Monday, April 12, 2010

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

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.

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