Justin

[Lynlw]

Lyn-I know you said before that they gave Justin 6 weeks of therapy for
endocarditis and also 6 weeks for the osteomyelitis. I would question this,
I think,only because the antibiotic takes SO much longer to infiltrate bone,
than it does softer tissue. Bone (and cartilage) has a much smaller amount
of circulation,so it should take maybe 2- 3 more weeks of therapy--atleast
this is the way I see it. I'm sure you thought of this before,but I wanted to
bring it up in any case. I know on the other hand that some of these antibiotics
can be harsh on the kidneys, and the doctor may be trying to balance that out too.
My best- Dina

Thanks, every thing I have read for first time osteo they use antibiotics for 4-6 weeks IF it was somewhere they could operate and remove the infected parts and the margins around them. This is also why they did the muscle flaps because the muscle has much more blood/oxgen ect than bone and beside stabilizing the sternum, since they remove the wires in the infected area, it helps with the healing. There was a discussion at the time, depending if it was osteo/w/ mediastinitis, OR media w/ osteo, because one was 4 weeks and one was 6, so they decided to play it safe and do 6 weeks.
In osteo where they can't surgically remove the infection, either because of what bone it is in,or because of the persons over all poor health can't handle surgery, then they have to use them much longer, to years because without surgically removing the infection, it's never cured, just controlled.
But I'm thinking since it came back, he probably will need longer.

Please know I appreciate all thoughts, suggestions opinions,questions to ask. it helps me remember what happened, was discussed years ago (and why I aam thankful I had set up the caringbridge page years ago, it helps me refresh my mind since so much becomes a blur.) ect and you all are helping me think of questions to ask and think ahead to answers for various replies I might get. It is so frustrating thinking of all these things over the weekend and having to wait until the week to start working one getting more opinions ect

 

[Praline]

I am so osrry to hear about Justin's problems.I will keep praying.

 

[Andrew'sMom]

Sending prayers your way ...

 

[Lynlw]

UPdate

UPdate

Not much to say, alot of back and forth phone calls, BUT we have a meeting with the Heart surgeon on Wed (Dec 2) at 3 pm. so will know alot more then. The good thing is Justin was having hot flashes and sweating a couple days before the "thing" showed up, but didn't really think anyything of it (no fever) but a couple days after the Bactrim strarted the thing looks better and he hasn't had any of the sweating ect.
He is having some stomache problems from the bactrim, but they were only bad 1 day and fine today.

 

[Guest]

Not much to say, alot of back and forth phone calls, BUT we have a meeting with the Heart surgeon on Wed (Dec 2) at 3 pm. so will know alot more then.

Good ... GOOD LUCK!

Thoughts/prayers en route, of course.....



Cort | 36swm.IL | "Mr Monte Carlo"."Mr Road Trip" | pig valve.pacemaker ...drive south, Nov 09
WRMNshowcase.legos.HO.models.MCs.RTs.CHD = http://www.chevyasylum.com/cort
"It's so lonely being stranded with a dream you can't let go" ... Deborah Allen ... 'I Hurt For You'

 

[Dina]

Not much to say, alot of back and forth phone calls, BUT we have a meeting with the Heart surgeon on Wed (Dec 2) at 3 pm. so will know alot more then. The good thing is Justin was having hot flashes and sweating a couple days before the "thing" showed up, but didn't really think anyything of it (no fever) but a couple days after the Bactrim strarted the thing looks better and he hasn't had any of the sweating ect.
He is having some stomache problems from the bactrim, but they were only bad 1 day and fine today.

Do you think there is any way to avoid the surgery and just give him a longer course of antibiotics,or is the bacterial growth in the sternal tissue gone too far for that...?
Or,since I am sure he will need some debridement,but maybe it won't be too
extensive

 

[Lynlw]

Do you think there is any way to avoid the surgery and just give him a longer course of antibiotics,or is the bacterial growth in the sternal tissue gone too far for that...?
Or,since I am sure he will need some debridement,but maybe it won't be too
extensive

He definately needs debridement, since his sternum is "clicking" at the top it is moving, (and hasn't clicked at any appointments since he last surgery) most likely it isn't just close to the surface of the bone. and he also need to have another muscles flap, (which was actually the harder part to recovery from, pain wise and getting movement back, Justin was surprised how much it hurt, since he never had real bad pain from his OHS, and one of the docs said basically it is like when someone tears their muscle, but his was cut)

Plus since it came back 2 years later even with cutting all the bad tissue out and weeks of antibiotics

The new specific prayer is that the infection is "just" in the bone and hasn't spread to under neath. Last time it was in his bone and under it all around his heart, but his heart was fine. Since he has valve, conduit old pacer wires, surgical clips ect, all of that is a concern.

