Tuesday, October 27, 2009

Sonogram Pictures of Grandbaby

Josh is doing well with his pacers overall...
I'll write an update with more specifics on those soon.

But I just had to share these brand new sonogram pictures taken this morning of my grandbaby (Steffany's unborn baby). It's definitely a boy. His name will be Logan Wyatt Boyd. He is due January 18th. He is estimated to be 3 pounds now.. which is right on track.. and everything looks good, according to the tech who did the sonogram.

Wednesday, October 7, 2009

Pacers are ON!

FINALLY we went to the doctor yesterday, October 6th, and got to turn on Joshua's diaphragmatic (breathing) pacemakers.

What exactly does that mean? What all is involved?

Well, check out this diagram again:

It shows an electrode implanted near the neck that connects to the phrenic nerve. The phrenic nerve causes the diaphragm to contract. Then the diaphragm contracting makes air suck inside the lung. When it releases, the lung pushes the air back out.

In the diagram above, just below the electrode is a receiver. It receives impulses and sends them to the electrode, causing the stimulation for the diaphragm to contract.

Both the electrode and receiver were surgically implanted into Josh's chest back in June. His incisions and placement of the devices were a bit different than in the diagram above. Here is a picture of Josh's incisions from back in June and July.

He has two over the nipple area and two underneath. The two above are very deep where the doctor went in and placed the electrode around the phrenic nerve. The two below are where the doctor made much shallower cuts to make pockets to hold the receivers. The receivers are about the size of quarters. The electrodes and receivers look like this:

Over the receivers, on the outside of the skin, when you are going to turn on the pacers, you wear antennas. They look like this:

The antennas plug into a small box, called a Mark IV Transmitter. It looks like this:

The box sets how strong the "shocks" are to make the diaphgram contract and it controls how often it sends the shocks. There are controls for strength for both the right and left lung. And you can turn on or off each side. This box is worn on a strap that can be connected around the waist like a belt.

Well, yesterday, we went to see Dr. Kelly Smith, Joshua's lung doctor (pulmonologist) in San Antonio. He placed the antennas on Josh's chest with the circles around the receivers. We held them in place with a wide Ace bandage we bought. He then plugged in the antennas in the Mark IV transmitter box. And he turned on just the left side, to set the strength. And for the first time, we saw how it looked when the shock made Josh's chest move and take in a breath. I hope you can see this video I took showing the left side pacer working:

If not, here are some still pictures from the doctor's appointment:

The doctor gave Josh a break after setting the left side. Josh got back on his ventilator and the doctor went to see another patient. Then, he came back and set the right side. Then, he turned on both sides at the same time. He adjusted and readjusted many times the strength on both sides. And the doctor changed the breath rate several times.

All the while, we kept Joshua's trach hooked to his End Tidal CO2 monitor (a tube that connects the trach to a box that checks how much CO2 is in his breaths). And we kept his pulsox hooked up to his finger. That checks the amount of oxygen in his blood. It also tracks how fast his heart is beating.

When Josh was off his ventilator and we started the first side of the pacers, making adjustments to strength and rate, his CO2 went up to the low 50's which is a bit too high. And his oxygen saturations were down in the low 90's to high 80's. But by the time the doctor got everything set just right, the CO2 went down to the low 30's and his oxygen saturation went up to near 100 and stayed there. Both those were perfect! And his heart rate went from being over 100 beats a minute to down in the low 80's - much better.

We were very pleased with the results. But we have to keep in mind that using the pacers will make his diaphgram muscle pretty tired out and sore, since he's not used to it working so hard like this. So, he is only using his pacers for short times and then taking breaks. He will stay on longer and longer as we go, as he tolerates it. Josh gets to decide and that is great.

The only problem we have seen so far, and it concerns me a little, is a little blistering around the top outside part of the antennas on Josh's chest. I noticed them this morning as we went to put the pacers back on for today. Josh didn't complain about them, but I could see it was a bit worse on the right side than the left. The right side is set a bit stronger than the left. I'm not sure if that is the reason for them or not. But, I put ointment on them and will check on them again tonight. If they get worse, I will have to call the doctor and see what he recommends.

Well, I've gotta run now. I've got to head to work soon for my third day working in a daycare center!

Thursday, October 1, 2009

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!

Discovery Documentary - Life or Death : Battling to Breathe