Saturday, August 30, 2014

3 Years Ago Doctors Dropped a Bomb

Three years ago today we heard words you never expect to hear at an ultrasound, "There's something wrong with your baby."  Three years ago we began a roller coaster of research and doctors and ultrasounds.  Within a week we had met with specialists who explained that our yet to be born son's spinal cord was sticking outside of his body (spina bifida), that it was just a matter of time before his brain developed too much fluid (hydrocephalus), that both his feet were bent and twisted (clubfeet).  Words like disabled, paralyzed, wheelchair, permanent brain damage, and abortion were thrown at us through the cloud of our grief and worry.  "I'm sorry," was repeated over and over by doctor after nurse after surgeon. 

I process things by writing and started this blog right away, keeping it private at first.  We began searching out a community of individuals who had traveled this path before us and discovered that few, if any, had blogged about the journey until their child was a few years old.  I resolved through my tears that I would share our ups, downs, fears, joys, and life online.  I had already been blogging for years about our family's homeschooling journey and beginning another blog was easy and familiar. It was one of the few familiar things during that time.

There were ups and downs during the rest of the pregnancy but an underlying feeling of peace.  We knew that God had created Mason and that this was no surprise to Him.  We loved and looked forward to holding our son and getting to know his personality.

Mason is now 2 years and 7 months old.  Our family has dived deep into the world of medical needs.  There have been surgeries, fourteen of them, mostly on his brain, but also some on back, legs, and even bottom.  We navigate the waters of appointments and medical equipment and insurance companies.  Some of the things we heard those very first days after diagnosis have come to pass but many more have not. 

You can look at the bare facts - paralyzed, wheelchair, disabled, will never walk, cannot live without the lifesaving brain shunt that has failed six times already, a lifetime of surgeries ahead.  Those paint a picture in gray that seems dark and sad and hopeless.  It is an incomplete picture, woefully inaccurate.

As you get to know my son Mason you begin to see a vibrant world painted with colors - joyful, smart, bossy, loving, determined, alive, thriving.  Mason is a child full of personality, a child who just happens to have some physical challenges.  Yes, they will shape him.  They have shaped our whole family to be more aware, more patient, more in awe of God's creation.  Mason tackles life head first, finding a way to do what he wants, painting his picture in broad strokes of color - especially orange.  He loves orange!

If doctors paint a grim, gray picture of your unborn child's life with Spina Bifida or other diagnosies - hold on to hope.  God's picture is so much brighter and awe-inspiring.  Your child is not broken, a mistake, an accident.  They are God's creation lovingly made.  He has a plan and a purpose for your child.  There will be hills and valleys along the way.  It will be the adventure of a lifetime!

Monday, August 25, 2014

Infection Strikes - A Post-Op Update

This blog is one way we document Mason's health adventures so today there is a bit of an update.  We did a bandage change on his hip last night to discover the hip incision from his surgery has become infected in about a 1 inch section on the groin end of the incision.  Drat!  After chatting with the orthopedic surgeon on call last night we were told to head in this morning to have it checked.  So Mason and mommy headed in to the big city an hour away while Daddy oversaw the homeschooling of the rest of the children. 

The doctors agree, it is infected.  They think we caught it early enough that prescribing a course of antibiotics should work.  They opted not to drain the incision today (hooray!) and we're now to do daily bandage changes to monitor how the incision looks.  If things change for the worse we'll go back in, but if not, Mason just has a 10 day course of antibiotics to take. 

Mason is feeling all right.  The area is tender to the touch but in general he's cheerful.  He is not impressed by the flavor of the antibiotic.  That means we'll be fighting to get it in by the end of the 10 days.  It's one of the un-fun parts.  He takes 3 doses a day. 

We are still mostly homebound but Mason is thrilled to be able to spend half his day sitting and wheeling around.  He's also been enjoying some Curious George games that were sent to him by some dear friends, so we save playing with those for the hours he is stuck laying around on his tummy.

Wednesday, August 20, 2014

Mason's 2 Week Checkup and a Video

Mason had double surgery two weeks ago.  He has been spending all his time laying down which has led to some creative ways to keep him busy and happy.  He's painted and participated in homeschool laying on the table. 

He has snuggled up with Daddy and others.  He has been caught climbing up and down from the couch.

Today was his first checkup with the surgeon.  The hip bandage was removed and the incision looks pretty good, a bit pink in one area.  We'll be keeping our eye on that and continue putting a bandage on the hip for a while yet because it is in his diaper area and we want to keep it clean.

