Urology Updates

Yesterday Mason had a urodynamics test done at the request of his neurosurgeon.  Urodynamics is a bladder test that checks the amount of fluid the bladder holds before it begins to leak due to pressure.  This is one area that often shows changes when a tethered spinal cord begins causing problems.  The good news is that there have been no changes to Mason's bladder capacity or ability to handle pressure.  They will forward the results to Mason's neurosurgeon, who will then decide what the next step is in the process of deciding if it is time to do another spinal cord surgery. 

We did come home with some changes, however, from urology.  Mason has been growing and because his bladder medication to paralyze the bladder is based on weight it is time to increase his dose.  However they want to switch him from a liquid to an extended release pill because the pill generally has few side effects while increasing the liquid will increase the side effects Mason deals will.  So now we get to try to teach a 4 year old to swallow pills (he can't chew the pill without messing up the extended release).   ***** Edited to update: Mason took his pill in a spoonful of applesauce this morning.  We showed him we wanted him to just swallow the applesauce, he put the pill in the applesauce, and he swallowed, no problems, no chewing.  Yay! At least that was easy.****

Once Mason has been on the new dose of medicine for a week we are also going to measure his urine output for his morning cathing.  They want to see us getting out less than 200mL because more than that sitting in the bladder could increase the pressure enough to reflux urine backward into his kidneys (based on the results of his urodynamics test today, showing he doesn't leak even at 250mL but the pressure increases above 40 at that point, likely to mean reflux is happening at that stage instead of leaking urine).  If he's holding more than 200mL in the mornings we will have to do one of two things:

1. Add another cathing to his overnight schedule.  Right now we cath Mason once in the middle of the night.  We may have to set an alarm to get up a second time.
2. Put a catheter in and leave it in overnight to drain his bladder.  This option is actually my least favorite for a few reasons.  First he would then be laying in a wet diaper all night, which really isn't good for his sensitive skin or for his growing up age (who wants to be in a wet diaper at age 4 or older?).  Second, it would increase the likelihood of Mason getting urinary tract infections (which we've avoided so far).  UTIs are pretty common in people who have to cath and leaving a catheter in overnight leaves a route for bacteria to travel right into the bladder all night long.  UTIs mean antibiotics.  Frequent antibiotics mean a messed up digestive system and building a resistance to antibiotics that you may actually need later on for more important things like serious illness or surgery recovery.  Yep, I'm a bit opinionated on this one.  Obviously we'll be going the getting up extra in the middle of the night to cath route if that is needed. 

So there are this week's updates!  Next week Mason has his PT evaluation to get a plan in place for working on core strength and ultimately on OT skills like putting on and taking off a shirt, drinking from a cup without falling backwards, etc.  He also has his casting appointment with the orthotist who will be casting his trunk and making a custom back brace to sleep in. Hopefully we will also hear from the neurosurgeon next week with his plan for the next step related to Mason's tethered spinal cord.

Urology Updates

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

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

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

Bathroom Issues Part 1: We're talking pee!

 

It is still October and that means it is still Spina Bifida Awareness month! This week I'm sharing a bit about bathroom issues. Today we're talking pee!  Because Spina Bifida is a snowflake disability, where each person is affected uniquely, let me start by sharing how SB affects Mason's bladder.  He has what is called a neurogenic bladder.  In essence, his nerves do not send accurate signals to or from these areas. 

For the bladder this means frequent spasms that thicken the bladder wall making a small bladder capacity and risking urine refluxing backward into his kidneys.  This reflux can permanently damage the kidneys. (If your kidneys are too damaged you either need a transplant or you die.) Mason's body does not feel when he needs to pee and he has no control of the peeing process (either peeing on purpose or holding it to get to a bathroom).  This will not change as he grows up.

Right now Mason is on a bladder medication called Ditropan to stop the spasms.  It has some side effects, including dry mouth, lack of sweating, and easily overheating.  The medication paralyzes his bladder to stop the spasms, which keeps the wall from thickening. 

We need to catheterize him regularly to empty his bladder now.  Based on measuring the volume of urine he holds, pressure in the bladder at different volumes, etc, we currently cath Mason every four hours: 8am, 12pm, 4pm, 8pm, 12 midnight.  Mason gets a break from midnight to 8am (yes, we get up at midnight every single night to cath him.)  He usually stays pretty dry between cathing.  If he laughs a lot or cries a lot around the time he is due to be cathed he will leak.  He wears diapers and will continue for the foreseeable future. 

Mason has already begun to take an interest in taking over his own cathing.  Right now that means he likes to help hold the catheter once it is in place and he helps remove the catheter when the bladder is empty.  Around age 5 or 6 he should be able to cath from start to finish independently.

