Discovery Channel Documentary

about my son,

Joshua Wooten

Life or Death:

Battling to Breathe

Premiers in

the United States

Thursday,

November 8, 2007

at 1PM Eastern/12 Noon Central Time

CLICK HERE for more information on the series and Joshua's documentary

Thursday, February 15, 2007

Days of Documentary Filming

If you've been reading my blog all along, you know that Joshua (and the rest of us) are about to be famous because a tv crew is doing a documentary on Joshua and his illness for The Discovery Channel.



Our on-camera interviews were filmed this week. I was chosen to go first - well actually one of the doctors who treated Joshua was first - but I was first amongst the family members to get in the hot-seat. My interview on Tuesday lasted nearly 5 hours!!!! Of course there were many noise distractions and we did break for lunch during that time. Some interesting behind-the-scenes notes about the shoot.. mine was set up in our kitchen. And to reduce the noise, the crew had to turn off the air and even unplug the refrigerator! They put their keys in it to help them remember to plug it back in when we were all done!



After my interview, the crew had to move around lots of furniture and lights and screens and camera, etc. to set up for interview #2 - Dad (James). His interview was much shorter - but quite important - especially because James was there with Josh the early morning when he went into respiratory arrest and nearly died! But James was careful not to get emotional on-camera, saying this wasn't about him and his emotions after-all - it was about Joshua.

Check out James in the "hot seat"

Below is the producer, Iain.
He and most of the crew came over from London.

Another change of scenery for another interview. This time, big sister, Steffany took the hot seat. Her interview Tuesday late afternoon actually did not get underway until around 5:45 or 6PM! I sat in on her interview and realized she gave a couple of really good "soundbytes" and I'm sure we'll see them in the finished product.



Josh got to hide out pretty much all day Tuesday in his room, playing a golf video game. And, as you can imagine, that didn't hurt his feelings one tiny little bit! But the crew promised him, they'd have a wee chat with him on Thursday then have a little fun afterwards.

Here is Josh hanging in his room while Mom and Dad are interviewed

Below, my sister, Amanda hung out with Josh in his room
during most of Tuesday's filming.

Wednesday, two San Antonio doctors - Morse and Tomasovic - went before the camera to give all kinds of medical details about Joshua's diagnosis of Late-Onset Central Hypoventilation Syndrome with Hypothalamic Dysfunction.




Then, this morning, as promised, was Joshua's turn. The boy of the hour! I helped the producer ask Josh the questions after he saw Josh respond quicker to me. I was happy to help. Josh gave some great, quick answers. And he seemed pretty thrilled about having the lights and camera on him - even if he did NOT like to have to be the one wearing the trach and hooked to the ventilator.

Josh's turn below:

Once the cameras and equipment were set up outside, and Joshua and I mic'd up, the action moved outdoors (in around 40 degree temps) for a fairly long game of catch. We walked outside our house, stood in our front yard and threw the baseball back and forth.. and back and forth.. and back and forth.. so many times, I think both of us were completely exhausted by the time the crew yelled "cut!"

The guys in the crew thanked us, packed up and was off to the airport to catch a plane to Chicago. That where they will interview a specialist about Central Hypoventilation. Dr. Debra Weese-Mayer did the sleep study on Joshua back in late September and found that Joshua needed to be on the ventilator 24 hours a day. She is also the one who is looking for funding so she can perform genetic research into the cause of this illness Joshua (and a few others) have.


The one hour long episode on Josh will be among six (at least) in a series to be titled, "We Can Rebuild You" and will air on the Discovery Channel sometime in the near future - once each episode is filmed and edited. We'll let you know once we get word on the airdate! So Stay Tuned....

Sunday, February 04, 2007

Great News! Great News!

Current mood: jubilant

Category: Religion and Philosophy

At church today, Josh told me he wanted to be baptized.

I told him he needed to go tell the preacher about it.

So after church, he walked over to the preacher

and waited patiently as others greeted

the preacher and left.. waiting for his turn

to talk alone with him. When finally it came time,

Josh did tell the preacher of his wish to be baptized.

The preacher asked him

if he had placed his faith in Jesus as his saviour

and Joshua told him "yes" he had done that.

So the preacher told us he would come visit us this week.

He also asked Josh when he wanted to be baptized -

they could do it next week. And Josh said yeah, next week.

Then we returned home to learn that my father-in-law,

at his church today (our hometown church in Odessa)

had also made a decision. He walked the aisle today

and made his profession of faith known

as well his desire to follow the Lord in baptism!

What's more is that neither grandfather nor grandson

had any idea they were both making those decisions

at precisely the same time in two different cities

and churches.... WOW!!

GOD is good.. all the time!!!

1:24 PM

_______________________________________________

Wednesday, January 31, 2007

Medicaid Update

Current mood: distressed

Category: Life

Well, I've just learned a bit more about how

this Medicaid Waiver thing works.....
Apparently, Josh does NOT get a

Medicaid number nor a card

until 30 days past the date

he was admitted (overnight)

into the nursing home.

I have no idea why that is - but apparently

even the case worker at

the Department of Aging and Disability

handling our case did not know that until today.
So, all the mounting bills are still piled on top of us

and still no help from Medicaid as of yet -

-not with the growth hormone shots

(our co-pay is $150 every month for those),

- not for the hospital bills

(our part of the bill from Rush Hospital
is well over $5,000),

- not for the many, many bills
from when Josh has to have bloodwork
(like today - each one costs us about $50).

And we have set aside money in a flexible spending account

so that what we DO pay in medical costs will be tax-free.

But that means the money comes out of the paycheck

and there is less for us to budget for things

like groceries, gas, mortgage, utilities, etc.
So, anyway you slice it - we are BROKE!!!

It feels awful to be broke.

Please GOD, help us to get out

from under all this debt -

PLEASE.

