flowing around the brain on it’s own.  Mason is not so lucky.  Even mild constipation is causing problems.

So our new goal is to be super aware of Mason’s poop and use Miralax proactively to keep his bowels soft and moving.  It’s a crazy balancing act trying to figure out a good dose as it changes every day based on how much he has eaten and what kinds of things he is eating.

Speaking of eating, Mason is still mostly just drinking a bottle.  He is just now, a month out from surgery, willing to eat from a spoon for about 10 little bites of food.  This whole oral aversion thing stinks!  We have also been doing a lot of finger food offering.  He will put things in his mouth and chew on them on his own terms but is still not swallowing them as often as we would like.  Maybe 1 piece in 8 actually gets eaten. 

In other areas Mason is doing well.  He has tried really hard the last two days to pull up on things and he’s getting to his knees by brute strength alone.  Mostly he is supporting the weight of his body with his hands and arms, his knees slide out to the sides like a frog. 

He is very much a mommy’s boy right now.  If he has the option of picking anyone to hold him it is going to be mommy.  Mason is really funny about it.  He can be in the middle of things in the kitchen in Daddy’s arms while Mommy is cooking, but if Mommy walks too close he reaches his arms out and dives toward Mommy.  I love the snuggles from my little man and I know all too soon he’ll move on so I’m trying to soak them up.

I think those are all the updates for now.  Have a Merry Christmas!

Myelo Clinic and New Things

Ahh, the joys and trials of Myelo Clinic days!  Things never go quite as I expect and I always come away with a deluge of information.  I love seeing so many doctors in one day but Mason is less than thrilled.  To keep things interesting I made a rookie new mom mistake that I haven’t made since Makayla was a baby.  I grabbed the small diaper bag off the hook instead of the big one we used last week when Mason had surgery and showed up for clinic with exactly ZERO diapers.  For the child who needs changed at least every 30 minutes.  Mmmhmmm.  At least we were at Children’s Hospital where diapers are always in stock and on hand so they just gave us a stack for the day.

Our day began early, leaving the house at 6am to make it there in time for Mason’s rapid MRI of his brain.  Makayla came along today for two reasons – one, she wanted to go in the MRI with Mason so he wouldn’t be alone (I’m pregnant so I can not go in), two, she wanted to learn more about what Myelo Clinic is like, meet the doctors, ask questions.  It turned out she was not allowed to go with Mason during his MRI because she is under age 18 – dumb, but true.  So we listened to the poor guy cry while they strapped him down and did all his pictures.  We also got a renal ultrasound of Mason’s kidneys and bladder done today about halfway through our visit.  The urologist looked at the scans and said everything looks fine so we don’t need to increase our cathing schedule or add in bladder medications.  When asked by Makayla about what the medications do this sweet doctor launched into a 15 minute mini-lesson complete with diagrams drawn on the paper of the bed.  Mason’s circumcision had also reattached to the penis (penile adhesions) so the urologist pulled on that and unattached it again.  Thankfully he didn’t feel it at all – a small perk to nerve damage.

Neurosurgery looked at Mason’s MRI and everything looks wonderful.  His newest shunt is working as it should for now.  Of course, it’s only 10 days old.  Things could change any time.  The doctor is scheduling a full brain and spinal MRI for sometime in the next month or so to get an official baseline on Mason’s body.  He will have to be put to sleep with anesthesia for that process, which will take up to 2 hours. 

The biggest news to us today was from Physical Therapy and Physical Medicine.  They focus on mobility and after seeing what Mason can do and learning what he is trying to do at home (climb stairs and pull up to stand at the couch) they decided it is time to get some braces for Mason.  Without the bracing there is no way Mason will ever stand, he simply does not have the nerve and muscle function to even maintain kneeling beside the couch.  His functional level is T12, that means that the nerves and muscles below the 12th Thoracic vertebra are not working. 

So today that handed us a prescription for HKAFO’s.  That stands for Hip Knee Ankle Foot Orthotics.  I’ve not been able to find too many nice pictures of these online to share so I’ll point you to a post of another young man with Spina Bifida, Caleb, whose progress we love to watch in his mom’s posts.  She has a picture at the top of this post of really short AFO and then tall HKAFO’s with full leg braces and a band that goes around the pelvis/waist.  These taller braces are what Mason is getting.  He goes in 2 weeks to be measured and casted then the orthotist will get to work making them.