A Bit of Back Story:

I remember the first week home from the NICU with Mason.  Cathing was so hard that I cried nearly every time.  I had this squirmy baby who wanted to be anywhere but laying on his healing back surgery and head incision from his first shunt, I was recovering from my own major surgery and dealing with postpartum hormone changes, and cathing an uncircumcised little boy posed its own challenges. Doctors were not willing to consider circumcision until Mason was several months old, had been evaluated by the urologist, and was healed from the major surgeries he had already been through.  I remember crying and thinking I would never figure this out.  Now I can laugh at it.  A little practice and cathing became our new normal.  Not only can Daddy and I cath him, we've taught two other people as backup (Grandma and big sister Makayla). 

That's all for today!  If you have any questions related to Spina Bifida feel free to leave a comment and I might just feature it in a post this month!

Urodynamics Test Today

Mason and Mommy headed to Children's Hospital this morning for his urodynamics test in the Urology Department.  He had this test in April of last year and due to high bladder pressures was put on Ditropan.  You can read more about that visit here.  Today was easy.  We checked in and Mason explored the waiting room for a few minutes before we were taken back for the test.

 

In the test room Mason loved this ocean mural.  He had fun pointing out the different animals and even took my camera to take a few pictures of his own. 

The test told us a few things.  First, the Ditropan is working well at the current dose.  His bladder pressures stayed super low during the test.  Second, it gave us an idea of how much his bladder can hold without leaking. 

We will use that information in the coming week or two as we begin measuring how much urine output we get cathing Mason in the middle of the night and first thing in the morning.  We're checking to see if we can forgo that midnight cathing.  I have no idea if that will be a possibility.  While the extra sleep would be nice (not having to wake up in the middle of the night every night to cath Mason) the important thing to us is protecting Mason's bladder and kidneys.  So we'll do what we need to do. 

It was a great appointment, Mason was cheerful and talkative through it all.  He loved the elevator rides and is an old pro at the hour drive to the hospital and the hour drive home.  We listened to music and to podcasts.  The cutest thing was every time a truck passed us he would call out, "Come back truck! Come back to me." 

Myelo Clinic and Mason Care Updates

Friday Mason headed back to Myelo Clinic for a wound checkup.  I was not sure what to expect for two reasons:

1. It seems about the same to me, not worse, not better.  I knew it was not going to be a noticeable change because this is something that will take a long time to heal completely but I had no idea if it was doing better. 
2. Thursday morning I changed what we were doing for Mason’s wound dressing based on Mommy intuition without checking with the doctors.  The plastic over duoderm over actual bandage/dressing was hot, sticking, and when you changed the many layers there was a rash under the duoderm.  So I got rid of everything but the actual gauze bandage with minimal tape.  Would they tell me I was making things worse?

It turns out things look fine, I was right to stop the plastic and duoderm layers, and we’re to continue with just the gauze and tape.  We are to change the gauze/tape at every diaper change, spray with KeraCleanse and fill the wound with the Kerasanz gel.  They will see us in 3 weeks and we’ll go from there.  It is likely to be a few months before this heals completely but we’re on the right track.  The rash – it’s yeast from the extra layers so we’re using Nystatin cream twice a day to clear that up.

While in Myelo clinic we worked on a few other things so let me explain those too.

First, we got a prescription written for Mason to get a new set of HKAFOs made.  His are too small now.  If you remember last time he had to get casts done for each leg/foot as well as his back/butt/abdomen.  Then they custom make the pieces which takes several weeks.  Monday I’ll be calling the prostetist/orthotist to get the measurement and casting appointment scheduled.

Next we chatted with the ‘poop lady’.  We’ve adjusted Mason’s miralax dose so that his poop is no longer super soft/unformed because we want to keep poop off the bandage.  Unfortunately, just like I told them, he can’t poop on his own if it’s solid at all.  They sent us home with a cone enema kit and we’re beginning nightly enemas for Mason. 

What’s a cone enema?  Basically you put a liquid solution (ours is water and mineral oil) in a bag attached to a tube that goes in Mason’s bottom.  Because Mason has no muscle tone to hold the fluid in and allow it to work there is a rubber cone at the end of the tube.  It is inserted a bit into the bottom and when we close the tube’s lock it acts as a stopper to keep the fluid in.  Remove the cone and the fluid all comes back out, hopefully with the poop. Again, the no muscle tone means we have to sit there and hold the cone in place for him for the five minutes, it won’t stay on it’s own.

