It was quite a day

Tuesday was the first day of school in our county.  And this year we decided I would homeschool all the kids. We've had 2-4 in homeschool every year since having kids but never all 6. 

Why?  Tons of reasons but mostly because I felt they were not getting the education they deserved.  They were not being taught what I wanted them taught.  They were struggling in certain areas.  There are no appropriate choices for middle schools here.  I don't believe in Core Curriculum.  The list goes on and on. 

Jacob is 9th, Kaley 8th, Sam 6th, Luke 5th, Zoe 3rd and Manny preschool.  So quite the spread! 

The day went great.  We eased into it by doing rules, expectations, reward system, schedule and organization.  I'm quite pleased with what we've come up with so far and I included them in all of decisions. 

At 5 I headed out to meet Denise for dinner.  She is the President of the Board of AVA and is in town for a project.  Dinner was nice.  We chatted for hours and could have talked for days... all about Vascular Access (I wrote the blog about the general topic recently.) 

9pm headed home and cleaned the house a bit for the project and tucked all the kids in bed.  Everything seemed normal. 

By 11:30 I was exhausted and ready to head to bed.  Dan comes in and says that he had just been prompted to look outside and noticed a small fire on our patio by the pool.  He was quickly able to put it out.  Turns out the kids had left on a fan and it overheated or something.  The crazy part is that it just shouldn't have caught fire.  The scary part is realizing if he'd looked 5 minutes earlier or 5 minutes later it might have been too late.  This fire was inches from our house.  It's also crazy that he didn't go jogging.  He normally would have been on a jog at that time and I would have been alone in the house with the 6 kids sleeping as the fire started. 

We prayed and thanked God for alerting us to the fire and for keeping us safe.  We realize it's only His faithfulness that kept us from losing everything material. 

Meanwhile, Manny was asleep in Kaley's bed.  We often put him there to play at bedtime and he falls asleep there.  We move him once he drifts off.  Dan and I decided to let him stay just a bit longer and that I'd go to sleep.  Dan would wake me up in an hour or so when he moved him to our room.  (I put on the bipap and pulse ox.) 

I laid down.  After about 15 minutes I got this feeling like we should move Manny sooner than later.  So Dan went to get him.  It was midnight by now.  Dan commented on how sweaty Manny was as he carried him.  I thought nothing of it as Manny had been running a low grade fever earlier in the day and I thought maybe his fever broke.  As I went to put on his bipap, I noticed his eyes looked "strange".  (Yes, eyes can look strange even when they're closed.)  Dan even commented on it.  Still didn't register anything unusual. 

As I reached to put on his bipap, I felt his head and noticed that not only was he sweating profusely, he was freezing and clammy.  And it hit me!!  I KNOW THIS CONSTELLATION OF SYMPTOMS!!

For those long term readers, remember how we arrived to Denver?  This was the same thing!  I immediately tested his blood sugar and knew it would be bad when he didn't react to the needle puncture.  That was a long 8 second countdown.  His level?  19.  That's right folks! Critically low. 

It was at that moment that I looked at his TPN pump and realized it wasn't going.  Later we would discover a human error that made the pump not be delivering his TPN.  We truly don't know how long he was off but clearly ... it was TOOO long! 

Dan started praying as I started thinking about what options I had.  No way to get sugar in his mouth or gtube.  But I have a bag of TPN sitting right there.  It's got what they call D20 in it.  It's not quite enough but I can probably make it work.  I put in a call to my home health nurse but don't get through.  We consider calling 911 but I don't think he has that long.  I hook him up to the TPN but it starts with a one hour ramp up.  So it starts at a rate of  .1 and it takes an hour to get to full speed.  So I do the no-no thing of reprogramming the pump to skip the ramp up.  We wait 5 minutes.  I retest his blood sugar and it's 20.  So nothing! 

I wrack my brain at how to get it to him faster and realize that the rate of delivery is contingent upon the volume of the bag.  His bag volume is 1499 and his top rate is 75.  So I reprogram it for a 3000 volume bag which would make a rate of 150.  And it works.  I have no clue how I thought of this as I'm not even allowed to program the pump without the help of a Pharm-D.  So I certainly was never trained for this kind of thing.  And while in panic mode. 