Please everyone, keep us in your prayers -

and pray that Josh's bloodwork that he is about

to have done shortly (this afternoon)

will have good results.

Thanks!!!!

Vanessa

1:18 PM -

______________________________________________________

Friday, January 26, 2007

This one's about my daughter, Steffany

Category: Life

I just had to share these funny pictures with you.
They are of Steff - my 15 year old step-daughter.
She and my sister, Amanda decided it would be spa night

complete with chocolate facials!
Steff went first and here is the result:

I did NOT join the girls in this one

but they assure me it made

their skin feel much smoother

I'll take their word for it
:)

10:21 PM -

__________________________________________________

Josh Update on my Birthday

Current mood: thankful

Category: Life

I am having a very nice birthday so far.

Thanks to all of you who have sent me greetings.

How very nice to hear from you all!!!

Josh is doing quite well these past few days and now.

His Oxygen saturation levels and CO2 levels have been doing good.

We have even let him take brief periods off his ventilator

during the day without his levels getting too bad.

We don't let him stay off too long, just in case.

Today, I took Josh to his school so he could participate

in his class pictures. He was so excited to get to see everybody

and get to be in the picture with his class!

We worked on his hair this morning and got it all spiked

just the way he likes it! For the picture, we tried to get his cart

with his ventilator just outside the picture.

Of course, he was still hooked to it with the hoses to the vent -

but hopefully they won't be too noticeable.

How things are coming on the Discovery Channel

piece on Josh?? It seems to be coming together nicely.

I have had several emails back and forth

and talks on the phone with the folks from the

production company in London.

And yesterday, we FedEx'ed them a package

of medical records and a disc with pictures on it

to help with the project. The latest word

is that they will be casting actors next week

for dramatizations and they plan to

come to the states the week of Valentine's Day

to film interviews with us and some doctors.

I'll keep you posted as I hear more so stay tuned!!

Pray for "Air Force" Josh

I do want to ask you all to pray for a neighbor of ours -

another Josh. He is near my age and in the Air Force.

He had a brain tumor removed last year.

This "Air Force" Josh (as we call him) had been doing

much better with chemo and radiation.

We just heard yesterday that he had another

seizure (his first seizure is how he learned

of the tumor to begin with all those months ago).

He reported he also broke his toe in three places

(I believe during this seizure). I do not know how

he is doing now (he didn't answer when

we went to check on him yesterday and

it did not appear he was home when we passed by

about an hour ago on our way home.

We are worried about him but know

with God all things are possible.

I'll leave you all today with this picture I just took

of my Josh with his hair all spiked for picture day!

And check out how much Josh has changed

since these other pictures (below)

we just came across from the SUMMER of 2004 -

a few months before he first got so sick.

Thanks again everybody for

helping to make my birthday

such a nice one!!!!!!

1:58 PM -

__________________________________________________

Monday, January 22, 2007

Dieting

Current mood: hungry

Category: Food and Restaurants

One of the things the doctor recommended for Joshua

was for him to see a dietician. We plan to do that once he has

his Medicaid card in hand. Until then, his nurse shared

with us a diet given to her by a cardiologist. It's supposed to be

a sure fire way to lose weight fairly quickly – to help patients

who need to lose weight before heart surgery. My sister, Josh and I

decided to give it a try – at least on a short-term basis

and see how it goes.

Here's the diet:

It looks pretty simple and didn't sound too bad.

So, we've been trying it out.

But, we have also found ourselves

watching more Food Network on TV. Seeing all that

yummy food has us wanting to stray from our diets.

Josh keeps asking is that on our diet? Is that?

How about that? The answer 9 times out of 10

(or so it seems) is NO. So we've decided

on many things we want to indulge in

once our diet time is over. And my sister

has already decided that Tuesday, once we should

have lost 5 pounds, we will go off the diet for the day

and have fudge brownie sundaes. So, we'll probably

have to diet for 2 weeks to lose the weight we put on

in one day! Oh, and we have to "fudge" again

on our diets on Friday because it will be

my birthday! Oh well.

Unexplained Symptoms Continue..
1. Joshua is still having fevers on and off. The highest one was 100. But they come and go.
2. He also had another spell of pain & muscle stiffness in his legs and arms Friday night. His Aunt Amanda made a mad dash for the pharmacy to pick him up some generic pedialyte in his favorite flavor, and he drank almost the entire bottle that same night, and the pain & stiffness seemed to go away.
3. Josh will need to have blood testing again early this week to check his sodium level, because it has been so high lately. Friday a week ago, it was up to 170. Then a test again on Monday showed it had come down to 150 – barely in the acceptable range.

Emotional Breakdown/Breakthrough
All this time since Joshua was first hospitalized (he's been in the hospital four times now), and since he has had the tracheotomy and been dependent on a ventilator, he has not really talked about his feelings about any of it. Even though he is now having to get shots 6 nights a week and will be for some time to come, still he has not shed a tear about any of it, with the exception of having to have a needle in his arm to receive a contrast solution during an MRI last year. Any time you ask him how he's doing, he will just reply, "good" or "fine." This has been something that has concerned many of us because you would think anyone going through so much would have had to cry about it or be saddened or even sickened by it all – but not Josh.

Doctors had sent psychologists, psychiatrists and counselors to talk to Josh but still he would not talk about any of this with them or even really with me. He would listen to me talk about it with him. I would explain why the doctors felt it necessary to do all these things and what they hoped to gain by some of it. But he never seemed to disagree or reject any of it – as I would expect he might at some point.

Well, Josh finally broke down on Friday night. It actually began with a simple conversation about something else entirely. We were talking about things people do that hurt other people's feelings and he began to discuss his feelings about the trach and ventilator. He hates having to be connected to the ventilator all the time, having to push a cart around worrying about the wires and tubes getting tangled – especially when he has to go to the bathroom. He didn't understand why they wouldn't just let him go back to wearing just his talking valve – because he could talk just fine with that. It was as if he thought the reason they wanted him to use the ventilator was to help him talk. We had to explain again what the results of the tests meant and that they were the reason the doctors recommended the vent. I also had to explain to him that nobody could force him to use his ventilator all the time, but that if he did not use it, he could get so bad off that he might die.