We’re still trying to figure out how to do that on a potty with a child who can’t balance well enough to sit there, especially when we need to have access to his bottom to hold the cone in place.  So far it takes Daddy and Mommy both.  I’ll spare you the messy details for now, I just hope we get a routine going and this becomes easier SOON. 

In case you’re wondering: Mason thinks it is all really fun because he’s on the potty in the bathroom, a novelty for him.  And he gets mommy and daddy’s undivided attention so it’s even better. 

We also had an evaluation with the occupational therapists at Myelo clinic.  It had been over 6 months since our last eval.  Mason has made huge strides since then, such as actually eating solid food by mouth.  He is also not where they expect a child to be in using both hands simultaneously because, of course, he still struggles with balance and core/trunk strength.  They are pleased with the progress he has made and said to keep doing what we’re doing. 

All in all it was a good visit.  We got to meet a little guy about Mason’s age and they played together (wheelchair bumper cars – too cute!).  We got things accomplished and I came home feeling like the visit was helpful even though it added more ‘special needs’ medical care to our daily routine with the enemas. 

In the Valley, Surrounded by Mountains

Raising children is a challenging experience.  It is one that has low points, hard climbs, and breathtaking views before the path heads back down into a valley on the trail.  Do you ever find yourself in a valley?  Are you surrounded on all sides by mountains to climb?  Have rocky boulders littered the steep path out of the valley so that you cannot imagine making in through one more day, much less a week, month, or lifetime?  Life with Mason has brought me into valleys I never expected to visit.  At the bottom of the valley I look up and see mountains. I want to describe two of those mountains today.

The Mountain of Fear

Fear that the limitations of his body are more complicated and far reaching than we expected.  This is a mountain we have been climbing since his diagnosis before birth.  Just when we think we’ve made it to the top we find there is another peak to climb.  While we were told to expect a child who might walk part-time it soon became apparent that Mason’s nerve damage was more severe than expected.  He will never walk.  We made it over that peak but know the realities of it will strike at odd moments over the years.

Along the path up this mountain we have found boulders in our way.  His paralysis affects bowel movements severely.  We struggle daily to find a balance between too much intervention causing diarrhea and not enough causing total constipation.  Without intervention Mason simply doesn’t poop.  We use Miralax and occasional enemas for now but there are potential surgeries and full time enema routines in the future.

His abdominal and back muscles are compromised by nerve damage.  His balance at 15 months old is still not there.  He still cannot sit without a hand on the floor to balance, with brief moments of balance without using his hands.  When Mason is serious about playing he lays down like the picture above so he can use both hands.  He cannot sit in a chair and use both hands unless it has a seatbelt to keep him balanced.  Will he ever be able to sit in a regular chair or even just on the floor and use both his hands to play? I don’t know, maybe, maybe not.

The Mountain of Exhaustion

There seems to be no end to the extra needs.  Nothing is simple, nothing comes easily.  For me it is an eternal round of keeping track and doing.  Keeping track of medication doses, figuring out how much of certain medicines he needs based on what he is eating each day, not forgetting timed doses of other medicine.  Every four hours stopping what we’re doing to cath him, a process that takes longer now that his bladder is paralyzed by Ditropan so we’re doing virtually all the work.  Even at midnight it must be done so sleep is interrupted. 

Physical therapies that need done as often as possible but need to be fun because he’s just a 1 year old and won’t do the work without enjoying it.  Stretching muscles and tendons that are tight to hopefully maintain what flexibility he has, while watching carefully to not dislocate other things where he is over-flexible. 

Continual skin checks to see if he’s bruised, scraped, bleeding, or cut because he can’t feel half his body.  He bit his toe a few days ago until it bled because he can’t feel it.  Just doing the normal baby thing of playing with his feet, but he got off the sock and before we knew it he was hurt.  Playing outside in shorts because it is hot means crawling and dragging half his body over rocks, sticks, sidewalk, and more.  Scrapes, bruises, and cuts result.Other boulders up this particular mountain include the landslide of medical appointments that crop up, necessitating scheduling, driving, and coordinating care between specialists who make one simple change and it affects what half the others take care of. 

There are the sleepless nights induced by factors such as itchy eczema, pain, discomfort, or who knows what. 

There is the constant lifting, carrying, and helping Mason get where he wants to go.  He is the typical 15 month old who wants up on the couch, or up the stairs, at the table, up to the piano, or on the counter when I’m cooking but he can’t get on any of those himself.  And once he’s there he needs you with him so he doesn’t fall off(remember that balance issue?).  He can’t just slide off the couch or slip down from his seat at the table when he’s done either, though he will probably figure that out in a few years.  Yes, years.

