When the Unexpected is Expected.

Today Toby had his Myelo clinic appointment.  This is the day when we sit in a room for several hours (about 5 to be exact), and all of the doctors/therapists/specialists come through to discuss all the areas that are affected by Spina Bifida - Urology, Physical Medicine, Developmental Pediatrician, Neurosurgery, Orthopedic Surgery, Neuropsychologist, Occupational and Physical Therapist - not to mention our contact people for the companies that do adjustments on our wheelchairs and braces.

I went in today hopeful - not a lot of things to discuss in most areas.  A few questions about various things.  The biggest issue being Toby's back.  He has been wearing a night-time back bending brace for almost a year because of his severe scoliosis (early onset for kids with SB).  Over the past few months we've had issues with his brace leaving marks on his back - then we have to leave it off for a week or so, and try again.  We've had the brace adjusted once and it helped some.  I have been wondering if his back is getting worse.  About 1 1/2 years ago - the orthopedic surgeon and I had talked about the possibility of Toby needing titanium rods to straighten his back.  It's called VEPTR or vertical expandable prosthetic titanium rib. They attached from the ribs to the pelvic bones on both sides of the spine (out a little ways) and straighten the scoliosis.  They also have to be adjusted for growth - which is a surgery every 6 months until the child stops growing.

So, we saw most of the specialists today - got some more information about how Toby would need to have a motility study done before the MACE and Mitrofanoff surgery.  That was good to know, something we can talk to GI about.
Down to radiology for a back x-ray
Discussions with the nurse
Neuropsychologist stopped in
Adjustments to Toby's wheelchair
Developmental pediatrician

I went in to the day hopeful that his back had stayed the same - maybe it was just my imagination.  Maybe he's outgrown the brace and needs a new one.   Then orthopedic surgery comes in.  I saw it on his face -

Toby's back has a 55 degree curve - lying down...it's probably 80 or more sitting up. I remember Dr. K telling me before that once the scoliosis hits 50 degrees it starts to do permanent damage to the spine.  He needs surgery - soon...October.

Tears
Discussion
Questions
More questions

They want to do the surgery in October - trying to avoid major respiratory illness season.  Switching around other patients already on the surgery schedule.  It looks like the schedule is open the end of October - after the Columbus Marathon/Half-Marathon (sigh of relief).  At least Toby can be out there inspiring others in his Miracle Mile - Mile 7!

Have lots to do - clear the surgery with pulmonary, move up his MRI under GA of his brain and his spine to check cord tethering.  It's possible he needs it detethered before the rods are put in...can't stretch the spine out and still have it tethered down low - can cause problems.  Lots to consider.  Lots to pray about.

I knew it was coming - sort of expected it, but still held on to that hope that it was a year away.  I wonder if I knew it instinctively, which is why I put off scheduling the urology surgery.  It's still hard to hear the words when they actually come out of the mouth of the doctor...even when you are expecting the unexpected.  Grief hits hard - harder than I realize.  This is tough.  I don't like how the grief paralyzes me, don't feel like cooking dinner, playing with the kids, rotating seasonal clothing (I found those swim trunks and tank tops and realized the weather isn't going to get warm again - really should clean that stuff out).  Instead I want to cry, but need to hold it together.  We knew this was coming - just didn't expect it - the unexpected, yet it's expected (ironic).  I know God knew it was coming - it's no surprise to HIM.  I'm glad, glad He encompasses all time and knows the outcome in October. That He is with us every step of the way...but for now I'm going to go cry a little and grieve.  I have learned to do this, to adjust to the new normal.  Grief helps, but it's also hard.  I'll try to post more details later - especially as we begin to understand all the details.  Thanks for listening.

Comfort Zone

I really enjoy doing things that are within my comfort zone.  If I'm unsure about a situation, place, opportunity - it takes me awhile to get used to the idea before I will venture into new territory.  Some a lot of times I'll avoid it all together if I'm not comfortable enough.

