Pacer Update and Fun Stuff

Josh Medical Stuff / Pacers & Vent Update

When we saw Joshua's pulmonologist last time, when we started the pacers in October, he told us Joshua could use them as tolerated. He suggested maybe like 15 minutes to an hour long three or four times a day to start. So, those were the orders he wrote (the 15 min-1Hour 3 or 4 x a day). But he failed to write that could increase as tolerated in the orders, so school and home nurses weren't able to let Joshua use them as much as he'd like.

At first, yes, Josh needed more breaks from the pacers because when you get shocked in a nerve causing muscles to contract really big when you've never had that happen before is going to cause you to fatigue quickly. Josh also had to get used to trying to eat, drink and talk around the times the breaths came on suddenly. And we had to watch and get used to increasing and decreasing the number of breaths the pacers gave per minute.

But as Joshua got stronger and more used to the big breaths and his muscle doing more work, he could tolerate the pacers longer and longer. On weekends, when no nurse was on duty, he would put on the pacers about mid-morning and leave them on all day - until a nurse would come at night and he had to get ready for bed. And he did great with them.

So, we were due for another doctor visit December 1st (with the pulmonologist). When we last saw a doctor (endocrinologist Oct 16th) Joshua weighed 86 kilos (about 189 pounds). December 1st, though, he dropped to 83.2 kilos (about 183 pounds). He lost 6 pounds - and that's even over the Thanksgiving holiday when we all ate more than we usually do! And Josh has grown a little and is just over 5 ft 1 inch tall now.

I really think the pacers are worth their weight in gold! Not only is Josh getting a workout by taking this big breaths all day, but he is also able to move about a whole lot more (not being connected to a ventilator all the time). And when Josh is on the ventilator, his nurses are noting that his tidal volumes (how big his breaths are) are much larger than they used to be. They are amazed.

Josh did come down with a cold though over the weekend prior to going to the doctor this time. His nose was pretty plugged up and lots of drainage. So, we let him stay home after his doctor's appointment and get some rest. And the doctor recommended Sudafed (or the generic kind). We picked that up and also gave him some Afrin Sinus No Drip nosespray. They have really helped and he's feeling much better today (December 3rd).

Dr. Smith (pulmo doc) also wrote orders this time saying:

"amplitude to right 4.5 and left 5.5. If needs adjusting, call Dr. Smith for adjustment values. Rate 7-14 breaths per minute. Hourly checks for CO2 levels while awake. Keep CO2 in 30-45 range. If CO2 <29>

Josh is to use his ventilator when not on the pacers (unless his CO2 is less than 29 and he's needing that to increase).

Here are his ventilator settings:

Ventilator: LTV 950
PEEP set at average of 5
Mode: SimV/CPAP, Pressure Control 24, backup volume 425
Breath Rate ladder for night 12-24. Pressure support at night 14 cmH20,
ETCO2 30-50. Inflate cuff at night.
Rate ladder for daytime set @ 12-18 cmH20 (Do rate ladder last),
Pressure Support ladder daytime 12-25 cmH20 (do Pressure Support first). Deflate cuff while awake.

And these are Joshua's medications:

Bacroban ointment 2%, apply to trach at night
Cortef 5 mg, 1 tablet in the morning
Cortef 5 mg, extra tablet if running fever >99.8
DDAVP Nasal 10 Mcg/inh, 2 sprays each nostril twice daily
Norditropin Cartridge 5 Mg/1.5 Ml, 3 mg subq 6 days a week
Synthroid 0.75 Mg, 1 every morning
Calcium 333 mg, Magnesium 133 mg, zinc 5 mg, 1 each morning
B Complex, 1 each morning
Acetyl L-Carnitine 400 mg, Alpha Lipoic Acid 200 mg, 1 each morning
Flovent 44 mcg 2 puffs twice daily
Pataday allergy eye drops, 1 drop each eye every morning
Ibuprofin 400 mg daily as needed for pain or fevers
Albuterol HFA, 2 puffs inhaled as needed (THIS ONE IS NEW and due to school nurse request - has not been used yet)

I wrote all these specifics that may be hard to understand for the normal person who isn't taking all these medicines or on a ventilator, etc. because I wanted anyone out there who might have a child with this disorder to have it. Since Joshua has been pretty stable with these settings and medicines/vitamins, maybe it can help someone else too.

