It's here!!! Ron tells his story

Love it when my hubby shares!. Though a very condensed version, Ron eloquently shared with our youth group a few weeks ago. Below are his thoughts from that evening.

http://youtu.be/84-WEQDgTeA

Hi family and friends,

The video of my story (covering the last few years) shared with our youth group is now available through the above youtube link. What a rewarding time it was for me, but so much more, I pray it will be something that God can use and others will see their need for Him; or that those who already know Him will find comfort in the same way that I have through faith and trust in Him.

Wanted to give a little background to how this talk came together. For a LONG time now, I have struggled with the fact that I have plateaued in the progress of my healing. Though, I may look good physically, (or so my wife says); I continue to struggle with many health issues. This has caused me great anguish thinking that I should be getting better, not just staying the same.

Two things happened recently that have changed my perspective. One, I finally realized that God has me where I am for His purpose; for whatever reason, this is where He wants me to be. Two, a sermon a few months ago from Dr. Reccord, who had been one of our iterim pastors over the last year. Part of his message was; the worst word in our language is "almost". I almost did this, or I almost followed through on that. This spoke volumes to me at the time and brought me to a point of saying to God; "use me as I am; I'm tired of trying to figure this out on my own."

Not a week later, Aaron and I went to a men's breakfast at our church and Steve, our youth minister and the one in the video with me, sat with us. He asked how I would feel about speaking to our youth on a Wednsday night sometime soon. I could have easily said "no, now's not a good time" seeing that I'd been going through a rough patch, but the word "almost" rang out loud and clear. Sometimes we need a good slap to get things going.

How glad I am that I said "yes" and pray that God will continue to use me "where I am".

Love you all,

Ron

PS: Feel free to share this with anyone you choose.

Five Years

Nov 4, 2007...5 years ago today... my boys were frantically trying to get home from college and/or out of state work, to see their very ill Dad; only to be greeted with a very grim prognosis -- despite the doctor's best efforts. Caring medical staff were doing everything within their power to keep him alive until their arrival.

 Praise God for His mercy and grace! He blessed us immeasurably; not only allowing them to arrive in time to be with their Dad, but sustaining his life!

 Though the journey has been long and at times most difficult; God is faithful!

 So much more I could say; yet, I don't want to steal Ron's thunder! He is sharing his testimony with our youth this Wednesday, November 7. Please pray for him as this date approaches. He's coming off of a rough few weeks. Pray for his health, strength/stamina, confidence, clarity of thought and communication.

 I'm hoping he will put his thoughts to words and after Wednesday, I will be able to send out an email from him!

 In the meantime, know how much we love and appreciate each of you! Can't imagine these last 5 years without your love & support!

 "I will lead them by ways they have not known, along unfamiliar paths I will guide them;
I will turn the darkness into light before them and make the rough places smooth.
These are the things I will do; I will not forsake them."
Isaiah 42:16 NIV

Better Day

Ron's fever finally broke around 11PM and he had a restful night. No fever today and only one little episode this morning. Other than feeling, as he said, "whooped", it has definitely been a better day!

Thank you, for standing in the gap on our behalf. God is faithful! He relieves our anxiety; calms our fears and gives us the grace and strength to not only "survive" but find hope in each day!

"Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.” Joshua 1:9

Bless his heart...Ron's episodes continued to get progressively worse throughout the day! Last night he had fever. Today's first episode added uncontrollable trembling to the fever; chills set in late afternoon and tonight's episode had all of these with fever spiking at 103.5! Love the way hubby does things in stages, adding another symptom each time. These episodes tend to increase in severity and length with the first one lasting 25 mins and most recent one lasting 45 minutes. The trembling causes his muscles to cramp and draw up. Once they end, he is TOTALLY wiped out! 

Infectious disease doctor said treatment remains the same; IV antibiotic for 10 days. He also wants us to call him with an update first thing in the morning.

He received his first dose of the new antibiotic this afternoon. Hopefully, by tomorrow afternoon, he'll feel like a new man!

Again???

Ron's had a crummy couple of days. Fever, aches...overall blah! Today, as an added bonus, the uncontrollable shaking episodes came on, similar (minus the pain) to what he had back in March when his PICC was infected! Poor guy; these episodes leave him TOTALLY wiped out for the next few hours!

Infectious Disease called yesterday evening with results from Friday's cultures and he has yet another (NEW!) infection. YEEHAW! New infection is E. cloacae (not to be confused with E. coli).

