"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...

Back to School...Again!

It's hard to believe that the summer is over and school has started once again.  Last week Conor and Garrett went back to school.  They had a great first week!

2nd Grade & Fourth Grade

A new pose!

The boys typically ride the bus to school, but I took them on the first day.  We went with Garrett into his class, and Caris was pulling on Garrett's arm asking him to come home.  She isn't going to know what to do without her two big brothers at home!  (True confession - I took these pictures after school, the morning was too hectic)

So, Caris, Toby and I met up with a friend (Janae) at the park:

Toby's arm is fine, by the way, it's his new thing - he likes to wrap his arm in ace bandages.

Today was Toby's turn to start school.  He's attending preschool for another year.  It was a tough decision, and sometimes it's hard to see all the other kids his age going to kindergarten this year.  We felt like it was the best choice for him, especially because of the rough start he had to life.  Sometimes, I compare it to being a preemie - he didn't start to actually move around and explore the house until age 20 months, babble and say words until age 2 years old, so developmentally he's behind, even though he'll be six in December.  I also know that in the next year we are facing another large surgery and possibly two - if his scoliosis is as severe as I think it is, he's going to need a major back surgery also.  So, it's off to preschool again.  I did shed a few tears, realizing how much he has grown, changed and learned since we put him on that bus two years ago for his first year of preschool!

He looks like such a baby on the left, doesn't he?

It's been a good week of school starting again...and even time for some silliness:

A Family Adventure

It's been a VERY LONG time since I've posted an update (so long)...but as a new school year has begun today, it's time to start blogging again.  You've noticed it's updated (new background/fonts/etc.)  I've also added a new tab at the top that will be updates related to Toby and his medical condition, etc.  

So, here goes:

This year we decided to go on a family adventure and go....(drum roll please)....

CAMPING

This was Toby and Caris' first camping trip.

To give a bit of background -  I grew up camping - all over northern Michigan and the U.P. (Upper Peninsula - for you non-Michiganders).  I have many family memories going to Mackinaw City, Mackinaw Island, Burt Lake, Cheboygan, Petoskey, Copper Harbor, Tahquemenon Falls, etc. (all places in Michigan!)   I enjoy camping - I don't enjoy the dirt so much, but I love being outdoors and the memories it creates for our kids.  Our campground usually has lots of trees, showers, and decent (not always clean) bathrooms

Bruce and I tent/cabin camped with Conor and Garrett when they were little, but after Toby was born and he came home with all of his medical equipment - AND a trach (i.e. no WATER immersion) I never thought we would ever be able to camp again.  This year we did it!

Bruce and I jokingly said we couldn't call it a family vacation, but more of a family trip or family adventure because it was going to require a lot of work and letting go of the whole dirt thing for this Type A - Clean Freak!

Most years my family (think parents, sisters, brother-in-laws, niece, nephew and extended family like grandparents, second cousins, aunts, uncles) camp in northern Michigan, and this year we joined them.  

We rented an RV, which was delivered to the campground, and made an adventure out of it.  Here are the top ten reasons we enjoyed camping this week:

Reason #10 - Hiking in the woods

Reason #9: Visiting MaMa Mia's in Mackinaw City and the Mackinaw Bridge Museum - a family tradition since I was a kid!  I didn't take a photo, but also buying eating good old fashioned Mackinaw Island Fudge!

Reason #8: The gorgeous sunsets

Reason #7: Making sand castles with Uncle Anthony, enjoying the beach and warm water

Reason #6: Watching Caris get dirty in the mornings - just seconds after putting clean clothing on her.

Reason #5: Watching Toby dance with Grandma 

Reason #4: Playing Miniature Golf and getting a hole in one!

Reason #3: Watching the Mackinaw Bridge light up and driving over it to the price of $8.00 just to have the thrill!

Reason #2: Having campfires and delicious hot smoes (s'mores)

Reason #1 - Spending time with my wonderful family!