If anyone reading this is interested in what we use to help keep Joshua's pacemaker antennas in place, we have found this works best for us so far:

Gold's Gym Waist Trimmer Belt from Walmart. It costs $5.00 and made of soft rubber foam material. It is designed to make you sweat off pounds. But we turn it inside out and I've added a little extra velcro to help hold the end of the strap in place. But you can tighten it as much as necessary to hold the antennas in place and it doesn't roll up or bunch up as badly as Ace bandages, etc. Josh simply can't use the tape or bandaids recommended to hold each antenna. The adhesive breaks down his skin too badly.

Oh, and instead of using the belt that came with the pacer box (look at the picture up top and you'll see the boy wearing the box at his waist) we have purchased a small black backpack and placed the pacer transmitter box in it. It keeps the wires from the antennas up high so they don't get in the way when Josh needs to go to the bathroom, etc. Josh likes the backpack MUCH better.

FUN STUFF

Okay, now on to some fun (well some of it's fun). I work at a daycare that requires me to be fingerprinted. I had an appointment to go do that yesterday (Wednesday). The place I went to for it is right in front of a Big Lots store and a Family Dollar in New Braunfels. While I waited to be fingerprinted, I was in the waiting room looking out the window at those stores. They weren't too busy at that time of the morning, so I thought I'd sneak in there after I was done and see what I could find for the kids. I can't really afford to be doing this (since we are struggling so and really need to come up with our tax money for our house very soon plus I had to shell out 45 bucks for the fingerprinting!) but I just couldn't resist doing a little something for the kids.

This is what I found:

They are supposed to be ornaments for a Christmas tree - little stockings of different kinds. They are so cute. And I found glitter glue stick pens so I could write the kids' names on them. I also found some cheap plastic ball ornaments that were very bright and shiny the kids would love. So I got those to hang from the ceiling in the classroom.

The kids' eyes lit up (not to mention some of the other workers' eyes) when I got to work with my goodies. I'm still working on getting them all put up. I'll do some more of that today when I go in to work.

After work last night, my sister insisted she treat us to the movie, A Christmas Carol in 3D. She even invited my daughter, Steffany (who is about 6 weeks from her due date). We left for the movie after getting my hubby off to work for the night. We dropped by and picked up Steff at her apartment and headed for the IMAX theater on the NorthWest side of San Antonio.

The special effects were great - it is in 3D. But the story itself has been told and retold so many times, it was a bit old to me. Josh really enjoyed it though. He recognized the story from other shows. He was afraid he wouldn't like the 3D part - because he didn't particularly like water or air being blown at him, etc. during past 4D movie experiences. But once we assured him nothing like that would happen, he calmed down and enjoyed the show. Here's a clip from the movie:

And pictures of Josh and Steff from the movie theater:

One more fun thing I'd like to share is a video my sister showed me last night, then we heard mentioned on the Craig Ferguson show, too. It is called Surprised Kitty

I hope you all enjoy it as much as we do!

New Job & Appointment to turn on Pacers!

After months of searching, I finally have a new job.... I'll get to that in a minute, but first the most important thing: Josh is about to get to start using his new breathing pacemakers!!!

Even though we were supposed to be waiting for him to call us, I just couldn't wait. So, I called Dr. Kelly Smith this morning to ask where things stood with starting Josh's pacers. One of his medical assistants took my name and number and went to talk with him about it. He called me back and asked if we could come to the clinic next Tuesday and of course I wasn't going to say "no."

