May 27, 2008

Medical Update on Jim
By Melanie

We thought it was time for another medical update on Jim. It’s been 16 months since Jim’s diagnosis, one doctor thought he would be gone by now (he didn’t know Jim!!). The ALS has taken its course the way it wanted. It has progressed as they thought it would but on it’s course, or maybe I should say, Jim’s course.

Our quarterly appointment with OHSU went as expected; everyone noticing that Jim’s speech had declined substantially. So visiting with Melanie Fried-Oken, the speech pathologist was our priority. It is time for an augmentative communication device so we will visit her again in mid-June to be “fitted” for the proper computer. It will save Jim energy and his voice for when he needs it.

The ALS is causing the nerves in Jim’s diaphragm to die, thus rendering his muscles useless. Without diaphragm muscles outside equipment is necessary to breathe. At night, Jim is using a V-Pap machine which breathes for him. He now has to use it during the day sometimes when he gets tired. All of his doctors think by using both the V-Pap, and the speech device it give Jim more energy to use for the things he loves to do.

Dr. John Silver, Jim’s pulmonologist, will be his primary doctor from now on. Keeping Jim breathing and his lungs healthy are our main goals. What’s really great is Dr. Silver will also take care of Jim’s feeding tube!! Who Knew! In case it becomes infected or needs to be changed. He ordered another new machine for Jim it is called a “Cough Assist”. Because Jim is unable to cough he can not get the extra fluid and mucus out of his lungs, this machine will do that for him. (Lincare, a home medical equipment provider, is great. They have taken very good care of Jim).

There is an entire regiment of things we do each day to keep Jim healthy and happy. So, FYI, I have attached a daily schedule to give you an idea of what we do.

Time
Jim’s Daily Medical Needs:

7:00a Administer morning drugs through tube
7:30 Change feeding bag to 500ml water, set rate at 500ml/hour
8:00
9:00 Use Nebulizer
10:00 V-Pap if necessary, Cough Assist machine
11:00
12:00p Administer noon drugs through tube
1:00 V-Pap if necessary
2:00 Use Nebulizer
3:00 250ml food and water through tube
4:00
5:00 Use Nebulizer
6:00
7:00 V-Pap if necessary; Cough Assist
8:00
9:00 Administer evening drugs through tube
10:00
11:00 Hook up 1500 ml enteral bag for night time feeding, and V-Pap
12:00 Good Night

Well, that is about all I have to report. Jim and I are well and trying to be as happy as we can. You have definitely helped us to achieve that one.

Blessings to all,

Melanie


Now it’s my turn…

Wow, what a month, make sure you visit my website www.jimculveyhouse.com as my dear brother in law Alex made a lot of neat changes. There’s a short video of my life, pictures from the golf tournament and my honor by the National MDA-ALS National Division as one of the 31 people (one per day) they picked from across the country of about 35,000 people, that are fighting with their disease by doing something to help the cure for the cause during ALS Awareness Month. As you’ll see on the site May 13, 2008 will always be known as Jim Culveyhouse day.

Even though I am quite appreciative of the honor, if you know me well enough you know that has no bearing on why I’m doing what I’m doing and working so hard at it. I just pray for the day when people like me that get inflicted with the disease have some hope for a recovery instead of the incurable way it is now. People have no idea how it not only affects the inflicted one, but their spouses, their families and their friends also. And it’s going to get worse, MUCH worse.
The $23,000 the golf tournament was great and each of the pros stated they would bring a friend next year which will double the event. Our head pro, Dana Londin announced that the tournament will be perpetual taking place every year around the same time as a legacy. That makes you feel good.

We had by far our best month ever and just passed $285,000 in total donations and I can see it spreading across the country to people I don’t even know which is great. I can’t thank the people enough who have made donations no matter what the amount, every bit counts.
The minimum is a $1.00 and I know it works because I’ve received $1.00 from four different children that I’ve designated “Super Patrons” on the web site.

This is where you would put in your designated amount: https://secure.mdausa.org/jimculveyhouse/ and there it is under “other” you can give a minimum of one dollar.

Well summer is almost here and we have more events planned so keep looking at the site. If you want to be taken off my contact list just let me know at jculveyhouse.com. God bless everyone and enjoy your families and friends and remember what Memorial Day is all about..