No More Bandage! Pictures of Mason's Back

One week ago today Mason had surgery and that meant we were able to remove his bandage this morning.  We found that our neurosurgeon followed the same general incision line Mason had before, so it is horizontal.  There is still a layer of surgical glue over the incision.  That will begin coming off this week and next on its own. 

Here is a close up of the incision.  It looks pretty similar to the last one.

The only odd thing I didn't get a picture of, it is a bit difficult to get across in a picture.  If you look at Mason from the side and run your fingers down his spine from neck toward his bottom you feel the spine begin to curve out just above the incision.  That may be normal or may be a bit of swelling.  However, when you get below the incision his back seems to dip in again.  That may be evidence of the scar tissue that was removed or may simply be noticeable because the upper part is swollen.  Only time will tell! 

And just because he's cute, here is a picture of Mason playing with the car track.  Joseph taught him how to use the car launcher.  And yes, that not so little baby behind Mason is Samuel.  He's eight months old and crawling around after his big brothers.  He likes to chew on the track.

For a week out from surgery Mason is doing really well and back to most of his normal activities.  He's happy and bossy and enjoying being home surrounded by family.  He's almost settled back into normal sleep routines too.  The hospital always throws him for a loop with checks at all hours, so he had been staying up until midnight every night and taking a late nap each afternoon.  He is falling asleep before 10pm now and nap begins closer to 1:30pm.

Mason Feels....Great!

It is Sunday and time for an update on Mason's post-surgery recovery.  To be honest, if you had told me on Tuesday or Wednesday that by the weekend Mason would be playing pretty much like he was before surgery I wouldn't have believed you.  He was in so much pain and didn't move unless you made him.  He feels so much better already.

He is crawling.  He is sitting himself up.  He is climbing.  He is on the go for hours at a time before he needs to slow down and rest. 

That core strength we were concerned about?  It's strong!  He's able to lift both hands and balance for a while. It is a beautiful blessing from God! 

We still have not seen his incision.  We remove Mason's bandage tomorrow morning. I'll take some pictures when we do. 

Mason is Home - Surgery Update

Mason's surgery journey is not over but I want to share details of the week so far before I forget them.  For those wondering, Mason came home Thursday evening.  Now let me back up!

Monday morning Mason and Mommy went to Children's Hospital for his scheduled Spinal Cord Detethering.  He spent his time in pre-op playing and relaxed.  When it was time for anesthesia he went to sleep with the mask while snuggling Mommy, no problems. 

I spent several hours waiting while Mason had surgery.  Dr. G came to see me when the surgery was finished.  Everything went smoothly.  The spinal cord was very tightly tethered.  He released it and tested some nerves in his legs to see if there was any function in them.  One responded a bit, the other did not.  What that means only time will tell.  Dr. G hopes Mason will not need another detethering for years, his hope being 10 years, but with all things like this we just cannot predict how long before it happens again and causes nerve problems.

Mason and I were moved to the Neuro floor of the hospital and thus began the longest 2 days ever.  Mason needed to remain laying flat.  We watched a lot of Curious George using the Kindle Fire.  He struggled with pain management.  In the times we had to roll him to change a diaper it was agonizing. 

On Tuesday morning Mason was given several medications and one made him throw up everywhere.  We had to clean him, the bed, and everything else while keeping him flat.  It hurt.  Even worse, on day 2 Mason had to get a bandage change because a nurse tried to do his enema and got his bandage wet.  It was the worst things I've ever heard from my little man and halfway through one of the three nurses went running for morphine to try and help him get through it. 

By Tuesday night at midnight Mason just wanted Mommy to lay down with him. (Up to this point he was in a hospital crib).  So at 12:03AM we got a regular bed and carefully moved Mason, keeping him flat.  Mommy climbed in bed and we tried to get some sleep.

Wednesday we were given the ok to start sitting Mason up.  We started slowly, with him reclining on me.  It hurt him to move but once he was in position he was okay.  At this point there were no leaks of cerebrospinal fluid (CSF) from his back. 