We have waited 4 years for Josh to get to use breathing pacers instead of a ventilator. I got to thinking we may never see the day when he would get to start them up. But we finally, FINALLY have a date and time to get them going!!!! TUESDAY OCTOBER 6TH 2009

Josh doesn't even know about the appointment yet because he is still at school. But I went ahead and texted a bunch of people to share the good news. I can't wait till Josh gets home so I can share with him. I know he is going to be EXCITED!!!!!

Okay, now back to my new job. Well, first I'll give you a little background on my work history.

I worked in TV news for almost 9 years. I was basically third in command there... Station Manager, News Director, me. I lived and breathed TV news. I even had a scanner that the station installed in my house and they hooked me up where I could log in on my computer from home to help produce shows and edit stories from home. At times, I carried 2 cell phones and a pager so that there was never a time when photographers or reporters couldn't get ahold of me.

I thought I would always work at CBS 7. But I was missing so much of my kids' lives that when I got an offer of another job at a much slower pace, with holidays off and all that I had to at least consider taking it. That was at the Permian Basin Rehab Center as Medical Records and Patient Intake Secretary. The Rehab Center and CBS 7 were partners in an annual telethon. I saw what great work they did there and it was hard to say "no." But I felt such a sense of commitment to CBS 7 that I wasn't sure I could walk away from them. I prayed hard. I asked God to show me the path He wanted me to take. And then I opened a daily devotional book to a random page and began reading.... "don't be afraid to take a step out on faith." WOW, it was almost as if I could hear God telling me I was to go. So, I left CBS 7 and began my new job. It was great. I had plenty of time to spend with my family and holidays off. And I worked hard to make everything the best it could be at the Rehab Ctr. There were times I was even twiddling my thumbs looking for stuff to do to stay busy! I was so used to working under tight deadline pressure at the TV station that it was a bit of a shock to the system to be so laid back.

But soon, there was another change. My husband was going through a leadership program at his job. And they had a position they were encouraging him to take. The only problem was that it was not in Odessa, where we currently lived. It was in San Antonio! If he took that job, we would have to move away from all our family and friends to a place we'd only been once before. He really thought about turning down the job, but his hours were getting cut back in Odessa and he was afraid we'd suffer financially if he didn't take it.

So, we sold our house and I quit my job and we moved to the San Antonio suburb of Cibolo, to be close to James' new job. I took the summer off then started to look for work as school was getting started. Just as I began to look, a 24 hour local news station in San Antonio disbanded and laid off all their workers. That flooded the market with news people who already knew this area and had contacts here, etc. That made it virtually impossible for me to get another job in TV news here. Which also cemented the idea with me that God did not want me back in that business.

I finally found a job here nearby giving presentations about something I'd never heard of before - pre-tax flexible spending accounts. They hired me because of my journalistic background. They thought I would be good at making presentations in front of groups. So, I followed the owner around as he traveled all over this part of the country going to businesses and giving presentations. I learned all I could about the spending accounts and practiced what I'd say in front of the owner first. Then he attended some meetings and had me give the presentation. It took a few times before I was confident enough to do it solo, but soon I was handling the meetings like a pro.

When the owners saw how well I picked up on doing the meetings, they decided I should be able to handle all the aspects of what he had been doing - even handling brokers and dealing with COBRA questions. But I really had no idea what I was doing in those areas. They had me take calls from brokers and expected me to know what they (the owners) would have said to them. When I didn't, they decided maybe they should use me in some other capacity and just handle the meetings and brokers themselves. So, they taught me how to audit the accounts. And I did LOTS of data entry when people would sign up for the flex accounts. And I helped put together multitudes of booklets and papers to prepare the materials for the meetings.

I worked hard and felt a little unappreciated since it felt like I was demoted. But still, I gave it my all - determined to make them see how capable I was.