I waited 10 minutes.  If this didn't work, I had 911 already punched in.  But thankfully, at the next test, he flinched so I knew it was working and his blood sugar was 96.  (Perfection.)  I reprogrammed the pump back to normal and then we sat there in shock.  I was numb. 

Let's say that I didn't get much sleep that night, checking on him every 5 minutes it seemed. 

Wednesday 8am I got up and tried to slap on some makeup and clean the house a bit.  By 10 I had a camera crew coming to the house to do a video about Vascular Access.  6 people and 3 cameras.  This is my passion.  This message is really important.  My friend and vascular access nurse Stephanie and I were asked to share a bit about the AVA Foundation (www.Ava-foundation.net).  I'll share the video when it gets edited. 

Hopefully something coherent came out of it. I just know my brain was in the back room with my little guy.  By noon he still hadn't woken up.  Eventually he did and seemed fine. 

Inbetween takes of the video I was trying to keep the 6 kids quiet and happy.  I was calling the GI, pharmacist and a few others to tell them what happened. (I had to confess about the pump reprogramming too!)  They were all a bit freaked out too. 

Truth?  He could have easily died.  And I knew it. 

By 3pm the film crew was loading up for the day.  I was starving, realizing I skipped breakfast and lunch.  So I made a very early dinner.  As I did, I felt the waves keep hitting me.  It was the first quiet moment I'd had since the fire the night before.  The reality kept washing over me. 

In the middle of it, I realized how it was only the faithfulness of God that really stands out.  He was faithful to alert us to the fire and to the pump issue.  He equipped us to handle the crisis.  He is just and faithful and loving and merciful and a bunch of other things. 

But ... the part I didn't like?  I didn't like knowing about how close we were.  He could have easily put out the fire or started a pump.  He, somehow, wanted us to be aware of this.  And it made me feel so vulnerable and thankful all at the same time. 

We told the kids about the fire and the pump.  At prayer time, they thanked God for His protection. 

By 11 that night, only 24 hours after this all started, I found myself talking to Dan and sharing my feelings.  I guess I just needed to talk it out. 

Thursday morning 9am we were back to school.  Sitting in our classroom like nothing had ever happened.  But the truth is ... something did. And I can tell you ... out of all these crazy crises we've lived through, I'm forever changed by each one of them. 

As I reflect tonight (Thursday) I realize I haven't really thought about the incidents all that much today.  The terror didn't wash over me at all today.  I'm more at peace with it (still don't like it).  But I also realize the astronomical odds that these things were happening simultaneously.  And I don't believe in coincidence. 

I am not sure what pieced God either added or took away from me yet but I'm sure this was another moment of Him shaping me for His purpose for His Kingdom's use.  I'm positive of it.  And shaping, while necessary, is painful. 

It was quite a day. 

Military Belt

Today I lifted my very heavy baby out of his wheelchair, up the two steps, over one seat and into his car seat.  I realized that I was going to have to do this process differently very soon. He’s getting too heavy for me to dead lift like that.  

As I was hoisting his wheelchair into the back of the van, I was hot and sweaty and breathing a bit harder.  I was ready to get into the van and rest.  

At this exact moment in time, a mom and her daughter arrived at the parking spot next to me.  The mom was about 5’2” and 120 pounds. The daughter was about 5’8” and probably 250 pounds.  She was in a virtual vegetative state and the wheelchair was completely reclined.  Their car was TINY.  I couldn’t imagine how she hoisted this daughter into that car by herself. 

I did a very rude thing.  I watched.  I didn’t gawk. I didn’t stare.  But I had to see.  Not because I was a voyeur but because I realized that it could be me with Manny one day.  

The daughter had a military belt ... like this: 

The mother raised the chair fully upright.  She lowered the daughter’s legs from the foot braces.  She got the chair as close to the car as she could.  She took a deep breath.  She hoisted her into the seat by the belt. It was a truly professional job.  I was amazed.  Impressed.  Awed.  

I cried.  

The mother is one of those millions of unsung heros. She does an amazing job every freaking day of her life.  A horribly difficult job.  A thankless job.  And endless job.  

So to the mother I saw today, I hope you know that you are an angel here on earth.  I know you’re just putting one foot in front of the other. You muster up all the strength you need moment by moment.  And some days I know you cry.  And some days you celebrate.  But every day you love.  I just want you to know that a total stranger is proud of you.  Prayers were said for you today. It was an honor to see love in action today.  May God bless you.  