Later in the afternoon he sat up with the help of his hospital bed to eat dinner.  Pain management was going better, Mason no longer needed morphine, but I had to stay on top of nurses to get his medications on time. 

Thursday Mason spent the morning lounging in bed, working his way back to sitting with the bed being raised.  At lunch time he demanded to be allowed in his wheelchair.  My tiny dictator!  I picked him up and he didn't cry.  It was uncomfortable I am sure, but not painful like before. 

Once he was in his wheelchair he ditched the idea of eating lunch and took off out of the room.  We spent the next 2 hours wandering the halls of the floor, visiting the playroom, and 'walking'.  Mason just wanted out of that hospital room.  Toward the end of that he was tired and let me push the wheelchair, doing laps around the halls.

Finally we went back to his room for cathing/diapering.  He did well on the transfer to the bed and it was then that I realized just how big a difference a day can make.  He truly felt better. We were heading home. 

It is now Friday morning and Mason is happy and doing well.  So far his back is not leaking CSF and he is thrilled to be out of the hospital.  There is nothing quite like being in your own home, getting into things, and surrounded by family.

He also thinks the food at home is way better than hospital food.

Movement and Function

I want to make a quick note here about the results we're seeing so far from surgery. 

• At this point Mason is moving both legs at the hips better than before surgery.  Its obvious that he's stronger there. 
• The hip and foot contractures - the jury is still out.  I think his feet have more flexibility/range but it's too early to tell.  We will get right back to doing his leg and foot stretches and see what happens while we wait for more appointments with other doctors in the future. 
• Mason's sitting balance is off.  Considering how many muscles it takes to sit and balance, and that a portion of those were just cut on Monday, this is not surprising.  As his back heals we expect he will regain his balance.  He also can't sit himself up at the moment, which takes using a lot of back muscles in ways that hurt right now.  Again, we expect this will come back as his back heals. 
• We have no idea what this surgery has done to Mason's bladder and bowels.  We will have some tests done in 3 months to check the bladder, we will continue nightly enemas and watch what happens with his bowel function. Our hope is that things stay the same, that nothing got worse (lost nerve function more).  Only time will tell.

Wednesday Postoperative Update

Mason continues to do well.  He seems to be in less pain today which is a blessing.  He spent about 45 minutes reclining on Mommy before lunch and will be getting out of bed and upright in his wheelchair this afternoon.  It was wonderful to finally be able to hold him. So far there is no leak of spinal fluid and we pray for that to continue.  If all goes well and pain stays managed we may head home Thursday sometime.  Our first priority is doing what is best for Mason so if that means we stay longer we will, just have to wait and see.

Mason surgery update

Just want to let everyone know surgery went well yesterday.  Mason is doing well laying flat and we will be here several more days. I borrowed his kindle fire to post so I don't know how to get a picture up.  Just imagine him smiling. Ok, got it.

Leg Contractures and a Last Back Scar Photo

A blog reader had a great question.  She was wondering what I mean when I'm talking about Mason's leg contractures.  I really don't have a great explanation without pictures so here are a bunch from this morning.  As you can see just from the first photo, Mason's legs do not stay stretched out on their own.  His right leg tends to be pulled up even further than the picture shows, but this is a good representation.  His right leg has the worst contractures.

Here is a view of Mason's right leg.  What I am doing is rolling his hip in so it is not frogged out and then trying to push it down into a straight position.  I'm pushing pretty firmly and it won't budge.  Six months ago it would have straightened pretty well.  Over a period of a month it went to about half this angle when Mason hit a growth spurt.  It has continued to get worse.

Here is a view of Mason's right foot.  I am attempting to push his foot flat like it would be to wear a shoe or stand on the floor.  This is as far as his foot will go, pointed like a ballerina a ways.  It, too, changed very rapidly.  When he was little this foot was so flexible.  Then it started only going to a flat position, then over the same month as the hip it stopped going flat at all.  Mason cannot wear regular shoes because his foot won't fit in them. 