It was a very lengthy and very emotional discussion for all of us (Amanda, Josh and I were involved in the discussion). We all bawled pretty good during it all. The discussion even delved into God's role in all of this, and we learned that Josh had believed even God was not perfect. We corrected him and explained why it was because God was perfect that we would be separated from Him because of our sin. And only Jesus, God in human form, who remained perfect while on Earth, could take our sins on Him and take our punishment for us so we could be with Him again in Heaven.

After the talks and crying were over, we all hugged and had some laughs and went upstairs to watch some TV. Josh has seemed even happier since all of this, and I am so glad.

Nursing Home/Medicaid
We have been trying for some time to get Josh qualified for Texas Medicaid. We were hoping that would help pay for the constant nursing care his doctors recommended. Josh has had to remain homebound from school just so our insurance would pay for ANY nursing care at all. But getting the Medicaid is tricky. We did not qualify for Medicaid the traditional way.

We finally learned a few months ago of a waiver program that Joshua should qualify for – that would get him Medicaid. One of the big requirements for it is an overnight stay in a particular nursing home. And the wait for the one room at the one nursing home in our area that participates in this waiver program was a long one. We were told it could take months for Josh to have the opportunity to get in, so we filled out all the other paperwork, etc. and waited.

Then on Thursday, we got the call – actually several calls – that there was a small window of opportunity for Josh to get into the room – and could we come that very night?! We jumped at the chance and made all the necessary arrangements. Josh went in late Thursday evening and got out early Friday morning. We were even able to make arrangements for Josh's nurse to meet us at our home upon our return so she could help get him up into bed and watch him while he slept afterwards. He did not sleep a wink at the nursing home. I think he was too nervous and excited about it all.

Now, Josh has a Medicaid number (although I do not yet know what it is) and his nursing company is in the process of evaluating him for other programs to help provide the nursing hours he will require. But we are hopeful that it won't be long until he has the 24 hour per day nursing he needs (or at least very near that) so he can return to school and some of the responsibility for his medical care taken from my shoulders.

I am also hopeful that Medicaid and/or the other programs will help pay for some of the many medical bills that have piled up on us that we cannot afford to pay. We get bills for every blood test Josh must have – and there are many, many of them since his sodium levels must be checked so often.

Goals for the future
1. We want to take care of all the bills with the help of the Medicaid, and hope that it helps pay for the very expensive growth hormone, too.
2. We want to get Josh back into school with his new nurse(s).
3. We need to get Steffany (Josh's sister) braces – she has had to wait since Josh got so sick, because all our medical monies had to go to his care.
4. And once we know if there is any money or time for it, I probably need to take some more classes so I can complete my degree. I am thinking of trying to become an RN myself, with my medical experiences from Josh's hospitalizations, etc. I think I might even be able to be paid to take care of Josh as a patient – at least when there is not another RN available. But it would take a few years for me to complete this process – but it is a nice goal.

the first is of my sister and Josh playing games

to entertain themselves - since there was no tv available

the next is of Josh making silly faces - a game that kept him

quite happy - and awake - during the stay
and the last is of me - after I napped a bit -

I looked a bit like a zombie, but I was happy our stay was about over

Josh is sick

THE COLD

It started Thursday with a runny nose and a slight fever.
Then Friday morning, the fever increased to 100.0 and he was audibly stuffy nosed. I kept Josh home from the Weavers' and gave him lots of medicines plus extra pedialyte.
Saturday morning, Josh was running 100.9 - the highest temperature he's had in several months and his sinus problem was not any better. Again, Josh stayed at home all day, taking medicine and drinking more.
Now, Sunday morning, Josh awoke with a 100.6 temperature, and his nose is still runny. But I think the sinus issue is starting to subside. And he is complaining of boredom. I kept him home from church this morning, but we had hoped to go see the movie, 'The Nativity Story' this afternoon. I guess we'll have to cancel if Josh continues to run a fever, though.

PLEASE PRAY

Keep Josh in your prayers - that the cold will pass and he will not wind up back in the hsopital and that he will be healthy in time for Christmas.

We plan to drive to Odessa next weekend to celebrate Christmas with family in our hometown. Please pray traveling mercies for us, too.

Please pray for James' father, Tom and for my aunt Peggy - both are battling cancer right now and facing chemotherapy.

OTHER UPDATES

I wanted to say thank you to all who have mailed us Christmas greetings. It is so nice to hear from you all and to look at the lovely cards and letters.

My condolences to the Winstead family in the loss of Linda. I am glad she is now in Heaven and no longer suffering from her cancer. This family has endured so much loss. My heart goes out to you.

We went to the ARD meeting for Josh this past week. We have agreed to keep him homebound another few weeks to allow for the Medicaid process to run its course. Josh will, however, begin to see a school counselor once a week and a speech therapist in the home setting after the holidays. Josh has also received a personal auditory amplification device (in layman's terms it is a microphone held in front of his mouth by a headpiece connected to a speaker box held to his waist with velcro). The concern was that he was having trouble speaking loudly enough for all those in a classroom, etc. to hear him over his ventilator and other noise. This device - if he will wear it as much as he should - eliminates that problem.


If you would like to send us a greeting, here again is the address:

PO BOX 598, Cibolo, Texas 78108-0598

God bless you all and have a wonderful Christmas!

Growth Hormone Shots, Medicaid, ARD Meeting, Wish List

GROWTH HORMONE SHOTS

I am now able to give Josh shots. In fact, I have given him three injections of growth hormones so far. He must have a hormone shot 6 nights a week. We have decided that Sunday evening will be his day off. Luckily, the shots have not been too bad for either of us - thank God.