Having Toby (and kids in general) has really grown me in this area.  Before Toby, I would NEVER be the first to approach a stranger or begin a conversation.  Post-Toby, I am more open to this, especially if their child is in a wheelchair, has a trach or a ventilator.  In fact I met a very good friend at the zoo when Toby and her daughter were babies - we connected because of our kids' trachs!

There are times that I'm at our local children's hospital by myself because of a meeting or other event (I volunteer on a few committees),  I'll see a child that reminds me of Toby, and I want to rush up to the family and introduce myself and hear their story.  I'll give them a special smile.  I'm sure they're thinking "wish this weird lady would stop looking at us and smiling!"  But, it's hard not to empathize because we get it, we understand.

On the flip side, it's also difficult to venture into any new situation with Toby.  It took me several months to warm up to the idea of flying on a plane with him when he was a full time ventilator patient a few years ago (ask Bruce - ha!).  Even attending our new small group tomorrow night has my stomach in a few knots.  Do they really want a wheelchair in their house? Considering a new location/event, we have to ask ourselves:

How would will we get Toby around?  Grass, mud, and sand are not a wheelchair's friend
Will Toby even be able to participate in any activities?
What about his food schedule?
Where in the world will we do our straight cathing?  (this is ALWAYS an issue)
What will the weather be like? (heat and rain are not friends of a trach)
Is there enough room for Toby's chair?  Will he beat up all the walls in a friends' home?
If we spend the night - what are the sleeping arrangements?

For these reasons and a bit because of sleeping space, we have never gone to visit my youngest sister and her family in Indiana (over 5 years!)...until Labor Day weekend.  A conversation with Conor birthed the idea, and after some hotel reservations and planning, we thought, "Why not...let's just do it?"  So, we did.

We had a lot of fun visiting Shauna, Jonathan, Addy, and Brenden.  The kids had a blast playing together, and Toby scooted around their house like a champ.  They have a small four-wheeled all terrain vehicle that we rode for hours and hours.  The kids loved it.  I really enjoyed time with my youngest sister - it's fun to have our kids grow up together!

Toby enjoyed his little buddy (even though Toby doesn't look too sure in this photo).  The favorite things of the weekend were of course the four-wheeler, Shauna's ipad, and Snappy (their cat).  We are not blessed to have pets at our house (I'm allergic to cats), so whenever we are at someone's house with pets - especially cats or dogs, the kids love them to death.  Snappy wasn't too sure about our kids, but after awhile he got used to their rowdy ways and enjoyed the attention.  Did I mention the kids really liked the four-wheeler?  We weren't on the road home, five minutes when the kids were asking if we could get one for our house.  Hmmm..sure our home owner's association would love that!

Don't you just love those smiles?

There are times when we just can't take Toby certain places, it's not practical or safe, or honestly it's just way too much work to get him there and all of his equipment.  (You should see how much we have to pack when we travel).  However, we have learned through the years that venturing out of our comfort zone usually reaps more benefits and enjoyment than the cost of time and energy it takes to get him there - and it's worth it to invest in our relationships and spend time with those we love.


 

Some Smells Are Worth A Thousand Memories

All it took was walking into the doctor's office and a short conversation with the receptionist to bring on the tears.

the sights...
the smells...
the memories...

I am an emotional mess and I can't even blame it on hormones.  Since we moved three years ago, I haven't been back to this particular ob/gyn office.  I typically go to the one closer to our house.  It's strange to face the memories of hearing the very first time there was something wrong with our baby.  It was August 31st - our "D-Day"!  The Defining Day when our lives changed forever.

A little while later I'm in one of the exam rooms talking about the family with the nurse practitioner.  I share my thoughts with her, she's sympathetic - it's just so strange to be back in the room where the doctor revealed the news, "there's something wrong with your baby."  The NP says that sometimes our senses remember before the mind does.

How interesting, how true.

I wonder why these memories hit me now?  Why can't I hold back the tears.  The ironic thing is that I did have a few appointments at this office when I was pregnant with Caris.  It's not like I hadn't been back there.  At 6 weeks, I had an ultrasound because of spotting.  It was something new, something I had never had with any of my other pregnancies, and because of Toby I was more on edge.  I remember waiting back in the ultrasound room,  The last time I had been in this room was while pregnant with Toby.  As I was waiting for the technician I turned and looked at a bulletin board of various ultrasound photos (no names) just pictures and dates.  I remember sitting there reading the captions declaring happy news:

"It's a girl!"
"It's a boy!"
"It's twins!"

