V Wooten World

White Christmas and Memorial Service

2011-12-31T12:11:00.007-06:00

My dad's heart attack continued

My last post was primarily about my dad having a heart attack as he was headed for a session of dialysis, and we were waiting to see how much he might recover. Well, unfortunately, I have to report that there was too much damage to his brain when he was deprived of oxygen. Doctors recommended hospice care for him. We agreed and my dad passed away at 2:55am on Wednesday, December 21st.

White Christmas

On December 23rd, snow began falling in Odessa. By early Christmas day, the area had about 8 inches of snow on the ground. It was our first white Christmas in as long as I can remember. We enjoyed the snow. It made the day special despite the sadness we were all feeling. In fact, we hadn't even put up a Christmas tree or any lights. And we had barely done any shopping. I guess this was like getting back to the true meaning of Christmas, because one of the main things we did was go to church for a birthday party for Jesus celebration with my mom. It was nice and simple.

Snowy Ride

We did have to get out and drive in the snow, which was kind of scary. One of my uncles had purchased a special meal for us to be prepared at HEB. So, we just needed to go pick it up. I'm sure he didn't realize we'd be having to get out in the snow to get to it, but that was ok. It gave us a good look at the area covered in snow. See the pictures below:

Memorial Service

We decided to donate my father's body to science and planned a memorial service to celebrate his life midway between Christmas and New Year's, a week after his passing, on Wednesday, December 28th at 11am. We held the service at the church where my parents still went to and where my siblings and I grew up, West Odessa First Baptist Church.

My sister and I created the bulletins for the service and a memorial slide show (see the video below).

And I wrote the eulogy for the preacher to read. Here is a copy of the Eulogy:

EULOGY

Lawrence Allen Ashley was born March 27, 1946, in Crane, Texas. He was the second and youngest son to William Wesley and Zilla Best Ashley; and little brother to Albert Ray Ashley, who is here with us today. The family lived at 1813 McCall Place, behind what was "Strike It Rich" in Odessa. They lived there until Lawrence and Albert were grown.

Lawrence graduated Permian High School in 1964, and went on to Draughon's Business College in Lubbock where he met Mary Lou Day. The college sweethearts married June 10, 1967, in her home town of Spur, at First Baptist Church. Mary says Lawrence talked back then of becoming a preacher.

Mary worked at a forklift company, helping put Lawrence through Texas Tech University, where he graduated in 1970, but not before a massive tornado touched down May 11th, just blocks from where Mary was staying.

Lawrence and Mary moved from Lubbock to Midland so Lawrence could start work at an accounting firm called Conley, Peters and Smith. The house they rented there in Midland was later torn down and is now DerWeinerschnitzel.

For a while, Lawrence and Mary lived on and operated a brine station between Odessa and Andrews. That is where Mary learned many new lessons including how to throw a rock at a rattle snake to get it to coil up, then shoot it with a shotgun.

When they got ready to put down roots, in July 1972, they bought a house and had it moved to 25th Street in West Odessa. Lawrence's father passed away a couple of months later. Then, the couple welcomed their first child, a daughter, Vanessa Jane Ashley on January 26, 1973.

They added a son, Wesley Allen Ashley, on January 31, 1975. That's also about the time Lawrence began building his mother a home on the property on 25th Street, and she came out to live by the family. The family grew again, when they added a second daughter, Amanda Danielle Ashley on February 16, 1987, even though Lawrence and Mary said they were probably too old to be parents again. Lawrence joked he felt like Abraham and Mary was his Sarah.

Lawrence and Mary joined this church more than 30 years ago, when it was still called Westside
Baptist Church. They both taught Sunday school classes here. Mary worked for a while as the church financial secretary. And later, the couple worked cleaning the church, which Mary still does now.

Over the years, Lawrence has had many interests and hobbies he has pursued. Among them, carpentry, collecting cans and melting them down and forming tools, computer programming, spinning cotton into thread and weaving it into material. The local paper, the Odessa American even did a story on him giving demonstrations on that hobby. And he collected books - lots of them - and read on just about everything under the sun - especially about economics. He could give lectures like nobody else on economics - just ask his kids!

And he loved boating and fishing. In fact, he built his own boat - a kayak sailboat - years ago. He talked endlessly about fishing trips he'd gone on as a boy. And he still wanted to go back to Lake Corpus Christ, where he remembered catching a great number of big catfish. His last fishing trip was just this last March, at a pond near Canyon Lake (San Antonio), where his was the biggest fish of the trip. Amanda had to help him reel in his fish, because he was sitting in his wheelchair and the fish just about pulled him into the water!

Lawrence walked daughter, Vanessa down the aisle here when she married James Wooten on June 25th, 1994. Lawrence and Mary became grandparents to James' daughter, Steffany that same day. On September 19, 1996, they welcomed their second grandchild, Joshua Wooten. When son, Wesley married his wife, Marlo on May 23, 2003, they became grandparents again to Marlo's seven children: Whitney, Russell, Zachary, Hunter, Emily, Jaci and Abi Inzer. Wesley and Marlo have since given them 5 more grandchildren: Chavvah, Ayres, Batiyah, Flynt Maverick, and Gideon Ashley. Batiyah passed away at birth in 2005.

Lawrence and Mary also became great-grandparents to one boy - Logan, and to two girls - Amelia and Caroline - with one more on the way in April.

Complications of diabetes sent Lawrence into the hospital at the end of 1998. He lost a little toe and had a heart attack, requiring triple bypass surgery. Soon, he was spending three days a week in dialysis. He did that the rest of his life. His diabetes claimed his eye sight, but never detered him from his studies - especially on economics.

On December 7th, as he walked out of the house, to head for dialysis, Lawrence had another heart attack. This time it did too much damage to his brain. And doctors were not able to save him. He went home to be with the Lord on December 21st at 2:55am with wife, Mary by his side.

My mother wanted my aunt and uncle (her sister and brother) to sing at the service, which they did beautifully. All in all, the service turned out well.

We are now all back home in Cibolo. We've got my mom here while my brother works on her house. It is in pretty bad shape - needs lots of electrical and structural work. We wouldn't mind, though, if my mom decided to give up the old house and just stay here with us. Of course, we will support her in whatever she decides to do. I do ask, though, that you keep her in your prayers. Doctors just told her she is diabetic and has problems with high cholesterol and high blood pressure. And she is trying to adjust to living without my dad. She has been his caregiver for so many years now.

Thanks for checking in on us and may God bless you all and give us all a happy new year in 2012!

Winter Break - Heart Attack

2011-12-12T15:12:00.004-06:00

Here is our most recent picture of the three of us together, taken December 3rd as we watched our local high school football team win their quarter final championship game. They actually proceed next week to the State Playoffs at Cowboys Stadium.

Today is Monday, December 12, 2011, less than two weeks until Christmas and instead of doing Christmas shopping and decking our halls, I’ve left the guys at home and made a trip to my parents’ home because my dad suffered a heart attack Wednesday, December 7^th.

I drove down by myself, my first time to be away from Josh for more than one night since he has been ventilator dependent, etc. Josh was not too happy for me to be going without him, but we a great team of nurses helping his dad with his care while I am away.

On Wednesday, December 7th, I had just gotten home and finished lunch after one of my four big final exams of the week. I just had one more to study for and take the next day. My plan had been to spend the afternoon and evening studying for my last exam then dig out the Christmas decorations, cards, etc.

My plans changed quickly, though. My sister called me to tell me she had just got a call that Daddy collapsed on his way to his regular dialysis appointment, and they were rushing him to the emergency room.

I immediately called my mom to find out what was going on. Mama told me that Daddy had not been feeling too well the night before or that morning, but had walked out to the van that takes him to dialysis.

**My dad has had diabetes for many years. He is blind in one eye and only has a little vision in the other. He has had bypass surgery several years back. And, his kidneys are so bad that he has had to be on dialysis treatments three times a week for at least 10-12 years now. Below are pictures of what dialysis is like***:

They were getting things ready to help him into the van that transports him to dialysis, so he sat down in a wheelchair. As they were loading him in the wheelchair into the van, they noticed he had his head hanging down and he was not responsive. The van driver yelled for my mom and asked her if she wanted the driver to call 911. My mom didn’t know anything was wrong until then. She came to try and help rouse my dad and said, “yes, call 911.”

My mom says a sheriff’s deputy arrived very soon afterwards and helped them lay my dad out flat and start CPR.

An ambulance and more sheriff deputies arrived minutes later and worked on my dad a few minutes and raced him off to the hospital. The deputies asked if my mom wanted them to take her. She said she would be okay to drive but they followed her a ways to make sure she was ok.

At the hospital, my mom found my dad hooked to a ventilator.

Doctors asked her if my dad had advanced directives for an event such as this – in other words, did my dad to be revived if his heart stopped. She wasn’t sure, but said she wanted them to do all they could to save him. They suspected he’d had a heart attack. And that means he was probably without oxygen to his brain for some amount of time. They weren’t sure how much damage had been done. But his vital signs were so poor they did not risk taking him through a CT scan.

My sister, Amanda (see her in her orange UTSA shirt below) got a flight and I took her to the airport so she could be with my mom by that night. I took my last final exam on Thursday and headed to Odessa that afternoon.

Oh, here is a picture of me with most of my fellow Respiratory Therapy students on the day of our last final of this semester (taken December 8th, not long before I left to go to Odessa):

By the way, I've since got my grades back for my 1st semester classes. I got all A's!!!

Anyway.... back to my story:

Luckily, Josh’s nurses were able to work out a schedule to be with him the majority of the time so I could worry about my parents without having to take Josh out of school and with me. He did not need to be sitting up at a hospital all the time with me with my dad in intensive care. **Huge thanks to Nancy, Dot and Cisco for all your help!!!**

The doctors gave my dad a hypothermia treatment (see example picture below) in order to try and preserve neurological function as best they could and to slow down his body and allow him to heal as much as he could. They gave him powerful sedatives and other drugs to make sure he would not move around or shiver from the cold. That treatment lasted Wednesday night through Saturday. They began warm him back up then slowed down and eventually stopped the powerful drugs, so they could see how he was.

They say his heart looks enlarged on the right side (which is the side that pumps blood into the lungs where it gets oxygenated). This enlargement usually happens because there is a problem getting blood into the lung area and the heart has to work extra hard. When you work a muscle more than usual, it gets bigger. Below is a picture I found to illustrate this:

And, they say my dad had significant right pleural effusion. That is fluids that make their way into the space that surrounds the lungs, making it difficult to breathe. Below is a picture I found of someone's chest xray that has this problem (this is NOT my dad's xray, but one I found on the internet) The black is air, the white where the right lung is supposed to be (near bottom of chest) is fluid:

They treated my dad for pneumonia (in case that is what was causing this fluid) and gave him blood thinners (in case a clot may have caused his heart attack).

My dad’s vital signs improved. He did not require as much oxygen and his heart rate and blood pressure looked better. He had some fluid pushing into his right lung. And that has since lessened, helping him to get better ventilation. He has had a CT scan of his head and an EEG. Those were done to look for brain activity and evidence of a possible stroke. They told us the CT scan looked good – no signs of stroke. But we have not heard results of the EEG. We were told they would likely take my dad for a CT scan of his chest with contrast solution today, to check for problems with his heart and lungs.

Here is what an EEG test looks like:

Here is what a CT scanner looks like:

We are waiting to see how much my dad can recover. So far, he has only opened his eyes a few times, moved his legs and looked like he was trying to move his mouth as if to try and talk. I think he moved his hands slightly today, but just a couple of times. Mostly, he sleeps.

Meanwhile, we found that my mom had an eye infection on Saturday, and got her to a clinic to get it taken care of. And she has not seen a doctor for herself in quite some time. At the clinic, they found her blood pressure was elevated, so my sister made her an appointment with an internist doctor. They are at that appointment right now. And my dad’s nurse just came to say he would be headed to the CT soon. So, I will finish this post and post some pictures and links to more information on all these medical terms, etc. when I go wait in the ICU waiting room.

Back home, Josh was asked to participate in a couple of tests for ROHHAD research. One was a smell test and the other was a temperature regulation test. He received the materials for the test... including the little beanie baby leopard wearing a temperature Ibutton and a wrist band with another Ibutton (seen in the pictures below) He finished up those tests after I was away in Odessa.

Josh seems to be doing pretty well, all things considered. This morning, he saw an orthodontist, who says he could benefit from braces. We are waiting to see what insurance and Medicaid will cover on this, to see if we can move forward. They say it could take three weeks to learn what would be covered.

I'll try to update my blog more during this break from school. I go back January 17th!

Summer Updates & Begin Respiratory Program!!!

2011-08-24T10:30:00.021-05:00

It has been a long time since I've updated (sorry about that)
mainly because Josh's health has been pretty stable (thank God)
and because I have been SO busy preparing to be in school full time...
which has now begun. I'll tell you more about that later, but first...
I'll catch you up on our summer.

SUMMER SCHOOL & BYE BYE DAYCARE
Over the summer, I took two classes that are part of the Respiratory Program
but neither is specific to that program.
First I took English Literature 1302

Then came General Psychology 1301

I made an A in each one, so I've kept my GPA at a 4.0 ... yay me! :)

Those classes, though they were online classes, took so much time and effort, that I decided to quit my job at the daycare a little sooner than I originally planned.

I knew I would not be able to continue working there while going to full time day college classes. I miss the kiddos but it sure helped me focus on my school work and preparing both Josh and me for the beginning of this school year.

SUMMER EXTREME COUPONING
A big part of our summer was also spent learning the art of Extreme Couponing!

First, there are some great websites to get you started...

These often have all the ad details along with a database listing of coupons available for each item... you can make your list plenty ahead of time and collect all your coupons and be ready to head to the store and save money!

We got coupons from several sources,

cut and organized them all (which is a BIG job, I must say)

and planned many, many shopping trips.

My sister (college grad, gainfully employed, and a coffee junkie)

is a spreadsheet queen.

She used them to help us maximize our coupons for several of our trips - especially to Walgreens and CVS, (where they use Register Rewards and Extra Care Bucks to keep you shopping there, but can also save you big bucks if you know how to use them).

So over the months, we stocked our shelves with all sorts of needed items: toilet paper, paper towels, kleenexes, shampoo, conditioner, deodorant, toothpaste, laundry and dish soap, toilet cleaners, ketchup, mustard, cereal and the list just goes on and on.

We are stocked up now with enough of most of those items that we shouldn't need any more for several months.. maybe even a year or so! So, that should help reduce our grocery bills while I'm in school.