The absolute best news of all is that Mason is now allowed to spend up to half his waking hours sitting up!  The rest needs to be tummy time to stretch out those tendons in his hip, and he still must remain ace bandaged like a merman.  We are also still supposed to keep away from church for a few weeks to avoid Mason getting a cold from another child in the nursery, because right now his body is working really hard to heal from his surgeries.

When we came home today and Mason was finally allowed to get in his wheelchair.  He was ecstatic!  I wish those who see my son in a wheelchair and think or even say "Poor thing!" could have seen it.  A wheelchair to Mason is freedom. Here is a video of his reaction:

 The first thing he did was spin and spin and spin while giggling joyfully.   My reaction was to sob and cry to see my son so happy to move around with his wheelz. 

Four more weeks to go before the cast comes off.  He's healthy and we're loving every day together.

Tuesday, August 12, 2014

One Week Post-Hip and Heel Surgery

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

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

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

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

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

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

Thursday, August 7, 2014

Day 2: Feeling Better

Mason had surgery two days ago and is feeling much better today.  So much better that he's already belly crawling all over the floor, has figured out how to sit himself up despite the mermaid wrap on his legs, and is becoming quite annoyed with my reminders to lay down.  One thing he loved this morning was having a picnic breakfast. It worked much better to do this on the floor than on the couch. 

He played with playdoh for quite a while and I'm still finding bits of it on the floor. He also played upstairs in the bedroom with some of his siblings but it's harder to belly crawl on the carpet up there. 

Today's quandary: How can I protect his toes from the floor when he's on his belly playing and eating?  They stick out the ends of the casts and they way the brace holds him they point straight down to the floor.  Then he moves with his arms and they are dragged, bent, and scraped along awkwardly.  Of course he can't feel it at all, so he doesn't know if he's hurting them or not.  I tried putting socks on but really they don't provide much in the way of padding.  We'll play around with it.  I also have tried rolling up a towel or blanket under his ankles when he's just laying in one general spot eating, drawing, or playing with playdoh.  It even slides along with him for a bit on the wood floors, but not at all on the carpets. 

Mason is napping right now, which is why I can blog for a bit.  He has asked for his wheelchair 8 times so far.    

Wednesday, August 6, 2014

Double Surgery Done - and we're home!

Mason was given a surgery time of nearly 1:00pm so we had a bit of an unusual night.  At 2:30am I woke him up for breakfast.  Have you ever done this before?  I may be the lone crazy surgery mom, but I wanted to put food in that belly of his in hopes that he would be just a bit less starving as our morning went on.  He had two slices of banana bread that Daddy made, a few bites of sausage, and a glass of milk.  As of 3:00am he was left with only water as his option if he got hungry/thirsty (and only until 9:00am).  Thankfully, we went upstairs after this super early breakfast and he went back to sleep!

He slept in a bit this morning. We played at home with his brothers and sisters until Grandma came at 9:15am.  Then it was time to head to the hospital an hour away for pre-op check in.  Our drive was uneventful except the hospital called to see if we would be ready to go into surgery earlier.  Yay! We listened to music from the movie Frozen and from Casting Crowns for the drive.

After check in they took us right back to pre-op.  Mason was happy to play.

Surgery took less than three hours and I got this cutie back.

However, he was quite changed - Mason is now a merman!  The orange cast is a regular hard cast and that is the side his surgeries were on.  There is a dressing on his hip above the cast as well (and that is the area that hurts).  The other leg has a cotton cast with ace bandage wrap to protect it from being scraped up by the orange cast.  And then both legs are wrapped together mermaid style.

We managed Mason's pain as best we could and he slept well all night.  The next morning (Wednesday) he felt a bit better.  He spent time drawing and watching Curious George and Max and Ruby. 

Here is what things look like under that ace bandage wrap.  When we need to catheterize Mason, change a diaper, do an enema, etc, we unwrap the ace bandage holding the legs together.  Other than that the plan is to stay wrapped like a merman for the next 6 weeks.  Mason is not thrilled.

We came home this afternoon and at first Mason spent some time laying on Mommy.  He was adjusting to the noise and busyness of home. 

It did not take long before he started playing playdoh while laying on his tummy.  He did this for more than an hour.  The rest of the evening has been spent trying to keep him laying (on side, back, or belly).  He wants to sit up, to crawl around, to do anything but lay.  I do not know how we will keep him laying for so long but we'll figure something out.  (Funny fact - Mason can't wear pants or shorts for 6 weeks!  We're going to find some longer shirts from the big brothers but for today at least we have a lot of diaper bottom going on.)

