Friday, September 26, 2014

God is Good all the Time!

What an amazing and crazy day Mason had today!  The last time I updated this blog was 10 days ago and Mason had just had a cast replaced on his right leg (broken tibia).  If you remember, his left leg is also broken and in a cast (broken femur).  Yesterday we realized that the green cast on the broken tibia had slipped again and needed replaced.  We also saw unsettling changes to Mason's left thigh above the orange cast.  It was hard and large, not swollen and hot, but not normal.  In my heart I wondered if we were facing a second break in the femur higher up on the thigh.  We woke up this morning and the toes of that side were also beginning to swell.  We called the orthopedic surgeon's office to get Mason an appointment.

The nurse practitioner who has been integral through this casting and recasting process was not working in the office today, she was at the hospital for clinic.  She chose to come to the office after clinic just to work with us to find out what is going on with Mason.  I was so glad - total blessing from God to have the people who know your medically complicated child well and are willing to come in extra hours just for him. 

We arrived and she confirmed my worry, that Mason had broken the femur in a second spot.  We removed the orange cast and took x-rays.  The leg is swollen and hard under the skin over a large area of the thigh.  We were all thinking Mason was headed for a spica cast (which goes up to your chest and is a total nightmare).  The NP looked at the x-ray.  She wondered if she was seeing things so much that she called our surgeon away from surgery to look at the x-rays. 

What did she see?  Mason's body had formed a callus around the break, a good and normal thing. His body took it one step further and formed a huge callus around a large portion of Mason's thigh bone.  The leg is swollen and hard because this callus is so big and didn't fit under the cast well.  The callus is so extensive and the healing has been so swift that Mason no longer needs a cast for his broken femur!  God is amazing!

The next step was to remove the slipping green cast and x-ray to check on the broken tibia.  When the cast came off we found that leg, too, is swollen around the break and hard.  You can see where I'm going with this, right?  That leg formed a thick callus and is healing well.  So well that Mason is finished with casts!  God encouraged his body not only to heal, but to heal in a way that was extra strong and thick over the breaks.  I was amazed and in tears. The nurse practitioner and surgeon were amazed.  Mason took it all in stride.  ;) 

Now we have some new appointments to make for Mason's first pair of AFOs, bone density testing, and refitting or new HKAFOs.  And what does Mason want to do now?  "Swing in my swing and take a bath." 

I would not have chosen this crazy process of two broken legs when Mason was healing from hip and heel tendon surgeries.  However God used it to let us know Mason's leg bones are brittle and need some help.  He's drawn us closer to him, met us in our nights of tears and worry, and given us peace in the uncertain process.  God is good all the time!

Monday, September 15, 2014

The Highlight of the Day....

Life is wonderful, according to Mason, because today he got to meet a service dog, and because he got a green cast.  Yeah, I thought I might try to slip that past you.  The cast on his right leg (broken tibia) slipped over the weekend.  We went in today to get things fixed.  First up they decided to x-ray both legs to see where they were inside the casts. 

While we were waiting for the x-rays to be looked at Mason was in the hall exploring with his wheelchair.  A teen girl with a pink wheelchair and large service dog came out of a room with her mother.  Mason was so excited to see the dog - and a bit overwhelmed by it too.  We visited for a minute.  It was wonderful to see a service dog.  It is one of the possibilities we have down the road for Mason. 

After visiting the doctor pulled us in to see the x-rays.  The x-ray showed the left leg (broken femur) still looks to be well placed within the cast, so no change for it.  The other was obviously out of position so it was changed.  Mason chose green for his cast this time.  It was a LONG appointment that ended up taking 5 hours from the time we left home to the time we returned. 

Anyone want to guess how long until our next cast needs changed?  I'll love you forever if you all guess October 6th, because that is 21 days away and the scheduled appointment. I don't want to keep going back in every 3-5 days between now and then!

Wednesday, September 10, 2014

The Saga is now and Epic Saga...