The idea for Mason is that these will enable him to stand and play at a new height, one he is trying to reach but physically cannot.  His will have locks at all joints to keep from bending because he can’t actually use them that way.  The Physical Medicine doctor does not believe Mason will be content to use these long-term because they will limit him from actually moving places and chasing his siblings, but they will be good for his bones and body (weight bearing = strengthening) as well as giving him some developmental perks.

Those are the big things from today’s visit and so I’m going to get off this computer and go help my children, who just came in from outside and are in desperate need of hot chocolate they’re telling me.    

Home After Surgery

Chalk up another surgery to Mason’s total.  Sunday evening we decided to take him in to check out the shunt.  You know it’s bad when the nurses on the neurology floor recognize your child and can call them by name when you arrive.  Sigh. 

Monday he was in surgery – the same tube in his brain was clogged.  Here he was checking himself out in a mirror before getting his hair cut for surgery.

Sleeping after surgery.

The incision is covered with this dressing for a week.  He had a rapid MRI this morning and all looks like it is working for now.

We are home and Mason is his usual cheerful self.  Mason goes to Myelo Clinic next week to see his entire retinue of specialists and we will get another MRI done to see how the shunt is working.  We’re praying this one lasts longer than a month – longer than a year would be wonderful. 

Either way we are grateful for skilled professionals who can take care of our sweet Mason’s medical needs and for loving family at home who hold down the fort and care for Mason’s older siblings while we’re at the hospital. 

I try to remind myself one thing each time this happens – none of this was a surprise to God.  While we may not know what is coming and how it will all turn out, He knows and is right there with Mason every step of the way.

We’re on Shunt Watch Again

One of the hardest things right now with Mason is never knowing when something is really wrong with his shunt.  It’s such a weird process.  Sometimes you just know, which has been our experience the last few times.  This week we’re just not sure if his shunt is failing or if he’s just having an off week. 

For the last several days Mason’s fontanel (soft spot) on top of his head has been a little bit bulgy.  That means there is more fluid in his brain than usual and the shunt may be starting to clog.  It usually flattens and empties after a few hours.  Yesterday it was really hard and full in the morning, flattened out, and then was a bit bulgy on and off all day.  He’s been cranky.  Today he woke up with a really hard and full fontanel again and when he drank his bottle he threw up the entire thing all over mommy.  He’s also seemed pretty sleepy today, just wants held, and is ‘off’.

Many of the symptoms of shunt failure in an infant are just what we’re seeing:

• Crankiness (due to increased pressure in the head, aka headaches)
• Increased sleepiness
• Bulging fontanel
• Throwing up/inability to keep food down

Unfortunately most of those symptoms could also be attributed to a cold, virus, or even teething!  For now we are hanging out watching Mason and trying to decide how long to let things go on until we put a call in to the Neurosurgeon on call.  As it is Sunday we’re trying to just wait and see if he gets better through the day like he has the last few days.  Then we’ll call the Neuro office tomorrow morning and let them know the weirdness going on.  Mason is supposed to be heading in for scans and checkups at the very end of this month.  They may have us just keep watching him until then or they may decide to bring him in early for checking. 

Sigh.  I can’t wait until Mason can talk well enough to tell us just how he’s feeling.  For now we’re just going to have to continue our shunt watch and pray that things keep working the way they’re supposed to. 

Mason’s Head Healing and SB Tip of the Day!

Here is Mason’s head a week after two shunt surgeries.  It is healing pretty well so far.  Now we just wait for it to finish and for the hair to grow back again.  All in all he’s feeling pretty great and being his own cute 9 month old self. 

Spina Bifida Tip of the Day:

Get used to hearing the words “We’ll have to wait and see.”  From the moment you learn your child will be born with SB this will be every doctor’s mantra.  They really can’t predict just what will be affected and to what degree. 

Once your child is born it just continues.  Now you have to wait and see what your child can do and WHEN they’ll do it.  The typical developmental timeline now means nothing.  Your child is not typical, they are a unique blessing who will develop on their own schedule.  You’ll just have to wait and see what that schedule will be!