MORE EXTREME SAVINGS - CABLE
Then, this week, looking for more ways to save money, we finally cut the cable.

I hadn't realized just how much we were really spending to watch tv -
$100 per month is about what it added up to.
We had basic cable through ATT U-Verse $69 per month
plus 3 boxes for DVR that were an additional $7 each.
Add in taxes and fees, and it came to about $100.

My sister already had signed up for Netflix basic (about $8 per month) which hooks to 4 devices... one of them was Josh's Wii. So, we have LOTS of things on that we can watch as long as my sister isn't home watching it on her other devices. But, it's free to us.

And I got a converter box from my daughter, bought a nice $15 antenna at Walmart and found we had like 15 channels or so of regular TV that came in crystal clear! And of course we have DVDs and VCRs and still have internet where we can watch many shows on TV.com or Hulu.com and dozens of other sites.

With our lives already so busy with school, work, etc.
we should be plenty entertained with what we have
and busy the rest of the time...
so without the cable bills, we should save
like $1200 a year!!! Nice!!!

Next, we're thinking of cutting our home phone bill by looking into Magic Jack.

A lot more happened over the summer....

In June, we lost an especially remarkable woman...
my Grandma Day...

(pictured here with my Aunt Peggy and Uncle Jr)

she had been suffering with Alzheimer's for quite a while...
she had been living in a nursing home...
Her passing was pretty sudden and sad,
but we know she is now in heaven.

And in attending her funeral, we got to visit with many people in our family we had not had a chance to see in a really long time.

Then, in July, we took a mini vacation
to the Gulf of Mexico... where we did some fishing
and had a great time... despite it being so HOT!

In August, we tackled a project James had wanted to do
for a long time.... we ripped off the carpet and took out
old wood from our stairs and put in nice hardwood
steps and risers

Oh... and we had Logan (the grandbaby)
with us every once in a while...
like on this trip to Lowe's to look for supplies

he's growing up so fast!

Josh helped his dad and me with the project
(which is a good thing since he is in woodshop
this year in school!!)

here 's the new steps... Josh and I stained them!

We also collected school supplies... which for me included
scrubs, a stethoscope, new shoes and expensive books

RESPIRATORY PROGRAM BEGINS!
So, I officially began classes ... Respiratory Classes... this week.
And I've got information on where I will be doing my clinicals - at University Hospital, San Antonio. Luckily, they don't begin until mid-October. Until then, we'll have our hands full learning all sorts of information we'll need before stepping foot in a hospital. I will take a refresher CPR class on Monday, Aug 29th, so I can renew my certification for another 2 years. I am super excited about starting the program. And I can't wait to graduate ... which should be sometime in July 2013. (so I may not be on here too much between now and then).

JOSH NURSING AND SCHOOL
Another big change as we began school... we decided to have our home agency nurses take Josh to school this year, instead of having the school hire a one-on-one nurse for him during school hours. It works out much better this way. With our agency nurses, they can drive him - so no having to ride the bus every day. Also, if Josh gets sick and has to come home or stay home from school, he will have a nurse who can be with him the whole time, rather than me missing class or clinicals if we can't find a nurse to step in at the last minute. And if Josh wants to participate in an after school function, his nurse can stay with him. A school hired nurse would not be able to do that. Plus, we have a great team of nurses right now who all had a chance to train with Josh and us prior to school starting and communicate with one another well. Josh even has a guy nurse like he's wanted for a long time. So, we are looking forward to a great year.

Josh is still using his diaphragm pacemakers during the day... but has to take his ventilator, etc. with him just in case. And his nurses have to take his vitals several times per day to make sure his settings are good. They can also give him medicines to help regulate his temperature when needed, etc. And if he needs attention to his trach or anything, they are there to help. It is really good to know there is someone there who knows what to do if anything horrible should happen and to help prevent that before it does.

Nursing Changes, New Bacteria and More

2011-04-08T00:10:00.003-05:00

Hi!! Welcome to My World!

I decided to start with a recent picture of myself so you could see who it is writing to you. I recently decided to cut some of the length off my hair. I like it better this way. What do you think?

The last time I wrote, it was mostly about our change in health insurance that led to my 14 year old son, Josh being off his growth hormones for nearly a month. During that time, his heart rate dipped so low we were afraid it would stop and we couldn't start it back again. We were so worried, we went to the emergency room once and then to see his heart specialist.

Below is a picture of Josh at the E.R. having an EKG done.

And below is a picture of Josh having an echo of his heart done by the specialist when we went to her office.

The cardiologist, Dr. Hospers, nearly sent us to another doctor to have a heart pacemaker implanted. But Josh started his growth hormones back up just in time that she decided he wouldn't likely need a heart pacemaker - just to keep taking those growth hormones.

But just as we mostly put that worry behind us, a new trouble arose.

One of Josh's nurses, while he was sleeping, picked up a tube from his CO2 monitor down to his trach. She wanted to check an error reading on the monitor. She did not notice that tube was wrapped around another, the air hose tube (circuit) that runs from his ventilator to his trach tube in his neck. And inside that tube was a build up of water from his heated humidifier. The lifting caused the water to pour from the tubing into his windpipe (trachea) headed for his lungs. He coughed some out and the nurse quickly suctioned as much as she could from his trach tube. But it looks like enough got in there that some stuff from the sitting humidifier water started to grow inside of him.

Below is a picture of Josh sleeping all hooked up to his ventilator (notice the tubes):

Well, it was either from that or from moisture that built up and allowed mold to grow inside the tubing of his breathing treatment machine (the IPV). That tubing had not been taken apart and dried out properly a few days while Josh's main nurse was away on vacation. When she returned, she noticed the mold inside the tubing and filter - but only after Josh was already taking the breathing treatment. As soon as she saw it, she stopped the treatment and told me what she had found. We had to get all new tubing for that machine and in the meantime give Josh regular nebulizer treatments instead of IPV. (IPV actually sends blasts of air down into the lungs along with medication and saline.)

Below is a video from a little while back showing Josh taking an IPV treatment.

Both those incidents happened shortly after we had decided to change nursing companies. We have high hopes that this new nursing company will send us more nurses to train so we have backups and a better supply of quality nurses to choose from. They have taken the first nurse mentioned above off our case and we have another coming to train and start working next week. They are also working to get Josh the guy nurse he wants. And they've hired Josh's school nurse to also be one of his home nurses. She is even able to bring him home from school!

So, Josh had a sputum culture taken (that is a sampling of the crud he coughs up through his trach tube - mucus - and it is taken to a lab and allowed to grow whatever is in there for a few days) March 30th. When we went to see his lung doctor on April 5th, we got the results back.

Below is a picture of Josh at that appointment, doing a pulmonary function test.

We were afraid he had mold growing in his trach and maybe even in his lungs. But the doctor said no, he had a type of bacteria growing - heavily - according to the test. That bacterium is called Stenotrophomonas Maltophilia. I had never heard of it. My nurses say they had never heard of it either. So, I looked it up.

Stenotrophomonas maltophilia

From Wikipedia, the free encyclopedia

Stenotrophomonas maltophilia
Scientific classification
Kingdom:	Bacteria
Phylum:	Proteobacteria
Class:	Gammaproteobacteria
Order:	Xanthomonadales
Family:	Xanthomonadaceae
Genus:	Stenotrophomonas
Species:	S. maltophilia
Binomial name
*Stenotrophomonas maltophilia* Palleroni & Bradbury 1993
Synonyms
Pseudomonas maltophilia (ex Hugh and Ryschenkow 1961) Hugh 1981 Xanthomonas maltophilia (Hugh 1981) Swings et al. 1983 Pseudomonas hibiscicola Moniz 1963 Pseudomonas beteli corrig. (Ragunathan 1928) Savulescu 1947

Stenotrophomonas maltophilia is an aerobic, nonfermentative, Gram-negative bacterium. It is an uncommon bacterium and human infection is difficult to treat.^[1] Initially classified as Pseudomonas maltophilia, S. maltophilia was also grouped in the genus Xanthomonas before eventually becoming the type species of the genus Stenotrophomonas in 1993.^[2]^[3]

S. maltophilia are slightly smaller (0.7–1.8 × 0.4–0.7 micrometers) than other members of the genus. They are motile due to polar flagella and grow well on MacConkey agar producing pigmented colonies. S. maltophilia are catalase-positive, oxidase-negative (which distinguishes them from most other members of the genus) and have a positive reaction for extracellular DNase.

S. maltophilia is ubiquitous in aqueous environments, soil and plants, including water, urine, or respiratory secretions; it has also been used in biotechnology applications.^[4] In immunocompromised patients, S. maltophilia can lead to nosocomial infections.

In Josh, it has caused him to cough up and his nose to run a yellowish - greenish mucus, very thick at times (especially from the trach) but pretty thin at times from his nose. At the doctor's office, Josh went through an entire box of kleenex!

The doctor prescribed Bactrim. Josh is to take one pill every 12 hours for 14 days. We had hoped Josh would be well enough to return to school after taking three of the pills. I tried sending him to school, but he was sent home running a fever. Then, he required oxygen the entire next night, so I kept him home again. It was a good thing I did, because his temperature was back up again that day. We will try school again in the morning (Friday, April 8th).

Meanwhile, I am still going to school Monday and Wednesday evenings taking Anatomy and Physiology II and taking an internet English course. I also still work at the daycare and do everything at home to keep the place operating. And I turned in my application packet to get into the respiratory program next fall.

We had a visit from my parents. My dad had an eye surgery in Austin and stayed here with us a week afterwards. He was worried something went wrong because he could see much better out of his one ok eye for a day, then it was like a curtain was pulled. He went back to the eye dr and they said it was ok. It just had blood floating around in there that would take some time to be reabsorbed. While they were here, we took my folks fishing and my husband, James fried us up some of the catfish we caught.

Below is a video and some pictures from our fishing trip.

Lots more has happened in the family - especially in the extended family back in Odessa. There was a death in the family that had James, Steff and her hubby and son making a trip back there for a few days. Josh and I were not feeling well, so we stayed home. After my parents have been back home a few weeks, my dad is happy to report he is seeing much better again.

My 14 month-old grandson, Logan is growing and doing more and more all the time. I kept him last weekend and he was walking - nearly running all over the place. In fact, he went all the way up the stairs by himself (well, I was right behind him to make sure he didn't come tumbling down). He sure is a cutie pie!

Check out this video. Josh is blowing bubbles at Logan in our kitchen. Logan just loves it!

Change of Insurance - Change of Heart ?

2011-03-10T22:08:00.004-06:00

Insurance Change - Growth Hormone Issue - Heart Rate Problems

Back in January, my husband's company changed from Cigna to Anthem Blue Cross Blue Shield. It was the first change in our primary medical insurance in quite some time. But it was a change that resulted in more serious issues in our household than we would have dreamed!

We have gotten Josh's growth hormones from the same specialty pharmacy for years. When that pharmacy was processing the refill for January, they realized our old insurance company said we were no longer with them anymore. I had forgotten to contact them before this, and figured it was no big deal. I would just give them a copy of our new insurance card and all would be fine. Well, they took the information on the new insurance. We now have a separate card for our pharmacy coverage - Express Scripts. But, uh oh, they don't have a contract with Express Scripts. So, we would have to contact Express Scripts to ask them how we would now get the growth hormones.

I called the number on our card for Express Scripts. The customer service agent who answered looked up the name of the growth hormones and said they do not cover this medication. He even looked for some way for that to be changed if we had a letter of medical necessity from the doctor. But, no, he did not see any way in their system to over-ride the fact that they did not cover it. So, he was not sure how we could get the growth hormones anymore.

I decided to try back with our first specialty pharmacy again and see if they could bill our insurance, get a denial letter from them, then send that denial to Texas Medicaid to see if they would pay for it. They would look into that and contact me back.

Days later, and no call back, so I called to ask again. Meanwhile, Josh is nearly out of growth hormones by now. This time, the representative I spoke to said the information I got from Express Scripts was wrong. The medication is covered by them. I need to call them back. I wasn't sure how they figured that out and the guy at the actual insurance company had it all wrong. But, I had no choice but to call back to Express Scripts to see if it was in fact covered.

Oh yes, they now had approval for the growth hormones. But you can't get them from just anywhere. They have a specialty pharmacy we have to get them from called CuraScript. They connected me to them, so I could give them all our information so we could get started with them. I gave them all the information they asked for. Now, they needed to contact the doctor for the prescription. Once that was done, they'd call me back with a delivery time. The growth hormones must remain refrigerated and are overnighted to us by either FedEx or UPS.

Days passed, Josh ran out of growth hormones. And still no word back from them. I called them back to ask what the holdup was. They said they had not yet heard from our doctor. So, I too called and left a message for the doctor. And, I also get a fax number for the specialty pharmacy and send over a copy of the prescription printed out on previous shipments of the growth hormone from the last pharmacy, along with Josh's Texas Medicaid insurance information they had not asked for originally. I wanted to make sure they were able to bill both insurances once they got the prescription ready.

In the meantime, Josh’s heart rate started dipping into the 30’s at night. This scared the heck out of his nurses and me. I called his heart doctor’s office and was told to take him right away to the emergency room for an EKG. I took him out of school and took him straight to the hospital. They did the EKG, put him on a holter monitor and sent him home.

While at the hospital, we finally hear back from the nurse for the endocrine doctor (who prescribes the hormones). She says the doctor did not think his being off the growth hormones had this effect on his heart rate. And we can go to that office, which is about 45 minutes or so from our house, to pick up an injection pen that we can use until the prescription gets filled and delivered to us.

Knowing the doctor was aware and getting the prescription to the pharmacy, and that it should be overnighted to us, I chose not to take off work again to make the long drive over to pick up the pen. But, when the pharmacy called us back to talk about when to ship the hormones, they did not show any secondary insurance information. Unless we paid the $200 co-pay (which we don’t have), then we would have to wait for them to run the secondary insurance and set up the shipment later.

More days go by, and still no word back from the specialty pharmacy. When I call them this time, they say Texas Medicaid requires a Prior Authorization form to be filled out by the doctor before it will approve the payment for the hormones. I think that is odd because they have been paying the co-pays on the hormones for years. But what do I know? So, this is when I decide not to wait any longer. I take off from work and go pick up a growth hormone pen from the doctor’s office. That is when I learn from his nurse that she contacted Texas Medicaid and no Prior Authorization form is necessary. The pharmacy was wrong. And she was connecting them with the proper department at Texas Medicaid so they could get things worked out.

