Saturday, April 29, 2017

Transition time, SSI application, Wedding!

Hello again.  Sorry I haven't updated in so long!

As Josh nears his 21st birthday (we are less than 6 months out now!!!), we are having to do things like transition him from his MDCP (Medically Dependent Children's Program) waiver for Texas Medicaid services to the adult version STAR Plus with waiver.  We have been told things like his Private Duty Nursing are handled differently through the STAR Plus program, so we are a bit (ok a LOT) nervous about what is to come if Josh is not able to still have nurses with him overnight (so I can sleep or be on-call with work) and during the day (when he should not be left alone for many health related reasons but I still need to work).
I'm  also being encouraged by his transition counselor to sign Joshua up for SSI as an adult. This is not the first time I've been recommended to sign him up.  But, I had tried to sign him up for SSI as a child, shortly after he was diagnosed with his rare condition of ROHHAD (Rapid-onset Obesity with Hypoventilation, Hypothalamic & Autonomic Dysregulation).  But, after all the work I did to try and sign him up back then (Oct 2005), we were still denied because even though I was out of work back then, we still made too much money to qualify.  Now that Joshua is an adult, they base their decision off of his earnings and not ours. So,  I've been working hours at a time on digging for information on his past doctors, hospital stays, tests, etc. so I can fully complete the SSI paperwork.  

I am realizing it is very helpful to look back at some of my old blog entries to find dates, names, etc. I realize I have not been keeping up with the blog as much as I probably should, so decided I'd try to do better.  Since Josh is one of the older ROHHAD patients in the world and is doing so well, I'm sure others would like to see his progress - as well as his (and my) challenges along our journey.

The question comes up frequently about whether or not to allow Joshua to be his own guardian - or if we should pursue Legal Guardianship or Power of Attorney of some sort to help Joshua make decisions about his money and medical care.  I have attended a conference where this was discussed in detail.  The costs associated with pursuing legal Guardianship are quite high and take lots of extra work.  Because Josh is still cognizant - though impaired somewhat due to his damage to his brain from hypoxia when he went into respiratory arrest in 2005 - we are so far able to assist him with his decision making through discussions rather than forcing decisions, and he seems safe so far.   For example, Josh recognizes his decision making skills are slow enough that it could create a danger for him to drive, so he does not attempt to do that.  He instead relies on one of his nurses or another responsible adult to drive him wherever he needs to go.  Hopefully, that continues and he will continue to take our advice and make wise decisions.

It is almost a year since Josh graduated high school.  He spent a semester after high school in the district's 18 plus program.  But, he felt like it was not as much of a benefit to him as he'd hoped, so he decided to be done with it in December.
  He is still working at his job - at Schlotszky's in Schertz (he's been there for a year and a half) and loves it! He is only able to work a few hours a week  - and with the accompaniment of his nurse who ensures Josh's temperature has not gotten too high or too low, he is not becoming too dehydrated and of course that he is still breathing well enough.  The nurse is important because Josh's body does not tell him these things may be out of whack like ours do and his body does not automatically make adjustments to help bring him back into alignment (so to speak) as ours naturally does.  Becoming too hot, too dehydrated or just building up too much CO2 in his body because he doesn't breathe it out well could all put him in grave danger and quick!  The nurse has to take Josh's temperature often, measure his oxygen and CO2 levels and watch how many times Josh is making runs to the bathroom and encourages him to drink enough to prevent dehydration.

Josh is still considering taking college classes and is still interested in culinary arts.  We would like to find out for sure what his nursing situation will look like and how we will go about paying for school for him before he makes that commitment.

Meanwhile, I am still working as Josh's respiratory therapist at his Durable Medical Equipment company (Apple Homecare Medical Supply).  In fact, I am now the office manager.  I have 2 other respiratory therapists working with me in the San Antonio office.  This is a job that gives me great perspective of seeing the processes with medical insurance we rely on to help pay for the equipment that keeps Josh alive.  I also get the privilege to walk alongside other parents caring for their children who are medically challenged.  I feel this is my calling and it keeps me busy!

The hubby - James - is still working nights at FedEx Freight.  We are both looking forward to a vacation coming up around Mother's Day.  James will be taking a couple of weeks off work (I'm just taking off 1 week and so is Josh).  We plan to take a rental RV trailer and travel to visit some family and possibly a lake or two to do some fishing.  Oh, and we are all cheering on our favorite local basketball team, the San Antonio Spurs, in the playoffs.

My mom helps keep our household running.  She comes over to relieve the day nurse so someone is here with Josh and she gets dinner going so James can eat before he  off to work.  I almost never get home in time to cook early enough for James to eat.  Then, my mom hangs out with Josh and me in the evenings before heading home where she lives with my little sister, Amanda and her new husband, Ryan.

That is right - my sister just got married April 8th.  As you can see, she was a beautiful bride!  The ceremony was held at the San Antonio Botanical Gardens.  The reception was at Anne Marie's at Devonshire Place, in the Starcrest Room, which just happens to be blocks from my office.