MDA clinic visit

Today was a long day ... but I think a potentially good one.  It’s full of medical stuff that I’ll try to summarize.  

The MDA doctor was very clear in expressing he felt Manny was a VERY complex case and that he was a bit in over his head.  He also offered to “steer” the proverbial ship of care but said I could fire him any time as he laughed.  I said, “Fire you?  You’re the first who has ever wanted to try to steer this ship!  You’re HIRED!  It’s been only me up until now.”  So that means he will help coordinate a few of his biggest issues.  That’s great!  

This same Doctor suggested he needed further genetic testing.  There are troubles with doing certain testing as insurance won’t pay for it but he knows 2 groups who might and he will contact them to see if they will take Manny.  One at the NIH in MD and the other in Iowa (not sure where).  Mostly they will need files and some blood but they MIGHT want to see him too at some point we will see, if they accept us at all.  

The Genetic Counselor did some research.  Remember how Manny’s birthparents are related? Well the counselor looked further and said that on Gene __ it would explain the initial diagnosis of LAMA 2 (Merosin Deficient Congenital Muscular Dystrophy).  But nothing else.  On Gene __ there were 4 things it could be but 3 were not his clinical picture at all.  The 4th was.  In fact, it’s not an exact match but it does affect liver and GI.  So it might just be!  The genetic test (mentioned in #2) would test for that.  If it is, it doesn’t really change much of his treatment plan but I’d no longer be accused of having munchausen’s syndrome by proxy! LOL 

The Physical Therapy people were a lot happier with Manny’s new wheelchair than his last.  (So no one tell them we still use the other one more.)  They are still pushing for therapies and such but that’s because they just can’t help themselves.  But this time, they were kind and respectful at least.  A few decent recommendations were made that I’ll consider. 

We got the results of the EMG.  Remember the nerve testing that was done?  And it was abnormal but not in the way they expected?  Well, he explained.  So let’s say we test a nerve from the knee to the ankle.  It should travel at a certain speed.  Let’s pretend it’s a car going 60 mph.  And with kids with LAMA2, it typically goes a bit slower, say 30 mph.  Manny’s did do that.  So check.  But in addition ... there was an unusual finding.  Nerves are really bundles of axons.  Imagine a cable.  It’s one cable but inside are dozens of wires.  So the “nerve” is like the outer cable and the axons are like the wires inside.  There should be like 250 axons in each nerve bundle.  Manny had very few.  He had about 50 in one and less in others.  So I asked the obvious question, “What things cause a reduced number of axons?” And he said he had no clue! It’s just that rare apparently.  

That leads me to my next thing.  September 6 Manny is going under sedation for dental procedures.  The dentist suggested a piggyback procedure if we had any we wanted done.  I mentioned this and the doctor suggested a nerve biopsy. So we will see if we can coordinate that.  It would potentially tell us more of what is going on.  And while it’s interesting to know about the nerves that control arm or leg movement, we’re most concerned if the nerves to his “autonomic” stuff is working properly.  Heart. Lungs. GI. Kidney.  If those nerve bundles have too few axons or they are being destroyed, it could be bad.  Hopefully the biopsy will be a wealth of information and maybe even help point towards therapy/treatment options.  

The last suggestion is that we start to work with their new GI motility specialist.  I’ll call tomorrow for an appointment.  Manny’s liver numbers are starting to be concerning as are the nosebleeds and several other symptoms he’s having.  If we can stop or slow down the liver damage, it’s worth a shot.  I’m not ready to have him drowning again by feeding him or make him a virtual guinea pig but I am willing to hear options.  

There’s more but if you’ve reached this point in the blog, your brain is probably mush already so I’ll stop.  As you can see, there are plenty of “praying points” outlined.  Wisdom, healing, direction, favor to name a few.  

Now about Manny ... There were sometimes 10-15 people in the room at the same time.  Manny handled himself like a champ.  He was funny and adorable just like you’d expect him to be.  Someone told him he was charming and he said, “Uh-huh”.  Like “Glad you finally figured that out!”  He’s a trooper.  He takes all this in stride.  

