Wednesday, February 3, 2016

Will we or won't we?

Yesterday Mason had the first appointment in the process of creating his night time sleeping brace for his scoliosis.  The first step is simply making a cast of his body from under the shoulders to his hips. This picture is right before they start wrapping him in a cast.  They wrapped him in cast material and while it was still flexible they pushed on his shoulder and hip to correct the curve of his spine.  He stayed in that position while the cast material hardened.  Then they cut off the cast.  It will be used to make a mold of Mason's body and to create the custom brace.  In a few weeks we'll go back for a fitting.

While we were there Mason got to see a brace like the one he'll be getting.  It looks okay but I don't know that he'll be able to sit up in it and climb out of his bed each morning when he wakes up.  I'm not even sure he'll be able to roll over in it.  We shall see.

Yesterday morning I also called our neurosurgeon's office to see what Dr. G's plan was now that the urodynamics (bladder study) was finished.  The nurse practitioner called me yesterday afternoon to chat about the symptoms we are seeing.  She promised to call me after she went over all of it with Dr. G, but that since there had been no bladder changes she wouldn't be surprised if we were done for now and would not pursue any more testing until the bladder begins to show changes.

She called me back at 9:30pm.  Dr. G wants to examine Mason before the scheduled foot surgery a week from this Friday.  His reasoning makes sense.  If the foot contracture Mason is having surgery to correct is being caused by a tethered spinal cord (instead of just randomly happening) then doing the foot surgery before doing a tethered cord release means the surgery will be wasted.  His foot will simply re-contract and need a repeat of the surgery because the underlying cause (tethered cord) had not been addressed. 

Dr. G's office will call today to schedule that exam.  There are two main possibilities that will come out of that exam.
  1. He will clear Mason to go ahead and have foot surgery if he feels that Mason does not need a tethered cord surgery yet.
  2. He will cancel Mason's foot surgery and schedule a sedated MRI of Mason's brain and spine instead.  This would be the final imaging done before scheduling a spinal cord detethering.  The foot surgery would get bumped to a later month after a detethering was complete. 
  3. Or after cancelling the foot surgery and doing the MRI the imaging could come back and the neurosurgeon could decide to wait and we would reschedule the foot surgery - but this is the least likely.
As always, things are never certain around here.  That is probably one of the most challenging parts of having a child with complex medical needs!  It takes a team of doctors to decide what is going on and what needs treated first, second, and third, as well as how to treat each issue without impacting other issues negatively.

In other news, Mason had his first appointment with his physical therapist on Monday.  We went over the issues Mason is dealing with and our goals, gave him a good workout, and will go back weekly for the foreseeable future.

Friday, January 29, 2016

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.

Sunday, January 24, 2016

Mason Updates: Surgeries Scheduled

While we don't have all the answers yet to issues Mason is facing we do have some updates so I thought I would share in this very quick post!
  • He is scheduled for foot surgery just before Valentine's Day.  Basically, his right foot tendons have tightened up again and so his foot points similar to a ballerina dancer.  Mason had this surgery done once before (along with a hip tendon release).  This time our orthopedic surgeon will be more aggressive in how much he cuts the tendons.
  • Mason will have his double eye surgery not quite a month later. 
  • He has his evaluation to make a plan with a physical therapist in a week. 
  • For Mason's scoliosis we're having a custom brace made that his orthopedic surgeon wants him to sleep in at night.  This will not 'fix' the scoliosis and reverse it.  The goal with the bracing is to slow the progression of his curvature.   
  • We also are investigating the possibility of a tethered spinal cord - first test is this Thursday: Urodynamics.  Often one early symptom of tethered cord issues is seen as changes to the bladder's function.
So there you go!  Life is moving swiftly and we are going to roll with it. 

Sunday, January 17, 2016

2016 isn't Going to Be Boring - Drat!

Sometimes I daydream of nice, boring years with no medical hoopla.  2016 is NOT going to be boring unfortunately.  We had Myelo clinic on Friday and saw a lot of Mason's specialists.  We ended the day with renal ultrasound (to check kidneys and bladder) and spinal x-rays (to check the curvature of Mason's spine).

Many things are going well. His shunt is working fine, he's learning fine, and from what I can tell reading the kidney/bladder ultrasound those are ok too (we will hear from the doctor this week if anything is wrong).
Several things are not ideal.

1. Mason does need surgery on his foot. Again. They are scheduling a ways out (couple of months). This surgery will be more aggressive, cutting clear to the bone on his heel tendon area. When surgery happens Mason will be in a short leg cast for 6 weeks. Hopefully this time around he won't break any bones because of it but it is possible because he still has osteoporosis.

2. Mason needs physical therapy to work on core strength.
We expected this because we have been seeing some balance related issues that are keeping him from being able to learn skills like putting on and taking off a shirt or coat.  Mason can't sit and balance and do those things that involve moving his upper body around dynamically. Even drinking from a cup is difficult if he's not in a seat with a back or his wheelchair because he'll tip the cup up, lean his head back, and fall over. After a few months of PT we'll see how he is doing and consider adding in occupational therapy to help him with those fine motor tasks if he needs guidance breaking tasks down into a sequence while also keeping his balance. We'll start PT in February. I'm guessing once a week, with daily practice at home. I've also already gotten some ideas from occupational therapy to begin doing at home on our own while he gets a few months of physical therapy in.