Day Six: Hydrocephalus and Shunts

Welcome to 31 Days of Spina Bifida Awareness Day 6!
Hydrocephalus, which in simple terms is excess cerebrospinal fluid accumulating in the brain, can occur in children who do not have Spina Bifida.  It often comes with Spina Bifida Myelomeningocele.  Mason developed hydrocephalus during the last few months of pregnancy.  In a normal person the CSF flows from the brain to the spinal column.  When Mason’s spinal cord grew out of place it pulled on his brain as it formed.  Instead of growing centered in the skull his brain grew tugged back and even down into the cervical vertebrae, clogging up the pathway the CSF would normally flow through and causing this to back up in the brain (hydrocephalus). 
The brain and skull do not absorb excess fluid so this begins to put pressure on the brain.  Pressure on the brain left untreated causes brain damage and possible death.  Surgeons often relieve this by placing a shunt.  The shunt drains excess CSF into an area of the body that absorbs excess fluid and disposes of it.A basic shunt has 3 parts: Tubing into the brain, a valve, and tubing into the abdomen.  These tubes are tiny in diameter and very flexible.  They can get clogged by cells and need replaced or the valve can malfunction.  Fixing or replacing a shunt is called a revision and neurosurgeons consider it to be a fairly routine brain surgery.  Yeah, I think the words routine and brain surgery should never go in the same sentence either.

A Piece of Our Story

Mason had his original shunt placed when he was one week old.  He came away with a crescent-shaped scar on his head, a lump under the skin of his head where the valve is, and a small scar on his abdomen where the doctor checked the placement of the abdominal tube’s end.  In the beginning you could literally see and feel the tube under the skin going down his neck and on his chest and abdomen.  He will always have a lump under the skin on his head where the valve is, but as his hair grows it becomes much less noticeable. 
Shunt Failure:  One day 6.5 months later Mason did nothing but fuss, eat, throw up, and sleep.  He wasn’t himself and I started to wonder – was it his shunt  or was he just sick?  It’s not a fun question to ponder.  In the middle of the night his fontanel (soft spot) on his skull started to bulge and I knew it was the shunt.  I knew we were looking at another brain surgery.  After scans and tests the doctors were not convinced but relying on mother’s instincts into surgery they went.  You can read the rest of the story HERE.  It turned out the tube going from the valve into his brain was clogged.  It was replaced and Mason is doing just fine today. 

I am grateful every day for the medical knowledge God has given in this day and age.  They certainly don’t know everything, but they can help with many things.  Even 60 years ago Mason would likely have died – either from infection getting in through his back or from untreated hydrocephalus.

Myelo Clinic Day–Updates

Today was a day full of doctors and therapists for Mason - Myelomeningocele Clinic!  I have to say I’m glad these appointment days only come every so often because it is always information overload and takes me a while to process.  Part of that processing is writing it up here on Mason’s blog, so here goes!

I woke Mason up just before 7:00am to change his clothes, catheterize, and feed him a bottle before we needed to hit the road.  Grandma arrived to stay at home with Mason’s 6 older siblings and he was a bit jealous.    By 7:30am we were in the van and driving to Children’s Hospital an hour away.  Halfway there Mason was done with the carseat and made his opinions known – loudly.  We hit some morning traffic but made it to our exit at last.

Mason’s first stop at Children’s today was the Ultrasound department.  He had a brain ultrasound to check the fluid level in his ventricles and make sure the shunt is working well since the revision at the beginning of the month.  Then he had an ultrasound on his bladder and kidneys to see how those are doing.He was rather interested in the kidney ultrasound as you can see.

Next we walked back across the hospital to Myelo Clinic, signed in, and sat down to wait.  We chatted with a few other myelo patients including a teen boy Rodney who has a similar lesion level as Mason.  It was so nice to be able to ask him and his mom questions about what life had been like growing up so far.  We found out that even though Rodney is in a wheelchair with no leg function one of his favorite ways to exercise is swimming.  His mom said it took a while to build up enough upper body strength to swim without being able to kick, but totally doable.