And if anyone is keeping track ... Manny has been out of the hospital for 2 1/2 months!  It’s a record for us.  I truly believe the bipap was a God-send.  His respiratory infections are down to none.  He’s not having the fevers.  He’s the most stable he’s been with respiratory since we adopted him.  We ALL breathe better at night.  

Thanks to all of you for being a part of our journey.  Much love. 

Vascular Access

Let's talk Vascular Access.  

WHAT??  

Here's a little write up synopsis of the issues surrounding the topic of “Vascular Access”. (VA) It’s a huge topic but I’ll try to summarize.  And I’ll try not to hurt your head.  Ha.  

First, let me start with my involvement which will show you why I’m passionate about it.  

With the first 5 kids, they all had multiple IVs, surgeries, etc. yet never had any troubles with VA so I never thought anything about it.  Then along came Manny.  He has terrible veins and they’re difficult to access so I was introduced to the VA team at our children’s hospital.  Every time he was admitted we would see them numerous times as they helped start IVs and other tasks.  They could get an IV placed usually the first try.  Our team isn’t always there so we had to use “regular” nurses for multiple placements.  Those were typically very torturous.  Hours of poking and prodding.  Literally 3-4 hours was not uncommon.  Some of his first words were learned during needle sticks.  

When he ended up with a Central Line, our dependence upon the VA team went into hyperdrive.  It’s also when the difference between a VA nurse and a regular floor nurse became even more apparent.  Basic things were neglected.  His life in jeopardy numerous times for lack of training.  

It was at that point that I got more involved about how to train the staff so my son and the other kids didn’t face the same horrible incidents.  I was introduced to an organization called AVA (Association for Vascular Access).  I’ve written articles for their journal JAVA.  And I’m the keynote speaker at their National Conference in Nashville in September.  I’m going to be inducted on their Foundation’s Board in November.  I’m also their Spokesperson for the “Community”.  Tuesday, for example, we’re shooting a video that will be presented at the Conference.  I’ll be doing spots on other TV shows, etc.  I’m even writing more children’s books on the topic of VA as I feel it’s best way to get information across simply.

So as you can see, I’m more than knee deep!  

The issues as I see it.  

Myth:  Nurses are taught VA in nursing school.  Truth:  Nursing schools are not required in any way to teach anything related to VA.  Our goal is to require a National Standard curriculum in every nursing school.

Myth:  VA is not all that common, it’s minor.  Truth:  Floor nurses in hospitals were given a survey.  According to them, 50-60% of their day is spent on something related to VA.  And most wish they had specific training. This is goal two.  

Myth: Safety and Regulatory Boards (Such as JCO) oversee VA issues.  Truth:  They have policies on everything from fire extinguishers to paperwork.  There are no requirements for VA.  This needs to be changed.  We propose a yearly competency requirement for every floor nurse on top of inservice trainings.  

Myth:  Standards of care are set and followed.  Truth:  Very few standards of care are set for the world of VA.  Much discrepancy exists nationwide in carrying out the basic care of an IV all the way up to the care of Central lines.  Patients’ lives are at risk unnecessarily due to the lack of these standards of care.  Our goal is to provide studies that will give national standards. 

Myth:  Every hospital has a VA team.  Truth:  Very few hospitals actually have a dedicated VA team.  And those who do often do not have 24/7 coverage.  Our goal is to have a subspecialty in Nursing schools of VA so the field will expand and more hospitals will have this necessary but often overlooked specialty.  

Myth:  It’s not all that important.  Truth:  Many hospitals are using a model of “patient satisfaction” for payment and other incentives.  VA is often one of the issues that highlight the difference between a “good” score and a “negative” score.  Our goal is to help hospitals increase their ratings by having qualified nurses performing the VA tasks.  

Myth:  VA is very rare.  No one really needs this service.  Truth:  The vast majority of people who enter the ER, are admitted or have surgery will receive a VA device.  

Myth:  Everyone is trained.  Truth:  The person starting my IV could be doing this for the billionth time or it could be their first time.  Neither have to disclose that to me.  I personally have proposed that there be some way to identify those who have passed a certain level of VA training (say on their ID badge).  And for those of us who have critically ill patients of Central line patients that they could request to have only VA approved/certified nurses caring for their line.  