I won't deny that it was A LOT of work - especially with Toby - all of his care (trach, vent, cathing, bathing, bowel program - lots of work).  BUT, it was fun!!  I'm sure we will do it again in the future - a few years down the road!

Perspective

As I sit in the PICU with Toby (he's sleeping), I figured there was no time like the present to update the blog.  If you read the blog I'm sure you probably know what's happening with Toby, but if not here's his caringbridge site
Last night I was a mess - literally felt like crawling out of my skin.  We had an excellent ER experience - it was long, but there wasn't ever a moment that something wasn't happening.  Then, we ended up in surgery and the ICU - this is not where I planned on spending my weekend.  The last time we were here for an extended stay - Toby was a baby and it lasted 30 days.  I forgot how much this place feels like the black hole - we are in one of the adjoining rooms separated by a curtain - where the screaming child next to us woke up Toby as he was trying to sleep.  It's days like this that I wonder how we made it 30 days - 12 hours and I'm ready to bolt!
It's November, though, and I'm trying to be thankful for the little things.  A friend wrote me that she was dealing with a skunk spraying her dog and then she opens up FB to find that Toby's just had major surgery - put it in to perspective for her.  (I don't think I could deal with that either - I would be struggling with skunk!!).  But, I am also learning perspective:
*Another family waited in in the surgery OR for their little boy - 3 years old - having surgery to repair blood flow to one working kidney, the other had been removed - Perspective!
*There is so much sadness here in the ICU - so many kids critical, sedated, not moving - at least my kid can talk and ask for water and food...even though it's EVERY 2 seconds - literally - that is NOT an exaggeration - Perspective!
*I am continually reminded that sometimes I don't like my life, but others would trade theirs for mine in a heartbeat (the picture of the starving African child's hand inside the American one) - Perspective!
*We live in America - a country whose doctors still embrace trachs/ventilators as ways to save kids' lives and give then normalcy - others don't - Perspective!
*My child isn't dying of cancer, going through chemo - painful as his surgery might be - Perspective!

I put my list of thankfulness on facebook today.  "In every thing give thanks for this is the will of God in Christ Jesus, concerning you."  It doesn't say that I have to give thanks for the surgery or the hardships - although some times I do. But in the middle of the situation to give thanks - to find the little things to be thankful for, and when you stop and look around there are MANY!   When I lament the fact that my son suffers so much and question why he should, God gently reminds me that His son Jesus suffered in ways I can't comprehend: a crown of thorns, beaten 39 times so that his body was beyond recognition that He was even a man - for no fault of his own.  My brain is so wired that things must be just and fair that I can't wrap my brain around that, except to believe as scripture says that it was because of God's great love for us - so we could have salvation through Him.  That's amazing love - for a God to love us that much - a person that has sinned and many times turned my back on Him - He still gave His only son for my salvation and desires to have a personal relationship with me...How's that for perspective?  I can suffer through this - as hard as it seems - "a light and momentary trouble that will be overcome when we get to heaven."  Our time on earth is just a tiny drop in the bucket compared to how long eternity will last - and we have the choice now to decide where to spend it.  If even one person comes to know Christ as a result of our testimony - it's all worth it..and that's the perspective I'm trying to have!

Unexpected Friends

Last month I entered Real Simple's Simply Stated Blogger Contest.  They wanted a 300 word blog answering the question "Who Are You Most Surprised to be Friends With?"  Well, needless to say I didn't make the top 10, but now that leaves me open to share this on my own blog.  To my friends and family that do not have children with special needs and have been there for us through all the ups and downs with Toby - this blog does NOT mean I treasure your friendship any less - I love you too!  I treasure all of you, but this was what I wrote for the blog contest!!

