Jan 22, 2014

That's "Mr. Ambassador" to you.

Look at what we just got in the mail.

That's right ... Manny is now the 2014 Florida GoodWill Ambassador for the MDA. 

What does this mean?
Well ... MDA is "Muscular Dystrophy Association".  They help people with Neuromuscular Disorders.  (You might want to read "Mighty Manny" if you're not sure what that means.)

For 2013, he was the honorary local Goodwill Ambassador and he was asked to represent the MDA at local events and such. 

Like last year, we had a walk at Raymond James Stadium.  When we were at the walk, I had never been so aware of my legs.  Someone asked why I walk and it hit me ... I walk because some people can't. 

Here's a picture of our team from last year's walk. 

Come join us on February 8, 2014 at Raymond James Stadium for this year's Muscle Walk.  You can walk along with Mr. Ambassador!

This is to raise funds and raise awareness. Did you know the funds raised in the local area stay in the local area? 

The funds raised from the walk are earmarked for various things like sending the local kids to the summer camp.  It's a week where kids can just be kids and they say, "it's the best week of their lives".  Manny isn't old enough to attend yet (age 6) but he has attended the sponsors/visitors day for the past two years.  It's a carnival like atmosphere and he just loves it.

Here's a picture from the 2013 camp.  Yes, I was very focused.  He couldn't stop laughing when they all fell down!

The visitor day happened to fall on his 4th birthday.  We couldn't think of a better way to celebrate his special day than with our friends.  When we drove up, he saw all the balloons and carnival booths and he thought the party was for him.  (No one had the heart to tell him otherwise.) 

Lowe's comes and supports the camp by helping the kids make floats for a parade.  They created a birthday cake float for Manny with 4 candles.  Have you ever seen a cuter cake?

Every year, Lowe's is also a huge supporter for the MDA.  They sell shamrocks in their local stores.  We visited our local Lowes and were shocked to find the word "MANNY" written in Shamrocks.  It seems they used him as an inspiration for the employees to remember to sell the shamrocks.  Click here to read more about the Lowe's Shamrock MDA Program

And remember how he got to go to a firestation this summer?  Well, firefighters and the MDA have a special relationship.  The IAFF (Firefighter's Association) is the MDA's biggest fundraiser.  They stand on street corners doing a boot drive collecting money.

Or locally, they put on a "Chili Blaze" where they have a huge blow out with vendors and bands and huge crowds.  All proceeds go to the MDA.  They collect tens of thousands of dollars each year.  So if you're local ... come out and see us on March 14.  Pinellas Park.
Chiliblaze for MDA

There was the fun night at the "Show of Strength" (Formerly the Telethon) premiere. 
We even were highlighted in the MDA Quest magazine. Quest Vol. 20, No. 1 (From January 1, 2013 - March 31, 2013).  An article was done about our family.  Imagine our surprise to find ourselves as the COVER.  You can go to this link to see more about the Quest magazine and links to their online issues. 


Here is a picture from the 2013 Holiday Party with Mr. and Mrs. Claus.   

Who knows what other cool events he will be asked to attend as the 2014 Florida GoodWill Ambassador. But he's always up for a fun day.  (And they usually ask me to say a few words since I don't mind speaking in public.)

But what has the MDA done for us personally?  The local team has helped us get wheelchairs and other equipment.  They have invited us to fun events and parties.  They have set us up with specialists, including some across the state when the ones locally ran out of ideas.  And they have become our friends. 

The MDA supports our whole family.  They recognize that while Manny is the only one in our family who has Muscular Dystrophy, our whole family is affected by it.  So they support the whole family. 

I'm thrilled and honored that Manny was selected to be the 2014 Florida GoodWill Ambassador.  We will do our best to represent the MDA well. 

Just for fun, I thought I'd show you a picture of Manny and Paula (with the MDA) on our very first walk in 2012.  He had just been diagnosed with Muscular Dystrophy and this was our first event.  We knew we were "home". 

Their slogan is "Make a Muscle, Make a Difference".  And we know Manny will continue to do just that.  He already has for so many.  Way to Go, Mighty Manny.  I mean, Mr. Ambassador. 

*Make sure to follow the links to learn more about these amazing organizations and events. 

Jan 21, 2014

Trifecta nightmare: Insurance, TPA and Line Ruptured.

Oh Manny … you certainly like to make life exciting don’t you? 


January 4 we get a call that our Medicaid for Manny is inactive.  That’s basically impossible since he has adoption Medicaid … it goes with him, regardless of money or income or anything else.  Pretty much no way to screw it up.  But it got screwed up.  And as I write this on January 16, it’s still not straightened out. 


So on Monday, Manny’s central line was flushing fluids in but wouldn’t give blood back. This is irrelevant unless it’s a Monday.  That’s the day a home health nurse comes and draws blood.  They determine the “recipe” for his TPN based on that.  Up on potassium, down on sodium or whatever. 


When there was no blood return, the nurse called the pharmacist and said as long as we get the blood by Wednesday we’d be good.  That gave me 2 days to get it working. 


I knew what he needed … TPA.  It’s a clot buster that goes in the line and eats the clot.  (They use it for stroke victims, for example.) But I can’t just go to the ER and get it done.  Or can I? I decided to wait it out.


Wednesday morning I woke up and tried one last time.  I knew if I didn’t get blood, I’d have to go to the ER.  But guess what?  I got blood.  I called his lab nurse and told her she’d have to come quick and get the blood. 