We are pretty much housebound (Mason and Mommy) for the duration of the 6 weeks, other than a checkup with the orthopedic surgeon in 2 weeks.  He's not to spend time sitting in his car seat, sitting at the table (all eating is to be done laying down if possible), or sitting anywhere else, like in his wheelchair or at church.  I know that right now it seems like 6 weeks will last forever but in the big picture it's not that long.

At some future point I will share what we're trying for Mason's enemas.  At this point we're just doing trial and error to figure out how we can manage this without getting poopy fluid on his casts.  And I know some day I will laugh about it all.  Today is not that day.

While we try to find a way to make enemas work we also run a race against constipation.  Today we did not get much poop out at all.  We are watching his diet very carefully to avoid constipating foods, pushing fluids, giving miralax, and all the usual things.  I'm going to be talking with Children's Hospital tomorrow to see if anyone in other departments has ideas for how to manage the poopy business in a child whose body doesn't poop on its own.  Prayers are always appreciated!

In case you were wondering - it is wonderful to be home!  Wonderful to be surrounded by loved ones and to have some semblance of normal.  Mason wants upright and the only way that works at the moment is for me to hold him while I'm standing up.  He's really heavy with the cast!  The only other challenge right now is to work out ways to keep Mason safe.  At this point I have to be right beside him at all times.  If I need to leave the room one of the older 3 children have to sit right beside him.  He's already figured out how to roll over, to crawl (which we're discouraging for a few more days at least while the hip closes up some), and he's not figured out how to judge distance when he's rolling to ensure he won't fall off the couch.  We can put him on the floor (wood floors) but then we're still dealing with the sitting up/crawling and we have more risk of Samuel climbing on Mason's hip/legs.    It seriously limits what can be done by me (cooking, settling sibling squabbles, checking on the walking 1 year old, cleaning, going to the bathroom...ahem).  Again, we've done this sort of watch before just a few months ago when Mason had his spinal cord detethering, so it can be done, we just need new routines worked out and it will take a few days.


Monday, August 4, 2014

What Tomorrow's Surgeries Are For, plus some cute everyday pictures

We're on the official countdown to Mason's 13th and 14th surgeries!  Tomorrow he will have both a heel cord release (tendon surgery) and a hip flexion abduction release (hip tendon surgery).  They are both on his right leg.  These surgeries are to correct the contractures that came about when his spinal cord was tethered and became symptomatic.  You can see some pictures from last March showing the Mason's hip and foot and the inability to straighten them into a flat or neutral position.  They look pretty much the same today on the right (the left foot got better after his spinal cord detethering surgery in March). 

I've been asked why we are pursuing these surgeries if Mason cannot bear weight on his legs and will never walk.  It's a great question!  There are several reasons but the short version is this:
  • For the foot:  Right now Mason cannot wear shoes because his foot is pointed like a ballerina.  Shoes aren't essential, though they are helpful in colder weather and for protection when he is crawling on rough surfaces.  However he also cannot wear his HKAFOs, the belly to foot length braces that enable him to stand upright and use his stander.  More on that next.
  • For the hip:  Mason is having some difficulty with climbing up the stairs, into his wheelchair from the floor, and transferring from the wheelchair to other places because his right leg won't straighten and isn't flexible in certain directions.  It also affects his balance and the way he sits, which can cause pressure sores.  Finally it prevents him from fitting his HKAFOs mentioned above.  The HKAFOs make it possible for Mason to use a stander with wheels similar to his wheelchair.  He has mobility at a different height, which is good developmentally, but more important standing applies pressure to his leg bones and strengthens them.  Without standing his bones become less dense, more brittle and prone to fractures or breaks. 
Life has been moving along pretty much as normal while we've been waiting, so I thought I would share some pictures with you of some fun or funny things Mason does.  Enjoy!

This is something Mason has been doing more.  His hip stretches easily one direction, as you can see, but tendons for stretching the other direction are the ones we're having surgery on tomorrow.  He laughs when he does this. 

While Mason is having more difficulty climbing because his stiff hip is in the way, he still finds a way to get where he wants to, including on top of things like this tub. 

Mason and Mommy are also starting to spend some time like this.  I'm wearing him in my Ergo Baby Carrier.  Why?  A few reasons, really.  First, it's great exercise for Mommy and I can always use that.

Second, we would like to do some outdoor adventures that are not wheelchair accessible in parts or the entire way (hiking, some caverns, etc).  To make that possible I need to be able to carry Mason long distances.  We're not there yet, but we're getting stronger together.

I hope to update here once we're home from the hospital in a few days.  It's finally time!