Numbers are available for most of my claims.  These are the types of topics that we discuss at the board meetings.  I personally was HORRIFIED to know that nurses aren’t required to learn anything in nursing school.  I had no clue it was 50% plus of their day.  I had no idea there were no training classes or requirements to prove competency!  It’s the reason I decided I needed to get involved as an Advocate.   

Personally, I would love to see this topic highlighted.  I talk about Manny’s issues and how close to death he’s been several times due to nurses not knowing the basics.  I talk about the times I had to stop him from “bleeding out” while in the hospital with a Cardiac ICU nurse and a Charge nurse just standing there.  (I was trained on what to do by the VA team and they were not.)  I also talk about how my examples are of a 4 year old but this could just as easily be my 46 year old husband post surgery or a 66 year old mother with dementia.  This affects all of us. It’s time to start the conversation with the public about how to protect ourselves and be armed with the right knowledge of what to look for, what our rights are, etc.  

It’s certainly not a “sexy” sounding topic.  But it truly will affect most of us at one point in our lives or another.  

*Disclaimer ... though I'm newly involved in the world of VA, these are my experiences and conclusions as I see them.  They may or may not reflect the opinion of AVA (but I can guarantee they pretty much do. LOL).  

Advocacy

When I first started blogging, it was called "Today's Reflection" because I had a goal to write a random thought daily.  And then life happened.  Then it morphed into mostly talking about the goings on of Manny as a way to communicate to family and friends in a quick, one stop shop place.

Today, I decided to launch something new.  But first, let me back up and explain.

When I was little, God gave me a heart to notice others.  He gave me an extraordinary faith that He would do anything and I saw that faith in action on countless occasions.

As I grew up, I was given lots of unique and interesting life experiences.  And unlike a lot of people, I actually PARTICIPATED in my life.  It didn't just "happen" to me.  I had near brushes with death and learned of my mortality early.

Along the way, I was given an interesting set of skills.  I sang my first solo at church at 3, for example.  I was on a stage practically from birth.  I feel comfortable there.  I've done singing, dancing, speaking, performing, piano, flute, etc all in front of audiences.  I've performed in front of lots of people.  It's like breathing.

I got degrees.  I had jobs where I would train people how to speak.  I trained trainers on how to teach others.

I was also given an ability to take complex information and put it in a simple way for many people to understand.  I guess that helped me in writing children's books.

Children came and there became a whole new set of references and life experiences.  The spiritual and physical parallels of Adoption.  Transracial issues.  Abandonment and Attachment.  The role of the Church in the role of caring for the Orphan and those with Special Needs.  Those became new things to discuss in the spoken and written word.

And now it's medical advocacy added to the mix.  (For example, I've been going nationwide speaking about Vascular Access ... a HUGE topic.)

Through it all, there's been a theme ... "Speaking for those who cannot speak for themselves".  It's my personal motto.  It comes from Proverbs 31:8.  So you might even see that come up.  It's part of my email, for example.  It's part of my facebook launch of my new endeavor.  (www.facebook.com/bethgore318  about to go "live")

I'm working on a new website... www.bethgore.com  ... also about to go "live".
I bought business cards today.

What's all this about?

I'm launching ... ME.

I've been struck by an Erma Bombeck quote for years,

When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, 'I used everything you gave me'.

Truth is ... if I was facing God today, I couldn't say that.  Yes I've done a few things.  Yes, being a mother of 6 kids and pointing them to the Lord is my biggest ministry I'll ever do.  Yes, I have lots of reasons and excuses as to why I haven't.  But the truth is ... God has given talent I haven't used.  And I need to change that.  

So I'll need your help.  In the next bit, I'll be putting out what I can do and want to do.  And maybe you can brainstorm on things you know that are available.  Together we can launch this.

Like what?  Conferences, workshops, seminars, retreats... that kind of thing.  I'm also working on doing TV and Youtube things.  Press conferences.  Webinars.  Podcasts.  The sky is the limit. 

What are the main topics?  I want to become a voice for the special needs community.  I can't do it alone but I can certainly be a catalyst for this world.  

So stay tuned.  Wrack your brain.  Think of networking opportunities you have.  Relationships you have with people.  Skills you have.  Topics you think would be beneficial.  Avenues I haven't considered yet.  And if you want to join me on this new adventure, even better.  I'm not wanting to be a lone voice in this ... but I am ready to start speaking.