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
Wednesday, February 8, 2012
Saturday, January 28, 2012
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
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
Sunday, January 22, 2012
Ahhh, the good life!
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!
Friday, January 20, 2012
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
Wednesday, January 18, 2012
The new update is here! The new update is here!!!
I'm sure that's how you feel each time you see an update from us, right?
Some good news and some not so good news to report.
Good news: probably going home in the next couple of days! YIPPEEE!!!!
Not so good news: they still don't know the specific type of bacteria.
They do know it's not staph or it would have grown something by now. Which means it will probably be another 2-6 weeks before they get any results. They plan to take a portion of the sample - a "DNA fingerprint" and send it off to the University of Washington for specialized testing to determine the genetic makeup of the bacteria. In the meantime, he will be sent home to wait, as well as heal, from all he's undergone this week.
That being said the type of bacteria will most likely be very difficult to treat since it multiplies slowly but wreaks havoc. And it has most likely been in his system a while, smoldering. Crazy part of all of this is the fact that he hasn't had a fever, no elevated white blood count, no chills or any other typical symptoms of infection. Ah, my atypical guy!
They did find his PICC line is infected by a bacteria in the staph family, so he will be treated with IV vancomycin for 7-10 days (at home). They will then do another set of cultures to make sure it is clear. No, the "big" infection is not the same type of bug.
So, why don't they just go ahead and give him a broad spectrum antibiotic?
They have to know specifically what they’re treating - otherwise it may do more harm than good.
It's 11 PM and he's been down in IR since 8:30, due to the PICC infection. They are removing the current PICC in his left arm and placing either a new PICC, or possibly a port, depending on a viable location. We're praying for a new PICC in his right arm, however, since he had an infection in his right arm a while back and had to have a vein removed, that may not be an option. We've always been told small opening, potential for small problems; big opening, potential for big problems. And some of his PICC-related problems in the past have not seemed so small to us, so we'd love to be able to stick with a PICC.
Nuclear scan is complete and we should know results tomorrow, so I will include IR update at that point.
Good night faithful ones!
"God will allow no suffering, no trial, above what you are able to bear." I Corinthian 10:13
There is a time coming in which your glory shall consist in the very thing which now constitutes your pain. - George Matheson, Scottish theologian and preacher
Some good news and some not so good news to report.
Good news: probably going home in the next couple of days! YIPPEEE!!!!
Not so good news: they still don't know the specific type of bacteria.
They do know it's not staph or it would have grown something by now. Which means it will probably be another 2-6 weeks before they get any results. They plan to take a portion of the sample - a "DNA fingerprint" and send it off to the University of Washington for specialized testing to determine the genetic makeup of the bacteria. In the meantime, he will be sent home to wait, as well as heal, from all he's undergone this week.
That being said the type of bacteria will most likely be very difficult to treat since it multiplies slowly but wreaks havoc. And it has most likely been in his system a while, smoldering. Crazy part of all of this is the fact that he hasn't had a fever, no elevated white blood count, no chills or any other typical symptoms of infection. Ah, my atypical guy!
They did find his PICC line is infected by a bacteria in the staph family, so he will be treated with IV vancomycin for 7-10 days (at home). They will then do another set of cultures to make sure it is clear. No, the "big" infection is not the same type of bug.
So, why don't they just go ahead and give him a broad spectrum antibiotic?
They have to know specifically what they’re treating - otherwise it may do more harm than good.
It's 11 PM and he's been down in IR since 8:30, due to the PICC infection. They are removing the current PICC in his left arm and placing either a new PICC, or possibly a port, depending on a viable location. We're praying for a new PICC in his right arm, however, since he had an infection in his right arm a while back and had to have a vein removed, that may not be an option. We've always been told small opening, potential for small problems; big opening, potential for big problems. And some of his PICC-related problems in the past have not seemed so small to us, so we'd love to be able to stick with a PICC.
Nuclear scan is complete and we should know results tomorrow, so I will include IR update at that point.
Good night faithful ones!
"God will allow no suffering, no trial, above what you are able to bear." I Corinthian 10:13
There is a time coming in which your glory shall consist in the very thing which now constitutes your pain. - George Matheson, Scottish theologian and preacher
Tuesday, January 17, 2012
Good News
Happy to get some good news today! TEE (ECHO) came back showing no "vegetation" which means no infection there! Praise God!