 

[bvdr]

Thanks for the update Lyn. You and your family are in my prayers this Thanksgiving. Enjoy your day, let the antibiotics do some more work while you take a day off and just spend time with each other. Lots of luv, Betty

 

[briansmom]

I've been thinking about you guys. Hope you had a happy Thanksgiving. Prayers and happy thought coming your way!

 

[njean]

My prayers for Justin & wishing both of you the best of luck with your upcoming appt this week.

We'll be anxious to get an update after your appt. Take care.

 

[river-wear]

Hi Lyn, I'll definitely be wishing for it to be "only in the bone" and not widespread like last time! Justin is lucky to have a mom who is not "just a mom" but his champion for the best care possible.

Here's an article related to what Bob H. posted regarding bacteria lying dormant:

http://www.scientificamerican.com/article.cfm?id=wake-up-and-die-activatin

And for more reading in case you want background info...

This link has an article about TB bacteria and the "wake up call" to activate:
http://www.timeshighereducation.co.uk/story.asp?storyCode=178089&sectioncode=26

And one about the actual experimental drug to "wake up" TB to kill it (same principle is thought to apply to other bugs):
http://www.sflorg.com/comm_center/medical/p764_72.html

Michele

 

[Duffey]

I'm glad to read the Bactrim is doing some good. Is he eating yogurt to counteract the effects?

 

[Jackie]

My prayers and best wishes are with Justin and your family.

 

[netmiff]

good grief, how much can you guys take? My thoughts are with you

Sorry, I am late, just catching this one now . .

 

[Lynlw]

Meeting with Surgeon

Meeting with Surgeon

First I am SO sorry, I thought I updated wed, my brain is missing

The meeting with Spray went well. HE will be doing the surgery and when I said Justin's conduit being right under his sternum is a concern to me, both in the infection hitting it AND when they open his sternum, he agreed and said it was a concern for him too, (so that made me feel better about being a PIA last week) . Anyway He was glad it looked so well, but started telling Justin, when you have these things, even when they look good, until you get the problem cut out, it can and will, keep coming back. He also said until they trace the "sinus" (my new word) After he is open they shoot a blue dye in and everywhere it travels to needs cut out, they won't know how much /far they have to go, what they have to do, but hopefully it is small and contained and hasn't spread much, especially since he has the conduit/valve, old pacer wires, surgical clips ect.

One funny time was when Dr. Spray saw Justin's tattoo, he hadn't seen it before and laughed when Justin took his shirt off.
Justin did ask since it looks so good and it is already Decemeber, he has all his finals on the 17th and if at all possible, he'd like surgery the 18th or after. but wants to be good to start the next semester in the end of Jan. (the concern about school is since they have to move a pec muscle, it takes a while to get full use of his finger,hand arm ect and IF they have to use the left pec (plan B) it would be even harder since he is left handed, so just writing, typing ect will take some time and work on Justin's part) Dr Spray said that (time frame) shouldn't be a problem, but they have to talk to Lowe (plastic surgeon, they move the muscles). OF course IF it starts looking worse or Justin gets a fever ect, then he will have to be admitted and we'd go from there.

We should have a date by the beginning of next week, since it is Friday I would be surprised if we hear before then.

 

[river-wear]

Thanks for the update, Lyn. He'll have another interesting story when people ask him what he did over the holiday break.

 

[ottagal]

Lyn,
My apologies for the late reply. Thanks for the update on Justin and I will certainly continue to keep him/you in my thoughts and prayers.

 

[Mentu]

Lyn & Justin, I think of you often and hope that this infection doesn't prove to be extensive. I know how I have felt this past year dealing with a relatively straight forward problem and surgery. You both must be pretty extraordinary people to persevere so. I shall keep you both in my thoughts and hope to hear that Justin has some good news.

Larry