The nurse said we could expect Josh to grow about an inch every three months. Some of the possible side-affects we have heard include headaches and joint pain from his sudden growth, but Josh has not complained of either so far. I have noticed that his heart rate has seemed to be racing some the last couple of days and even when he sleeps at night. And he has been extra sweatty. He even woke in the night last night because he felt hot and wanted his fan turned on.

Unfortunately, he has also experienced more frequent bed-wetting episodes. That is despite the doctor telling us to double the dose of the DDAVP nose spray that is supposed to help him maintain his fluids and keep from wetting the bed. We went to the doctor - the pulmonologist (lung doctor) last week and she always wants to keep an eye on his sodium level (among other things) so he had to have blood taken. And, sure enough, his sodium level was a bit high. So, we are having to keep after him to keep drinking, and drinking, and drinking!

MEDICAID

We have sent in all the paperwork required for the Medicaid, and we've had the case manager and nurse visits. We heard from yet another nurse who needs to visit tomorrow afternoon. Then, we have to wait for approval to get into a particular nursing home room overnight - but there's a long waiting list of others waiting for that same room - so it might take as long as two months before Josh gets Medicaid. Then, once he gets Medicaid, we have to have his nursing company evaluate him for another program known as CCP - which should allow him the nursing hours he needs. THEN, maybe he'll be able to return to school.

ARD (Admission, Review & Dismissal) MEETING

We have another ARD meeting for Josh scheduled this Thursday at school. We already know the district will recommend Josh be moved from his current campus to another one whenever he can return to school. That is because it will be the only one staffed by an RN on campus. This has been a little unsettling for Josh to learn, because he has been looking forward to returning to the class of kids he left behind in September.

Josh is also still struggling - especially with reading anywhere near his grade level. It's not for a lack of his wanting to be able to read the words - but he has trouble with compound words and combination sounds. Some of it may be due to his hearing loss. Or it may have something to do with his illness - or both. But he does seem to do well with games like Sight Word Bingo - so I'm hoping to find more things like that to give him for Christmas. He loves playing those games with us and they teach him better than even some of his schoolwork does.

VENTILATOR CART

OK, If you've seen us at church or at a store or something, you know we've got Joshua's ventilator strapped to a little utility cart that is designed to go up and down steps. The problem is that it has these very small, rinky-dink wheels on it that like to slide back and forth on their little "axle" pole. I am really interested in finding someone who might be able to help us maybe to re-design the cart with better wheels and perhaps some kind of drawers or something to make it more efficient and easier to push around. Below are some pictures of Josh's cart.

OTHER ITEMS ON

MY WISH LIST

Speaking of the utility cart, because Josh's bedroom is upstairs and we have his vent on a cart, it would be really nice if we could find a way to install a sort of platform to wheel the cart onto.. that would lift it up the stairs. Kind of like in this picture below (only it wouldn't be for a wheelchair):


I would also like to outfit our house with a few ramps so Josh can wheel his cart over the thresholds with ease. And I wouldn't mind pulling up the carpet - at least downstairs and putting down hardwood or linoleum. That would make it easier for Josh to get his cart around without getting stuck.

Anyway, I'll let you all know when we finally get to go in the nursing home so that we can get Medicaid, and I'll let you know of any other major break-throughs - like if we hear more about the Discovery Channel piece or something. Until then, we want to thank everyone who has remembered us in your prayers, sent greetings or donated to us in any way. These last several months have been pretty trying on us all - but with God, we are perservering and hopefully touching some lives out there with the Love of God.

Have a very merry Christmas everyone!!!

Update: Nursing Care, Flu Shots, Sodium Levels, etc.

A Late Night Knock at the Door......

SURPRISE!! The nurse showed up last night to watch Josh. She said they finally got approval from our insurance company so she got a call to come to our house. We did NOT get the call, so we had no idea anyone was headed our way last night. In fact, it kind of startled us to hear a knock at the door so late (it was about 11PM - which is what time we had schedule the nurse to come most nights - before our nursing care got canceled).

Things were going fine with the nurse here until about 5AM when Josh's trach started getting clogged with dried secretions and his carbon dioxide levels began to rise and oxygen sats dropped. She went to suction him, but with his machines alarming on and off so much, I woke up to see if I could lend a hand. Apparently the dried secretions blockage was pretty stubborn, so we ended up just changing his trach which dislodged the goo inside. That did the trick and he was back to sleep not long afterward.

Matching Boo-Boo's........

Josh and I went to his Pulmonologist's office this afternoon to get our flu shots, and my sister who lives with us thought she was gonna get out of having to get stuck in her arm because she had to go to work today. But as we sat in the office awaiting the needles, we got a call from Amanda. She reported that they were slow at work and her employer told her about a clinic there on campus where she needed to go to get HER flu shot. So all three of us have matching boo-boo's on our arms tonight. But at least maybe we won't get sick - we hope.

More Bloodwork and NOT-So-Great Results....

The doctors wanted to check Josh's blood for his sodium levels again today. This is something Josh always dreads because it means the folks in the lab always want to poke him in the arm and move the needle around ALOT to try and find a vein they can use to collect the blood sample. Today was no exception. We sat in the lab for about half an hour while various lab techs looked at Josh's veins and placed hot packs on his arm in hopes that would bring his veins up near the surface. After having no luck getting any blood that way, the doctor walked in and gave permission to do a finger-stick to get the blood sample. A few minutes later, we were done and out the door.