Mountain Top Experiences 

I try to be open about these valleys because they are real.  They are temporary though, just a part of the path.  This path also holds breathtaking views, mile high blessings gained from the climb.  We have mountain top experiences of joy that fortify us for the next valley.  Our whole family is stronger simply because the path has not been flat and easy.  Along the climb we have discovered blessings, beautiful, unexpected blessings growing out of the rocks.  Truly, God works together all things for the good of His children.  His tender mercies and strength carry us out of the valley, over the boulders, and to the mountain top when we cannot climb any further.  I know this.  I have seen it in my life.  When I come to the end of my strength, to the end of myself, He is there to help me up the mountain.  He is there to point out the blessings along the way, like flowers growing from the rocks.

Are you in a valley or struggling up a mountain right now?  Look around you for the blessings, the flowers growing from the rocks.  Then reach for the Savior and let him help you to the next mountain top.  He’s right there waiting for you to ask.

Day 4: Why the Variety in SB Disability?

Welcome back to 31 Days of Spina Bifida Awareness: Day Four!

God created our nervous system in an amazing way.  All along the spinal cord are nerves branching out.  Different nerves handle different parts of the body, and the nerves often handle different sides of the body as well.  So, for example, one nerve may be covering the sense of touch or movement for the left foot while a separate nerve covers the sense of touch for the right foot.  It gets even more complicated when you realize that one nerve may work with the muscles on the front of the thigh and a different nerve works with the muscle on the back of the thigh. This chart gives you a small idea of nerves and disabilities at different levels of the spine : In Spina Bifida the opening in the vertebrae gives you an idea of the potential areas of the body that may be affected.  Each person varies in how much damage was done to each nerve.  They may have different abilities on each side of the body.  Their body may also have fewer or more nerves affected than you would assume based on the areas of their opening.  This is called their Functional Level. 

A Piece of Our Story

What we know so far is that Mason’s opening/lesion level begins at the L2 vertebra.  Each vertebra under that is open down into his sacral vertebrae.  We are not sure exactly where it closes in the sacrum.  All children with this lesion level have bladder and bowel issues.  Some walk with short leg braces extending to their knees.  Others don’t.  Some can use their knees and hips, others don’t.  It depends on which nerves were damaged.

With Mason being only eight and a half months old he cannot tell us anything.  We have to go by what we see when trying to know if he can feel anything on different parts of his body.  We have to watch what he does to see the muscles he can use.  These lead us to guess at a functional level. 

Mason’s functional level seems to be a T12 - worse, or higher up, than his Lesion Level.   He has no sense of touch in his bottom, hips, or legs.  He cannot feel his lower back or abdomen.  How do we check?  We do the normal thing for parents – tickle him – and get no response.  We have other clues, such as the fact that he doesn’t cry when he gets vaccines (shots) in his thighs. 

Mason can use some muscles in the front of his thighs – the ones that pull the leg up.  One leg is weaker at this than the other meaning the nerves were affected to different degrees.  Mason never straightens his leg back out at the thigh.  He never wiggles, bends, or kicks at the knee, ankle, or toes. 

Mason does pee on his own but lacks any control.  This works both ways – he cannot get all the urine out (empty his bladder completely) and cannot keep from peeing when he laughs, cries, or uses his abdominal muscles trying to sit or roll.  We catheterize Mason 3 times a day to empty out the bladder.  What will this mean down the road?  We’ll have to see.

In the bowel department things are similar.  He poops constantly if the stool is soft.  Any muscle use in his abs causes him to leak poop.  He also can get constipated very easily.  Mason never does the typical “strain and grunt” baby routine to poop.  If constipated the only way that poop will come out for now is A) if he’s crying hard and it gets pushed out accidentally or B) with the help of glycerin suppositories or an enema.  Down the road Mason may be able to learn to ‘push’ using his abdominal muscles on purpose and poop, but he will likely end up on an enema routine combined with Miralax to help avoid constipation.

It amazes me the interplay of body systems and how one thing can impact so many others.  I’ll share more about that in a few days.

Part of the Physical Therapy Routine

Mason’s blog is a bit quiet lately because there is not much new going on.  Drinking an ounce of apple juice daily has resolved his constipation issues.   Mason seems to have inherited the sensitive skin several siblings have and it is a daily battle to keep his eczema under control.  It is pretty much at a stalemate.  We can’t get rid of it, we are just doing our best to keep it from getting worse.  He is still as cheerful as ever and still sleeps through the night – a blessing I don’t take lightly. 