Then Joshua got sick... more than sick... he went into respiratory arrest. All the aspects of his disorder came to life and the doctors had no idea what it was. All those months and all those tests... two hospitalizations! My bosses were great through a big part of it. They were there for me during the first hospitalization. I had to be out two weeks while Josh was in the hospital. Then, he came home and I went back to work. Things were good - well, no worse than before anyway.

Then, when it seemed Josh had a relapse and ended up in the hospital again just a few months later, they tried to be helpful. But nobody knew how long Josh was going to be in the hospital or what the outcome would be. They held out a while, and then sent me a formal letter telling me they could no longer hold my job for me. If I could not return to work within a few days, on a full-time basis, they would have to hire someone else. And I would be welcome to re-apply if they had another position available when I was able to come back full-time.

That letter came as we were learning that Joshua had a disorder so rare only about 25 people in the world were known to have it. There was no known cause and no known cure. And he would have to be on a ventilator of some kind probably the rest of his life. I was devastated! It was probably the lowest time of my life. I hadn't even been home more than once or twice in a month. And those times were very short. Joshua's birthday was coming up and he was in isolation in ICU because he had developed MRSA - a really nasty infection.

Joshua's doctor told me, as we were preparing to leave the hospital - after Josh got his trach tube in his neck - that he would need someone specially trained to care for his new medical needs. I really couldn't go to work outside the home now anyway. I needed to be there with him to care for him. After nearly losing him, I was glad to be with him. But with all the medical bills and being used to living on 2 incomes, we were REALLY struggling now.

Finally, I realized I had to do something to bring in an income - even if it meant taking Josh with me. So, I begged through my church for odd jobs. One of them was supposed to be a temporary job - for two weeks - taking care of an elderly couple - the parents of a church member - in their home. The woman had a trach and was bedbound. That temp job turned into one that lasted three years! They had to pay out of their own pockets, so the pay was minimal - but every little bit helped. I stayed there much longer than I had planned. And during that time, we got Josh Medicaid, finally set up nursing care which went from one nurse overnights 6 nights a week to almost 24 hours a day weekdays and overnights on the weekends. With everything in place, and once I helped get the couple hooked up with the people to get them help from the state to pay for their care, I decided to quit there and look for a new job.

I was hoping to get one in Joshua's school, so I could be close to him. Or at least a job in one of the schools in our district. When I tried and failed to get hired on for a single position in any of the schools (they already hired someone else before seeing my application), I began looking for any other job I could get in the area. I only got called on one interview. And it sounded very promising. I could use my skills in an office setting and there was room for advancement. It sounded great! They told me I should be hearing back from them in a day or two but I never heard another word from them. I have no idea what happened. But I was disappointed.

I have great faith that the Lord has a path for me, so I felt sure that God just closed that door because He was going to open another one, the right one in His time. So, I spent my days... many of them... searching for job openings and filling out applications, emailing my resume and praying. Meanwhile, our bills are piling up and we are becoming worried.... even though we know God is in control.

We have had our house on the market since March with no bids. We wanted to look for one maybe a bit less expensive and single story. And we hoped that would happen long before taxes became due, because we did not have the money to save and pay our taxes. The sale of the house would take care of that, we figured. And with my not finding a job and not a single tour of our home in a while, we were really becoming nervous.

Then, yesterday, I got a phone call. It was from a daycare center near our house, where I had put in an application (Josh really wanted me to work there because it was so close and he passes it everyday on his bus). They asked me to come for an interview that same day. I did and they offered me a job. The pay is still very little and at least for now is only part time. But any income is better than none. And I feel blessed that I won't have to travel far to go to work. I will still have time for volunteering at Joshua's school - which is something I decided to do since I couldn't actually work a paying job there.

I am still hoping a job will become available at the school - maybe one where I can use my skills on the computer, etc. But until then, I get to enjoy the company of some sweet babies at the daycare.

Well, I've written a long enough book here today. I need to get so much done still, I had better wrap this up and get moving! God bless you all for reading and caring about us!