Less than an hour after we got home, the doctor himself called us - telling us Joshua's sodium level was WAY high - almost as high as when he was hospitalized early in September for several days. I was worried he was going to admit Josh this time, too - but instead he instructed us to make Josh drink between 1 and 2 more LITERS of water, gatoraid, etc. between then and bedtime tonight and to increase his DDAVP nosespray that we give him at bedtime in hopes that by morning his levels will be back to normal. I am sure we'll be making another long drive over to the medical center area early next week for a follow-up test to make sure he's back down where he belongs (or his sodium levels are). Having too high sodium can cause some SERIOUS problems including death so this is nothing to fool around with!

Josh's Bones are Too Young.....

We got results back today from an xray Josh had on his wrist last week. They show that "According to the bone age standards of Greulich and Pyle, the bone age is 9 years (+/-) 9.79 months." But Josh is 10 years and 1 month old. So his bones haven't had their 10th birthday yet, and in fact, may not have even seen their 9th birthday, I think. ??? Anyway, we hear the pre-certification for Josh to get the growth hormones he needs is still in the hands of the insurance folks - so we're not sure when Josh's bones will get to catch up to him in age - but we hope soon!

There is still much more I could sit here and write to you all about - but I had better save something for later, huh? Right now, I've got to go check on dinner - Steffany is watching it for me while I write - with her head all focused on boys, that could be a scary thing :)

God bless and have a GREAT WEEKEND!!!

I just can't believe this


OK, when last I wrote, we were finally about to get nursing care initiated for Joshua in our home. As you know, I have been doing all of his nursing care, respiratory care, mothering, much of his teaching, etc. all by myself - not to mention I also take care of the house, meals, laundry, dishes, etc. etc. PLUS take care of an elderly, disabled couple part-time in their home (with Josh tagging along).

SO I was very relieved when at last - last night - we had a nurse in our home for the first night EVER. She arrived at 11PM, and we spent much of the next 2 hours going over Joshua's history and getting Joshua in bed, hooked to his bed vent and showing her where everything was located. I finally get to bed about 1:15AM, toss and turn a bit worrying whether I forgot something that could be necessary. Then I woke this morning at 6:30AM so I could talk to the nurse and see how everything went overnight before she had to leave at 7AM.

Everything seemed to be moving along fine and we were expecting her back tonight. Then we get a call from the nursing company case manager this afternoon saying the nurse would NOT BE COMING! What's more - the insurance company did not want to pay for nursing for us AT ALL because they couldn't understand why we would all of a sudden need nursing care since Josh has been on a ventilator since coming out of the hospital LAST YEAR.

It's not that he didn't NEED nursing care all of that time. I was just willing and barely able to provide enough care to get us by for a while - hoping Joshua would end up with the diaphragmatic pacer so he could be free from the ventilator and trach sometime soon. Of course, now, we have found out that Josh will be on the ventilator 24 hours a day for the foreseeable future. And, we should not expect him to be able to get rid of the trach EVER.

I realize I cannot go on indefinitely trying to be the one to take care of EVERYTHING all by MYSELF. I have been lucky so far that I have not gotten very sick. And, I have not even had an opportunity to go to a doctor or dentist for my own care since all of this happened - which I need to do.

Oh God, I just pray that this nursing issue can finally just be worked out. I do fear for my son's life. We know from tests performed at Rush Hospital in Chicago that should the ventilator fail and I sleep through any alarms, etc., Joshua could die right there in his bed during the night - because he WILL STOP BREATHING.

I've got to go to bed now and get some sleep. Just please everyone pray for us - this is very difficult on me. Thank you and God bless!

Thursday, November 09, 2006

Progress - I think


I've got several items of news to share with all of you who are following my saga with my son and his rare disorder.

STORY TO GO INTERNATIONAL???

Joshua's story may actually make it onto the Discovery Channel!!! I spoke on the phone with a TV producer in London, England this morning. He works for an independent film maker and he came across Joshua's story in the San Antonio Express News. He contacted the reporter who wrote that article, Melissa Stoeltje, who then passed on the message to me that he was interested in Joshua's story. The producer will still be contacting some of the doctors who treated Joshua and will present the story - along with some other medical stories - to the Discovery Channel - within the next few weeks. I will let you all know as soon as I hear any updates and whether they decide to do the story.

NURSING CARE

We thought we were going to have some nursing care for Josh - paid for through our insurance company last week, but that did not pan out. So, now another company has taken on our case and a case manager is due to meet with us this afternoon so a nurse can begin coming a few nights a week starting Monday. We are so happy to have SOME help - FINALLY. I am cautiously optomistic about this news - but will wait to be elated until it actually materializes.

MEDICAID

We have been trying for some time to find a way to get Medicaid for Joshua so that he can get the nursing care his doctors have ordered for him. They say it is important for Josh to have a nurse 24 hours a day. Josh's case manager at his doctor's office has been tirelessly working on finding a way to make this happen. And, earlier this week, Josh and I (after speaking to a nursing home the case manager had found) decided to head out to some local nursing homes to try and find one that could help. We ended up finally getting the name and number of the person to contact TODAY and have got the ball finally rolling on it. We should be hearing from the new case manager and nurse assigned to Josh's case within the next 14 days, then Josh will have to spend a night at a nursing home (when a bed is available at the one nursing home that does this in our area) before he can get assigned a Medicaid number.

I am certainly ready for some help with Josh. I find myself having a hard time getting up to check on his machines when they go off many times in the night - especially when it's several nights in a row that they do this. I thank God that we are finally learning where to turn for help with Medicaid - so Josh can get the nursing care he so desperately needs.

VIDEO
One last thing- make sure you take a look at my myspace page and see the new video on there. A dear friend who put many long hours into it created the video for me in an effort to do something to help us. God bless you, Amy, and your family, too. We love you, girl!!!! Then, you can find Amy on my friend's list and please write her and let her know what you think of the video. I think it is GREAT!!!