3. Mason has his double eye surgery to do,
which I mentioned in my last post. This will probably be the first surgery to happen.

4. His scoliosis is worse, which is probably contributing to the balance issues.
I've not spoken with the orthopedic surgeon about this yet (who is doing his foot surgery) because we didn't get the x-ray until the end of our day of appointments. The surgeon's office should call us this week to talk about the x-rays and where we go from here. However I've read the test results and Mason went from a curvature below 10 degrees (not scoliosis) to one around 27 degrees in just 6 months. Treatments vary (bracing (probably where he would start because his curve is below 50 degrees), surgery to put rods in spine or to fuse vertebrae, or more). So possible surgery on the horizon here.

Unfortunately the scoliosis could also be a symptom of tethered spinal cord so we need to talk with neurology in conjunction with ortho.  When you look at all 3 symptoms together (right foot contracture, balance degeneration which could be nerve damage, and a quickly increasing scoliosis) it points to Mason's spinal cord being tethered again.  This is bad.  We need a doctor to order a sedated MRI to check things and we need a doctor who will listen to the whole picture, not just brush us off. One reason doctors sometimes brush you off with this issue is ALL people with Spina Bifida who had a back closure surgery have a tethered spinal cord.  Basically, the spinal cord gets stuck in the scar tissue.  So that is going to show on the MRI.  The real issue is that a neurosurgeon has to weigh the issues you are seeing physically and decide if all of them together mean the tethered spinal cord is being pulled tight and causing those issues or if the issues are unrelated. They are cautious because it is a major surgery (which we've done once before!) that risks causing more damage to Mason's nerves. We'll just have to see where this goes.

So there you have it, a perfect example of what we mean when we say Mason is medically complicated. He's precious and funny and worth every bit of the craziness. It is certainly never boring around here.

We know none of this is a surprise to God.  He knows what needs done, what is going to happen, and we're praying that He'll help us through it as we go.

Friday, January 8, 2016

Mason's Eyes...

In the last month we have noticed Mason's left eye turning in even with his glasses.  We went today for an early exam with his developmental opthomologist to get things checked out.  It turns out Mom is always right. Yes, the eye is turning in more at all levels (looking far away, medium distance, and close up) and the other eye is beginning to. The issue is muscle control - his is deteriorating.  The glasses he wears can't fix that. Right now we have two options:
  1. Wait 4 months and check again, see if it stabilizes or continues to deteriorate. It is not affecting his vision quality yet, meaning that when he does manage to control the muscles he can see fine. But if it deteriorates more it will begin to affect his vision quality too.
  2. Eye surgery on BOTH eyes. There are 6 muscles controlling your eye and he would have surgery on one muscle for each eye. It is an outpatient procedure and as far as surgeries go is a relatively easy recovery. School age kids typically go back to school the day after surgery. Eye drops for a week during recovery. That's it. It would improve control so that the glasses would work, possibly eliminating the need for bifocals, but probably not, he would still need basic glasses for sure. About 30% of kids go on to need a repeat of the surgery later on years down the road.  The risk from this surgery, which they always have to tell you, is if he gets an infection it could cause permanent blindness.
Our plan is to wait a week or two until we've seen all Mason's other specialists (Myelo clinic is next Friday)and scheduled any surgeries from those doctors.  We expect at least one surgery with the orthopedic surgeon to be planned.  Then we will schedule the double eye surgery around that. 

We are not surprised by this news.  We knew we were running out of options for Mason's eyes.
2015 was a surgery free year for Mason. 2016 ... not so much. If we end up with one with ortho and this one with opthomology he'll be at 16+ surgeries.

Saturday, December 26, 2015

Merry Christmas and Updates

The year is nearly over.  We have been enjoying lots of family time during the Christmas season.  This is a picture we took of the kids Christmas morning. 

One fun memory of Mason I want to record here:  This year he has been adamant that we bake a cake to celebrate Jesus' birthday (Christmas).  Even better, he is sure that Jesus loves chocolate cake the best - so that is what we needed to make.  It was delicious and Mason loved helping to mix the ingredients.

Mason continues to have a few concerning issues and we have appointments coming up for those (vision/eyes, foot contracture) as well as checkups with his entire team of specialists all in the next few weeks.  Developmentally, however, he's doing fantastic.  We are getting ready to celebrate his birthday and I'm not quite sure how he's about to turn 4 years old!  He is articulate, opinionated, and funny.

The most recent medical happening was last Monday when he had his next IV infusion for his osteoporosis. He does really well with the medication, which we are grateful for.  It did take 4 attempts before they were able to get an IV started, which stinks.  His veins are just not great, no matter how hydrated he is.  We always make IV attempts in his feet first so that he doesn't feel it.

I'll update again soon!

Wednesday, December 2, 2015

Mason is a Big Brother Again!

Three days after my last post Mason became a big brother again.  I gave birth to Tobias Keegan after 10.5 hours of labor (my shortest!) and he weighed 9 lbs 5 oz (my biggest!).  We have been settling in as a family ever since.

Mason is a great big brother.  He loves holding Tobias, talking to him, and giving him kisses. 

Tobias is a sweet, easy-going baby. 

My recovery has been steady, with no surprises.  I'm mother to nine precious children of God - I'm blessed!