He will begin different IV antibiotic today for 10 days. They will repeat cultures shortly thereafter. Praise God we are able to administer here at home.

Please pray the antibiotic will take affect quickly and he will have no reactions/side effects.

Also pray for a good state of mind for both of us...at times we are so weary of the battle!

Read today in my devotional: It isn't the load that breaks us down, it's the way we carry it.


"Take my yoke upon you, and learn from me, for I am gentle and lowly in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light.”
Matthew 11:29-30


This is what we strive for daily! We know He is faithful, however, we are needing a little help in lifting this yoke upon our shoulders today.

Much love, Christie

It's amazing what a difference removal of 'dirty' PICC line along with 48 hours on big gun IV antibiotics makes!

Happy to hear from Interventional Radiology doctor that new PICC went in without a hitch. AND he has had no episodes since noon Friday! Praise God!

Now, we wait to see what cultures grow and go from there.

Thank you for your prayers on our behalf.

The fun continues...

Rough 24 hours around here...Ron has had 3 episodes where he has been hit with a sudden onset of symptoms including fever spike, chills, tremors, severe muscle cramps in legs and severe pain in neck, back and down spine. The episode lasts 15-20 minutes and ends as quickly as it has come on. Each episode has been more intense and has lasted longer than the ones previous. It's so crazy, when he's in the midst of one, it is horrendous; other than when he's been in recovery after surgery, I've never seen such intense trembling. However, shortly after it ends, he feels back to "Ron normal" (other than stiffness in his neck, which has been pretty constant since surgery).

Of course, first culprit they look at is PICC line as his symptoms point to line sepsis (infection in bloodstream of the PICC line).

Fortunately, yesterday he had follow-up appointment (from surgery in Jan) with infectious disease doctor. They did cultures on both lines of his PICC as well as the opposite arm to see how things are going now that he's been off the vancomycin for a week. As of this evening, ALL cultures had already begun to grow something, indicating he definitely has an infection. As of tonight they have re-initiated IV vancomyacin and added another IV antibiotic he will take twice daily. He will have his current PICC (only two months old) removed and another placed in a different area tomorrow.

Please pray for a restful night with no episodes. And as we go to Presby tomorrow for PICC replacement; our 3rd "visit" this week! Ugh. And join me in praising God for our fabulous doctors (and their medical staff) we are truly blessed to have. They are so wonderful to always make themselves accessible to us. We appreciate them for this as well as their expertise, coupled with their compassion and kindess.

Thanks so much! We appreciate your faithful prayers on our behalf.

Finally some good news to report!

Praise God!!!!

It's long and detailed so I'll try to give the condensed version. The cultures continue to NOT grow anything; other than a nonspecific random growth that was never able to be replicated. This bacteria was in the mycobacterial family but again, has never replicated. Therefore, the consensus of the doctors is that it was a contaminant obtained when they presented the tissue for sample, rather than a true germ from his body, that caused the one time mycobacterial growth.

There is a very slim chance that he could actually have this mycobacterial, however, at this point they don't think so. He does not have/ nor has he ever shown any other presenting symptoms of this bacteria.

The mycobacteria family is found in our everyday environment; on the skin, in water, in air, etc. It can be obtained through an open wound (including a PICC) or even inhaled. Two of the most heard of diseases in this family are TB and leprosy. He has been tested multiple times and in many ways and there is NO evidence that he has either of these diseases.

Seeing that his PICC, his blood and the removed disc all had staph in them; they believe the entire infection was/is "just" staph! YIIIPPPPEEE!

So, what happens now? He will continue on the IV Vancomycin for 6-8 weeks. They will vigilantly monitor weekly labs; specifically watching for his inflammatory markers to continue to trend down, as well as hemoglobin, white blood cells & kidney function to remain stable. An MRI will also be repeated at 3 months to look at infected areas.

Up to this point, his bloodwork over the last few weeks has looked great! There is also a specific test that measures the Vancomycin level which tells them if he is getting too little, too much or just enough and his is staying right on target. The one downside is the Vancomycin decreases his appetite.

And to catch up:

Last week was his post-op appointment with the neurosurgeon. Everything looked very good; staples were removed and use of collar was discontinued. What a relief!

One kicker is...the continued back pain from the lumbar issues. Unfortunately, infection trumps back pain. Aggressive treatment is not an option, until they are sure infection is cleared up. He has been able to do a little physical therapy--passive stretches (meaning no firing of muscles, so, he is to keep his muscles relaxed while muscle is stretched for him)--to try to relieve some of the pain.