I smile.

Then "Lemon-shaped head".  I slid off the table and walked over to look at the date on the ultrasound - August 31st - It was Toby's ultrasound photo.  The tears fell, the grief came back.

I'm not sure why it hit me this time.  (And no I'm not pregnant!)  I do know that certain smells take me back.  Who can forget the smell of the green hospital soap?  That will forever remind me of when Toby was in PICU.  It's good to look back and remember, it's good to grieve.  Most special needs parents will tell you that at various times in their children's lives they have been at one stage or another of the grieving process.  I'm still not sure why visiting the doctor's office this week brought back the tears -- August 31st was just a few weeks ago, and it was the day I spent around five hours on the phone regarding a possible cut in nursing hours, so I'm sure some of it is stress and remembering the day our lives literally changed forever.  In some ways I wish I could tell myself then what I know now - maybe the grief wouldn't have been as strong, but then again maybe I wouldn't have believed the blessing Toby would be - 6 years, and 13 surgeries later.  It's worth it - it's all worth it!

"Ditro from a "pan"!

(It's always fun and interesting to think of titles for these posts).  

Here goes with an update:
First of all - God is so incredibly good - He is faithful.  I received an e-mail later Tuesday night from our doctor.  Our insurance agreed to keep the hours at 16 through the end of December.  They are requesting some additional documentation from the agencies of when he's on the ventilator and how much he needs suctioned.  It makes me nervous because he's on the vent. less now than ever (with no naps now in the afternoon), but his suctioning actually has been more of late.  He had a cold a few weeks ago and ever since then he leaks copious amounts of secretions out of his trach.  Maybe it's the weather?  Who knows.  I am working on trying to get a contingency plan in place; we may have a few other options.  I'm also looking at how many hours can we manage with if it's less after the first of the year, so we're not blind-sided if they cut again and this time don't reinstate them.  We shall see.  For now I feel like I can breathe again...and I'm so thankful for all of your prayers.

Now to cover why we're talking about ditropan again.  Yesterday Toby had the full nine yards of bladder testing: (here is a recap of what each test does)

Renal ultrasound: ultrasound of his kidneys

VCUG: this is where they fill the bladder with a barium type substance in fluoroscopy and watch to see whether he has reflux up to the kidneys and what the bladder neck looks like (is it leaking or holding the urine in the bladder)
Urodynamics testing: this is where they hook up different electrical wires and also fill up the bladder with saline this time to see what the pressures in the bladder are.

Results:
Renal ultrasound: everything looks good.
VCUG: he doesn't have reflux.  They were especially looking for the leaking this time because he has had that significant change in his bladder in the last few months.  It used to be that he was dry mostly in between caths, and now he's not at all.  Our cath volumes are very low (75-100) compared to before (250-350).  Of course during the test, he didn't leak at all.  BUT, even though clinically he didn't show leakage, he is leaking.  On a good note - his bladder capacity is still excellent - it holds  A LOT.  

Surprise! - the radiologist also said that Toby has left his dysplasia meaning his hip is out of place.  This is common in kids with myelo, but no one has ever told me this.  Nice?  huh.  I don't think it changes anything - doubt they'll do surgery on it, but it's definitely something to ask about at Myelo Clinic in a few weeks.
Urodynamics: There was a distinct difference in the bladder pressures in Toby's bladder this time from being off the ditropan. It used to be that they would get high when he had about 250 ml in his bladder, now they got high around 120 ml, which means he definitely needs to be on the ditropan for now.  The higher pressures mean the bladder overworks and then the bladder wall thickens.  You want the bladder to be a smooth - not overworked muscle.

So, what does it all mean?

