Star54
Well-known member
Sending thoughts and prayers that all goes well ......
Justin
- Thread starter Lynlw
- Start date
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Again,I am thinking along the same lines of Lily.
IF they cleared it up properly in '07 should he have a relapse?
I am really hoping it is something that has just started brewing,as from
what you have said so far,there has been no fever and no pain.
Hoping its only a mild case-Dina
It is so weird just a couple days ago Jan posted in small talk about oste coming back after NINE years, I asked how /why who knew in a couple days we'd have the same thing going on.
river-wear
Well-known member
Wow, Lyn, your son is TOUGH! He's been through so much already. I'm sending my best wishes for a speedy recovery.
Michele
Michele
Lyn, this isn't at all what I hoped to read on your thread today. I know it just is what it is and you have to make the best of it but life sometimes can be so hard. Well you know that lots of people will be backing you up in prayer.
Like you, I was thinking how weird it was that Jan had posted about osteomyelitis returning after years and now Justin is doing the same. I liked what Mary (Duffy) said about praying about no temp appearing. Sometimes I think having some really specific needs to pray about helps. I'll be following along and even if I don't post sometimes I'm still out there. Cyber hugs to you!
Like you, I was thinking how weird it was that Jan had posted about osteomyelitis returning after years and now Justin is doing the same. I liked what Mary (Duffy) said about praying about no temp appearing. Sometimes I think having some really specific needs to pray about helps. I'll be following along and even if I don't post sometimes I'm still out there. Cyber hugs to you!
Thanks, IF I can get specific prayers, beside as easy as possible, I'm praying they can use some of his right pec muscle for the muscle flap again, that is possible and "Plan A". If they can't use the same one, they will have to move his left pec, that will just make things more difficult for him, because he is left handed, which is why they used the right pec last time. It's alot of work to get your arm/hand working fully after they move the pec muscle so not having full use of his left hand/arm, even for a couple days, will be tough both in doing alot of things , but even things that keep him sane in the hospital like using playstation, texting, his laptop ect. He'll make the best of it whichever way it happens, I would just like this to be aas easy for him as possible
gijanet
Well-known member
Good grief, Lyn!
Good grief, Lyn!
I just read your e-mail and thought I would check here to see if there was an update. I am sooooooooooooooooooooo sorry to be reading this. I know you joked recently that you needed to update Justin's page so they don't shut it down, but THIS is not the way to do it! Please do keep us posted and we will definitely be praying. Much love and many hugs. Janet
Good grief, Lyn!
I just read your e-mail and thought I would check here to see if there was an update. I am sooooooooooooooooooooo sorry to be reading this. I know you joked recently that you needed to update Justin's page so they don't shut it down, but THIS is not the way to do it! Please do keep us posted and we will definitely be praying. Much love and many hugs. Janet
W
westie
christmas
christmas
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really sorry to read about justin's problem, it is an awfull christmas presant. hope he is on the mend, permanently, soon.
it never occured to me we could have an incision/sternum wire infection one, two or more years after surgery.
is this common or is it as rare as lightning striking?
christmas
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really sorry to read about justin's problem, it is an awfull christmas presant. hope he is on the mend, permanently, soon.
it never occured to me we could have an incision/sternum wire infection one, two or more years after surgery.
is this common or is it as rare as lightning striking?
I think lightninig is much more common
He had a VERY Bad infection,in his sternum and under it aound his heart ,they had to cut away alot of his sternum (the surgeon said the bottom was mush), 10 days after his last surgery, was readmited had ER surgery (5 hours), about 2 weeks in the hospital, 6 weeks of antibiotics (june 07) I was posting here then, if you are interested there were alot of posts at the time. anyway after all of that it seems teeny little microscopic bacteria can stay in a pocket in the bone, not botherring anybody and then for some reason years down the road it pop back up. I knew it could come back,(very rarely) but usually that happens in the first year and if you make it thru that you are usually safe. IF it helps, I've been doing this for 20 years, spent over 8 months out of Justin's first 2 years in Childrens' hospital of Philly and have been on heart supoort groups since people started making them and having computers, and I can count on one hand the people I can think of that first had the mediastinitis/osteo needing muscle flaps and Until Jan posted about her osteo in her leg coming back years later, I never personally heard of anyone that happened to. I do know of people whos wires bother them a year or so after surgery and get them removed, but I don't know of any infections that started years after the surgery.
Justin tends to find these very rare things to do.