The nurse finally came to take us into clinic.  First stop is a scale to be weighed – Mason is just a smidge over 21 lbs.  Then we were taken to our room, where we would stay for the rest of the morning.  The mayhem began as doctors, therapists, and nurses stop in at random.  I’ll try to explain the main visitors we had today:

Physical Medicine
This woman will be working with us on mobility as Mason grows.  She’s the one who will evaluate and make recommendations for equipment like leg braces and a wheelchair, with input from all the other medical staff on Mason’s team.  After evaluating what Mason can do she asked what we were told Mason’s lesion level was, where his bones were open.  Mason’s begins at L2 (lumbar vertebra 2) and goes down into his sacrum.  While the opening gives you some idea of what nerves will be impacted, a child’s functional level can vary.  She said that it looks like Mason functions on a higher (worse) lesion level, either L1 or T12.  The expectations with that functional level are lack of sensation (sense of touch) from the hips down (butt, low belly, and legs). 

She then went on to explain more of the mobility aspects that affects.  It is likely that Mason could learn to walk some with extensive bracing (braces from toes to waist).  It’s not going to be something he would be able to do beyond childhood most likely because the energy expenditure will be a lot the older and bigger he is.  It has some drawbacks.  He would not be independent with the bracing because it would limit him to standing only, and someone would have to help him get in the bracing.  Once in it he would not be able to sit down, bend and pick things up off the floor, or sit to play.  So it has some major limits.  He wouldn’t be able to walk quickly and play while moving, he would have to use a walker of sorts to help.  He could stand at a table or counter to play though.

She said some children are really driven and want to stand up.  Others would rather use a wheelchair and get around as fast as or faster than their peers.  With a wheelchair he will also be able to get in and out on his own, down the play on the floor when HE wants to.  He’ll become much more independent, even as a toddler.  As a doctor her preference was to follow the child’s lead.  If they want to try walking we go that way, if they don’t, we don’t.  So it should be interesting.  She also said with a lot of pressure from the doctors in Myelo Clinic we might be able to get a wheelchair ordered for Mason when he’s between 18mos and 2 years old, but the wait time once it’s ordered will be 6 months or so.  She was impressed with the idea of Mason’s bumbo wheelchair and thinks it will be a great help to him when he’s ready.

Urology
This doctor said the scans of Mason’s bladder and kidneys look great.  Everything is as healthy as it’s been, so the cathing we do 3 times a day is helping protect his kidneys.  We’ll make no changes to this for now.

Orthotics
I suspected it was time to lengthen the bar on Mason’s foot brace so I brought it along.  He only wears it at night now.  I was right, they lengthened the bar and he should be set for a while.  The next thing to watch for is outgrowing the shoes themselves.

Neurology
We came today with specific worries.  Mason’s head is still healing from his shunt revision earlier this month.  The incision was doing really well with just one stitch trying to work its way up through the skin that was closed over it and out.  We had that with his abdomen when he was teeny and it came out just fine.  Unfortunately we woke up Wednesday morning to red swelling around this stitch and a bit of pus trapped under the skin.  The pus came out later that day but it is still red, swollen, and tender and that stitch is still sticking partway out of his head. 

After looking it over we’ve been given a 2 week course of antibiotics to fend off infection while trying to give his body time to get the stitch out.  If things get worse the doctor can go in and cut it out but then he’ll have to be sewn shut again and could repeat the problem.  We’ll see.  For now we’re praying his body handles things and the infection gets better with the antibiotic.  We’ll also be washing his infection site with a hydrogen peroxide/water solution for a few days.

They looked at today’s brain scan and everything looks lovely.  A lot less fluid in ventricles compared to the scans when he came in at the beginning of the month with shunt failure.  Yay!

Physical Therapy
Ahh, now we get to the things that make my head hurt.  Mason is doing amazingly well.  He’s rolling over (which amazes them) and using those arms to push up on the floor.  Unfortunately his core is still not strong enough.  When we practice sitting he props himself on both hands and is very swaybacked – like this:He occasionally will prop sit with just one hand and reach for toys with the other but generally it is all he can do to stay mostly upright.  He collapses forward often. 

This leads to a number of issues developmentally.  He is 7.5 months old.  There are a lot of hand and finger activities he should be practicing now that he can’t even attempt, like transferring toys from hand to hand or raking the floor to grab small objects.  If he’s using his hands to hold himself up then they can’t do anything else with them. 