That was a Friday afternoon. Friday evening, the pharmacy again called to set up delivery. It would go out the next Monday and arrive at our door on Tuesday. Well, Monday afternoon, I get a phone message stating there is again a delay in getting the hormones to us. We need to call them back for more information.

That weekend, though, once back on the growth hormones, Josh’s heart rate climbs again. And Monday, he saw his heart doctor in person. She had not read the holter monitor results, but in looking at the EKG’s and doing an ultrasound on his heart, they looked very healthy. She said she couldn’t explain why but it did look like the growth hormones had played a role in his heart rate. We are all worried that there could be pauses in the heart beats, though, when the rate gets that low. If the heart pauses for too long, it could stop and not start again. It was a good thing we had the hormones started again. If the heart rate gets too low again, like that, to let her know and we may have to see about scheduling a surgery for my son to place a cardiac pacemaker in him.

So, when I called back to the specialty pharmacy to find out what the new delay was, they said the doctor only gave a verbal order for the growth hormones and not a written prescription. And Texas Medicaid requires a written prescription to cover the co-pays. By this point, we have used 4 of the 10 doses in the injection pen we’d gotten from the doctor’s office. I asked why they didn’t ask for that in the first place and got no real answer. I was getting pretty angry with the incompetency this pharmacy was showing, and asked to speak with a supervisor. I made it clear that getting these hormones was extremely important, due to the heart rate issues. And I asked that they do whatever necessary to ensure we got these hormones ASAP (that week!). He assured me he would contact the doctor to get this handled right away.

Now, we are at Friday and no call back from the pharmacy to set up that all important shipping date, so I call them back again! They say the have had no response back from the doctor, so they cannot ship the hormones. Now, we have a couple of doses left of the growth hormones. And Josh’s heart rate has been much improved since being back on the hormones. I was very, very worried what would happen if he has to go off of them again. By this time, the doctor’s office is closed. There is really no hope that there would be a prescription in writing from the doctor until at the very earliest Monday. That would mean the absolute earliest we’d get the shipment was Tuesday. But, judging by the past dealings with this pharmacy, that was still unlikely.

So, my husband went that Monday morning to pick up another growth hormone injection pen from the doctor's office (since I had to work). And apparently his visit to the office got them moving on getting the written prescription to the specialty pharmacy. Because, the next day we FINALLY got the shipment of growth hormones we had been needing for well over a month.

We are praying we never have a change of insurance that goes like this one again. And apparently when Josh ever does need to go off the growth hormones, we believe he should be tapered off, to help his heart rate not drop like this again.

About Me & My Family through 2008

2011-02-05T18:25:00.008-06:00

(this is what I had worked on for years on MySpace... I wanted to post it here, too, for those who do not frequent MySpace)
VANESSA WOOTEN

Born January 1973, I grew up in a humble, Christian
home with my mom, dad, grandma (dad's mother),
younger brother and much younger sister.
We lived on 4 acres in the country.
We raised chickens, rabbits and cats; had a large
vegetable garden with many fruit & pecan trees.
My dad, a self-employed CPA, had his office
next door to our home. My parents taught children's
Sunday school classes at a nearby Baptist church.
My mom also worked as church financial secretary.
I was SAVED and baptized when I was 9 years old.
In school, I was in the Zenith program and Advanced
Honors classes. Senior year, I was appointed
yearbook editor. I earned a full scholarship to a
junior college, where I studied journalism, and
aspired to be a talk show hostess. Driving to a class,
my vehicle overheated. Radiator fluid badly burned
my right arm. I had physical therapy, but could not
drive or even write for months. So, I dropped out
of college. I went back to another junior college
in 1994. I interned at our local CBS affiliate,
KOSA TV where I went on to become producer
then assignment editor. 9 years later, I got an offer
to work as a Medical Records and Patient Intake
Coordinator at the Permian Basin Rehab Center.
I prayed about it and believe God was calling me
for a change. But there was an even bigger change
on the horizon.

I became a mother and wife in 1994 when I married a
widower. James lost his first wife in a car accident
just before their daughter, Steffany turned a year old.
My family and I knew his wife when she was a girl
in our church. We all felt an instant connection.

Our son, Joshua came along in 1996.

In 2004 my husband’s work transferred him about
a 5 hour drive away from our families and hometown.
We sold our house and moved away from our familiar
settings. I took the summer off to settle our new home.
By the time I looked for a new job in the San Antonio area,
a 24-hour local news station disbanded, flooding the market
with news professionals. So, I found work with a small business
specializing in Flexible Spending Accounts (Cafeteria Plans).

A few months after the move, our son, Joshua - who had been
healthy all his life - suddenly collapsed and went into
respiratory arrest. It took months for doctors to find the cause
of his collapse.

He has a very rare & serious disorder that causes his
breathing to be too shallow, stops his body from making
growth hormones or properly regulating his body
temperature and hydration. It has left him with a trach
tube in his neck so a ventilator can help him breathe.
He also needs daily growth hormone injections and
other medications. What's more, doctors say there is
no known cure for this disorder.

Because Joshua's disorder is so rare (at the time 25 cases
were known in the world) there was a big write-up
in the San Antonio Express News.

That article led to an hour-long documentary being made
about Joshua and the onset of this disorder.
It was shown on Discovery Channel and on Discovery Health Channel.

March 3, 2005
Joshua (8-and-a-half years-old) spikes a fever and collapses.
I take him to the Texas Med Clinic where his oxygen
level is down to 50 percent (it ..should.. be 100 percent)
Ambulance rushes Joshua to hospital.
He is admitted to Pediatric ICU.
March 4, 2005
early morning hours
Josh goes into respiratory arrest.
He has to be revived ..5 times..!

March 17, 2005
After 2 weeks in ICU,
Josh released from hospital
He goes back to school
then enjoys the summer

Aug 30-Oct 3, 2005
Josh extra sleepy again,
his blood oxygen levels falling again.
He is admitted to Methodist Children's Hospital
A doctor in Chicago helps San Antonio doctors
make the diagnosis of
..Late-Onset Central Hypoventilation Syndrome
with Hypothalamic Dysfunction...
Sept 16, 2005
Josh gets a tracheostomy (tube in his neck)

Sept 19, 2005
Josh ..9th Birthday..
in the hospital in isolation
because he developed MRSA infection.

Oct 2005
Josh home from hospital
but he has to hook to ventilator when he sleeps.
We wait to hear from Rush Hospital
Josh needs to go to Chicago to see Dr. Weese-Mayer

Jan 29, 2006
Josh sings "I Can Only Imagine" for our church
not a dry eye in the place

Feb 2006
Joshua goes back to school
after the school district hires a one-on-one nurse for him.
(Remember, he has not been able to go to school
since the end of August, when he was
hospitalized for 6 weeks)

July 2006
Make A Wish sent us to Orlando

THANKS TO MAKE-A-WISH OF CENTRAL TEXAS
and ALL THE SPONSORS!!!

July 30, 2006
San Antonio Express News prints story
about Joshua in their Life Section

Sept 2006
2 not-for-profit websites for chronically ill children
feature Joshua on their sites.
To see his pages click on their
logos below:

Sept 6-13, 2006
Josh hospitalized due to high sodium level in blood

Sept 19, 2006
Josh's 10th Birthday
out of the hospital less than a week ago

Sept 21, 2006
Josh sworn in as honorary Cibolo Police Officer

Sept 24-29, 2006

to see specialist at Rush Hospital

Chicago skyline from hospital's apartment building

Josh studied day & night

a test shows Josh could stop breathing altogether
if the power fails & machine turns off

Dr. Weese-Mayer says Josh needs
to be on the ventilator 24 hours a day
and he is NOT a candidate for the diaphragmatic pacemaker
- at least not now.
He has to keep his trach ..probably forever...
Very disheartening news!
And he needs nursing care 24 hours a day.

Josh has ROHHAD
What is ROHHAD?
(Rapid-Onset Obesity With
Hypothalamic Dysfunction, Hypoventilation,
and Autonomic Dysregulation Presenting in Childhood)
Read about ROHHAD below in an article
by Dr. Debra Weese-Mayer

LINK

Oct 2006
Trip to Odessa

Nov 2006
TV Producer contacts me about
doing a documentary about Joshua
for Discovery Channel
Nov 2006

Josh starts taking growth hormone shots
6 nights a week!
Feb 2007
Josh approved for Medicaid waiver program
but had to spend a night
in a nursing home first

Feb 2007
TV Crew comes from ..London, England..
to shoot interviews for Discovery Channel documentary

Feb 2007

Josh's Baptism

March 2007
Josh rides along with Cibolo police

March 2007
An article I wrote about Joshua
published by online
Christian magazine.
Read it by clicking here:

June 2007
Family Vacation to Rockport/Port Aransas, TX

July 2007
Watching Cowboys Training Camp
at Alamodome, San Antonio, TX

Aug 20 2007
Josh Pilot for a Day

Sept 17, 2007
Josh got to start 4th Grade
after school district hires him a new nurse
(another nurse quit the 1st day of school this year)

Sept 2007
Josh's 11th Birthday Party

Oct 25, 2007
Joshua and class attend field trip
to the symphony in Seguin. Then lunch in a park.

Joshua's sodium level in his blood
gets very high (meaning he is very dehydrated) Friday when
he went to the pulmonologist (lung doctor).
This can be quite dangerous, so he has to drink
an extra lot of fluids - even though he doesn't feel like
he needs them - and then go back Friday of next week
for more bloodwork.
Nov 8, 2007

premiered on

Dec 2007
Christmas Happenings

Jan 4 2008
Spurs vs Knicks Game at AT&T Center

Jan 12 2008

Benefit Golf Tournament
raised about $2,000 for
wheelchair accessible van
for Josh's ventilator cart

Mar 5 2008
Josh meets Robert Horry
of the San Antonio Spurs Basketball team

June 2008
CCHS Family Network Conference
Orlando, FL

Aug 1-4, 2008
Josh and Mom fly to Los Angeles, California
Josh participates in MRI brain mapping study,
see some cool Movie Theaters where big Hollywood Premiers are held,
and visit new friends who have CCHS

Nov 2008
Josh Wooten bowling for Special Olympics 2

My Birthday, Pseudomonas & Growth Hormone Issues and Oh, Snow in San Antonio!

2011-02-05T12:27:00.004-06:00

Wednesday, JAN 26th

It's my birthday, but I was so busy, I almost didn't notice... I worked all day, went to school that evening

My husband, James, brought me flowers and a card for my birthday

and I received a few other gifts from friends, family and co-workers

we celebrated a day early Tuesday, JAN 25th
at The Melting Pot for some yummy chocolate fondue!!!!

check out that flame (this is the Flaming Turtle)

I highly recommend the Flaming Turtle!!!!
make sure you try it with the rice krispy treats! YUMMY!

the birthday girl, ME!

my son, Josh

my sister, Amanda

Josh's nurse, Nancy

Thursday, JAN 27th

Josh was coughing up yucky, chunky, dark secretions from his trach... his nose was a constant runny thing... a little worried, but sent him to school

then his temperature starting rising...

his school nurse called me to pick him up...
and I made him an appointment within the hour to see a doctor with his pediatrician's group

strep - negative
flu - negative
sputum culture - results in a few days

in the meantime, another oral antibiotic just in case

that evening, we celebrated my birthday week a bit more with a Strawberry Banana Split cake made by my sister

Friday, JAN 28th

kept Josh home from school after he had a really rough night, had to be suctioned several times

his temp went up even more - too 100.5 (his base temp is often 96-97)

secretions still increased and yucky, but getting a little better

needed a little oxygen to help keep his O2 sats up overnight, but otherwise ok

OH... Josh ran out of growth hormones tonight!
there was some issue with our new insurance trying to get them approved....
waiting for the specialty pharmacy that handles growth hormones to get the official denial from our insurance company and then to send that to Texas Medicaid to see if they will approve paying the entire cost so Josh can get his shipment that should have been here days ago. :(

MONDAY, JAN 31st

Josh seemed well enough to return to school

heard the doctor called with sputum culture results as I was headed to my evening class... left message for me to call the next day

TUESDAY, FEB 1st

Doctor says Josh the culture from his trach grew Pseudomona...
that can be bad... probably turned his secretions dark and stinky....
if current antibiotic does not seem to completely clear him up, he may need to be admitted to
hospital to get IV antibiotics!!! NOT good news

Here is some info I found on pseudomonas:

''Pseudomona'' literally means 'false unit', from the Greek pseudo ('false') and mona ('a single unit').

They are gram-negative, rod-shaped bacteria. They love water, soil and plants. They often cause a fluorescent, yellow-green, stinky secretion. They are also commonly the cause of urinary tract infections. Being Gram-negative bacteria, most Pseudomonas are resistant to penicillin and similar antibiotics, but a number are sensitive to antibiotics such as tobramycin, gentamycin and ciprofloxacin.

You can learn much more about this yucky bug here: http://emedicine.medscape.com/article/226748-overview

meanwhile, the weather turned COLD this afternoon.... expected to just get worse over the next few days... Yay!

Monday, I wore a sleeveless blouse and flip flops to school.
Now we are pulling out our big coats and gloves ....
I hope this doesn't cause Josh any more health troubles

WEDNESDAY, FEB 5th

It's 20 degrees out with wind chill of 4!! Snow in the forecast!! but so far it's been dry and windy

And Josh seems to be doing a little better every day... crossing our fingers he'll stay out of the hospital!

unfortunately no progress reported on the growth hormones, though :(

I had my first test in my Anatomy and Physiology II class tonight.
The subject was the heart and blood.

Found out later I made a 97% on the Lecture portion and a 98% on the Lab.
YAY... it was worth getting out in the frigid temps to go take these tests!

FRIDAY, FEB 4th

Snow Day!!!!! Late last night, the city of San Antonio closed all its highways because of ice. Then, while we were all sleeping, it started to snow.

We got a call with a recorded message at 5AM from Josh's school district saying all classes were canceled. That also meant my work was closed. So, we got to sleep in.

When we finally got up... this is what we saw out front:

It wasn't alot of snow, but any on the ground in San Antonio is amazing!

Josh had to go see this "amazing" occurrence for himself.

Below is a news report with an aerial view of the snow and closed highways in San Antonio:

The snow was all melted off by the afternoon, which was good so people could get out and about again!

Oh, still no word on when Josh will be getting more growth hormone. I worry what that will mean for him. It has been more than a week off the hormone that he has been getting injections for for the last 4 years.