Here is a view of Makayla holding Mason's left leg, hip rolled in, attempting to straighten it flat.  It goes much straighter, as you can see.  What you cannot see, or feel through a photo, is the tightness and tension in the hip.  It is beginning to contract and getting it this straight takes a good bit of pressure.

Here is me holding that left foot and trying to flatten it.  This foot is no longer flexible and is progressively getting worse too. 

These contractures began rapidly during a growth spurt because Mason's spinal cord is tethered.  Usually the spinal cord is floating around in the spinal vertebrae.  His has stuck to the scar tissue from his back closure because he's missing part of several vertebrae.  When the spinal cord is stretched tight like this it causes neurological symptoms and ultimately does permanent damage.  The detethering surgery Mason has on Monday will hopefully remove this underlying problem. 

That will still leave us with tendons and muscles that have contracted, or shortened.  Mason will probably need surgeries on the right hip, right foot, and left foot to lengthen or release those tightened muscles and tendons, followed by casts.  We don't know the details on those surgeries and won't until his tethered cord is fixed and things heal.  There is a possibility that some intense physical therapy will stretch the left foot back out and make some gains on the right hip and foot.  We will talk all that over with the orthopedic surgeon when we get to that point. 

To change topics for a moment - I wanted to share here photos of Mason's back as it looks today.  If you read back through the first year of his life we tried to update photos of his back scar as he grew.  With the surgery on Monday we will once again have healing to do and what is pale and much less noticeable now will become an angry red slash again.  I want these pictures to remind me that scars fade in time.

I took these picture in the middle of the day today.  Mason thought I was quite silly trying to fold down his pants and diaper, have him sit still, and take a picture from behind him.  And yes, he is the most handsome, cheerful little man.

Here is a close up of the scar.  Parts of it are original, from the day of his birth.  The outer ends were smoothed out surgically last May.  He does have feeling all along the scar and a little below it. 

Here it is from further away to give you better perspective on where it is.  I don't know where his new scar will take over the old one, or how much of the old one will be left.  The new one may be vertical instead.  It really all depends on Dr. G! 

Well, if you've read through this long post I thank you!  I hope that some of what I share here helps others.  As always, if you have any questions for me feel free to ask!  You can leave a comment or email me at tdrowlee1 AT gmail DOT com. 

MRI Results and the Big Surgery

 

Today was the big MRI day for Mason!  He and I went to Children's Hospital before breakfast this morning and he got into their spiffy blue pajamas.

He was not very impressed.  Poor guy lodged a complaint because they do not have orange pajamas.  What can I say?  He loves orange!

 

He was in a much better mood once he got to start cruising the halls in search of the ocean room.  The ocean room has a treasure chest and wall full of small toys and activities for children to choose from while they wait around for anesthesia.

Today Mason chose a marker and coloring book.  We headed back to his room and just relaxed for a while.  He watched some Curious George on the Kindle Fire and I read a book.  There really isn't a lot to do besides wait. 

Or cruise the halls.  He does that a lot by the end of our wait time. 

Eventually we were taken to the MRI.  The anesthesiologist introduced himself and got a medical history and then it was time for Mason's beauty rest.  He took the anesthesia mask like a champ and drifted off to sleep.  Meanwhile he got nearly 2 hours of pictures taken of his brain and spine. 

While he was doing that I went to the cafeteria to pick up some food and went to the surgery waiting area.  It's a room full of people all worried, waiting for a doctor to come update them on their child.  I read some more and eventually Mason's time was up.  I met up with my sleepy little man in our tiny post-anesthesia room.

He enjoyed a popsicle and then it was back into his own clothes.  The next stop was Neurosurgery at the other end of the hospital.  We wandered our way over, stopping to check out the saltwater fish tank, the indoor plants, and anything else that caught his eye. 

