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