I thought I would give a peek at some of the physical therapy exercises he’s working on, we do these several times a day, plus a few others I didn’t get pictures of.Hip Flex – With wearing the brace all the time his hips are constantly turned out.  He also can’t pull his own legs into this position when the brace is off, so we do it for him to stretch things.  When he pulls his legs up they fall to the side like a frog. Straight Leg Stretch – This is one of the exercises to work on straightening those knees.  Mason doesn’t move at the knee on his own at all. 

Hip Crossover – Trying to keep those thigh muscles flexible while not putting too much pressure on the hip joins and popping the hips out of their sockets. 

Tummy time – This leads to several things.  He’s slowly learning to push up on his arms to lift his chest off the floor, but he still does these airplane arms a lot.  He’s also begun learning to roll.  Makayla helped me get pictures of that process to share.

Step 1: Decide he wants off his tummy and extend one arm.

Step 2: Fall over on the arm and try to roll.  Try pushing the other fist into the floor to help.Step 3:  His helper grabs his hip joint.Step 4: Begin pulling his hip over, offering only enough support to counterbalance those heavy, non-functioning legs.Step 5:  Let him do the rest of the work using his abdomen to get onto his back completely.

Then we work the other way, supporting his hip to roll from back to belly, but I didn’t get pictures of that.  We practice rolling to the left and to the right, but he has a clear preference to roll to his right so far.  I wonder if he’ll be right handed?  The thing I’m most excited about the last 2 weeks is that Mason is starting to initiate the roll from belly to back by doing step 1 and step 2 voluntarily.  It’s just a tiny portion of the goal skill, and he may not make it past that step on his own for months now as he tries to strengthen that core, but I’m celebrating every step. We got one last picture, this is after pulling Mason from laying to sitting.  He’s much more stable in this relatively unsupported position but has a long way to go.  He enjoys it though!

Myelo Clinic Today!

What a day!  Today Mason had his second ever Myelomeningocele Clinic.  Myelomeningocele is the specific type of Spina Bifida Mason has, and the most severe.  While he and Mommy hung out at Children’s Hospital his brothers and sisters spent the morning honing their Jedi skills with Grandma in celebration of Star Wars Day.  May 4th is Star Wars Day and the typical greeting is “May the 4th be with you”, an adaptation of “May the Force be with you.”

Mason saw a lot of people in clinic today so I’ll try to go through the major ones.

Physical Therapist – After asking if we had specific things we were working on or any concerns she put Mason through quite the workout.  We came away with a list of exercises and stretches to do:

• Neck stretches to loosen up the right side.
• Sitting exercises to strengthen trunk and neck. 
• Leg stretches to loosen up his knees.
• Hip stretches to loosen up hips and thighs.
• Rolling exercises (back to belly and belly to back) to encourage him as he is trying to roll, training him of the most efficient way to roll without the use of his legs.
• Side laying playtime, which we’ll have to prop his brace with pillows if we want to do this.

We are also to start having the physical therapist come into our home once a week instead of once a month. 

Neurosurgeon – Mason’s head ultrasound from Monday looked great. His shunt is working beautifully. We went over the plagiocephaly (misshappen head) and what we’re currently doing to help with that. Mason also has a funny skull.  His sutures and fontanels (soft spots) are doing fine, but he has a floating piece of bone in his anterior fontanel that is not yet part of any major skull bone.  His soft spot there is also unusual because the front edge is in a V shape. Ultimately all those bones and sutures will grow together.  Neurology just wants to see Mason in 3 months for another head ultrasound and checkup. 

Occupational Therapist – She, too, asked lots of questions and gave Mason a workout.  Her focus right now is on trunk strength and arms/hands.  Mason is about the size of an eight month old in height and weight.  That will make learning to roll over, sit, creep, and crawl more work (on top of his SB issues that also make those things more work).  He will need extra strength in his trunk and arms to compensate.

Mason is already very social and interested in moving.  He tries to creep when on his tummy, pulling with his arms.  However, he also has yet to really relax his hands.  He usually keeps them clenched into fists and does not really try to reach for or swat at things yet.  We’re going to start occupational therapy every other week to help work on trunk strength, creeping/movement, and using his hands and arms.  The Occupational Therapist will also come to our home, probably on a different day that the physical therapist so Mason isn’t too tired to work with each. 

And, of course, I was given a list of things to work with Mason on daily.

Between PT, OT, and the almost weekly other medical appointments we’ll have medical things going on three of the five weekdays a lot of the time.  Should be interesting!

Urologist – Dr. R came in to go over the urodynamics study and renal ultrasound with us.  So far everything looks good with Mason’s kidneys so we’re to stick with cathing him 3 times a day.  The great news is we don’t need to begin Ditropan.  That is a bladder medicine that helps if urine is refluxing into the kidneys and doing damage, but it has side effects we really don’t want to deal with if possible.  Mason gets another renal ultrasound and checkup in 3 months.