But, Josh seems to have kicked to pseudomona... his temp is back down to normal... his secretions are nice and clear and a little less in the amount, too. And today's temp outside is going back up to the 60's. So, hopefully nothing will creep back in now.

Pulmonary Clinic Day report

2011-01-18T15:22:00.005-06:00

Today was another scheduled doctor's visit - at the Pulmonary Specialty Clinic.

Our appointment time was 9am, so I turned on my alarm for our normal wake up time for school. But I had forgotten my husband had turned off the electricity to our room to put in a new light switch the other day. That meant the alarm clock thought the alarm should be set for 12:00 not 6am.

Luckily, my sister called and woke me to tell me something she heard on the radio on her way to work - but it was long past the time I was planning to get up. It was already almost 7:40AM. I had hoped to be ready to leave by 8AM. We skipped Josh's morning breathing treatment, grabbed a bite to eat on the way and the nurse helped us get everything loaded. We left out a few minutes later than I'd hoped.

Luckily, traffic wasn't too bad and we arrived at the clinic right on time - actually about 8:50AM.

At the weigh in...

Josh is now 212 pounds (which is not really more than at his last doctor's visit in December)... and his height came in at about 5 foot 5 and a half inches (which is about a half inch more than the last check). That means his weight has held steady even though he is still growing taller at a good rate. That is good news!

There was a bit of concern when they took his blood pressure the first time. But when he sat down and relaxed a couple of minutes and they took it a second time, it was nice and low. So, that was good.

The dietician came in next....

she said we seem to be doing a good job... but she gave us some papers to study about helping make good food choices and tips on helping you eat more small, low cal meals throughout the day, and make sure you understand labels on your food. We already knew about that. They officially put Josh on a 2,000 calorie a day diet - which is about where he is now, I think. And we talked about what a good sodium level in our food should be for a day. She said 2,000 mg. I think we are probably under that most days.

The respiratory therapist was next... to do PFTs (pulmonary function tests)... Josh did very well on them... see pics/videos below:

A new case manager is on duty for us now.... Irene... she will follow up with our DME (durable medical equipment) company about getting extra sterile q-tips and 2x2 guaze to help with extra trach care sessions to help prevent the spread of any MRSA that is currently colonized in Josh's trach area.

Then, after we had been at the office for over 2 hours, we finally saw the pulmonologist (lung doctor) Dr. Kelly Smith.

We went over all the pertinent stuff that had happened with Josh since the last time we'd seen him: hospitalized after Thanksgiving following stomach bug for dehydration, suspected sinus type infection and two different antibiotics (augmentin for 10 days then Bactrim DS for ten days)... mentioned that sputum culture had grown MRSA (nasty infection) at that time. Sputum is no long ugly, discolored, but nurse reports it still has fowl odor. So, Dr. Smith orders another sputum culture today to make sure it's not "taking over the neighborhood" as he explains it. We should get results back on that in a couple of days.

We brought in Josh's memory card from his bedside ventilator, so we gave that to them to download (in case it has info that could be pertinent).

Then, it was signing paperwork, getting our copies..... (see Josh's current doctor orders below)....

Then we loaded back into the van and headed for home.

We got home around 1pm, and finally got eat some lunch!!

Now, I've faxed off the paperwork to Medicaid Transportation, proving we did indeed go see that doctor that is 19 miles from our home.

PRESCRIPTION PROBLEMS

And we've been having issues with Josh's prescriptions. Medicaid is supposed to be paying the co-pays on them. But since we started a new primary insurance this year, they are experiencing a glitch in their system, wanting the pharmacy to first bill our old insurance company before they will pay. I've tried calling Medicaid, and the other number they gave me to report the change in our primary insurance. I ended up having to leave a voice message. When they returned my call, they said because I was not the policy holder or pharmacy, they could not take any information from me! James is the policy holder and has to sleep until the time this place closes because he works nights! So, I called the pharmacy back and told them the whole story. They will try again to get it all worked out. I hope they do it soon, so we can pick up the three prescriptions that are sitting there waiting on us right now.

Next, Josh and I have to take back the cart I bought from Target, that I am not using for his ventilator and medical supplies (since I was able to use the baby stroller base).

Then, it will be time to get coffee up to James and start getting dinner ready. And I need to start work on my first internet class for English, and work on applying for more scholarships.

Tomorrow, it's back to work, come home to meet with our home respiratory therapist who will be stopping by to go over the ventilator with our newly hired MALE nurse for Josh. Then, I will have to fix and eat dinner quickly and head off for the first night of Anatomy & Physiology II classes this semester.

PHEW!!!! That is alot to do in the next 24 hours or so!!! I'd better get to it!!!

Ventilator Cart, ROHHAD on Mystery Diagnosis & Collecting Spit

2011-01-13T10:25:00.007-06:00

New Ventilator Cart

It's been kind of a trusted friend, Josh's ventilator cart. We've been using a cart to haul around Josh's ventilator and medical supplies for some time. Below is a picture from 2009 of Josh at the doctor's office with his ventilator cart.

Back then, Josh had to be connected to his ventilator all the time. He originally had a bigger ventilator, the LTV 950, a bigger suction machine/bag, and we had to charge his external lithium batteries for his ventilator on a separate charger.

Josh has since upgraded to a more compact and lighter ventilator - the Trilogy 100. He recently got a new, smaller suction machine/bag. And his new ventilator has built in external batteries that charge while they are hooked up to the ventilator - so no need for the extra charger. We've been happy about having lighter and smaller components on the cart - but the cart has taken quite a beating over the years.

Here is a fairly recent picture of how his ventilator cart looked with the new Trilogy vent:

Well, yesterday, as the ventilator cart was being loaded onto the school bus on the wheelchair lift, the cart toppled over. A side rail broke, crippling the cart. Those particular type carts are no longer available at the Container Store where I got the last one. So, we had to say goodbye to our old friend, and I had to scramble to find a replacement of some kind last night, so Josh could go to school with all his gear today.

I found another type of shopping cart at Target - but it did not appear too sturdy. I bought it anyway and brought it home. Here is a picture of it:

But I also remembered my daughter had a baby stroller that had a base and infant car seat that separated - and she was no longer using it. I thought I remembered it seemed like it might make a nice base for a ventilator cart. She thought it might topple over too easily, but I asked her if I could try it out anyway, just in case. And she agreed. So, I brought both home last night and stayed up WAY too late working on putting a new cart together.

I ended up using the baby stroller base and added some wire baskets I'd put on the last cart. And this one seems to work out great (so far). We still need to add straps to the sides and make sure they are adjusted to fit the lift arm in our van. And we have to turn it backwards to get it in the van where the old cart went, because this handle area is longer than the old cart's. But at least it works and is plenty sturdy. And I think we've got the weight distributed nicely so it won't topple over.

Plus, this ventilator cart, has two cup holders and a small compartment for small articles near the handle and nice breaks on the back wheels. It also rides smoother than the last cart. So, the nurses and I are pretty pleased with the end result. I think Josh will like it too, although one nurse kidded with him that she was going to bring a baby doll to ride around in this cart since it was a baby stroller to begin with. He just laughed at that comment.

Josh spent much of the month of December into the first week of January fighting off some kind of sinus infection. He went through two different kinds of antibiotics. We are still not certain it is completely gone, but at least for now his temperatures have been nice and low and the secretions have not been terrible colors. He did require oxygen along with his ventilator for several hours last night - so not sure what that was about. Health-wise, we just take it all day by day and pray for the best.

MYSTERY DIAGNOSIS

Meanwhile, one of our internet friends who is also diagnosed with ROHHAD, Haven Fowler, made her premier on Mystery Diagnosis last night! Here is a link to a video about her episode: http://www.oprah.com/own-mystery-diagnosis/Mystery-Diagnosis-Trapped-Inside-Their-Bodies-trailer

Congratulations Haven (and to your mom & dad) on a great episode! You looked marvelous! And we hope it will inspire more doctors to learn about ROHHAD. We sure hope there are answers out there for this disorder soon.

GENETIC TESTING

Speaking of helping teach doctors more about the disorder.... we are participating in a genetic study into ROHHAD. We signed off all the papers with The Manton Center for Orphan Disease Research at Children's Hospital Boston.

They sent us saliva collection kits, so they could get our DNA. We spit in the cups and FedEx'ed everything back to them yesterday afternoon.

We hear there are 12 families signed up to participate so far. We sure hope this brings some good information to the doctors there. Maybe one day doctors will know what causes ROHHAD and how to cure it!

Hunting, Halloween, Special Olympics and Medical Articles to share

2010-11-14T16:50:00.011-06:00

When Josh was diagnosed with his disorder (now known as ROHHAD), we heard there were only about 23 known in the world. On Facebook, a group of us moms has found one another and we've discovered that the number of cases of ROHHAD around the world has probably tripled since that awful day (for us) back in 2005.

Sept 2005

There still is no known cause of ROHHAD, though the doctors looking into it have some theories that range from a genetic mutation, or an auto-immunity to a seizure disorder. And there is no known cure yet.

There are a few articles being published in relation to ROHHAD and CCHS (which seems partially related due to the central hypoventilation portion of the disorder). One little girl whose mom we talk to on facebook is the subject of one of the articles. Another article is about a very promising possible treatment for the hypoventilation - something doctors came across purely by accident. Below are some titles and links to those articles, in case you'd like to keep up with it.

Short communication
Chemosensitivity recovery in Ondine's curse syndrome under treatment with desogestrel

Pediatric Pulmonology 43:1036 – 1039 (2008)

Case Report: A Novel Missense Mutation in the PHOX2B Gene Is Associated With Late OnsetCentral Hypoventilation Syndrome

Cyclophosphomide for Rapid-Onset Obesity, Hypothalamic Dysfunction, Hypoventilation, and Autonomic Dysregulation Syndrome

Meanwhile, Josh is doing pretty well right now.

Fall 2010 School Photo

In October, he got to go out bird hunting with his dad. It was a beautiful day, and they had fun even though they didn't bring down any birds. Oh well.

And when we accompanied my sister when she was looking for a car to buy, Josh found his dream car. He got to sit in it, but didn't get to drive it off the lot, too bad! :)

October 22nd, we celebrated one of Josh's nurse's birthday by going to a Mexican food restaurant where not only can you get the biggest mountain of nachos you've ever seen, but you can also get your face painted. Josh got his painted with a dragon. Check it out:

We had a nice Halloween - dressed as a vampire (see our pics below). He started the evening sitting on our front porch with a bowl of candy and pretzels, and handed it out to the trick-or-treaters that came up.

Then, we drove over to our church for the fall festival. I got a few pictures of us that were taken at Fall Fest, and I'll share them below, too.

For the third year now, Josh participated in Special Olympics bowling Nov 9th. He was a great sport and came in third place, accepting a bronze medal. His scores were a 70 on the first game and a 94 on the second. He even bowled a strike once and came close to sparing out a very difficult split.

The latest medical updates on Josh are that he is now 5 foot 5 and a half inches tall and weighs 211 pounds. He is doing great with his diaphragm pacers. Here he is back Oct 22nd doing a pulmonary function test at his pulmonologist's office.

He will take one more testosterone injection on Nov 19th, then have 6 weeks off so he can have his blood drawn to check all his levels.

And I think Josh started coming down with a sinus infection, so I took him to his pediatrician Friday afternoon, who checked him for strep throat. That came back negative, so the doctor prescribed Augmentin for him. I think it is already helping.

Josh got his flu and pneumonia vaccines already, so he should be good there.

We have no more doctor visits scheduled until after the holidays (well except for blood work just before new year's eve).

Steffany (who turned 19 October 21st) and family are doing well, too. I've got a few recent pictures to share of them that are just precious!

Happy Holidays everyone!

The Medical Side of Josh

2010-10-05T16:45:00.004-05:00

Just heard that one of the websites for chronically ill kids that featured Josh back in 2006, MACS (Make A Child Smile), is expecting a big media event soon. They say we may expect a little more traffic looking at our kids' sites with the links to our page there. So, I thought I'd write up a little about what my son, Josh has and how it affects him.

Josh likes to think of himself as a normal boy. His mind is often on football, basketball, his friends, games or movies. He dreams of driving his own sports car one day. But whether he likes it or not, his rare medical condition always looms over him and limits him.

Everyone thought Josh was perfectly healthy and normal when he was younger.

His first problems were:
sweating more than normal - which he's done since he was a baby,
failing hearing screenings - as early as 3 years of age (they said the trouble was in the high frequencies and he can hear most normal speech just fine),
and a learning disability (discovered in 1st grade when he could not seem to grasp basic math and reading).
Otherwise, Josh was active, rarely sick and usually quite happy.

It wasn't until he was 8-and-a-half that we discovered there was something seriously wrong with him. He'd had a throat infection and finished a course of antibiotics. He would get up and go to school ok, but come home and fall asleep on the couch and not be able to wake back up and stay awake. He was missing out on playing with his friends, going to a favorite church function, and he wasn't eating much. This lasted a few days. I thought he was just still recovering from that throat infection. But after having a bath to try to wake him enough to finish his overdue homework, still wrapped in a bath towel, he collapsed in front of me.

I got him to his bed, realized he was very hot, took his temperature and found he had a fever of 103. I gave him motrin, got him dressed and took him to a minor emergency clinic - thinking he likely needed more antibiotics. Instead, the doctor found his blood oxygen level was very dangerously low (50 percent and it should be 97-100 percent). They called an ambulance that rushed him to the hospital. The next morning, he went into respiratory failure and had to be resuscitated 5 times before getting him onto a ventilator.

Doctors did not find the real cause of his problems until months later and another hospitalization. His diagnosis was a combination of a few things: central hypoventilation (a part of the brain causes the body not to ventilate properly).... because he did not have that particular problem from birth, they called it Late-Onset. But his body was not producing cortisol as it should either. An endocrinologist said he also had hypothalamic dysfunction.

You can see more about how we learned of Josh's disorder by watching the documentary produced for Discovery Channel and Discovery Health. "Life or Death : Battling to Breathe" aired in 2007. I have a taping of it here and on the bottom of my blog page.

The name of his disorder was changed in 2007.

What Josh has is now called ROHHAD (Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation). There are now more than 50 people known to have this disorder in the world and most of them have different symptoms or at least different degrees of severity of the symptoms. Here's how it affects Josh:

His body does not produce growth hormone or testosterone so he must take those hormones by injections. Growth hormone he gets 6 nights a week in a tiny needle just under the skin (sub-q) of the back of his arm, testosterone once every four weeks (in a longer needle deep into the upper buttock area).