Toby is going back on the ditropan.  To be completely honest, I never really saw a difference off of it.  He still gets sweaty, his cheeks and legs still get blotchy when he overworks himself (which leads me to believe that this is completely tied to autonomic issues in his body from his Chiari II Malformation).
We also discussed in depth the MACE and Mitrofanoff surgeries. It appears he will not need a bladder augmentation - it's big enough and holds a lot of urine.  But, he will probably need the bladder neck tightened or even closed off so he won't still leak.  The point of the MACE and Monti for short is to be dry clean and independent.  Dr. J (whom I just love) - the urologist and I discussed at length the different between the cecostomy and the MACE to manage bowel continence.  He tends to like the cecostomy better, but is willing to do the MACE for Toby because that seems to be the way we are leaning.

I'm still a little bit on the fence between the MACE and cecostomy, but am so glad to have a doctor that is willing to work with us and make the best choice for Toby.  With each appointment and discussion I feel more at peace with the decision to move forward with this.  I also understand the differences better, the methods of how the different procedures are done (which I won't bore you with now).  Toby wants to be independent with cathing, he asks to cath himself, but sitting up in his wheelchair he can't see anything to do it himself.  This would allow for that.

So, when's surgery?   Not sure yet - because I need the orthopedic doctor to look at Toby's back.  I think his scoliosis is getting worse. When Toby sits on the floor his rib cage sticks out horribly - his spine is very curved.  I want to make sure he's not going to need rod surgery in the next 6 months-1 year before we choose to do the MACE and Monti.  We'll talk more about this at Myelo Clinic with the Ortho Surgeon.

Last, but not least - Toby is going to have another sedated MRI of his brain/spine, everything either in Sept. or beginning of October. We are still seeing his eye gaze issues, nystagmus, looking out of the corner to see things, etc.  The neurosurgeon wants to cover all basis (looking at syrinx, tethered cord, etc.) just to make sure the ETV is working, etc.

Whew - that is a lot of updates, but they are things that I've been processing for awhile, but haven't wanted to mention.  Figured it was time to talk about all these different aspects.

P.S. Bruce is the one that thought up the saying "ditro" from a pan...because when we have pancakes for breakfast - his saying is "cakes from a pan", so we have thought of all kinds of different words we can say that are "from a pan".  Just our humor in every day life! :)

Riding This Roller Coaster Again

We are riding the roller coaster of whether or not we will lose our nursing hours yet again.  Didn't we just go through this in March?

Friday morning I received a call from a new nurse case manager at our insurance leaving a message that effective tomorrow (Saturday 9/1/12) (this was about 14 hours later) our nursing hours would be cut from 16 a day down to 12 a day.

Oh the emotions started rolling, the panic, the fear and tears.  I realize that this just doesn't affect me, it also affects our nurses - they lose a patient to care for. How in the world are we going to divide up those hours between day and nights shifts?  How do I choose?
So, long story short, Bruce was able to get an extension of one week from insurance to allow us to appeal the decision yet again. We have a back-up with Toby's waiver, which should provide nursing care in the event that insurance doesn't, BUT...and here's the big BUT - we have to prove to the state that insurance denied coverage and all appeals have been exhausted.  Then, we have to wait for someone to make a decision of yay or nay.  If nay, then we can appeal to the state through a hearing.  If you're getting my drift - you are understanding that this is the biggest headache.  

Friday, I was so frustrated because I spent almost 5 hours total on the phone calling various parties involved trying to figure out what to do next.  It took so much time away from my kids (grrr...frustrating).  Did I mention that we went away for Labor Day weekend and I still had to pack for a family of 6, plus all of Toby's medical equipment and up until 3 p.m. on Friday - I hadn't packed a stitch of clothing.

What happens next? 

Bottom line - some time this week our doctor will hopefully get in touch with the medical director from insurance to do a peer to peer review.  This is step one for the appeal.  If insurance decides against then we appeal to the state.  In the meantime we have to abide by the 12 hours a day.  

Please pray for us - if this is God's will for us to have less hours, I'm trying to accept that, trusting that He has a plan.  When I think about the day to day, I have no idea how we will manage, but He is sufficient, so I choose to trust in Him and not insurance or the state.   Trying to trust, even though it's so hard...