Monday, November 06, 2006

No nursing care after-all



We thought we would be welcoming a new nurse into our homes tonight who would help with Joshua's care while I slept. That nurse would have been watching Josh's vent settings and monitors to make any changes that would keep his oxygen and carbon dioxide levels at their best among other things. But the nursing company who was going to provide that nurse reports that they have nobody who can come and do that during the night after-all. They will let me know in a few days if they find someone - but for now, I am still on my own.

Last night, about 3:30 in the morning, I heard Josh's alarms going off then stop, going off then stop - a few times - and got up to go check on him. Once inside his room, I heard a strange sound with the tubes - and found that his trach tube had been pulled outside of his neck! Thank God, I had the presence of mind to figure out what I needed to do to get the trach back in the right place. I had a time getting the chain around his neck that holds the trach in place off so I could replace the trach. I had to turn on the big light and wake Josh completely so I could get him to take bigger breaths - because he was de-satting. Finally, I got everything back in place and got him back to sleep.

A few minutes after getting back into bed while starting to worry about what the nurse would have done if he or she had been there and witnessed the trach incident, all of a sudden, the house shook with loud thunder outside. Storms moved through from like 4AM all the way through 6:30 or so this morning. So, then I was worrying about the electricity going off and interfering with Josh's ventilator - which thankfully did not happen. But it sure made it difficult to get on up and get going this morning.

You gotta find the good and remember that God is responsible for that and realize God is there to see us through the rest of the stuff.

Halloween Pictures


Here is a picture from Fall Fest at our church. Josh dressed as Batman. My sister, Amanda dressed as a Character from the movie and play, "Chicago"



The next picture is also from Halloween day - earlier in the afternoon Amanda and I took Josh to the park to play with his kick ball. Josh couldn't move around much so we had to do most of the kicking (or throwing) very carefully straight to him. We also fed bread to the ducks, etc. in the park. It was a nice time.

Article about Joshua in another Newspaper


The Herald-Zeitung, a community newspaper for our area, published a story about Joshua in it's November 2, 2006 Edition. The story begins on Page 8 and continues onto Page 13. The article is entitled "Cibolo police gives local boy a reason to smile." We had no idea the newspaper was planning to do this story; but we were pleasantly surprised.

Thursday, November 02, 2006

Update: Nursing Care, Medicaid, Grandparents, Halloween


We are in November now and Thanksgiving is around the corner - can you believe it?

We finally got some news yesterday (Wednesday) about nursing care for Josh and about Medicaid, so I wanted to write a quick update. Our insurance will cover 250 nursing hours during the months of November and December. I had to sit down yesterday with a calendar and try to plan the best way to use those hours and came up with a schedule to cover most weekday nights while I sleep. I meet this afternoon with our nursing facility case manager to get Josh "admitted." Then, nursing care (still NOT 24 the hours a day that the doctor recommended) should begin either tonight or Monday night.

The case worker at Josh's pulmonologist's office has found a nursing home where Joshua may be accepted in order to spend the time required for him to become eligible for a Medicaid Waiver. He MAY have to spend a few weeks there before becoming eligible, from what we are initially told - but whatever it takes, Joshua needs Medicaid so he can finally get 24 hour nursing care, etc. SO, the paperwork has all been filled out and sent to the nursing home - which is in the Tyler area of Texas - a LONG drive from here - so now we wait and see.

We got some news recently that James's parents may BOTH have cancer. His dad had cancer on his leg a few years ago - but with surgery, chemo & radiation, they got rid of it. Now, doctors say he has cancer in his back, liver and lungs. A biopsy was performed on Monday and we are awaiting the results - but they are treating those areas with radiation in the meantime. James's mother had a mammogram which showed a couple of spots in one of her breasts. She is having them checked for cancer as well.

And to end this update on a happy note, I'll update you all on our Halloween. We took Josh trick-or-treating and to our church's fall fest (like we do most years) but as you know, Josh has to be hooked to a ventilator now 24/7 so it was much more tricky this year. We managed to get him into his batman costume and secure his hoses from the vent in his costume belt. We drug along his cart with his vent and medical supplies attached and kept it as close as we could. We did NOT go to nearly as many homes to trick-or-treat as we have in the past because it was just such a chore to get the heavy cart around everywhere. But Josh managed to come home with a load of goodies anyway. And Steffany and Amanda (my sister) even dressed up and made their rounds of the neighborhood and church, too. We all had a good time but were exhausted after Halloween. I am glad we are finally getting a little help with the nursing.

I'll try to post another blog with pictures from Halloween, etc. very soon - but now I've gotta go get everybody up and ready for the day!

God bless you!

Growth Hormone Test

As you know, Josh is on his ventilator 24 hours a day now after the doctor in Chicago checked his oxygen and carbon dioxide levels through all kinds of activities. Well, that same doctor wanted Joshua to be further tested to see if he needed growth hormones, too. So we took Joshua in a couple of weeks ago to his endocrinologist for this test.

The growth hormone study is done by starting an IV and giving Josh some kind of solution. Once all the solution goes in, they draw blood out of the same place that the IV went in. Then they wait 30 minutes and draw blood again. Another 30 minutes and they draw more blood. And then they take out the needle and you go home. They told us they would let us know the results and we'd plan what to do next then.

The endocrinologist's office finally called this morning with the results. They checked for levels of certain things in the blood. One of them - cortizol - seemed to be at a good level, BUT Josh's growth hormone level was NOT good. They said they like the level to show 10 or more and Josh "peaked" at 0.6. He didn't even get up to a ONE much less a TEN! So he failed the test miserably.

So what does that mean now??? They are going to send the results to our insurance company to make sure it will pay for Josh to receive growth hormones. I asked how that works - do we go in to the office every so often for them or is it like a prescription that we fill or what? They said NO, the growth hormones would be sent to our home and we would need to be trained by a nurse to give Josh injections. He would have to have these shots every single night for YEARS - until his body completes its growing. And the hormones are very expensive, so it could take the insurance company weeks to decide to pay for them and for us to be able to start them.