His metabolism is slowed down, so that he gains weight much more rapidly than others his age, despite diet changes and exercise. So, he sees an endocrinologist and a dietician frequently, uses fat free milk, sour cream, etc. and we make sure to add as much fiber and reduce the amount of sugar he takes in.

His body does not regulate temperature correctly. If he is in the cold, his body temperature goes down. It's been as low as 96 degrees. If it's hot out, he is also hotter than he should be - usually up to 100 or so with no infections present. So, we take his temperature several times every day to make sure it doesn't get too high or too low. He often has to take ibuprofin or cortef if his temp gets too high. If it gets too low, his hands will turn a scary shade of purple/blue and we have to use hand warmers or blankets, etc. to help warm him up.

His body does not regulate hydration properly. He will sweat often even if its cold, pee out way too much, and he never really feels thirsty when he should. This causes his sodium levels in his body to skyrocket which can be very dangerous/deadly. He takes a nosespray called DDAVP that helps him retain fluids to help prevent him from becoming overly dehydrated. We also encourage him to drink alot. He carries G2 (low sugar gatoraid) and diet green teas with him to school to help the nurse gauge how much he is drinking.

His body does not detect oxygen or carbon dioxide levels. He can physically breathe just fine, but never feels the sensation of suffocation that he should when his body gases are out of whack, so he doesn't realize he needs to breathe in and out bigger. Because this is an automatic thing your body is supposed to do and you can't just sit and think about breathing all the time, Josh needs a ventilator or some other device to force the bigger breaths. He was implanted last summer with diaphragmatic (breathing) pacemakers to help with that. He can use them when he is awake, but needs to be hooked up to a ventilator (respirator) when he sleeps, to give his body rest.

Josh takes a variety of medicines/supplements to help replace nutrients he looses when he sweats or pees out too much and to reduce stress on his body from all the weight and other issues going on inside of him. He takes a low dose steroid called cortef (hydrocort is the generic name), synthroid, potassium, calcium, magnesium, zinc, fish oil, acetyl l-carnitine, alpha lipoic acid as well as allergy meds.

To hook up to the ventilator, Joshua had surgery just before he turned 9 on his neck where he has a tracheostomy tube placed. That tube must be changed weekly or when it gets too plugged with mucus. And it must be suctioned out frequently to try and keep it nice and clear.

His breathing pacemaker has small wires running through his chest that can break easily, so he has to be careful not to get hit in his chest area too hard, as this could break the wires and cause his pacemakers to stop functioning - which would mean he'd have to hook back up to the ventilator all the time to breathe enough to be healthy.

Josh also has that high frequency hearing loss - which means he misses some sounds like "sh", "th", "sk", and "ch." He has hearing aids for both ears to help, though he doesn't feel the need to wear them, and we don't fight with him about that.

Josh requires somebody trained as a nurse, with experience using a ventilator and changing a trach, etc. to care for him basically 24 hours a day.

They need to know about diaphragmatic pacemakers (now) so they can help him with his. When we do not have a nurse on duty, I perform this task. And he'd like it to be 24 hours a day - but that is just not possible.

Josh contracted H1N1 swine flu January 2010 and developed double pneumonia.

His health since that time has not been as stable as it was before.

He had been able to balance everything pretty well and stay out of the hospital mostly. But he has been in the hospital a few times this year. And he has to take breathing treatments called IPV (Intrapulmonary percussive ventilator) now 3 time a day.

Our goal is to get and keep him as healthy as possible while helping him live as close to a normal lifestyle as possible.

I'm a student again

2010-10-03T11:35:00.006-05:00

BACK TO SCHOOL

You may have noticed I haven't had as many posts lately here on the blog. That is because I have been even more busy than usual - I'm back in college.

This semester, besides working nearly full time at a local daycare and keeping up with the bills, laundry, dishes, trash, etc. at home, I am also taking two of my pre-requisite classes I need to get into the respiratory program at St. Phillips College next fall.

I am taking College Algebra and Human Anatomy & Physiology.

Since I have not seen the inside of a college classroom in 15 years, I am really having to put my nose to the grindstone to master this material. But I think I am doing pretty well. I have made 100's on my math quizzes and on my first lecture and lab exam in A&P, I made a 101 on each! I took my first math exam on Thursday, but have not seen my grade on it, yet. I do know I missed at least one of the 17 problems on the test because it dealt with something that we did not specifically cover in that class, but something that we should have remembered about graphing from a previous math course (which I had not taken since high school).

Here are some of the interesting things I'm learning about in my classes so far:

And here are some of the subjects we've covered in Anatomy & Physiology:

Words used to describe body areas and position, etc.

Body Cavities (areas in the body where different organs go)

Cells

and now we are working on the skeletal system

skull

vertebra (spine)

ribs & sternum

shoulder/arm

hands

hips/leg/feet

I have a big exam on all the bones coming up Wednesday, Oct. 6th. Wish me luck!

I really enjoy taking Anatomy & Physiology because I can use what I'm learning as I study on the medical problems Josh has with his ROHHAD. I learn the medical terminology and functions more specifically. I'm all for learning as much as I can to help Josh and others with this crazy disorder.

Josh is 14

2010-10-03T10:35:00.003-05:00

Wow, 14 years old!

We planned the details of Josh's birthday party for several weeks. However, it did not go off the way we planned.

Josh wanted as many kids as possible to come to his party ... which was to be held at the same park where we had his last two parties ... so they could play all the football, basketball and baseball they liked.

One of his nurses had recruited Pizza Hut and Starbucks to help supply the food and drink.
We picked up the decorations. And we had several offers of folding tables to use to set up everything at the park. Invitations were out and we even set it up as an event to invite friends on facebook to come. It was all coming together and Josh was super excited.

BUT .........mother nature did not play along. We were watching the weather forecast and the sky as the time neared to go out and set up at the park. At one point, it said there was a 100 percent chance of rain for the time of the party and the next hour. And it started pouring before we could even get out the door to start toward the park. So, we contacted everybody we could and let them know we would change the location and have the party here at the house instead. Josh was not happy to have to ditch the park and all the sports he was ready to play with his friends.

My sister and I worked relentlessly to get the house ready for a party that we had not planned to have here... and just in time, it looked like we had planned to have it here all along.

We picked up the coffee, etc. from Starbucks (a huge container full with a sleeve of cups, lids and all the different sweeteners you can imagine plus a half gallon of half n half).

Another of Josh's nurses arrived and brought with her a very large, beautiful birthday cake she had worked on for hours for him.

Then, the guys from Pizza Hut popped in to unload several large pizzas, tins of pastas, breadsticks, sodas, plates, cups, etc.

And our guests got here despite the downpours outside. Josh had a few boys his age show up, his nurses and their families, some great friends from church and some neighbors as well.

We all ate and drank well.

The kids had a great time throwing a little soft football around.

Josh received several nice gifts.

And we all had a great visit.

It seemed the party was a huge success even if it couldn't happen at the park this year.

THANK YOU!!

Josh and I worked on some thank you poster cards for Pizza Hut and Starbucks.
Here are a couple of pictures we took of Josh to use on those cards:

A LATE BIRTHDAY GIFT

Besides the party, I had hoped to be able to give Josh a gift he has been wanting a while - his own laptop computer.

He has a pretty severe learning disability. But he loves to look up information on the computer about pretty much anything he learns about in school.

He had been trying to save money from selling cookies, etc. but still had not collected very much.

So, I put out a request on a local yahoo group called Freecycle for a used laptop computer.

I did not get any responses back before Josh's birthday, so had given up on receiving one for Josh.

But more than a week past Josh's birthday, I was contacted by email. A lady asked if I'd ever gotten a computer for Josh from a fellow freecycler. I told her I had not. And she said she and her husband had one they were no longer using. She would ask her husband to get it prepared and would bring it to us for Josh.

They did and brought it over yesterday (Saturday, Oct 2nd).

Josh was still asleep when they came by with it. My husband, sister and I started looking at it to make sure it would be able to get on the internet and everything. We loaded programming into it that would allow Josh to get online wirelessly. And we found that this was one of the nicest computers we'd seen. The couple even gave us their nice leather case for it.

The wife told me that her husband had walked in telling her they should think about getting rid of that computer because they no longer used it right as she'd noticed my post about wanting a computer for Josh. We decided it was God's moving that brought this all together.

Since Josh's birthday was already 2 weeks behind us, I thought about holding the computer as a Christmas present for Josh. But after looking it over and getting it all ready for Josh, I was too excited to wait. I went up and woke him. I told him we had something for him downstairs, but he had to do his breathing treatment, take his medicines and get dressed before he could see it. He did all that and was so thrilled to see his gift. It was kind of like Christmas morning!!!

Josh on TV again, back to school preps, Morgans Wonderland fishing & more

2010-08-14T12:32:00.007-05:00

JOSH TO BE ON TV AGAIN

On television in the coming months, the world has a couple more chances to learn about ROHHAD, the rare disorder that nearly took Josh from us and causes him to require a ventilator and all sorts of medicines. ROHHAD stands for Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation.

Josh and his disorder were already featured in an hour long documentary, Life or Death : Battling to Breathe (see it at the bottom of this blog page) that aired on the Discovery Channel and Discovery Health a few years ago. Battling to Breathe focused on the time when Josh suddenly went into respiratory failure and doctors struggled to save him and discover what it was that caused this previously healthy boy to get so sick so quickly.

CAST OF DREAMS

If you recall, Josh was selected to go on a dream hunt near Del Rio in December 2009, thanks to TNT Outdoor Explosion and Cast of Dreams. He shot his very first deer, a big buck. He even made the front page of the Del Rio newspaper the next day.

Those working on the show contacted me last week to say they were currently editing his episode and needed some photos to help tell Josh's story. They also said they'd send me a disc when editing was complete, so we could see how it turned out. I still don't have an air date, but I'll pass that along once I do. Here is a link to the channel and schedule for TNT Outdoor Explosion's.

I just have to share a couple more pictures from Todd Cast of Cast of Dreams. Todd just got back from another hunt in Zimbabwe. He sent us a couple of pictures of his most memorable kill:

MYSTERY DIAGNOSIS

I've also been contacted by the makers of the Discovery Channel Show, Mystery Diagnosis, about telling Josh's story. They have been interested in telling the story of a ROHHAD patient for some time now. They had been in discussions with another family, but the plans with them fell through. They were still very interested in ROHHAD because it is so rare (less than 100 known cases in the world) so they found us here at VWootenWorld and left me a message. Our primary doctor who diagnosed Josh back in 2005 was happy to help tell the story with us again, so the show is pitching the story to the network. We should hear whether it is a go or not soon.

JOSH SICK

Josh started running fevers last weekend and started coughing coughing up super amounts of mucus. After 4 or 5 days of this, I made him an appointment with his pediatrician, who sent us to a clinic for some tests and prescribed Josh an antibiotic (Omnicef).
Josh at Pediatricians office

Josh and Nurse at Clinic for bloodwork, sputum culture and chest xray

Josh's chest xray

That night, Josh had one of the roughest nights since he had double pneumonia back in late January. We had to suction several times and max out all his ventilator settings to get his oxygen and carbon dioxide levels near normal levels. His nurse said she nearly woke me in the night a couple of times because she didn't think his levels would normalize, but they finally did.

After a couple doses of antibiotic, plenty of rest and lots of suctioning, Josh is starting to get better. His temperature is still a little higher than we'd like, but it's coming down more often than before. We are hoping he will be back to good health by the time school starts Aug 23rd.

Getting Ready For School

We have already registered Josh for school. He starts Junior High this year. We go this next week (Aug 18th) to meet his new school nurse, pick up his class schedule and books that he'll keep at home. He is very excited about it.

And for the first time since before Josh was born, I am going back to school this year, too. It has taken far more time and effort than I ever dreamed it would, but I got all registered for my pre-requisite classes.

Grants will pay for my tuition and fees. We scraped together the money to buy my books (I found them on Craigslist and I'll try to sell them to someone else after the classes are over). But I will still need to work as much as I can so we can afford the gas money to get me back and forth to classes. I have classes 3 nights a week at a facility about 30 minutes away.

Once all my pre-requisites are finished, I'm hoping I'll be accepted into the Respiratory Care Program at St. Philips College. Its a 2 year program. But since I already know so much about working Josh's ventilators, suction machine, and monitors, I figure it would be a natural fit for me.

Thinking of taking house off market

Since we will be so busy with work and school starting up again, we have decided we will take our house off the market if we recieve no bid for it in the next couple of days. We've had the house up for sale for the last year and a half, with no bites, so I've had enough with trying to keep the house show-ready. I really don't want to have to worry about that with working and going to school.

Morgan's Wonderland Fun

Last weekend, James got the opportunity to participate with a buddy in a red fishing tournament. He had a lot of fun even though they didn't really catch any award winning fish. While he was away, Josh and I decided we wanted to do a little fishing of our own - but at a place much closer to home - and with a bit more to do than just fishing. We went to Morgan's Wonderland.

Morgan's Wonderland is an amusement park created with special needs folks in mind. It's the only one of its kind in the world. Below are some pictures of us enjoying ourselves. Oh, and my sister, Amanda and her boyfriend, Nick came along with us.

SOFTBALL

For years, Josh has been waiting patiently to get back into some kind of sport. He loved T-Ball and coach pitch baseball back before his respiratory failure. Since then, he's been forced to sit on the sidelines mostly because he's connected to a ventilator and riddled with hydration and temperature problems. While those problems are still present, at least now he has pacemakers to free him from the ventilator most of the time while he's awake. So, we've agreed to let him try his hand at softball, playing (a little bit anyway) with our church's league. He went to his first practice last Monday. And today, he picked up his very own softball glove. Now, we just pray for the weather to cool off.

BIRTHDAY PLANS & GOODBYE TO POST OFFICE BOX

Josh's 14th birthday is coming up September 19th. His nurses, seeing first hand how his disorder affects his life, are excited to try and make his upcoming birthday party one to remember. They have shared with me that they have made a few requests for donations for party supplies and maybe a gift or two for him. I know one of his big wishes for a birthday present is his very own laptop computer. So, perhaps his birthday wish can come true - we'll have to wait and see.

And we've decided the time has come to close (and stop paying for) Josh's post office box. He has been very happy to go check his PO box often over the past 5 years. But as time passed, he was receiving fewer and fewer cards and letters. He still loved getting every one that came. But we figured it was a good time to go ahead and just have any more mailings forwarded to our home address. If you would like to send Josh a card or letter, etc., you are welcome to send it to our home. Drop me an email at JWooten116@att.net and I will share the address with you. If you would like to drop him a line on his own email account, I know he'd love that too. You can email him at: JoshuaAlanW@Yahoo.com.