Currently Mason has a physical therapist come to our house once every 3 weeks through Help Me Grow.  Their focus is to train the parent to do exercises and we do those diligently.  However we’re moving into needing some special equipment and more frequent therapy that adjusts with him weekly and Help Me Grow won’t really provide what Mason needs.  The doctors would like to have Mason go see a pediatric physical therapist at least bi-weekly, if not weekly.  They would focus on working his core.  They would still teach me things to do but would have more ideas, options, and could adjust frequently as Mason improves or as things don’t help.  We’ll find out next week if there are any pediatric physical therapists in my town.  So far it looks like there is not.  We will probably need to travel into the big city an hour away every week for therapy. 

Occupational Therapy
This leads right into Mason’s OT visit.  Their focus is on arms, hands, core, and head.  Lo and behold Mason is not where he should be in these areas because his core is too weak to support him while he works on upper body skills.  Yes, it’s a vicious cycle, when one thing is off it affects several developmental areas.  We really need to strengthen Mason’s core so he can move on.  They want to see him do OT biweekly or weekly.  As far as we know there are no pediatric occupational therapists in my town.  They’re checking and will get back to us next week.  Most likely we’ll head an hour away to the big city for this too, possibly piggy backed with the physical therapy appointments.  The therapists PT/OT both gave me exercises to work on with Mason at home, some easy, others more difficult.  One series of exercises he really needs requires a roll or peanut ball to sit and balance on.  It’s a big core workout and will really make him work.  Thankfully Amazon carries a peanut physiotherapy ball in Mason’s size.  When we came home today Grandma heard about it and ordered it right away.  It is the yellow one in the picture above.  Thank you Grandma!

Developmental Pediatrician
She went over all the plans for Mason.  She also talked with me about his nutrition and exercise.  Because Mason will not burn as many calories in everyday play with half his body not working we have to be very intentional about encouraging active play.  We also have to pay attention to his nutrition, avoiding a lot of empty calories as he begins solids(choosing a whole fruit over fruit juice for example).  We finally arrived home six hours after we left.  I think both of us were glad to be home! 

A Week After Shunt Revision–Healing and Smiling

It has been a week since Mason had surgery, his shunt failed and needed part of it replaced.  I’m thrilled to say he is healing well and things look like they’re working just right again.  Happiness is generally the order of the day when Mason is around.  Here is a close up of his scar’s healing progress.  They cut over the existing scar from his original shunt surgery.  And of course shaved his head.  The poor kid was just getting some hair back when surgery came around.  He is spending more time playing happily on his belly these days.  He likes just about any toy he can find but gets frustrated when they get knocked out of reach. On Saturday Mason will be 7 months old!  Time really does go by quickly.

Day Two Post-Op, Cheerful Again

It is amazing just how quickly babies bounce back after some surgeries!  Mason is his cheerful self.  He thought it was funny that Daddy was doing tummy time too.  You can see he’s practicing his pushups on his own now. He got curious when I was snapping pictures and flipped into this awkward position to check things out: All in all our first full day home has been good.  He has played, smiled, eaten, and napped.

Mason is Home and Healing!

We’re home!  Mason came through surgery well and 24 hours later we were sent home.  Yes, brain surgery on Thursday evening and home on Friday evening.  It amazes me, as does the fact that his surgery is considered fairly routine.  I am grateful for the prayers, they are felt and I know they help!  For those who like details let me back up.

Wednesday I started to wonder if Mason was getting sick.  He had no fever or major, he was just ‘off’ and not keeping his bottles down well and sleeping a lot.  By evening his fontanel (soft spot) on the top of his head was getting firmer than usual.  I went to bed planning to check it in the morning and if he was worse we would head to the hospital.  Vomiting, sleepiness, and a bulging fontanel are symptoms we were told to watch for in case of shunt failure.  The shunt is what drains the extra cerebrospinal fluid from Mason’s brain down to his abdomen to be absorbed.

