Merry Christmas 2013

I'm Certified!

I am now officially a Certified Respiratory Therapist.

I took my certification exam and passed this morning, Aug 7th.

I plan to schedule my exams required to become a Registered Respiratory Therapist next week.
There are 2 exams I have to take for that - the Written RRT and the Clinical Simulation Exam.

Once those exams are complete, I should be fully qualified to be hired on with most any hospital in my area.

The last day of Respiratory School was Thursday, August 1st.

Actually, we didn't even go to the campus on that day.
Instead, we were honored with a mini-graduation ceremony and luncheon
at the Downtown Baptist Hospital.  Here are some pictures taken at the event:

Mr Carpenter & Zeena H

Mr Fisher and Mr Dickmann

Charlotte M & Zeena H

 

Billy T, Eduardo F& Joel P

Add caption

Kristen M & Zeena H

all the girls in the class

all the boys in the class

Joel P & Zeena H

Sophia A, Erica C, Michelle S & Erica L

Kristen V, Joel P & me

Shekinah B, Keisha B & Zeena H

 There were 23 of us in my class who completed the Respiratory Therapy Program at St. Philip's College this year. 

Here we are below back in May, when we were wishing one of our instructors a happy retirement:

 


 At our ceremony, Aug 1st....each of us was awarded with a certificate and a small token of appreciation from the Respiratory Club. Here is a picture of mine:

Then, the director of our program, Mr. Bruce Fisher, announced the 6 students in the class (the top 25%) who earned the highest grade point averages. Each was awarded with an honors cord (even though we were not in caps or gowns yet)...

      And guess who had the highest GPA of the group????     

                                 I did!!! 

I thought for sure there were a couple of others who had gotten better grades than me, so I was totally blown away!!!

They awarded me the honors cord plug a beautiful plaque!!

The night of August 1st, our class got together to celebrate our achievement.  Many of us also had our family/friends with us for this party.  Below are some pictures and even some videos of the event:

 

Josh even got up and danced... Nurse Nancy was there to video tape him... see:




Oh,  I also got my temporary license from the state...It came in the mail August 1st!!!




 And my sister got me a new stethoscope... with my name engraved on it!  Cool, huh?

ROHHAD and My Son, Josh & my clinical update

My son, Josh (you see him standing beside me in the picture below) is one of a very few people in the entire world diagnosed with a syndrome called ROHHAD.

My son Josh and me on Mother's Day 2013

What causes ROHHAD is still unknown. There is no specific test to take to prove a person has it.  It is diagnosed by ruling out all other known causes of the symptoms.

Here is a list of some ROHHAD symptoms:

1. sudden weight gain regardless of food intake or exercise
2. unable to feel shortness of breath when oxygen is low or carbon dioxide is high in blood
3. failure to produce hormones that make you grow or develop in puberty
4.  inability to regulate body temperature or hydration

for a full list of symptoms that have been described, visit http://en.wikipedia.org/wiki/ROHHAD#Symptoms

Many parents like me who have children diagnosed with ROHHAD stay in contact via Facebook.. where we compare our kids' symptoms, progress and treatments.  We give each other encouragement and search for answers for our kids.
 
Below are some videos made by a few of the families of ROHHAD chilren to share their stories.

  This March, we got an opportunity to meet in person with the family of a child diagnosed with ROHHAD.

Josh Wooten, 16 with Antonio Laguna, 6 both have ROHHAD

  Antonio and his family came to our home, along with a TV news crew who filed this report:

12 News KBMT and K-JAC. News, Weather and Sports for SE Texas
Killeen Boy With Rare Medical Condition Meets Child With Same Sy - 12 News KBMT and K-JAC. News, Weather and Sports for SE Texas

While most of the children with this disorder are able to be managed at home most of the time, some are in and out of the hospital frequently.  One, 9 year old Kira in Chicago spent months in the hospital because of her deteriorating condition.  And, unfortunately, we got news last week of her death.

9 year old Kira with her father

Chicago Tribune article: Girl, 9, dies after battle with rare debilitating disease

Kira Mammoser Obituary

As I read the many accounts Kira's mother wrote about her daughter's battle with ROHHAD symptoms over the years, I recognized they were very similar to my son's  only at a younger age. Joshua's symptoms, especially his obesity and hypoventilation (not sensing he needed to breathe) came on when he was 8 and a half.  I even suggested to Kira's mother she may benefit from getting phrenic nerve pacers like Josh has.  I envisioned her quality of life improving so much if she could experience freedom from the ventilator that kept her alive.  She had the surgery, and was only able to try out the pacers briefly.  Her multitude of symptoms just kept getting worse and worse.  And upon hearing of her passing, it really struck me on a personal level and I grieved the hopes I had for Kira of a bright and happy future.  My condolences go out  to her family.

Meanwhile, my search continues into the cause of my son's medical issues and ways to deal with the many symptoms to prevent them from overcoming him.

Below are links to some published studies related to Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation (ROHHAD syndrome):

Carbon dioxide chemoreception and hypoventilation syndromes with autonomic dysregulation.

Monozygotic twins discordant for ROHHAD phenotype.

Rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation: analysis of hypothalamic and autonomic candidate genes.

Rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation presenting in childhood.