Sleep study

2010-07-30T22:36:00.001-05:00

We are at a sleep lab just blocks from The Alamo. Josh is watching Transformers 2 while his nurse/tech hooks probes up to his head. We hope to learn if his vent settings and trach size and type are all still adequate. This is the first formal sleep study Josh has had since he had diaphragmatic pacemakers implanted.

Published with Blogger-droid v1.4.8

Summer Trips, Back to College & more

2010-07-28T17:04:00.006-05:00

UPDATE ON JOSHUA

We have been trying to find things to do to get Josh out and about this summer (other than in the hospital). We took him last weekend to the state capitol in Austin. He really enjoyed seeing it and studied some more about it on the computer when we got home. Here are some pictures from the Capitol.

We also got him out over the 4th of July weekend to Lake Travis near Austin. We did a little fishing and watched fireworks on our drive back home. We got to see several displays that way - which worked out better than if we'd actually planned it. We took several pictures at the lake that turned out just beautifully.

Josh seems to be doing much better after being home from the hospital. We still don't know what caused his problems with his breathing even on the ventilator.

He was supposed to have a sleep study done about the time we got out of the hospital, but his lung doctor wanted us to wait until Josh was feeling better to do it. So, we scheduled it for August, before school started. Then, I got a call that they had a cancellation and we could go in this Friday night for the study. That is great news, because we'd like to get it behind us as soon as possible.

Then, Josh is set to go see the heart doctor again next week.

We also have some exciting news... Josh may soon be able to test out something called Neuro bio feedback. It is an alternative medicine therapy that encourages the brain to restore or re-establish connections, to make it work more effectively. We have found a doctor in San Antonio interested in giving it a try on Josh. His company is busy trying to obtain funding through a grant for a study. They are also pursuing some private fund raising for the research. We are very hopeful that this could be a therapy that could alleviate or at least minimize some of Josh's symptoms - including body temperature and hydration control, producing hormones and even breathing.

And we have been approached about another possible tv documentary project. I'll share more about it later as details become available.

Meanwhile, Josh is excited about the beginning of another school year because he will be in junior high. It'll be a new campus for him and changing classes. He is planning to take wood shop as an elective.

And his nurses are looking forward to his birthday coming up. They are making plans to help come up with food and supplies to throw him a big bash to celebrate his turning 14. What does Josh want for his birthday this year? A laptop computer of his own. He is sure he'll need it for schoolwork. He is not expecting anyone to buy it for him, though. He has been busy trying to earn the money for it by baking and selling cookies. If you want some, let us know. He makes all kinds out of cake mixes. His last batch was lemon flavored with dried cranberries as the stir-in. They turned out rather well. But he has made chocolate, chocolate chip and strawberry before.

Speaking of school.......

BACK TO COLLEGE
You would be amazed at how difficult it has been for me to try and get back into school.

Why back to school now????
It has been fifteen years since I last took a college class. Back then, I was working toward a degree in journalism. Once I got a full time job in TV news, though, I decided to stop taking classes and devote all my time to my job and family. But since Josh was diagnosed with a rare disorder that left him with a tracheostomy and ventilator, it became necessary for me to learn alot about respiratory care. So, I decided now that I have so much real life experience with the subject, it would be good to go back to school to get my degree/certification make it my career.

The plan:
I began working on getting back into school back in the spring. I had thought I'd take any pre-requisite classes over the summer and start the respiratory program at St. Philip's College this fall. It's a 2 year program, so I figured I could be done and working as a respiratory therapist by the summer of 2012. But things have not really worked out the way I'd hoped.

The troubles:
1. Accuplacer Test
Because I had been out of school so long, I needed to take The Accuplacer Test to determine if I could go into regular college level courses or needed refresher courses first. My scores indicated I needed to either take refresher math and English classes or study some more and re-take the Accuplacer again. I decided it was worth trying the test again. That paid off, because my re-take scores were much better and I don't have to take any refresher courses. Those would have been costly and time consuming.

2. HOLDS
I requested my transcripts from my past schools months ago. But when I first started trying to register for classes, I learned they had not received those from one of the schools - one that showed I had taken orientation before. Because they needed all the transcripts in to see what classes, etc. I had previously taken, they put a "hold" on my account - actually two holds: one for transcripts and the other for orientation. I had to re-request the transcripts from the one college and wait for it to arrive at St. Philips. Even after it arrived, the holds were not automatically removed. I had to physically go down and stand in lines to talk to various departments to get them removed from my account.

3. New Computer System
St. Philip's College just switched over to a new system called ACES which you have to use to register for classes. And it apparently still has bugs that have wreacked havoc on me. Those holds I talked about - once the were removed from my account were still showing up on my ACES page. And it took a week or more to get the proper people to take them off.

Oh, and I didn't mention that I had trouble first just getting onto the ACES page because it would not allow me to create and use a password the way the instructions read. I found this out just before the July 4 long weekend and had to wait for them to come back to work to try and reach somebody to fix that problem.

Once I had registered for my classes, I wanted to check to see how much financial assistance I would have. I signed up for financial aid back in early May and got a report saying I qualified for up to $2100 in a pell grant for this school year. I only registered for 7 hours this semester, so I thought it should cover that. Well, I had no place on my ACES page to access my financial aid information. So, again I was calling, emailing and finally going in person to try and find someone who could fix that problem.

MONEY
Josh and I went to St Philips this week to try and find out about the financial aid issue. We learned for some reason the college did not get the information from the Department of Education like they should have. They will have to re-request it from them. And because they will have to re-request it this way, I can expect they will definitely audit my form. That is okay, because I am prepared. I even had my income tax form with me for the financial aid folks to make copies of while we were there.

But the rep looked up to see how much I could expect the grant to cover, and it is maybe half what it will cost for tuition, fees and books - not counting the gas money to get back and forth to class three times a week! And I have no money in our budget to spend on going back to school. It is too late to even apply for any scholarships I know about. So, I will have to go in on the one day a week they talk to folks about special circumstance financing and plead my case. If that doesn't work, I will have to try and take out a student loan. But even if I get it, I won't see any funds until long after my tuition and fees will be due and after I will need to be using my books.

I believe I am supposed to go back to school and get my degree, but I am certainly hitting road blocks every step of the way. So keep me in your prayers as I enter this new phase of my life. I'd appreciate it.

Oh, I am still working at a daycare less than a mile from our home. I love getting to take care of and play with the babies (in my room, they are all under 2 years old). I just wish I could earn enough money to pay for everything we need by doing this. Oh well. Every little bit helps.

And the most important baby in my life.......

GRANDBABY NEWS

Logan is now 6 months old. He is doing quite well. He sits up with assistance and eats baby food fruits and cereal. He is such a good baby - very alert and happy most of the time. We are fortunate to get to see him pretty often. We also see his parents, too :) They are looking forward to his dad finishing up schooling for air conditioning/heating. And his mom (Steff) is looking for a better job to help bring in more money, too.

Home from the Hospital

2010-06-27T18:56:00.002-05:00

We spent a week with Josh admitted to the hospital. So what did we learn?

Josh's cultures did not grow anything unusual or concerning.
Josh's lungs look ok- no pneumonia this time.
Josh does have polyps in his sinuses, but they are not too severe yet. One in his left cheek sinus is the worst and we should schedule a surgery to remove it before winter, but not now.
His trachea looks good, no breakdown or scar tissue buildup.
Josh has grown so much that it was time for a new trach tube size for him, so he now wears a Bivona 6.0 cuffed TTS (tight to shaft) trach.

Since we were scheduled to see an oncologist for screening for tumors of neural crest origin this week and couldn't make it due to the hospitalization, that doctor came to order the tests at the hospital.

We also saw the neurologist who we planned to see again next month. Dr. Tomasovic said he would dictate a note for his records and we could just see him again next year. He did not want to order any new medications at this time.

The cardiologist also came by and reviewed his tests and monitors. She said nothing looked alarming to her.

So we ran out of this to check or treat, so they let us go home

We are just glad to be back. Hopefully, whatever was causing him to de sat and have extra high co2 is going away on its own. If not, we will have to call and sere if the dr can figure anything else to try or test for.

Published with Blogger-droid v1.3.6

Back in the hospital

2010-06-21T23:00:00.001-05:00

Josh had an episode this afternoon while taking a nap. He was hooked up to his ventilator but his oxygen saturation levels dropped even on 4 liters of oxygen. And his carbon dioxide levels went up into the 60s. His temp got up to 100.3 today.

Josh has been on antibiotics for almost 3 weeks for a chronic sinus infection. So, we think there is something more going on.

The dr has decided to admit Josh to the hospital to investigate the cause of whatever infection or ???

Josh is upset about having to be here. But I just want them to figure this out so we can be done with antibiotics and extra breathing treatments.

Published with Blogger-droid v1.3.5

Family visiting for father's day

2010-06-20T17:01:00.001-05:00

My parents came from Odessa this week for Steffany's high school graduation. And we had Steff's baby, my grandson, Logan for the night. Hope everyone is having a great father's day! I'll try to update on Josh's condition soon.

Published with Blogger-droid v1.3.5

Pulmonary Clinic Visit & Holter Monitor

2010-06-01T21:55:00.006-05:00

Today, we went to see Josh's pulmonologist at the pediatric specialty clinic.

Dr. Smith says Josh appears to have a chronic sinus infection. He suggested Josh use a Neti pot, or the like. And he showed us a video on youtube to demonstrate how you use it.
Check it out:

Dr. Smith also put Josh on an antibiotic for the next 21 days. And we've got Josh set up to do another sleep study in about a month, once he's finished the antibiotics.

Josh, as usual, saw the dietician and a representative from his new DME company, the Wave, and he did a pulmonary function test. Below is a video of Josh doing his PFT:

Here are the doctor orders from Dr. Smith, with all Josh's medications and vent/pacer settings:

After the doctor's visit, we decided to try and get Josh's blood drawn for the allergy panel Dr. Smith was wanting. We went to two different labs, but none of the techs could get a vein. They suggested we might try a heating pad to warm his arms and get the blood flowing better and try again another day.

So, then we went up to the cardiologist's office for our 1PM appointment to have a holter monitor placed. This is what a holter monitor looks like:

Josh will wear it all night and through school tomorrow. Then, we take it off, and mail it back to the office. They are looking to see if there are any pauses in his heart rate that could cause him to go into cardiac arrest or any other signs of heart troubles.

It's back to school for Josh tomorrow for his last FULL DAY of school. Thursday is early release and then it's summer vacation BABY!!!

Our next doctor's appointment after that is June 24th, when Josh is screened for tumors of neural crest origin. We don't think he has any, but he is required to be checked once a year for them anyway.

Kicking off Summer

2010-05-27T13:04:00.002-05:00

Joshua still seems to be trying to fully recover after his bout with swine flu and double pneumonia back in late January/early February. He had a cold on top of that. So, he has had some pretty rough times the last couple of weeks.

He is doing a special kind of breathing treatment called IPV (Intrapulmonary percussive ventilator). It “shoots” moistened air/medication into the lungs to help break up mucus. It works really well. Josh takes these breathing treatments at least three times a day.

Josh is graduating 6^th grade and will be moving up to junior high school in the fall. We have his graduation ceremony tonight (May 27, 2010) at the high school where his sister used to attend. She will be graduating high school soon. Her ceremony is June 23^rd. We are proud of both Josh and Steffany for their academic accomplishments. We also remember when they were both just starting school. It seems like it was just yesterday (well, maybe a little while before yesterday – but still hard to believe it’s been this many years that have passed already).

JOSH in PRE-Kindergarten

Josh about to graduate 6th grade

Steff graduating Kindergarten

Steff about to graduate high school

Our summer will be busy with visits to a number of specialists (for Josh). He goes to see both his pulmonologist (lung doctor) and to have a heart holter monitor placed on Tuesday, June 1^st.

June 24^th, he goes to a new oncologist (cancer doctor). Josh has to be screened annually for tumors of neural crest origin, because those have been seen in several patients with hypoventilation syndrome. Josh has never been found to have any of these tumors, but he’s still supposed to go get checked out for them just in case.

July 14^th, Josh sees his endocrinologist’s assistant. This will be the first visit to that office since he started getting testosterone injections (begun in early May – and he gets them once every four weeks). That specialist keeps track of sodium levels, growth hormone and testosterone levels, and pays close attention to Josh’s height and weight.

A week later, July 21st, Josh goes back to see his neurologist again. It has been a little while since Josh was seen by the neurologist, but we feel it is important to touch base with Dr. T. since he so closely monitors issues in the brain. Josh has some significant delays in his learning. We think it is due to possibly long periods of time that Josh went without enough oxygen to his brain. We hope his brain injury isn’t so significant that he can’t recover.

Then, unless there are any scary results from Josh’s holter monitoring back in early June, he will see the cardiologist (heart doctor) August 3^rd. The holter is being done primarily to check if there are any significant pauses in Josh’s heart rate – because if they are long enough pauses, they could send him into cardiac arrest. If there are any long enough pauses noted, he will need a cardiac (heart) pacemaker to be implanted. But the doctor also monitors him because he has so many periods where his heart will race and episodes where his heart slows way down. We think, like most of the other weird things his body does, it is just not reading accurately

what is going on in him. And his body reacts like something is happening when it is not.

Josh is also looking forward to some recreational opportunities this summer. He really wanted to join a sport camp at school. But since we are not sure if that would be appropriate with his pacemakers and disorder, he are opting instead for a church camp (kind of like a vacation bible school thing with a sports theme). He will participate (as long as he’s healthy enough at the time) June 9^th-11^th in a basketball themed “camp” at Everyday Christian Church. We went yesterday (May 26^th) and turned in his registration form. And Josh is really looking forward to participating.

Other than that, we are working hard, still have our house on the market – though we are considering just taking it off and staying put – and trying to keep everybody’s cars/vans/trucks running. And of course, every chance we get to spoil that new grandbaby, we do that too!

Logan is 4 months old now!

Happy beginning of summer everyone!

Josh Health Update, New Vent, DME, Diet, Possible Move & More

2010-04-12T07:33:00.011-05:00

Josh's Health Update

Since Josh was hospitalized in late January/early February with H1N1 Swine Flu and double pneumonia, he has not really seemed to 100 percent recover. His lungs have had extra amounts of mucus build up and he's had trouble getting rid of all that nasty stuff. We've been giving him a generic Mucinex, extra Cortef (steroid) and sometimes Ibuprofin (when his temp was up). Still, he has rarely missed any school with it.