Not so short, but it's definitely the condensed version!

Thank you for not only holding us up when times are rough, but celebrating & praising with us when times are good!

Please continue to pray for complete healing, as well as, relief of pain. Poor guy can't even sit in his recliner. Due to the amount of back pain, he must sit in a straight back chair, ugh!

Love you guys!
Christie

"Stand firm and you will see the deliverance the Lord will bring you..." Exodus 14:13 NIV

I apologize for not keeping everyone updated; settling into our new routine has kept me super busy!

Ron's had good days and bad; days where he is able to get around fairly well and others where he is totally dependent on the walker. I'm so proud of him, even on the bad days, he tries to keep in mind the good he has had, instead of focusing on the pain of that day.

Tuesday, he has a follow-up with neurosurgeon and will have staples removed. He is also hoping he will be able to get rid of the collar at this time, too.

In the midst of all that's been going on, we have dismissed home health service and TPN pharmacy and are now with a company that is able to provide both services together. We are blessed to be using Digestive Health Associates of Texas. They have 5 locations which are specific infusion therapy centers, providing an RN who will do PICC dressing change as well as blood draws, all in one stop! The most beneficial part of this is that they specialize in infusion therapy and PICC care, so they are very familiar with this type of care; as opposed to home health nurse who only had 1 patient with a PICC -- Ron! Four of their 5 locations are in Dallas and then they have 1 promoted as Ft. Worth; which happens to be located in Bedford, just down the street from where Ron had to go for weekly blood draws. So excited to have all of his needs taken care of in one stop!

Please continue to pray for his tremendous back pain. There is not a lot he can do, other than take pain meds and muscle relaxant, which tends to make him pretty fuzzy-headed. And that blood cultures will reveal something conclusive, quickly would be nice.

Thank you for honoring us by standing in the gap with your continued prayers on our behalf.

Love, Christie


"I will lead them by ways they have not known, along unfamiliar paths I will guide them;
I will turn the darkness into light before them and make the rough places smooth.
These are the things I will do; I will not forsake them."
Isaiah 42:16 NIV

Ahhh, the good life!

Nothing beats: Home, recliner, newspaper, coffee...and remote!

Sorry for the delay...we've been home since Friday night and are still trying to get caught up on rest, laundry and generally settling into our newest routine.

I'll try to fill in details soon. In the meantime, please continue to pray, especially for Ron's pain to decrease and for peace of mind for me as I am at work and safety for him as he is home alone.

Thanks so much!

Beautiful day in the neighborhood!

Last night's IR, though long, accomplished the task! PICC was able to be placed in right arm, praise God! It was quite complicated (go figure!), with Dr. D having to use a balloon to widen vein in order to allow PICC to travel along. Ron arrived back to his room midnight(ish) and it was after 1 before they were able to get him settled in, meds administered and TPN started.

Today, I got my first peek at the incision site on his neck as the neurosurgeon examined it and then as his nurse removed the drainage tube and taught me how to perform dressing change. It's really not that bad, a nice little row of staples. However, I must confess, it's a little daunting knowing I'm messing with an unstable neurological area since they had to remove a disc; and the fact that his esophagus is sore from being moved. YIKES! He will have staples removed 10 days post-op; and will most likely be able to get rid of the collar at that time.

Infection disease doctor reported he was surprised to find that as of today (Thursday) disc sample is growing staph, as well as the other unknown nasty bug, therfore will need to be on Vancomycin for at least 6 weeks. Whatever antibiotic is best suited to other bacteria will be added when we have specifics. This was a surprise in that staph bacteria typically show up much sooner and this one was really slow-growing.

Gallium scan came back completely clear. This was another huge surprise in that it didn't even "light up" in the area of the known infection sites. Gallium scan uses isotopes (radioactive material) to look for inflammation, infection, or cancer in the body. The isotopes will gravitate to these types of area. They were anticipating "hot spots" running along the left arm where the (infected) PICC was located; in his neck where the big infection is located and even in places where he has arthritis, as well as his lumbar region where he has the bulging disc. Absolutely nothing! So crazy!

On the whole, it was a pretty decent day! We were able to take a couple of good walks (without assistance of walker) , even went outside in the afternoon for a bit to enjoy the beautiful sunshine!

As long as he has a good night and no other issues come up; we are on target to go home tomorrow. Not really looking forward to having to learn to administer IV antibiotic, or be responsible for one more medical thing; but, oh how we've missed our home; our comfort zone!

Here's to a good night!

Love, Christie