I acted as a co-matron of honor for her. Us girls had such a good time throwing her a bridal shower (held at The Fork & Spoon in New Braunfels) and a bachelorette party (including a trip to The Escape Haus in New Braunfels), then getting our mani's and pedi's (at our favorite nail salon) so we'd be all pretty for the wedding.

 I can't wait to see the pictures the professional photographer took.  As soon as they are available, I'll share some. The ceremony was a fairly small gathering (as she wanted). 

Luckily, we got to see some family we haven't seen in quite a while there (including a couple of aunts & uncles & my brother and his family).  
We also got a good visit with our daughter, Steffany and grandkids, Logan and Blake.  I just noticed I have not blogged since Blake was born.  He is now 6 months old and such a sweet baby.   Big brother, Logan is 7 and such a smart boy and oh, so full of energy!  




Saturday, August 27, 2016


As a Respiratory Therapist and mother of someone who is ventilator dependent, I'm always interested in new and different modes of mechanical ventilation.

Here are some of the ones we have used or tried out for my son, Josh.

1. the LTV 950 Ventilator. (there are newer versions of this ventilator in use now)


The LTV was a good ventilator and allowed Josh to come home and still breathe. But there were some things we did not care for with this ventilator -

the two-limb circuit was a bit heavy on the trach which can pull out and be dangerous.  And it had a valve you had to turn to set the external PEEP- it could break easily and was difficult to set just right

The air that goes into the lungs is powered by a turbine which is quite loud

there are so many buttons that could easily be inadvertently pressed changing method or mode of ventilation,

and the vent is heavy to carry - especially for a young boy.  We had to mount it to a stand, or cart. 

2. the Trilogy 100 Ventilator.

In my house, we like this ventilator much better.
It is lighter (11 pounds) and easily sits on a table top but can still be used on a vent stand.

  There are far fewer buttons and much less chance of accidentally changing a setting.

The ventilator operates with a very quiet blower, and just very user friendly.
We can use a single "passive" circuit - but don't forget the exhalation valve.
The PEEP is set internally, too.
It comes with a SD card that holds data from the computer important for the doctor.
It has an internal battery that can last 3 hours and a clip on battery that can run the ventilator an additional 3 hours.
You can use a car charger and run it in the car or hook to a big heavy "marine" battery to run it another 12 hours (in case electricity going out for long periods of time).

Of course that is still POSITIVE pressure ventilation - pushing air into the lungs - which is opposite of the way we usually breathe. Here is a video about the difference between positive and negative pressure ventilation:

3.  We have also tried out the Hayek RTX Ventilator.

 This is a big clear plastic shell that fits on the outside of the chest and forces open the chest, so you naturally suck in air and pushes air from the outside on the outside of the chest so you breathe back out -  that is non-invasive external ventilation.  Some people swear by this kind of ventilation. We thought maybe it would be something Josh could use and then not need a tracheostomy tube anymore.
Unfortunately for us, it did not work well for Josh.  First, the machine is LOUD -  like running an old timey vacuum cleaner.  It did not cause Josh to blow off enough CO2 - which is what ventilation is really all about.  And the shell was terribly cumbersome and uncomfortable - in fact painful - for Josh.

4.  Luckily for us, we learned about another tool for ventilation - phrenic nerve stimulators by Avery Biomedical.

They are like pacemakers to shock the nerve that makes your diaphragm muscle contract.  That forces you to take a big breath.  The electrodes are surgically implanted, sewn onto the nerve.  They are connected by wires inside the chest to a receiver that is placed just under the skin.  Then, you tape on antennas on the outside of the body over those receivers. 
The antennas send the signal from a transmitter box in to the receivers delivering the shock to the nerve.  And you dial in the number of times per minute to deliver the shock and cause a breath.  This method works very well for Josh most of the time.  You have to change the 9 volt batteries in the transmitter box frequently, make sure the antennas are in good shape (a new pair can cost over $500) luckily insurance so far is paying for a set per 6 months for him.  Josh's doctor has him using the pacers during the day as long as he's not sick.

When Josh came down with swine flu and double pneumonia back in 2010, the shocks and forced breaths caused Josh so much pain, he could not tolerate them and had to use the Trilogy ventilator 24 hours per day.  We find that as Josh is overly fatigued, the pacers do not work as well to blow off co2 as they do when he is awake, alert and moving throughout the day.  So, when he sleeps, he hooks up via trach to the Trilogy ventilator.

So, as long as the positive pressure ventilator is going to remain a useful tool for us to keep Josh alive and well, I love to check into the latest and greatest in technological advances in this area.

Some of the newer home ventilators I have been reading up on include:

The Revel by CareFusion

The Astral by Resmed

The Vivo by Breas

Discovery Documentary - Life or Death : Battling to Breathe