He has gotten some extra sleep. We've been working on a schedule for his bedtime routine with times on each activity so he can check it off and see his progress. It has helped him get to bed earlier, so that is great. Then, Saturday, he slept in till Noon. But that extra rest seemed to do him lots of good.

He had a particularly good weekend health-wise. He did not require any extra medication or oxygen over the weekend. So, that is GREAT news. And he felt up to going to the grand opening of Morgan's Wonderland Saturday afternoon/evening then to his dad's company picnic and even to play games at AWANA at church Sunday (he hasn't participated in games in quite a while).

Last night, even without a nurse, we had a quiet night because Josh's numbers were so good. He woke this morning with very low CO2, high Oxygen saturations and his temp was 97.2. He felt very good as he got out to the bus. We are hoping for a successful week of school this week.

New Ventilator (& DME - Durable Medical Equipment Provider)

I had written back when Josh was in the hospital that he may be getting a new kind of ventilator. Well, that HAS happened. His new ventilator is the Trilogy 100 by Respironics. It replaces his old LTV 950's he has used since coming home with his trach and diagnosis in the fall of 2005.

The Trilogy ventilator is like the cadillac of vents. It weighs only 11 pounds, very portable, uses regular bi-pap tubing/circuits. It is quiet and has the PEEP (Positive End Expiratory Pressure... a setting on his ventilator) internally set. This is better than the LTV 950, where you had to dial in the PEEP setting on the actual circuit and then it would not stay the same. It would always vary. Those dials on the circuit for the PEEP were very sensitive and could break easily which would ruin the entire circuit. The Trilogy even has a SD (ScanDisk) card like you use in a camera/computer that saves all sorts of information that your doctor can look at when he/she wants to help make changes needed. The digital display on this new ventilator records all events and alarms, so you know the exact moment they happened. It records everytime you make a change to number of breaths given per minute or change of pressure control or pressure support. That is helpful in checking to see how Josh's night went with his nurse, when he/she increased or decreased something.

Below is a video I took of Josh sleeping while hooked to this new Trilogy ventilator:

The main complaint with this new ventilator is that the screen is so bright - like a tv screen shining in your face while you try to sleep. So, I have taken a lightweight towel and cover the screen. We can move the towel when we need to look at the screen, then put it back afterwards. We still have his End Tidal CO2 monitor and Pulsox monitor showing, so we know his numbers are good or when something needs to be changed. And those monitors as well as the ventilator alarm when they are supposed to, so covering the screen is no big deal.

We also decided it was in our best interest to change the company that provides Josh's ventilator, monitors, oxygen, etc.

We were using Gentiva. But it was bought out by Lincare. When that happened, they insisted they would still be able to take care of us, so we stayed with them. But the doctor was ordering new equipment (which we never got) and wanted Josh on this new ventilator. I had put in calls to Lincare/Gentiva a few times and never got my calls returned. Finally, upon another visit to the lung doctor, where we discussed the problem with the doctor and his staff, we decided we should change companies.

As luck would have it the owner of The Wave Healthcare, Rodney Gray, was at the clinic while we were there and was sent in to get us started on making the switch.

Today is the day the folks from Gentiva/Lincare come by to collect the old ventilators, their batteries and oxygen concentrator and cylanders.

It took awhile just to hear back from that company about what was owned and was was rented to us so we could arrange for them to come get their stuff. We had to make sure we had everything we needed from the new company before we could let this stuff go back.

So far, we are pretty happy with The Wave Healthcare as our Durable Medical Supply company. But there could be another change in the near future because of.........

James Applying for Manager's Position in Odessa

Yes, there is a possibility we may move back to Odessa. The manager's position became available at FedEx Freight in Odessa. Some of James' buddies who work there encouraged James to apply for the position and he decided to do it. He has NOT heard anything back yet, so we have no idea what will happen. Of course our parents and other family members back in Odessa are very hopeful that we will go back. And we'd love to be able to see them more. But the move, if we should make it, would be very tricky and also be quite sad.

It would mean first of all, leaving Steffany and her new family (our new grandbaby!!!!) behind in San Antonio. We have really enjoyed being close to them and getting to keep little Logan around pretty often. We would miss them terribly!

It would also mean having to figure out how to make a change in Josh's DME supply company again - from one in San Antonio to one in Odessa - without being down any important medical supplies - like a ventilator or oxygen, etc.

And we would have to make plans for a new nursing company, finding and training new nurses both for home and for school. We love our nurses we have now and would miss them terribly too! They are so much like members of our family, too.

We would have to find and train doctors in Odessa on Josh's disorder and all of his medical equipment. Remember, Josh's disorder is very, extremely rare. It has taken years for the doctors we have here to begin to get an understanding of just what to expect from Josh and how to deal with everything.

And transitioning to another school district now that we have one here who knows Josh, and at least somewhat understand him would be hard, too. The school district here has hired a special nurse to accompany him on the bus, to and from school. And she stays with him throughout the school day. He's got some of the best teachers around working with him who are familiar with him and his progress. It would be difficult to make the transition.

And we would have to HAVE to sell this house (remember, it's been on the market for over a year with not a single offer) so we could move away. This house is a nice home with four bedrooms. It's only 6 years old in a nice neighborhood, close to I-35, two miles from HEB and Walmart, all sorts of restaurants, gas stations, etc. So everything is pretty accessible. And we are less than an hour drive from several lakes and rivers where we can go fishing, etc. with relative ease.

We are NOT really looking to move away from this area.... UNLESS it is God's will. Since the manager's position is something that opened up there, so close to our families and where we came from, we see it as a possible door opening. If James gets the job, we believe God will take care of our needs there. And He will take care of the sale of this house. We have been praying about it and are trying to leave it all in the hands of the Lord. So, you might pray with us that God's will be done and that we might accept it whatever it is. Thanks!

New Supplements & Diet Change

There is also a change we've made to Josh's regimen of supplements and his diet. It came about for a funny reason, actually. One of his nurses was worried her husband had fallen prey to a scam - something he'd seen on TV and ordered a free trial. It was for something called the Acai Berry. It came with some kind of colon cleanser, too. It was supposed to be something that required a credit card number but that if you called to cancel within so many days, they would not charge your card. But there was some problem with the company having the records right and the charge showed up anyway.

After the nurse told me about the probable scam, I decided to read up on it for her. I am an avid researcher, so I started reading everything I could find online about the Acai Berry and Colon Cleansers. It is amazing what you can read about these things.... not to mention the vivid pictures people post from the colon cleansing experiences (pictures of people's poop)- YUCK!

(below are some pictures of websites I read from... and no, I will not include the poop picture ones. If you want to see those, you can Google colon cleanse pictures and see all of that you want)

But in doing this research, it got me to thinking of Josh's symptoms - well, some of them. See, way back when Josh was in the hospital that first time (March 2005) his belly was not big at all. But when he got out of the hospital, and he was on steroids, his belly blew up big really fast.

One of the visits to the ER in the weeks after his discharge in the spring of 2005, a doctor had an xray done of Josh's belly. That doctor mentioned there was alot of stuff built up in his lower intestine. He ordered an enema for Josh done at the hospital, then sent him home. But nobody ever really followed up on it, to see if he needed anything further. Josh's bowels did move, so we never really did anything more about it.

Well, for the last few years, we have noticed that when Josh goes to the bathroom (for #2) he is in there a really long time. But when we ask if he is constipated, he tells us "no" and leaves it at that. I have not really wanted to press the issue since he goes through enough as it is, so I just left it alone.

Now thinking back on it, I wonder if I should have done more. What if Josh does have a blockage in his lower intestine that has caused his belly to get so big and hard. He has had such trouble bending over. What could it hurt to make a few changes to try to get his colon/lower intestine cleaned out a bit. We wouldn't do anything too drastic. And after reading and reading and reading on the subject, I decided on a plan of action... and explained it in very simple terms to Josh to make sure he was okay with it.

I told him..... his tummy might be extra big and feel hard because he might have some extra poo stuck inside the tubes it goes through in his belly. That can block in stuff that should come out. And there is an easy way to help get it out. First, we need to eat foods with as much fiber as we can. Next, we need to drink as much water as we can. And we can buy these pills, called Colon Cleans (very cheap at Walmart) and take them each night at bedtime. All this will help loosen up what's inside and help it come out easier. It MIGHT help him loose some of that belly and make it easier for him to feel like exercising. He was excited about trying this and went right away to our pantry to start looking at how much fiber was in pretty much everything in there.

So, we began. And the results have been pretty amazing. Josh starting having more frequent BMs and he does not take nearly the time in the bathroom he did before. Plus, his belly is much softer now. And a few days ago at school, when they weighed him, they reported to him that he'd lost some weight. We go to the endocrine doctor later this week - who looks very closely at his height, weight and body mass index - so we area excited to see what they have to say there.

I have also - in my research - discovered it might be beneficial to give Josh a melatonin pill each night. That research came from our nurse mentioning to James he might get better sleep (since he has to sleep days and work nights) by taking Melatonin. Of course, you know I had to research that for him, too. I have found many studies that show Melatonin could be linked to things like help for cancer patients, weight loss, and many, many other things.

Here are some pictures from websites with info on Melatonin research:

Melatonin is something your body produces (or is supposed to) much like it produces various hormones. I got to thinking how Josh's body does not produce certain hormones like it should, so maybe it was not producing the melatonin at the right times or something, so it was worth a try. It seems to have no negative effects on Josh (or James, who is taking it when he needs to sleep, too). So, all is well on that front.

One more note - during my research on hypothalamic obesity, I came across a study of something called Octreotide - that was given to some people suffering from hypothalamic obesity. It had some great results.

But I have not heard from our doctors about it as a possible for Josh. So, I do want to print out some information on it to take with us to the doctor later this week. So, maybe that will be the next thing we give Josh. Maybe.

Dad's Company Picnic Fun

I'll end today with some pictures from us enjoying James's company picnic yesterday (April 11th). The day was kind of dreary and cool. But we still had a great time and we each won a little something. There was a volleyball tournament, golf challenge, dizzy bat contest, hula hoop contest, bingo and bar-b-cue. It was great fun for all of us.

Oh, and Josh even got his arms painted - a green snake running up one arm and down the other. He wanted me to take several pictures of it because he had to wash it off last night before he had school today.

Morgan's Wonderland Grand Opening

2010-04-11T20:36:00.012-05:00

We are fortunate enough to live very near an awesome first-of-its-kind theme park for children of all ages with special needs.

Saturday, April 10th marked the park's grand opening ceremony.

We were there to experience it and get our first look at the park.

Check out this 2 part special report about Morgan's Wonderland by a local news station, KSAT 12

About ten thousand other folks were there for the grand opening along with us.

Some of those who participated in the opening ceremonies were Actress and wife of Spurs Basketball player Tony Parker - Eva Longoria-Parker, and former Spurs Basketball great David Robinson.

The park opened its gates to all us visitors at 6pm.
Before that, we lined up in front of the main visitor's center.

Some Star Wars Characters were there, too.

Darth Vadar even posed with Josh for this picture:

One of the first things we checked out in the park was a off-road adventure ride.

Here was Josh waiting in line to get on the ride (see the jeep cars behind him. They are loading a guest who is in a wheelchair into that one).

Josh insisted he wanted to be in the driver's seat.

And still, we all rode with him :)

we made it to the finish line :)

Josh tested out the remote control pirate ships

and the water canons

and before we headed out,

we played in the water works area

the lines were very long (with all those people there) to ride the train or check out some of the other great features. So, we are planning to sign up for a return visit, when the park will be a little less crowded.

The great thing is, it does not cost anything for Josh to go to the park (because he has special needs) and it should only cost those of us accompanying him $5 each.

Family Portraits

2010-03-24T08:34:00.004-05:00

Our niece came to visit over spring break. She is a professional photographer, and agreed to take our family portraits. She also took our daughter, Steffany's cap and gown pictures and much more. Take a look at these... which are just a few of the many, many GREAT portraits we got:

Mom & Josh sick, Deer Heads Arrive and Decision about School

2010-03-08T20:33:00.006-06:00

I have been meaning to update my blog for SO LONG... and I just never get the chance to do it. So, I have decided I am going to get it done TODAY! So, this one will be long... but I'll try to include lots of pictures to help break it up... so here goes....

DENTIST
I had to go to the dentist Tuesday, February 16th. I didn't think it would conflict with work since the appointment was 9 in the morning and I didn't have to go in until Noon. But I was wrong. My mouth was so numb and I felt so miserable that I really didn't feel like I could make it through work. I really needed a nap. Then, Josh's nurse called to inform me he wasn't doing too well. She asked me to bring some medicine to him and I asked her to call Josh's doctor. We finally got ahold of the doctor who wanted me to bring Josh in to have a chest xray and a sputum culture as well as bloodwork (Josh's least favorite thing). Luckily, I got a chance to eat and take a nap before we had to leave for the tests.

Here is a picture of me feeling miserable after getting home from the dentist's office.

Here is Josh at "Kids Express" where he went for the xray, culture and bloodwork:

I'M SICK
I had been coughing a few days and even hacked up some yucky crud. But I hadn't run any fever, so I wasn't too worried about it. I promised myself if I ran any fever at all or showed any other signs that could be flu, I would go to the doctor. Well, that finally happened Wednesday night, February 17th.

I had come home from work and Josh was asleep on the couch. He was still recovering from his bout with double pneumonia and trying to get back into the swing of things at school. So, James and I left Josh with his nurse and we went to get a quick bite to eat before James had to race off to work. I didn't feel well while we were out. My chest was really feeling rattly. My muscles were a bit sore. And when I got back, I decided to take my temp. I usually run low - in the 97s. My temp was 99.2. I knew that was the beginning of fever for me.

With a little encouragement from Josh's nurse Jenny, I decided to head over to the Texas Med Clinic to get myself checked out. I wanted to make sure if I had developed flu and/or pneumonia, I would get the proper medicine/care ASAP and nip it in the bud. I also didn't want to infect my sweet little grandson or any of the kids at my daycare.

My temp by the time they took it at the clinic had risen to 99.7. The doctor heard a rattling in my chest and ordered a chest xray. My blood pressure was a little elevated and my heart rate was a bit higher than my normal - but nothing too bad. After reviewing the tests (flu test and chest xray), the doctor decided I did not have the flu or pneumonia but rather a bad case of bronchitis. He prescribed an antibiotic and a cough syrup and sent me home and ordered that I get some rest.