Rapid-onset obesity with hypothalamic dysfunction, hypoventilation and autonomic dysregulation (ROHHAD): a case with additional features and review of the literature.

Intrathecal Synthesis of Oligoclonal Bands in Rapid-Onset Obesity With Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation Syndrome: New Evidence Supporting Immunological Pathogenesis.

Oxidative Stress in the Hypothalamus: the Importance of Calcium Signaling and Mitochondrial ROS in Body Weight Regulation.


There are many, many more articles associated with the symptoms of ROHHAD and the area of the brain that seems to control those functions.

If you missed it.... I now have the Discovery Channel Documentary in it's entirety on YouTube.  Here it is:




I am also finishing up the last couple of months of respiratory school.  I decided I wanted to use what I've been learning by taking care of Josh with his equipment and symptoms to help other people and to help earn money for our family's needs.

I still don't know for sure where I want to work once I finish school.  I am considering beginning at a big teaching hospital where I could work in any number of areas... with babies, children, adults, in intensive care or with pulmonary function testing, home care, transport, in public education or some other sub-specialty I haven't even realized yet.

I had a wonderful time at my last clinical location.  I got the opportunity to shadow a critical care doctor who is also a pulmonologist with a pulmonary function lab and specializes in sleep medicine.  He is also the Chief Medical Officer for the Emergency Management Division of the Baptist Children and Family Services.  He shared with us his missions he has gone on to treat victims in Haiti following their devastating earthquake a few years ago.  Below is a video of a local TV talk show from the time of the Haiti trip where they visited with this doctor about the mission:

Busy, Busy, Busy

My, how time flies when you get busy.  And this semester of Respiratory school has been BUSY!

On Mondays and Fridays, we go to clinical rotations.  We go to several different local hospitals where we work and learn in Pediatric Intensive Care Units, Neonatal Intensive Care Units, Adult Intensive Care Units, Cardiac Catheter Labs, Pulmonary Function Testing Clinics, Hyperbaric Units and much more.

Most clinical rotations are two days at the same location. Usually a Friday then the following Monday, beginning about 6:45AM and running through 2:45PM.

this picture is one I found online but shows some of what we do

We are doing in-depth studies, called SOAPs (Subjective Objective Assessment and Plan), on a patient almost every clinical day. Those studies include lab tests, physical examinations, x-ray interpretation interpretation, medication studies, name every part of the care provided to the patient and find and name anything that indicates a need for a change in plan and state why.  It takes hours and hours sometimes to complete (oh and it must be typed up and emailed in, so much of the work is done after we get home from clinicals).  It is intense but certainly educational. It's like doing a major research paper two times per week.

This summer, those clinical rotations will be 3 days a week, so we'll be doing even more of those big reports.

St Philips College

 
Tuesdays and Wednesdays we are on campus for respiratory classes that include computer simulations and working on a mannikin as our patient with ventilators, and various other respiratory devices.

Thursdays, most of us second year respiratory program students are taking Microbiology lecture and lab - pretty much an all day thing.  We are going over all sorts of microbes - those that are helpful and those that can kill you if given the opportunity.

It's April now, and my last day of respiratory school is August 1st!!!!  Then, I study to take 3 big exams to receive my certification and registration (licenses).  Then, I should be ready to get to work and make some money!!!  finally!!!


Luckily, Josh's health has been pretty stable.  But he's been busy, too.  He is in high school now.

And he is staying pretty active with church.  He goes to the weekly church youth group  get-togethers where they do things like go bowling, skating, mini-golfing and much more.

 

Josh on youth outing to the bowling center

youth group with Easter eggs at church

Josh on skates at youth group outing

  They also do several fundraisers to raise money for camp. Josh has helped put on a Valentine's banquet and has helped with yard work to raise money.

Josh does yard work 

church youth group car wash fundraiser for camp

Josh drying vehicles at the youth car wash fundraiser

Josh with his Nurse Brad on a youth group outing

Josh with his Nurse Nancy at church Valentine banquet

He usually has a nurse who goes with him to these outings.

But one weekend (Easter weekend) I was the acting nurse on duty and the youth was planning to attend a big Christian concert at the AT&T Center.  So, I ended up going with him and hanging all day and into the night to enjoy the concert.





We stood outside, waiting for the doors to open, for several hours.  Josh got pretty tired.  He did find a chance or two to sit down and rest his feet.

We were hot, tired and crammed like sardines with all those people around us ... especially behind us!











  but we ended up with seats down on the floor pretty near a back stage where a couple of bands played for us and a speaker came back there to talk to the crowd.

 It was a sold out concert... look at all those people!
The bands included New Song, Matthew West, Jamie Grace and Toby Mac.

 

We had a good time but our ears took awhile to adjust again once we left - and we left early, before the last band, Toby Mac, had really gotten started good.


James took some time off around Good Friday and Easter weekend, so we all enjoyed some time fishing that weekend, too. We thought of trying our luck at Canyon Lake, North of San Antonio, but the water level was extremely low, and there was really no place to fish from the shore (which is what we planned to do).  So, we headed up to Blanco to the State Park there and found some nice places to enjoy some fishing.
 

OK, we didn't catch any huge fish, but we did enjoy the beautiful weather and had a pretty good time.
 
Oh, we even took my mom along for that trip.  She loves to fish and to spend time with us.


And Josh found some swings to try out at the park, too.