Well, notice anything? That's right, Mason is sporting not one, but TWO long leg casts. He needed the cast on the right leg redone because it was slipping off so we headed in to the surgeon today.  Yes we were just there to place the cast on Monday. 
We have had concerns the last day about Mason's left leg, which has suddenly started to swell, so we got to talk with the surgeon about that too.  Mason got the left leg x-rayed, which was already done two days ago. It was fine then. Now Mason has a broken femur, the long bone above the knee. Two broken legs. The surgeon says that after these heal we will be doing bone density scans to see what is going on with Mason's bones and come up with a plan to help them.

Mason is back to not being allowed to crawl around. Only sitting, laying, and wheeling around. The less movement the better. He's not impressed with that idea.
Here's my question - has anyone developed a bubble to put this little man in so he stops breaking bones?  :)

Monday, September 8, 2014

The Saga Continues .... Again.....

You wouldn't think after just a few days that I would have a lot more news about Mason, right?  Well Mason managed to spend 15 hours at the doctors and the emergency room in the last 3 days.  Did you notice he's now in a long orange cast again instead of the short purple one?  Let me tell you the story.  It is a crazy one in true medically complicated style!

Saturday evening Mason's leg just above the short cast became swollen, very swollen.  Mommy and Mason headed to the ER to have the purple cast removed.  After a long, drawn out visit the doctor in the ER decided Mason just needed to wear a short splint for the next week and we could forgo another cast.  We were told the swelling should begin to go down and if it did not, to come back to the ER or go in to see the orthopedic surgeon if it was during the workweek.  They did not check anything, they just sent us home.  When we got home I removed the splint (which was on to keep his heel stretched out in the final week of post-surgery recovery) and left it off all night to help the swelling go down.  The plan was to put it back on in the morning.

Sunday morning found Mason's entire lower leg was now swollen and hot to the touch.  The knee area was not better at all either.  We headed back in to the emergency room.  The ER doctor and orthopedic resident there were not convinced something was wrong but agreed to do an x-ray and possibly run labs to check for infection. 

A while passed after Mason's x-ray before the doctor and resident returned.  The x-ray looked fine to them and Mason was just going to be sent home to let the swelling go down.  I refused and insisted that they get someone qualified to read the x-rays because the swelling was NOT normal.  They disappeared, grudgingly seeking a second opinion.  More time passed.

Finally, a less than sure of himself doctor and resident returned to tell me I was right.  They had not noticed the broken tibia the first time they looked at the x-rays, but having a broken leg did explain the swelling.  There was also something they didn't quite know how to explain on his femur.  They did blood work to check for infection and put Mason in a long leg splint with the suggestion that we contact his orthopedic surgeon the next day for a cast. 

That brings us to today, Monday.  Mason and I headed in to see Dr. K this morning.  Dr. K examined the x-rays, took comparison x-rays of the other leg, and came in to chat.  Yes, Mason broke the growth plate on his tibia.  He also apparently broke his femur at some point in the past (thigh bone) but it has healed on its own!  This has been one of my biggest worries related to Mason - that he would hurt himself and not be able to tell because he can't feel it. 

Because Mason is non-weight bearing, he cannot stand or walk, his leg bones are more brittle than they should be.  They can be broken easily.  They think the tibia brake, which is along the line of where the purple short cast ended, happened when he hit or bumped the cast just right some time when playing on Saturday.  They have no idea when he broke his femur but it has healed well. 

The treatment plan for the broken tibia is a long leg cast for at least the next 4 weeks. When we come back in they will do an x-ray to see how it is healing and hopefully we will be done with the cast then.  We will just have to wait and see.  One fun thing today is that Mommy got to glove up and help cast Mason's leg.  He thought it was the greatest thing and really all I had to do was hold his leg and foot in position.

This highlights one of the reasons we did Mason's last surgery (foot and hip).  We needed to do those so he can get leg bracing again to use in his stander.  Standing with the bracing will be the only way Mason can bear weight on his legs.  He needs to bear weight to strengthen his leg bones so he can hopefully avoid easily broken bones.  Medically complicated certainly describes Mason!

He is feeling just fine.  He cannot feel the broken leg at all.  He was happy to get to choose a new cast color.  I'm praying it is the last one!