When I got home, I took my temp again, and it was 99.9. I took some ibuprofin which broke my fever before long. I have not run any fever since that night. And I've tried to get extra rest.

I've had good days and not-so-good days since, but I think overall I'm still sick... and now it has been about three weeks later. And now, I think I've got a UTI (urinary tract infection) to go along with my bronchitis - yay!

So, I have a doctor's appointment for myself Wednesday morning, March 10th. Hopefully that will fix me :)

NEW GUY NURSE
Josh was supposed to have a new nurse - a guy nurse - about the time he went into the hospital for double pneumonia and the swine flu (back in mid to late January). Well, while we were in the hospital, we found out the new nurse didn't pan out (not exactly sure why not, but we were disappointed anyway... Josh has wanted a guy nurse for a really long time - if he's got to have a nurse, he wanted one that was a guy).

Well, I am happy to report that Josh finally got his wish. Nurse Miguel started on with Josh Friday, February 19th. He seems like a very nice man and gets along well with Josh. Miguel is still learning new things about Josh every shift he works. Some of the main things I think surprised Miguel most are that Josh can have major mood issues and is very OCD (obsessive compulsive disorder). But Miguel is taking Josh in stride. So far both seem fairly happy with the setup. And our other nurses seem pretty happy with him - so that is a relief! My goal is to have all our nurses happy and working together to care for Josh in harmony :)

JOSH HAIRCUT
Josh was really getting scraggily looking and had been bugging me for over a week to get his hair cut, so we finally went and did it Sunday afternoon, February 21st. We actually managed to get the oil changed in the van, do a little grocery shopping and get the haircut for Josh - all in one stop at Walmart - in around an hour! We made it home in time to get changed and head for church to attend AWANA with Josh's new guy nurse.

Here is Josh getting his hair cut:

MY LITTLE *ROHHAD* WORLD
I keep in touch with and keep track of several families of kids with ROHHAD (Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation) like Josh has. There are two new families since Josh was hospitalized that I have had contact with. I will not use their names here (in case they'd rather not have me share them with the world) but one is a little girl who suffered respiratory failure on my birthday. I spoke to her parents while Josh was in the hospital. They chose to go ahead and get her a trach. She is back home and doing well. The other is a little boy who is also autistic. His mom is trying to get him in to a specialist. She is seriously considering a trach for him. And she is working on getting him nursing care in their home - which will sure help this mom out.

There are not many days that go by that I don't check in to see how all these kids I know about who have ROHHAD are doing. Josh and I pray for them nearly every night. There are some of the kids who are undergoing treatments as sort of an experiment to see if they will stop the progression of ROHHAD and undo some of the damage already done to them. The parents are very hopeful and at times report some positive changes - but still no cure. And, there have been some setbacks associated with the treatments. And I worry about these sweet little souls going through so much.

*AWANA* GRAND PRIX
On February 27th, Josh and dad James participated in our church's AWANA Grand Prix races. I had kept our grandson, Logan overnight, so he was with us for this very exciting event. Here are some pictures from that day:

James' car

my sister sitting with Logan

Josh happy to be at the races

Josh's car

special guest Emcee... Jerry Thomas (back from Mississippi)

Josh helping Logan with his pacifier

me holding Logan

JOSH DOCTOR VISIT
Tuesday, March 2nd... we went to see Josh's lung doctor, Dr. Smith. Nurse Miguel came and went with us. It was a regular clinic visit/follow up from the hospital visit and even turned into a sick visit, because Josh has been having very runny but stuffy nose and running a bit of a fever. Josh has also had major mood issues and low oxygen high CO2 even on vent or pacers.

Dr. Smith ordered some blood work (which could not be done - his arms were so cold and his veins too clamped down and/or rolled) and prescribed some new meds - antibiotic amoxycillin for a suspected upper respiratory infection, and for suspected allergies zyrtec and a nasal spray. Josh was super duper sweatty this day and was very much NOT-happy with the attempts to draw his blood. It was a really long and stressful day. Dr. appointment at 8AM. We didn't get home until after 4PM. And we weren't able to get all his prescriptions filled until nearly 8PM.

DEER
But one good thing that came from this very long day March 2nd is we FINALLY got the deer mounts. The taxidermist lady from Del Rio brought them all the way to us in San Antonio. She even met us at the hospital where we were for Josh's doctor's appointment! Her husband loaded them into our van for us. It looked like we were driving around with two deer looking out our van's back window! When we got the deer heads home, James brought them in and later found new homes for them on the living room wall. Check out the pictures:

Carmen Cantu, the taxidermist, really did a spectacular job with the deer mounts. I sure would not want to have to try to do this kind of work - but she is GREAT at it!

JOSH STILL NOT 100 PERCENT
Josh is still not fully recovered from his illness - even after almost a week on antibiotics. His heart rate has been extra high for several days. It's been as high as 140's while he's just sitting on his bed.

He spent one day last week home from school where he slept until almost 1:45 in the afternoon. The next day, we tried sending him to school. When he came home, he fell asleep around 4PM and didn't wake up the rest of the day. We had to force him to wake up to eat dinner at like 10:40PM, so he could take his night meds. Then, he went up and to bed around 11:30 and slept the rest of the night. When he woke the next morning, he said he felt miserable and didn't think he could make it to school. So, I decided not to push him further.

So, he missed all of last week of school except for the one day. He made it today (Monday), but his heart rate has still been high. I'm hoping this resolves soon. He was given 21 days worth of antibiotics this go around. But so far, I don't see them working.

NEW DME (Durable Medical Equipment) SUPPLIER
Oh, we have decided to make a change in the company that provides Josh's ventilators, etc. For a while now, we have had Gentiva. And they were doing just fine. But they were recently bought out. When this happened, Josh was in the hospital and his doctors were afraid he would be dropped from their service. So, we thought about changing to another company known as The Wave. But back at home, the company that bought out Gentiva called and promised they would still take care of us with no problems. So, we held off.

Meanwhile, Josh's doctor wanted him to get a new kind of ventilator and some equipment for him to take breathing treatments. This company was supposed to see about ordering them for Josh but did not bring them. And when I called to find out why, all I got was voicemail and my message was never returned.

So, when we were at Dr. Smith's office for the March 2nd appointment, we saw the owner of The Wave and discussed everything with Dr. Smith. We signed papers to change to The Wave right then. So, we are expecting to have to change out equipment, etc. once again any day now. But we hope to finally see a new ventilator for Josh - The Trilogy. Once that happens, we'll give everyone a better look at it and tell you how Josh likes it.

MY DECISION ABOUT SCHOOL
And after a great deal of thought and prayer and discussion with nurses, etc. I finally, Thursday, March 4th, made a decision regarding returning to school.

I never did finish my degree way back in the 90's. I dropped out after I was already working in TV news - which is what I thought I'd be doing the rest of my life. But after I feel I was led out of that line of work a few years ago, I've been trying to figure out what God meant for me to do - write a book or go back to school - and if so, to do what exactly.

Many times, I thought perhaps I would go back to school. But I had always opted out of it because we were still in debt and I didn't want to pile on more. I was worried I would not be able to commit to a job the way I feel compelled to do because of my need to be with Josh when he has medical problems - like when he recently ended up in the hospital for almost two weeks with the Swine Flu and double pneumonia. So, I thought it would be next to impossible for me to get and/or keep a good paying job. And I couldn't imagine having to pay back a school loan while not being able to earn a good paycheck. So, I always dismissed that notion.

But I finally decided to throw caution to the wind.... or to take a step out on faith... as I learned to do when I accepted that job with the Permian Basin Rehab Center back when I left my job in TV news after 9 years. I really feel God is teaching me things that He intends me to use somewhere besides just here with Josh. So, I decided if He is leading, He will provide. So, I have applied to a local college to take classes for a degree in respiratory therapy. I have also applied for financial aid. I still need to talk to a counselor and take whatever tests for placement to get started. I expect to take whatever pre requisite classes I need over the summer and to start the program in earnest in the fall.

Please pray for me as I take this GIANT LEAP of faith that we don't build up a great big pile of debt, that I can do well in school after all these years, that I will have the energy to keep up all that I am doing and that I am on the path God has for me.

Back Home and Loving that New Baby

2010-02-16T07:55:00.000-06:00

After 10 days in the hospital with Josh with his H1N1 Swine Flu and Double Pneumonia, I was ready to see my new grandbaby.

Steffany came and brought him to see us Thursday, February 4th.

Josh was still not doing well enough for us to be comfortable having him walk up and down the stairs, so he was sleeping on the couch.

Nurse Jenny was with him and finally got her first chance to meet baby Logan.
She took this picture of me holding Logan:

and I took this picture of her with Logan:

Josh saw the baby but wasn't especially anxious to hold him or even touch him yet. He did smile for the picture of us all together, though.

Once Josh got feeling better, we had Steff and the baby over again (Feb 7th). This time, it didn't take him long to warm up to that sweet baby. I think Josh is really enjoying being an uncle.

Here is Josh's first time holding the baby..

Check out that smile!

This time, Josh and Steff's dad, James was home and got to visit with his grandson ;) .. he even got to feed him. (James was at work the first time Steff came with Logan)

My parents got to come for a visit and to see the baby the weekend of February 13th.

Here is my mom with baby Logan.

and here is my sister, Amanda loving on her great nephew.

Josh had SWINE flu!!

2010-02-04T11:12:00.005-06:00

Saturday (Jan 30).. the day after the small fire in the hospital and the evacuation... we got the news that the flu that caused Josh to have pneumonia in both lungs is infact H1N1 Swine flu.

That news was not completely a surprise to me because Josh had had a flu shot but not the H1N1 yet. But Josh had heard of people dying of H1N1 Swine flu on the news and even a friend of one of his nurses had died of it. So, it immediately scared him. I reminded him that he didn't even think he was sick before we went to the hospital. And that he was well on his way to recovery already. Josh kicked Swine flu's butt :)

Also on Saturday (Jan 30), we found out that a preliminary blood culture result showed a gram positive... meaning there is a bug somewhere that is resistant to the current antibiotic (rocephin) so we changed to Augmentin (which Josh takes in a big pill)

Josh started experiencing some pain in his chest on the right side. After a chest xray Saturday afternoon, we learned that most of the area in his lungs were clearing well, but the bottoms - especially on the right side still had fluid that needed to come out. Josh's doctor said we needed to get him up as much as he could and get walking around, etc. He had more breathing treatments, and we even tried (with the doctor's recommendation) putting Josh's pacer antennas on and turning the breath rate down to the lowest setting while Josh was still on the ventilator. That way the vent would register the pacer breaths as patient initiated breaths and would set itself around them, so to speak. Josh said it hurt, but only for a little while. It did cause him to cough up more mucus, which is what we were hoping for. That allowed him to bring up his oxygen and lower his carbon dioxide levels. But it also tired him out and he was ready for a rest afterwards.

Sat January 30, 2010 5:00pm Josh's chest xray

Saturday (Jan 30) evening, after the xray, I left the hospital long enough to go get some more clean clothes and more of Josh's home medicines we needed in order to stay in the hospital a little longer. We were hoping he could go home in a day or two, though.

By the time I got back, Josh had developed a fever again of about 101.

All night Saturday night/Sunday morning, Josh ran that fever. They gave him tylenol and motrin and even extra cortef (steroid) and nothing brought it down.

Josh today with just his pacers on... (without ventilator)
Sun January 31, 2010 at 12:13pm

had Josh on pacers about an hour but his sats started dipping and his eyes turned glassy so I stopped the pacers and put him back on his ventilator. I think his blood pressure may be a little low, too
Sun January 31 at 1:36pm

Sunday he seemed better than Saturday but still running fever.. they did a blood gas and I'm waiting for results. He is off oxygen right now and on his normal vent settings at the moment, so that is good but when I put him on his pacers he started desatting, so he's pretty worn out
Sun January 31, 2010 at 3:01pm

the ipv machine blasts little blasts of pressuring air and saline (or another med if the doctor orders it) in the trach and down into the lungs in little shots. It uses pure oxygen. It does a good job of cutting up the crud and forcing it up and out. And the pacers force the diaphragm to contract and then release, causing a big breath whether you are ready or not. It sure makes Josh's lungs expand and he gets some good breaths. It makes him cough up junk too.
Sun January 31, 2010 at 5:02pm

latest reports are looking good for Josh - other than his fever (100.6) - his blood gas CO2 41 and O2 96... if this continues maybe we can go home tomorrow!!!!!
Sun January 31, 2010 at 5:07pm

Sun Jan 31, 2010 at 5:08pm

We were hoping to get to go home today but Josh still running fever and desatting. Dr ordered a respiratory panel to try and find the problem.
Mon Feb 1, 2010 at 10:55am

Josh is on his pacers and satting well. And he just had his picc line removed. Still has to get a regular iv line placed tonight
Mon Feb 1, 2010 at 6:56pm they did not put in the iv line, afterall

Dr Smith says he wants to ensure blood culture is negative and respiratory panel is good before sending us home. He is shooting for tomorrow.
Tues February 2, 2010 at 7:46am

Josh has had episodes of chest pain which started up again this morning and was last in his right shoulder. His doctor has ordered a chest xray. We're waiting for them to come get him for that now.
Tues February 2, 2010 at 11:04am

chest xray done.. haven't heard results yet... respiratory panel came back negative... waiting to hear what the doctor says about the chest/shoulder pains Josh was having. Oh, and Josh and I will do a TTM with the pacers soon
Tues February 2, 2010 at 12:50pm

just heard chest xray shows a little more fluid on the right lung which is probably the cause of the pain and the lower oxygen sats today...
Tues February 2, 2010 at 1:41pm

one thing that Josh and I have decided seems to help his chest pain is using the ventilator along with the pacers (on a very low breath rate)... it hurts a little bit but makes the pain go away after a few minutes. It seems to force out the fluid.
Tues February 2, 2010 at 9:38pm

Dr Smith says we can go home this afternoon!
Wed February 3, 2010 at 8:37am

Wait til Monday to return to school if he seems well enough.
Wed February 3, 2010 at 8:52am

left the hospital around 11am. It was pouring down rain outside!

We made it home through the cold and rain with Josh on the ventilator. Phew!
Wed February 3, 2010 at 12:24pm I had nobody else with me, so it was a nerve racking experience

been busy since we got home from the hospital... unload everything in the rain, doing laundry, clean out fridge, go grocery shopping, meet with nursing case manager, cook dinner, pick up Josh's prescription... and now, watching a movie with Josh and his nurse
Wed February 3, 2010 at 9:38pm