Sugical biopsy turned into disc removal since the entire disc was infected. Neuro-surgeon said the procedure went well, he was especially happy to find it has not spread to the spinal cord. He had a rough time in recovery with pain management but finally made it back up to his room around 8PM. He has staples in his neck, is in a soft collar, has a drain tube and must stay on his back at 20 degrees. He continues to be in alot of pain so please pray this will diminish quickly.
Other than 2 more neuro scans, I believe the major stuff is over. Hopefully they will now begin to get answers as to what type of infection we're dealing with and get him started on the most effective antibiotics.
I'm sure there is more to report, but oh so tired this evening; I'll try to catch up tomorrow.
Thanks for your contined prayers!
Sugical biopsy turned into disc removal since the entire disc was infected. Neuro-surgeon said the procedure went well, he was especially happy to find it has not spread to the spinal cord. He had a rough time in recovery with pain management but finally made it back up to his room around 8PM. He has staples in his neck, is in a soft collar, has a drain tube and must stay on his back at 20 degrees. He continues to be in alot of pain so please pray this will diminish quickly.
Other than 2 more neuro scans, I believe the major stuff is over. Hopefully they will now begin to get answers as to what type of infection we're dealing with and get him started on the most effective antibiotics.
I'm sure there is more to report, but oh so tired this evening; I'll try to catch up tomorrow.
Thanks for your contined prayers!
Monday, January 16, 2012
Monday 1/16/2012
So thankful for an extra day off, allowing me to be with my hubby without using up one of my days from work...each and every one of them will be much-needed whenever he comes home.
Last night's dose of Ativan helped tremendously as it pretty much knocked him out for most of the night unfortunately, the pain in his back was still there with a vengeance this morning.
TEE (specialized ECHO) was performed today; isotopes were injected to begin Gallium scan tomorrow, and physical therapy came to show Ron some things to work on to help with lower back issues and to bring him a walker...at times, spasms hit so hard it renders his legs pretty much useless, just about brings him to his knees, thus the walker to help with mobility/stability and keep him safe. Will also give me peace of mind; there were a couple of times he really scared me when the pain hit--he was going down fast and I wasn't sure I could do anything to help him.
Dr. A spoke with IR and they deferred biopsy to neuro. Neurosurgeon met with us late this afternoon and plan was put in place to perform procedure late tomorrow afternoon. They are unable to do a needle biopsy therefore Dr. W will make an incision in the front of his neck, move the esophagus out of the way and take bone and tissue samples from C6&7 along with dura from in between these vertebrae.
I know we can count on each of you to continue to pray. Specifically to petition the Father on Ron's behalf to reveal the exact bacteria we are dealing with in order to target the antibiotics to cover those.
Hope to hear results from TEE tomorrow.
Much love, Christie
"When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown....Do not be afraid, for I am with you." Isaiah 43:2&5 NLT
“Faith is taking the first step even when you can't see the whole staircase.”
― Martin Luther King Jr.
Last night's dose of Ativan helped tremendously as it pretty much knocked him out for most of the night unfortunately, the pain in his back was still there with a vengeance this morning.
TEE (specialized ECHO) was performed today; isotopes were injected to begin Gallium scan tomorrow, and physical therapy came to show Ron some things to work on to help with lower back issues and to bring him a walker...at times, spasms hit so hard it renders his legs pretty much useless, just about brings him to his knees, thus the walker to help with mobility/stability and keep him safe. Will also give me peace of mind; there were a couple of times he really scared me when the pain hit--he was going down fast and I wasn't sure I could do anything to help him.
Dr. A spoke with IR and they deferred biopsy to neuro. Neurosurgeon met with us late this afternoon and plan was put in place to perform procedure late tomorrow afternoon. They are unable to do a needle biopsy therefore Dr. W will make an incision in the front of his neck, move the esophagus out of the way and take bone and tissue samples from C6&7 along with dura from in between these vertebrae.
I know we can count on each of you to continue to pray. Specifically to petition the Father on Ron's behalf to reveal the exact bacteria we are dealing with in order to target the antibiotics to cover those.
Hope to hear results from TEE tomorrow.
Much love, Christie
"When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown....Do not be afraid, for I am with you." Isaiah 43:2&5 NLT
“Faith is taking the first step even when you can't see the whole staircase.”
― Martin Luther King Jr.
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