More waiting commenced and this time it was PlayDoh to the rescue.  He squished and rolled and stuck toys in the playdoh.  I filled out papers and read and picked up the lid to the playdoh can six or seven times.

We got settled in a room and talked with Dr. G, our neurosurgeon.  He showed us the pictures from the MRI and confirmed that our next step is detethering Mason's spinal cord.  The hip and leg contractures have gotten worse.  The shunt in his brain is working properly.  The spinal cord is stuck to the scar tissue on his back. 

According to our neurosurgeon the tether looks relatively uncomplicated.  It means a surgery time of 4-6 hours.  The potential benefits are that Mason will be able to grow and the spinal cord will be able to move as he does, the contractures in his hips and legs won't get worse (fixing them will likely be more surgeries with the orthopedic surgeon if the muscles truly have contracted completely), and he won't have other neurological symptoms begin as the cord gets stretched even further with growth spurts. 

The potential drawback to the surgery is that the nerves and spinal cord may be damaged even further during surgery.  That's a really big drawback!  It could mean that Mason loses some muscle strength permanently in his core, which could translate in losing the ability to sit up on his own.  It could mean loss of the little amount of movement he does have in his hips (he can pull them up some).  It could mean loss of his sense of touch further up his abdomen and back.  It could be a lot of things.

Dr. G doesn't expect to see that happen.  The cord is tethered below Mason's current level of function, so he believes that even if anything were damaged during surgery it would be parts of the spinal cord already damaged and not working.

There can also be the usual surgery complications: problems healing, infection, leaking spinal fluid (would take another surgery to repair).

Mason is having surgery on Monday in just 4 days.  It will be St. Patrick's Day.  Dr. G expects Mason to be in the hospital for 4 days but if there are any complications with healing or leaking it could be longer.  I will be staying with him the whole time while Daddy and Grandma hold down the fort here at home with the other seven children.  Daddy will come visit a few times too.  During the first few days of recovery Mason has to stay laying flat on his back. He will be in some pain because this surgery will be on his back in an area where he has feeling. 

The next few days we will spend time preparing the house for me to be gone for a week, grocery shopping, packing, and spending time as a family.  He'll get a priesthood blessing Sunday evening and then we'll just take things a day at a time.

Glasses and a New Accessory

 

Mason painting.

We've had Mason's new glasses for over a week and they're working beautifully.  He adjusted to wearing them with no trouble.  It has been amazing to watch the difference wearing glasses makes - his eye almost never turns inward when he is wearing them.  Take the glasses off and his eye begins crossing within a minute.  I'm grateful for simple solutions!

At the DMV last week I got a new accessory for the van.  It's something I never expected we would need, another change that came with Mason and his wheelchair.  The kind lady behind the desk nearly broke my heart.  "This expires in 5 years.  Hopefully your son won't need it by then."

How do you explain to someone that your child will never walk?  Permanently disabled is not something that should describe a 2 year old and yet it describes my son. 

Usually that doesn't register in my mind, we are so busy living this wonderful, messy, normal life.  Mason is the typical two year old who charms you to get what he wants, has the occasional tantrum and tears, and gets into everything not bolted down.  He is smart.  He loves Curious George.  He likes books.  He laughs and smiles and has favorite songs he wants you to sing twenty times in a row. 

I haven't used our new accessory yet. I'll be hanging it Thursday when Mason and I head to Children's Hospital for his Brain and Spine MRI under general anesthesia. I hope it feels just like any other day but I'm afraid another little piece of my heart will break because of it.  On a day when I'm already overwhelmed at what we are facing, a day when results will decide when we go in for a surgery that could change our lives, I don't want one more thing to remind me how different our life is. 

Instead of worrying about what is coming I'm choosing to focus on today.  And right now that means a little man who has escaped up the stairs again and needs removed from the bathroom before he plays in the toilet.  Again.  Boys!