At 1:25AM I woke up with a list of things on my mind that I needed to pack for the hospital.  Mason woke up two minutes later and sure enough, his fontanel was obviously bulging.  I woke my husband, called the neurosurgeon on call at the hospital to see what they wanted us to do, and tried to feed Mason, who spit it up again.  The neuro resident said to bring him in to the ER to check things out.  We packed a few things for him and for me, already expecting we would be staying overnight.  In the emergency room Mason was examined by the neuro resident.  He looked relatively fine but we were sent to have a few scans.  The brain ultrasound was first to measure the fluid in his ventricles.  This one uses a gel that gives Mason awesome hairdos like the one above.

Next was an x-ray series of head, chest, and abdomen to make sure the shunt had not moved out of place or come apart.  Mason’s shunt has 3 parts: a valve that lets fluid through when it’s pressure limit is reached, a tube from the valve up into his brain, and a tube on the other end of the valve that goes down his neck and chest into his abdomen as the drain.  Mason’s was still in place and together.According to ultrasound Mason’s ventricles were looking a bit bigger than usual but not enough that they thought his shunt was failing.  However, because of his outward symptoms he was admitted.  He got a cage for a bed, and IV, and a cool new room.  He was also no longer allowed to eat, in case surgery was in his near future.  Grandma came to the house to watch the other kids and Daddy came to join Mommy and Mason at the hospital.  Mason was evaluated by the neurosurgeon and we were given the option to watch him for 24 hours or to go ahead with the surgery that evening to see if there was a blockage in the shunt.  We chose surgery, we knew that despite normal scans this was not normal for our son.  Mason spent the rest of the day cranky and in our arms, wanting fed and wanting to feel better.  That evening we headed down to pre-op.  It’s not a comforting place to be.  You have to sign papers about the risks of anesthesia and brain surgery.  Lovely things like not waking up, inability to breath on his own, bleeding out, and death.  Still, a shunt revision is considered routine.  It happens frequently and most of the medical staff were surprised Mason’s first shunt had lasted 6.5 months.  (They tend to have more problems the younger you are, from mechanical failure to clogging the tubing, which has to be tiny the younger you are.) Then we walked right to the operating room doors carrying Mason.  We took one last picture before we had to hand our son to a nurse and walk away.  It is hard to do.  Hard to wait in another room to hear how your child is doing.

Dr. G came to us as soon as surgery was finished.  We were right, the shunt was completely clogged in the upper tube that goes into the brain.  He was able to replace it easily and Mason did great during surgery.  We would see him back in his room after he finished his post-op recovery with anesthesia.He was asleep again when they brought him to us.  Sweet, brave boy.  His incision was closed with stitches under the skin and then the top layer was glued shut.  After a while he woke up and stayed awake for a bit.  We were able to feed him when he was ready and he kept it down like a champ.  After a few more snuggles Daddy headed home to be with the other six kids.  Mason and I had a long night with lots of interruptions until I put my foot down and told them to stay out of his room for a few hours to let him sleep.  They had him hooked up to monitors and could check on him through the computer.  We got a few hours sleep before 6AM this morning. 

Around 6:30AM the neurosurgery team came in for a checkup.  The resident who admitted us from the ER was in the group with a younger student.  It was really interesting to hear him explain the case and how Mason presented with no evidence of shunt problems by their tests, but that Mom was sure there was something wrong with the shunt.  He then told the student to ALWAYS listen to a mom if she says that something is wrong with their child, moms are almost always right.  He explained the results of surgery confirmed a completely clogged shunt and reiterated that mom is always right.  That is one reason I love this hospital, they take the parent’s observation and feelings about the child’s situation seriously!Mason was obviously feeling better today.  He was playing with toys, smiling again, and eating with gusto.  He fell in love with his new ducky the hospital gave him and loves to wrestle it.  The thing is super soft and does this awful song and wing flapping that he loves.  Sigh.  I think I could almost do the song myself by now, I’ve heard it so much today.

I’m grateful for God’s mercy that allows prayer to lift and bless, for skilled doctors and staff who help bodies that don’t work normally to compensate with things like a shunt, and for another day with Mason.  I don’t know why Mason’s life has so many challenges that seem so big.  I had lots of time to read and pray and ponder while in the hospital.  Once again I realized that Mason’s body was created by God for a purpose.  Mason influenced each person who came near him in the hospital, they felt his spirit and came away uplifted by his smiles.   

Thank you for joining us in prayer for Mason’s health and recovery.  I know prayer is powerful.