By the time we got to the last major doctor Mason was exhausted.  He slept through the entire exam by the developmental pediatrician.

Developmental Pediatrician – This doctor goes over all the other doctor’s reports and also has her own things she checks, including Mason’s skin.  Mason currently has two skin issues, neither serious at the moment.  First is his Eczema, which is on his elbows and all over his head.  We’ve been actively treating it with cream and heavy-duty lotion, so it’s not too bad at the moment.  It gets worse with every bath.  The second issue at the moment is heat rash.  Behind Mason’s knees, which don’t straighten, with all the cute chub he has, the skin is getting hot with the warmer weather and heat rash has started.  The plan for now is to use baby powder or cornstarch regularly to help keep it dry back there.

It was a good day full of ideas, suggestions, questions, and information.  I think my head is about to explode – it seems like there is always so much more to figure out, work on, and learn. 

Next week Mason goes to the developmental opthamologist to check out his vision.  Hopefully all is normal and we can mark at least one doctor off our regular list!

Urodynamics and Ultrasounds

This week is a busy week for Mason!  Today he spent almost 6 hours out of the house for doctor’s appointments.  Friday he’ll do it again for about the same length of time or a bit longer.  The other six children stayed home with daddy today, so I got some fun time just with Mason.  He is such a trooper!

First up today Mason had a urodynamics study done on his bladder.  It involved a catheter in his bladder, a sensor in his rectum, and more sensors taped to his bottom.  Other than this face - he did just fine.  After emptying his bladder (and collecting urine to test for a urinary tract infection) they slowly filled his bladder back up using the special catheter.  The sensors kept track of pressure and muscle tension.  They kept filling him up until he leaked around the catheter.  When he was done peeing they used the catheter to empty his bladder again and measure what was left.  It was a long, boring test in all. Results:  Mason’s bladder holds a decent amount for his age.  He does pee on his own some (which we knew already) but his bladder is inefficient.  It doesn’t squeeze all the urine out.  We had been cathing him twice a day to empty that out and hopefully avoid bladder/kidney infections.  Based on his urodynamics study we’re supposed to start cathing Mason 3 times during the day (none at night).  We’ll see how he does with that as we go along.

Next up he had two ultrasounds.  First a brain ultrasound to check the fluid levels in his ventricles.  From what I could see they look just fine.  I’ll talk to neurosurgery about it this Friday.  The gel flattened his spiky hair…LOL. The second ultrasound was a renal ultrasound to take a look at Mason’s kidneys.  They started with him on his back and checking through his abdomen, then they turned him onto his tummy to get another angle. It was a great way to sneak in extra tummy time for Mason! (See the gel in the hair?) Everything looked pretty good so we’ll talk with a urologist about the specifics of the renal ultrasound this Friday as well.

The only other change is we’re switching Mason to an 8 French catheter from a 6.  We’ve got about a box of the 6’s left to finish using and then he’ll move up.  The only thing that will really do is empty his bladder faster (the tube is a bit bigger).   Cathing 3 times a day will have us going through 90 catheters a month. 

Cathing Changes–Back to 12 hours

Just a quick note about how catheter life is going for Mason.  The urologist had us try cathing once every 24 hours but we were getting too much urine with that schedule, so we’re back to cathing twice a day (morning and evening).  Mason pees a ton on his own still, but the goal of cathing is to clear out residual urine completely each day to avoid infection. 

At the end of next month Mason will go in to Children’s for a urodynamics study on his bladder/bowel.  It will give us more information about how his bladder is working.  Mason has neurogenic bladder (and most likely neurogenic bowel).  Basically, nerve damage was done to his bladder when his spinal cord was open, it’s part and parcel of many spina bifida patients’ lives.  Sometimes that means the bladder has spasms, which need controlled with medication to avoid urine backing up into the kidneys and causing infections and kidney damage.  Sometimes there are issues with incontinence or an inability to empty the bladder completely.  We’ll learn more about Mason’s specific issues as he grows, and the urodynamics study is one step along that path.

All in all life is going wonderfully well.

We feel so blessed to have Mason as a part of our family!  He’s a strong, sweet spirit you can’t help but love.  He makes everything look easy and we feel the power of the many prayers that have been and are still being offered in his behalf.  God is awesome! 