But because Josh's results on this test were SO LOW, he is basically NOT GROWING. The doctor's office wants Josh to have an x-ray taken of his hand and wrist. I am guessing it is to see at what stage Josh's bones stopped growing and to have something to compare future x-rays to to make sure he does grow with the hormones.

Meanwhile, we still do not have nursing care started. Again, we DO NOT QUALIFY for Medicaid. And our insurance will only pay for a very small amount of nursing care in the home and ONLY if Josh is homebound - and not in school. SO, since Josh IS HOMEBOUND now, we are hoping to get SOME nursing care for him - through insurance - even if it is a very small amount. Anything will help - especially if I'm gonna have to start giving Josh shots, too. I dread that.

I did share all this with Josh and I don't think it is all sinking in with him. He hasn't said much about it. He prefers to only talk about the good stuff - things he wants to do and what he wants for Christmas - that kind of thing. I still need to get Josh in to see a counselor - as the doctor in Chicago asked me to do. I now have the name and number of one here and just need to get the appointment set up - which I plan to do later today.

NURSING CARE - NOT YET

After Joshua was placed on his ventilator 24 hours a day, and the doctor ordered him to have nursing care 24 hours a day - we still do not have nursing care - none at all. Our insurance company will only pay for a small amount of nursing care in the home - IF Josh is placed in Homebound services for schooling.

BACK TO SCHOOL - NOT YET

His doctor signed papers for him to be homebound, but it has not started. We are waiting to hear back from the school on it. IF we somehow manage to get Medicaid, we think that would allow Josh to get the nursing care the doctor wanted and perhaps even allow him to return to school with the nurse. That is our hope but so far we have not found a way to get Medicaid.

FOUND PEDIATRICIAN - NOT YET

The doctor in Chicago wanted us to find a regular pediatrician to be Josh's Primary Care Physician. We have discussed this with Dr. Morse (his Pulmonologist) but have not yet made the call to get that set up. I expect to do this either later today or early next week.

COUNSELING FOR JOSH - NOT YET

We also need to get Josh an appointment with a counselor and Dr. Morse had one in mind, but I need to get that counselor's name again and make sure I have the proper referral so we can get Josh in to see him/her.

HEARING AIDS CHECKED/REPAIRED - NOT YET

Josh is supposed to wear hearing aids in both ears, but one of them has been having trouble with static. We got the hearing aids in Odessa, and I'm not sure where I might be able to get them repaired locally. I have heard there is someone here who is willing to take a look at them, but I still need to call them to get that arranged. That will also likely be an early next week item.

MAKING EQUIPT. MORE PORTABLE - WORKING ON IT

There are so many pieces of equipment we have to get around with now (all while they are hooked up - ventilator, pulsox, CO2 monitor, suction machine, trach bag, batteries) and they are HEAVY and BULKY and LOTS OF TUBES & CORDS - yuck. It's such a job just to get Josh to the bathroom or out the door to get anywhere. But I have been searching for anything I can get to help attach everything and put it on wheels. I've ordered one utility cart that claims it is easy to get up and down stairs with. I'm waiting for it to come in the mail. Hopefully, once it is here and I get it all loaded, we'll have things more under control.

VAN TROUBLE - OH YEAH

On the latest trek across San Antonio to the Medical Center area, my van decided to over-heat. James has looked at it and can't seem to find the cause of the problem. Then, it didn't over-heat for him when he gave it a good "work-out." But again yesterday, running some errands, it did it again. We were hoping to take the van to Odessa for a visit (since we haven't been there since Josh has been on the ventilator). Since we'd already told most everyone we were coming, we decided to rent a van for the weekend to make the trip and James will see if he can find the trouble when with my van when we get back. :(

MY ODD JOB STATUS - IN QUESTION

OK, I have been helping take care of an elderly couple in their home close-by. It produces a very small amount of money, but mostly is to help the lady and her husband. There has been another woman who comes in the mornings and I (with Josh en-toe) come in the afternoon to help her get out of her bed and into a wheelchair, make lunch, get her back in bed and do some light cleaning, etc. But now, the morning lady has given her notice and signed on to another job. And, they've asked me if I would be willing and able to come full-time, which I do not think is possible, given all the above issues that are still unresolved and so many appointments still needing to be made. But I feel bad for the lady, because she needs someone to help her so badly. She is such a sweet person and I enjoy our time with her, but really need to get so much more done!

ANOTHER THANK YOU!

Again, I want to thank all of you who are reading about us, thinking of us and praying for us. I can't imagine trying to go through all of this without God and His guidance and comfort. I praise Him for using you to build us up!

We went to Corpus Christi to meet these "angels"

who worked so hard to put on the BBQ for Joshua.

Afterwards,

they showed us a place where Josh could go fishing

- while hooked to his ventilator in the van.

Check out the pictures below:

Bar-B-Q Benefit

held for Josh's Medical Expenses

in Corpus Christi

September 30, 2006

Even though most of them had never met Josh (or us - his parents), several people who work for Fed Ex Freight in Corpus Christi worked to organize the BBQ, sell tickets, cook and prepare plates of food.

And many others in Corpus Christi who also did not know us, bought up the tickets and plates of food like wild!

We want to thank them all from the bottom of our hearts!

GOD BLESS THEM ALL!!!!!!

Chicago Trip Update

(This is the view from the efficiency apartment building
that is connected to Rush Hospital)


(Here is a shot of Josh sitting on the plane. We want to thank Southwest Airlines for providing the round trip tickets for us to see Dr. Weese-Mayer)


(Josh was monitored night and day in the sleep lab seen below)


(They placed many electrodes on Joshua's face and head while he slept and watched him via camera while he was in the sleep lab at night)


Hello all,

Joshua and I just got back from Chicago late this afternoon. We saw Doctor Debra Weese-Mayer and her group - who evaluated Joshua both in a Pediatric Intensive Care Unit and a Sleep lab setting and have a lengthy update to share with you. But first, I want to thank you all for thinking of us and praying for us during this trip. We sure needed them now - maybe more than ever!