Pretty soon, she was at our house.  Sure enough, she was able to get 3 mls of blood (almost enough for the “waste”).  But then it just stopped.  We thought that if we flushed it, maybe it would start going again.  But as she flushed … ever so gently … the line ruptured. 


Then there’s the mad dash to get a hemostat on the line.  This prevents blood from getting out our air from getting in.  It also helps reduce the likelihood of infection getting in. 


Manny was a bit scared and he knew this meant a trip to the hospital.  He immediately started saying he didn’t want a “Pinch” (his word for an IV). 

The kids and I were still in Pjs so they rushed quickly getting dressed.  Sam called my mom to see if I could drop them off on the way over.  The nurse played with Manny while I got dressed and grabbed the necessary hospital supplies. 


We were having to rush because we knew he can only be off TPN for about 2 hours before his blood sugar starts to drop.  And his blood glucose was about 66 already while ON his TPN.  It took about 15 minutes to get ready and out the door.  Another 15 or so to get to Mom’s and drop off the kids.  Another 30 minutes to get to the hospital.  10 minutes to park, get him loaded in the wheelchair and walk to the ER.  So in other words, we were just about out of time. 


I also knew we had the potential insurance issue.  But I knew they HAD to take us as he would quickly become unstable and this would be life-threatening.  Now it was a true emergency.  Thankfully the hospital people sent us straight back.  The nurse had called ahead to let the IV team know we were on our way. 


In no time, Wendy and Allison were there ready for the repair.  It’s a quick procedure and we’ve had it done 4 times before this.  So it had become less and less scary to see it done.  The first time?  Oh, it just stopped my heart!  They take a pair of scissors and cut the line.  If the repair doesn’t work, we have no way to feed him.  But this time was no big deal and it was done. 


Once the repair is done, they test to see if fluids can go in and blood can come out.  They can’t really use the line for 4 hours (that’s how long it takes for the glue to dry) but they can test it. 




At that moment, we knew that there were several possibilities.  One is that the line is just still blocked and would still need TPA.  That’s our favorite choice as it’s the only one that is “treatable”.  It also could have meant the line itself is no longer working.  Afterall, this line is almost 2 years old and is in use 20-24 hours a day.  They aren’t designed to last that long. 


We would only know after the 4 hours.  We would let it dry and then try again.  At this point, the IV nurse talked to the ER doctor.  We all hoped this plan of waiting 4 hours then TPA would work … but what if it didn’t?  So we concocted a plan for us to be admitted for “observation”.  If it works, we go home.  If not, we are already admitted.  The admitting doctor actually wrote up two sets of orders.  One for admitting and one for discharging. 


In the meantime, a peripheral IV had been started so he could get fluids and sugar.  For most kids, this is no big deal to start an IV.  But it’s not so easy for Manny.  His veins are unusual.  They are very scarred from overuse.  And he has had many, many bad attempts at IV sticks.  It’s been 2-4 hours commonly to get an IV in him.  That’s with constant people poking, prodding, attempting, looking, etc.  Sheer torture.  Not to mention that every attempt that doesn’t work is one less vein that can be used.  (I have to think about things like that when we are going to be admitted for long periods of time and his line isn’t working.) 


By comparison, an IV team nurse is almost 100% at getting an IV in on the first stick.  This reduces the time, the torture and saves his veins.  I can’t tell you how important this is.  This attempt?  From the time she started looking for a vein until it was ready for use was about 20 minutes. 


Then off we went to our usual floor.  He’s a celebrity up there.  And they love to see him when he’s healthy and being himself. 


We just hung out until 7pm when the line was dry enough to attempt.  Sure enough … completely occluded.  At this point it was time for TPA.  When you can get fluids in but not blood out, you can use a push method of delivering this medicine.  But when nothing is going in or out, you use a “stopcock” method.  It’s basically a vacuum method.  Many of the nurses haven’t seen this method.


In medicine, they have the “See one, do one” belief system of teaching.  And they all know me on that floor as someone who wants everyone trained.  So about 6 nurses came in to observe this.   Manny commented, “It’s a party!” and then said everyone should dance.  He made sure everyone did too.  And they did. 


Over the next two hours, they manipulate the medicine numerous times to try to get it up in there to eat at the clot.  By about 10pm, it was time to see if it had worked.  Nope.  So round two and a whole second set of nurses to come see the procedure.  This time he didn’t make them dance though.  But he still commented aobut it being a party. 


Finally, about midnight, we tested it and sure enough … we were able to get fluids in and blood out.  The line was perfect again. That was the sign that we could go home. 


And we did. 


It was just 13 hours from the time the line broke until we were home again.  All that because of the insurance glitch.

Now for the rest of the story …


This line break and ER visit were on Wednesday January 15.  Late on January 16th, I got a call that the insurance was fixed.  In fact, they told me that around noon on January 15 the file was updated to say, “Application approved”.  (So when we landed at the hospital, that’s the message they saw.)  And then on Thursday, it was completely fixed.  And it said “Active”. 


The caseworker telling me this was astounded at the interesting timing.  JUST when we HAD to have it, it was there. 


I told her not to marvel … that’s just how we roll.  :)


God is good and faithful. 

Jan 11, 2014

Why I Support the AVA Foundation

Most of you know that Manny lives on a “Central Line”.  And it’s been his only source of nutrition for over 2 years.  In those years, we have had some dramatic incidents, times where we fell through the proverbial potholes in the journey, and times where we had exemplary care.