Cathing Changes, Baby Blessing, and more

Today I have a moment to update everyone on Mason so I’m grabbing it!  The last week has been a pretty nice, calm week.  Mason’s sleep schedule has been shifting ever so slightly in a bad way.  He’s decided his official bedtime is 11:15pm.  From about 8:00pm on he’s awake and by the end of it just a wee bit grumpy.  Of course, so am I… I’m just not a night owl.  I won’t complain too loudly though because when Mason does finally go to sleep for the night I often get a 6 hour stretch of sleep before he wakes again. 

Another big update is the urologist changed his catheterization schedule to once a day!  We were getting a fairly low volume out every 12 hours and so now we’re trying out cathing once every 24 hours.  So far we’re still getting low amounts of urine out so we’ll be trying this out for at least two weeks and then checking back in with the urologist.Today was a special day for Mason – it was his blessing day at church.  “Every member of the church of Christ having children is to bring them unto the elders before the church, who are to lay their hands upon them in the name of Jesus Christ, and bless them in his name” (D&C 20:70)  My dear husband performed the ordinance.

Upcoming for Mason in the next two weeks are a few big things:

1. He gets to meet his aunt and four cousins this week when they fly out to visit for a month.  His uncle is serving our country with the Army currently in Afghanistan so Mason has to wait a while before meeting him.
2. Mason gets his casts off this Friday and moves to a foot brace for his clubfeet.  Yay!  I’m going to be so glad to see those things gone.  We’ll also have to start doing some physical therapy here at home to get his legs to stretch out straight again – his tendons/ligaments in his knees have tightened up from being bent in one position for over a month and his legs won’t stretch out straight anymore.  Not surprising. 
3. The following week Mason has another brain ultrasound to check on how his shunt is working and will see Dr. J the neurosurgeon as well.

With that update it’s time for me to go snuggle some kiddos!

Catheters–an Update

Mason, like many children with Spina Bifida, has some bowel and bladder issues due to muscles being affected from the nerve damage of his SB.  Standard protocol is to catheterize the child from birth to empty the bladder completely.  It’s important to empty the bladder completely to avoid urine staying in the bladder and becoming infected, causing bladder and kidney damage. 

When Mason was born the NICU started with cathing him every 3 hours around the clock.  They would measure the amount they were getting and weigh his diapers as well, trying to see how much he was peeing on his own.  A few days into our NICU stay they moved Mason to a 6 hour cath schedule because he does pee in his diaper some as well.  That is the schedule we came home with.  What it meant was that every day and night without fail we had to set an alarm to wake us so we could catheterize Mason.  Do you know how awful it feels to wake a baby who is finally sleeping, especially in the middle of the night?  I just want to let them sleep. 

I also posted here about how we had some trouble cathing Mason at first.  It’s a matter of coordinating the tube through several openings.  When we came home Mason was not circumcised, so we had the opening in the foreskin first.  Easy to get through but because it’s semi-loose skin it doesn’t stay lined up with the opening in the penis.  You can very easily miss and never make it to the sphincter and bladder where the urine is.  It was frustrating to say the least, though it got easier with practice.  We finally got approval from all the doctors involved to have Mason circumcised and it’s made a big difference in how easy it is to cath him.

Well, at Mason’s first Myelo clinic we were sent home with a chart to fill in for 6 days of Mason’s caths.  We were to cath into a tube with measurements marked on the side, write down how much we got out and what time it was, and if his diaper had been wet or not.  That’s all the explanation they gave us so we had no idea what amounts they were looking for, we just knew they wanted to make sure we were cathing often enough for Mason’s body. 

We turned in the record and a few days ago got a call from urology with good news.  Based on the amount of urine we’ve been getting at each cath Mason’s schedule can be changed. Now we only have to cath him every 12 hours! That’s twice a day and both times can fall in hours he’s normally awake.  We’re going with 8AM and 8PM.  No more waking him in the middle of the night!!

Even better, the urologist told us what amount to watch for.  If we’re consistently getting more than 45mL of urine when we cath him we need to cath more often – trying every 8 hours.  So far we’re well below that amount.  The most we’ve gotten is less than half that – 22mL. We’re to keep track for a week and let them know what we’re getting, then they’ll consider moving him to cathing once a day.  Honestly I can live with cathing twice a day if that’s the best way to protect Mason’s kidneys and bladder, it fits in our day easily.  However every diaper that Mason pees in on his own is a blessing – it shows us that those muscles are working some on their own. 

I don’t know what we’ll end up needing to do ultimately.  I have some hope that as Mason gets older he’ll learn to use those muscles on purpose to empty his bladder and we’ll not need to cath at all.  I think it is possible because right now when he gets upset during a cath he tightens up those muscles and literally pushes the catheter tube out.  Right now only God knows what will happen. 

Every Baby is Different

I thought I would do a quick post today.  I’ve noticed over the years that each baby is truly an individual and you have to learn to parent all over again in many ways.   