Wednesday, September 3, 2014

Of Cast Changes and Merman Goodbyes

Today Mason and I went back to the orthopedic surgeon to have the cast placed yesterday removed and redone.  Our surgeon agreed, the cast the other doctor placed was not the right way to handle it and would ultimately cause more harm.  He wanted the green cast off right away.

The wonderful news is that Mason's hip is healing extremely well and so Dr. K decided we can do daily stretches to the hip instead of a long leg cast and merman wrap.  Mason only has a short cast now for the last two weeks of healing on the heel tendons and NO more wrapping up like a merman!  This will also help the other leg's skin recover from the damage of the soft cast. 

Mason is beyond thrilled to be so mobile again! He chose a dark purple for this cast.  And Mommy has learned an important lesson:  Always have doctors that are not Mason's regular doctors check in with the real doctor before making any changes if they won't listen to Mom.  ;)

Tuesday, September 2, 2014

Cast Issues when You See a Different Doctor

The fun never ends around here.  Today Mason went in to get his cast changed because his leg was slipping out of the orange cast after 4 weeks.  Unfortunately his surgeon was doing his job - performing surgeries - so we had to see one of the other doctors in the practice today.  It was a bad idea.  Let me back up and share updates as we go. 

First, here is a picture I got of Mason with the hard orange and soft brown casts off!  Those sweet little legs look so tiny and thin.  The skin on the right leg (hard cast) is showing some wear but no pressure sores yet.  The skin on the left leg (soft cast) is breaking down in two large areas. 

The saga began when the doctor we came to see called a second doctor in because she's not one who usually works with the Spina Bifida patients.  Neither was the other young doctor.  They decided to cast Mason with a bent/angled knee to keep the cast from slipping off.  I objected, explaining that Dr. K had not casted Mason that way originally (which they knew because they took off the orange cast).  The decided they knew better than Momma. 

Then instead of wrapping his left leg with cotton and a ace bandage to keep it on they did a loose stocking layer, then the cotton, then a loose stocking.  They don't want to aggravate the skin that is breaking down.  However, in the 3 hours we've been home Mason has had that white soft sock cast slide off 3 times, basically every time he moves.  Which means the skin is being rubbed by the stocking as is slides off and is slid back on, and it rubs against the green cast if we don't catch the slip right away (difficult to do because it is all under the merman ace bandage wrap).  This doctor's plan was for Momma to remove the cotton sock creation daily to check the skin.

We've found multiple issues with the hard green cast setup too (two I warned the doctor about before we even left, one I didn't forsee). 
  1. First issue, Mason hip is not in a straight position when lying down on his back.  This is bad for the hip surgery healing.  It needs to spend a large portion of time stretched out straight each day and all night.  The doctor we saw said we should put Mason on a bed with his legs hanging off at the knee so they would go down enough to let his hip stretch straight.
  2. Second issue, when lying on his belly the cast is too heavy and the knee acts as a pivot.  As the foot tips toward the ground due to weight the hip is flexed.  Mason can't straighten it because he lacks the muscle use to do so.  Again, this is bad for recovery.  The doctor's solution - a thick roll of towels under his ankles to keep the legs up in the air enough to stretch the hip straight.  While that is possible to do, the moment Mason stretches forward, sideways, or crawls away he loses the towel and the hip is flexed.  And if you know Mason you know he is rarely still. 
  3. Third issue was totally unexpected but is one of the most worrisome in some ways.  When Mason sits up on just about any surface (which he is allowed for part of the day) the cast angle prevents him from sitting evenly on his bottom.  Instead he is tilted back on the area of his butt that was split open for months and had two surgeries as attempted closures.  We don't want that torn back open and 2 weeks of pressure would do it. 
Ahh, the craziness!  The plan at the moment is to call and get Mason's actual surgeon or surgeon's nurse practitioner tomorrow morning.  I'll leave a message explaining what was done and the problems, explaining that I want him recasted with a straight cast the way he was originally, then wait for them to call.  They'll schedule that, hopefully quickly! I am pretty sure his surgeon will be unhappy to leave him in this angled green cast because the area he was most worried about healing (the whole reason for the merman getup) is the hip, and the cast is directly affecting the hip pretty much all the time. 

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!