Now, on to the update:


The team of doctors did confirm the diagnosis of Late-Onset Central Hypoventilation Syndrome with Hypothalamic Dysfunction.

They decided Josh requires (and probably has for some time) 24 hour mechanical ventilation. This means Joshua will have to be on his ventilator at all times.

They also adjusted his ventilator settings and changed his trach to a Bivona (adult sized) 5.0 tracheostomy tube with a tight to shaft (TTS) cuff. The cuff is like a balloon at the end of the tube to prevent air from coming back up the trachea and out the mouth and nose. It will only be used (or inflated) when he sleeps.

These findings mean we need to get nursing care in our home for Joshua. The doctor suggested we needed as close to 24 hour nursing care as possible. Joshua will also need to be tested thoroughly to see if he'll need growth hormones - and as soon as possible - so that he will develop as he should through puberty.

Speaking of development, Joshua had a very lengthy development study performed on him. The results indicate he suffered somewhere between 4-7 years of age and much of his development slowed or stopped at about that age. It is estimated his skills and mindset are that of about a 6 year old. The doctors are hopeful that with the ventilation needs being met and with a great deal of support at school and at home, Joshua should be able to make up much of the ground he has lost over these last few years. But it will take some time.

Joshua will also be on a strict diet. One of the functions of his hypothalamus is to maintain body weight, by sending messages when you are hungry or full. Because
that is not working properly (and probably because he did not grow taller during one growth spurt) Joshua has developed a very large belly - which he needs to slim down.
***so if you want to give him a snack, etc. please keep in mind it needs to be low-fat and low-sugar***

We will need to (ASAP) get Joshua's hearing aids checked and make sure they work properly and are fitting him as they should. The doctor wants to make sure we are all doing everything we can to make sure Josh doesn't miss a thing in his schooling or our speech to optimize his future development.

And finally, the pacer issue --- This was the greatest dissappointment of all for us.
We had hoped from the beginning of Joshua's getting a tracheostomy tube, that it was to be a temporary fix. Which it will NOT. Joshua could possibly qualify for pacers sometime in the future - BUT - we are told that the pacers will not mean he can EVER get rid of his trach tube and ventilator. That is because the pacers (which by the way are surgically implanted with 4 incisions into the trunk of the body) will help the diaphragm contract (if there is ample space to do so in the body) but will not create enough ventilation when sleeping or when sick. Because there are times when the pacers will not ventilate enough, Joshua would still need the ventilator - and thus, the trach (so he could hook up to it). There *is* a possibility that when he gets older, he might only require a face-mask type ventilation method and THEN he MIGHT be able to get rid of the trach.

This loss of immediate hope that we all held to for so long makes us very sad.

Struggling with wires and batteries and a heavy ventilator and vent stand are proving
to be other obstacles we are trying to work through right now.

Of course, I will also need to get with our insurance caseworker to try and work out
resources for the nursing care and obtaining a second ventilator and stand so we
can carry out all the orders the doctor gave us for Joshua.

Please keep praying for us - this has been a very hard week and it does not look to
be something that will get any easier very soon. We still, though, pray for a miracle healing for Joshua. An uncle and aunt of mine (Ronny & Molly) who happened to travel through Chicago today before we flew out) came by our room and laid hands on Josh and prayed for healing for him.

God bless you all and we look forward to talking to you all again very soon!

Vanessa

Swearing In Ceremony

The Chief of Police asks Josh about his plans for a career in law enforcement



Josh poses with the officers in his department



Proud Family

Aunt Amanda, Sister Steff, Dad James, Mom Vanessa with Officer Josh



Josh is now an official "reserve" Cibolo Police Officer - complete with badge, patch and credentials. His swearing in ceremony was held this morning at Cibolo City Hall.

Josh tells me two of the officers also came to his school today and ate lunch with him. And they plan to come again - and next time, they may have to bring some food in so they can make sure they'll all like what's on the menu. :)

Members of the Cibolo Police Department including McGruff the Crime Dog came by this evening to deliver a special birthday surprise to Josh.
They had a PSP and a couple of games for him. They also told him about a few other surprises they were still planning. They are arranging for him to come to City Hall later this week to swear him in as an honorary police officer, complete with an authentic badge and id "credentials." They said he will be welcome to ride along in their police car then to see what the officers do on patrol. They have also conspired with the San Antonio Spurs and are working on collecting several Spurs memorabilia including signed Spurs jerseys! They also promise a signed jersey from this year's brand new varsity football team at Cibolo's new high school.

The officers also had a surprise in the works for Steffany - who, by the way, they had pulled out of class today to ask for suggestions for a birthday present for Josh.
For Steffany, because they read she wants to be a pilot in the air force when she grows up, are working with Randolph Air Force Base to get her a flight suit and helmet, and want to send her up in a fighter jet!

Both kids were awe struck and very excited. And so are we! We just had to write and share all this great news with all of you!!!!

We will let you know when the swearing in will be and when the flight will take place as soon as we know more.


Vanessa & James

Birthday Party Day!



Josh turns 10 years old on Tuesday,
but since we have the trip to Chicago next weekend,
we went ahead and threw him a party today.



We had a great number of our friends
and church family turn out for the bash.








We enjoyed confetti cake, lemon cake,
homemade vanilla ice cream along with
other snacks and punch.

Josh felt pretty well for the party
and most importantly was home -
not in the hospital -
where he could enjoy all the company,
food and gifts. (Last year, Josh was
in the hospital during his birthday -
in isolation in the intensive care unit
and had just had his trach put in.
He wasn't yet able to eat the cake
and ice cream on his 9th birthday)