When I was expecting our third child, one thing I did not expect was a change in my circle of friends.  At twenty-one weeks we learned he had the most severe form of Spina Bifida and Hydrocephalus.  Several weeks later a college friend contacted me explaining that she knew another mom with a child with the same disability and thought it would be good for us to connect.  At first, I was appalled and in denial; I didn’t need this mom’s support.  I didn’t want to be grouped in with “those moms”.               

At thirty-eight weeks, our precious Toby was born and because of complications he spent several months in the hospital.  At three months old he came home with a tracheotomy tube, full-time ventilator support, a feeding tube, and private duty nursing in our home.  At this point I realized that I needed “those moms” because… I was one of them.   I joined support groups – online and locally.

                Now my circle of friends includes many mothers of children with special needs.  Whether it’s Jen in Fort Wayne, Cassie in Texas, or Erika in Columbus; they are my sisters walking with me in this journey.  A circle of friends, I did not want to join, but could not live without.  A desire of most people is to be understood, and these friends understand because they have walked in my flip-flops (as one friend so aptly put it!)  They are my cheering section celebrating Toby’s first walker and a shoulder to cry on when he’s still eating pureed food at age four.  They may have been unexpected friends, but unexpectedly their friendships are treasures of gold.

So - to all of my wonderful "friends" out there - some of you I have met in person, some of you I have not - we only talk through e-mail or the Spina Bifida FB group - sharing experiences, stories, advice, and support - this day is dedicated to you!

In Sickness and In Health

Today is Bruce and I's eleventh wedding anniversary.  It's also Bruce's birthday.  We did marry on his birthday and to answer the question everyone always asks, "No, it was not so he wouldn't forget our anniversary."  He doesn't forget things like that - truly he doesn't, it just ended up being the perfect date.  The day isn't exactly going as planned - Caris is sick with coughing and wheezing, and we took turns being up with her all night.  He did get to play golf this morning; we often have the fun discussion of how we will celebrate this fine day with "Well, it's my anniversary and well, it's my birthday!"  I had my whole morning planned to run errands - buy the perfect cards (no, I have NOT bought a birthday or an anniversary card yet - who wants to drag 4 kids into Hallmark!), get a cake, buy wrapping paper, and spend some time relaxing with the kids before our date tonight.  Instead I dragged Caris and myself out of bed at 6:45 a.m. to watch cartoons with a bucket in my lap hoping to catch her vomit (she's coughing so hard from the phlegm).

Little did I know that 11 years ago when we said our vows, "in sickness and in health" would pertain more to our kids than ourselves, at least at this point!.  Between Toby's special needs, twelve surgeries total between two of our kids, three in glasses, and recently Caris' upper respiratory issues (or asthma - they did put her on Pulmicort today), it certainly has tested our faith!  Through it all, I am thankful to God that I married my best friend and he is the only person I would want by my side through these mountains and valleys.  He keeps me sane when I'm panickingl, he has me laughing when I cry, and he's the love of my life.  I love the quote from a book in the At Home in Mitford series by Jan Karon - a character named Billy Watson is married to Rose, his schizophrenic wife, and the main character asks him why he's stuck with her all these years, he says something like, "I gave her my word, don't ya know."  We gave each other our word and that's that!

Jut a bit ago, Bruce tore apart the car seat that is filled with vomit from our ride home from Caris doctor's appointment.  We had enough time to squeeze in some present exchanging - complete with his present wrapped in a cardboard box and a brown paper sack with no card (that's the Fabian way!).  Then we cleaned out the car seat, he took a shower, and he's off again to see a movie with Conor and Garrett.  I am ready for a nap after only three hours of sleep.  At the risk of shedding a few tear over the day not turning out the way I planned, I'll relate what his anniversary card said because it sums up today perfectly:

"Real love takes more than flowers

and beautiful words

It means keeping promises,

holding on when it's difficult

and supporting each other 

And despite the passage of time and change,

your love remains

quietly in the midst of it all

forever alive and real

forever beautiful."

Happy Anniversary to my sweetheart - I love you with all my heart!