For example, I’m an old hand at diaper changes but Mason’s brought new aspects with the cathing, frequent bowl movements due to low muscle tone in the anus, and a never-ending battle with skin breakdown due to all the poop.  I’m comfortable feeding and burping a baby, and reading baby’s cues.  I’ve learned that babies are noisy and don’t need picked up at the first little sound – they mumble, grump, coo, and make a whole host of sounds that are just them talking to themselves about how they’re feeling. 

Sleep has always been individual from child to child.  I’ve had several who preferred to co-sleep in bed with mommy and daddy, a few who liked the crib or the bed, some who slept in a swing, and one who would only sleep in her crib.  Sleep is a loose term.  Most of my children don’t sleep through the night without waking until after age 2, and many were still waking 2-3 times a night at age 2. 

Mason seems to be a generally predictable sleeper.  He wakes up to eat every 2 hours on the dot during the day (with diaper changes often coming more frequently due to the muscle issues).  However at night he sleeps a 4-5 hour stretch, wakes once for a diaper, cathing, and bottle, and then usually sleeps the rest of the night.  He seems to prefer filling his tank so often during the day so he can get this nice long night sleep.  It’s blissful and I hope it lasts! 

Mason can sleep through just about anything during the day.  Not all my children have been that way.  Maybe it’s because he’s the 7th child and the house is always full of noisy siblings?  They can be singing, playing piano, running, jumping rope, playing tag, or banging on pots and pans and if Mason’s sleeping he’s not likely to wake up.  I love it!

Some of my children had a very specific preference for mommy from day one.  They wanted only my arms and would be content nowhere else for the early months.  Mason’s pretty mellow and accepts Daddy, Grandma, and big sister Makayla’s arms any time. 

Another thing I’m loving during this time is seeing my other children mature in different ways.  It’s been most noticeable with Makayla age 10.  There’s a difference even from a year ago when I gave birth to Caleb.  She is very capable – she carries and holds the baby, soothes him, feeds the occasional bottle, and can do diaper changes.  Last night she asked if she could learn to cath Mason so today she did it.  She amazes me!  In many ways she knows more at her age about caring for babies than I did.  I did not have any experience with babies before I had my own.  I had a decent amount of babysitting experience – but almost always with toddlers or older children.

Oh, and one last thing:

Happy Valentine’s Day!

More of our Day

Today has gone better in the cathing department – it’s amazing what prayer can do to help.  I know it’s still going to take lots of practice and more failed attempts, but at least we’re getting it accomplished each time we need to.  Mason had his first bath at home today.  The other children were quite interested in it because Mason has to have a sponge bath (no immersion in water) for at least a few weeks while his back heals.  He liked having his hair washed/head rubbed but wasn’t a fan of the rest of the process.  Joseph really enjoys holding his little brother. He was hovering while I fed Mason after his bath, waiting for his turn to hold him.Caleb was especially fascinated.  Once Mason’s bath was done Caleb came over and laid down on the drying towel for a turn – hehehe.  Funny boy!

All my sickies have been okay today.  Most aren’t interested in eating much, but are drinking a little and nibbling at meals.  I am starting to feel really sick to my stomach and the smell of dinner just about did me in.  Should make for an interesting night!  We did get all the sheets, towels, blankets, and pillowcases gathered, sorted into tubs by size, and put neatly in the hall closet upstairs, so we’re ready if we have another sickie night.

A Rough Night

Last night was rough.  Really rough.  The funny thing is the newborn was the least of the trouble!

Over a 3 hour period three of my children threw up.  My husband and I stopped counting when the throw up count reached 15 episodes.  We did laundry, washed children, washed floors, and washed it all again and again.  shudder  Mason slept fairly well but was awake for part of the puking hours.  He seems to be working between a 2.5 and 3 hour schedule right now.

In Mason care I had a mini-breakdown at 6:00am because I was trying to catheterize him and just couldn’t get it in past the sphincter to the pee.  You know you’re hormonal when you start crying and moaning that you’ll never get this figured out and your husband will have to come home from work to do it.  LOL.  I did get it in finally and in my head I know that in a few months this will seem really funny because it will be something I know really well how to do.  It will be easy then.  I wish it was easy now though!

We’re all up now and my big plan for the day is to go through the closet and separate fitted and flat sheets by bed size, gather all the towels into nice stacks, pillowcases into a stack, and find all the extra blankets in the house.  My hope is that we won’t need all that preparation for another night but I’m certainly not waiting around – there are still 6 people in this house who’ve not thrown up yet!  We could have puke nights for quite a while yet.  Gulp!