Here is the first thread from Justin's infection surgery 2 years ago if anyone wanted to read it http://www.valvereplacement.com/forums/showthread.php?t=21422&highlight=Justin+hospital+surgery
Oh Man, I am sorry to hear this. It sounds to me like you and Justin deserve a break! He must be one really great kid to seems to take these things in stride. I wish I had more of that temperment. I am sure I'd be a whiner and a complainer...
I hope the solution goes as planned and I'll be making a specific prayer for 1.) no Fever and 2. ) They can use his right pec muscle. and finally 3.) That once this is resolved it never shows its ugly face again!
Rhena
I hope the solution goes as planned and I'll be making a specific prayer for 1.) no Fever and 2. ) They can use his right pec muscle. and finally 3.) That once this is resolved it never shows its ugly face again!
Rhena
francie12
Well-known member
Sorry to have just seen this. Lyn, you and Justin have my prayers for a surgery that takes care of everything and is smooth and uneventful. I hope that the bactrim takes care of so much of the infection and that the rest will be minor. Justin is so strong. He is an inspiration. Plugging for both of you.
Herburban1
Well-known member
Interesting comparison with the lightning. Our camp was struck with us in it in Aug of 07. I wonder if that hastened my valve problem seeing that it was seriously the most scared I have ever been...
This makes sense. Hopefully this time they may keep him on the antibiotics
longer,to ensure total eradication. When I had endocarditis,they only gave me a 3 week course and I ended up with a relapse a couple months later,so if there is this large of a window with soft tissue,I can see how this could have happened. Since,after a short time of antibiotics,the bloodwork comes out as clean,and I guess the only real way to assess the presense of a pocket of infection would be biopsy(and bone scan,etc),the physician may have to do a certain level of guessing to determine if the infection is truly gone...? (Just thinking outloud here)
I am praying for the best outcome here,my best-Dina
He was on antibiotics 6 weeks after his surgery. I actually asked about a CT scan after the antibiotics, but from all the docs I talked to, cardiology in 2 hospitals, heart surgeons, plastic surgeons, infectious disease. They all told me the problem with a CT scan after is anything it shows, pockets ect would be there with the bacteria wiped out. We did have blood counts done for a while and his white cells count wasn't high like it would be in an infection. (and they were high when he was admitted with the infection) As a matter of fact he had complete blood work done just this summer, and I looked at the results again the other day and his white cells were normal.
Justin ALSO had BE when he was 11 (yes he is not the luckiest person) and he had the 6 weeks of antibiotics for that too. and I remember saying I liked that better, because we COULD do blood cultures to make sure it was gone and with this I kind of had to have faith, it really was gone since the vast majority of people it doesn't come back. One of the PAs told me Justin is always an outlier
This is just my theory, but Justin has been pretty run down lately, I wonder if that gives the hiding bacteria an opening to spread. Of course he could have been run down because his infection was growing, which came first the chicken? OH and even with this he has not had a fever, as a matter of fact the first person we saw the CT PA thought it couldn't be an infection because he didn't have a fever. However the CT Fellow felt a click in Justin's sternum, which is what started everyone getting concerned
Poor Justin......best wishes to him and you too Lyn.
(let's not talk about lightning strikes. I've had 3, real scary sh-t)
(let's not talk about lightning strikes. I've had 3, real scary sh-t)
I recently read about bacteria being a strangely social form of life, and that many bacteria remain dormant until something causes some to send a chemical message to the others to multiply. Apparently there's a body chemical of some kind that they sense that indicates there's a weakness or a chance for the colony to thrive. They then send each other messages to reproduce (perhaps like plant pheromones, so plants of one species can all bloom and pollinate at the same time for greatest proliferation).
There are new anti-infectives being developed that operate directly on this principle. Rather than killing the bacteria directly, they inhibit the chemical messengers the bacteria send to each other that urge them to multipy and infect the host.
As we know that there are billions of live bacteria in our systems all the time, but we're not constantly ill, this is one of the explanations that helps make some sense of it. It would seem impossible that our body's defenses could be so perfect and so aggressive that they could keep us alive just through constant, system-wide battle for any length of time. Apaprently, our immune systems are usually able to bully many of the bacteria into inactive submission, so they're not always at active war with every microbe they encounter.
If this is the case, Justin's system bullied that terrible infection into submission for two long years, and Jan's for an incredible nine. It must've been a very difficult decision for the doctors at the time to determine how much of the damaged sternum they had to take, and how much would be safe to leave.
I am hoping for you that this time that the antibiotics get it all, and there's nothing left lurking anymore.
Very best wishes,
There are new anti-infectives being developed that operate directly on this principle. Rather than killing the bacteria directly, they inhibit the chemical messengers the bacteria send to each other that urge them to multipy and infect the host.
As we know that there are billions of live bacteria in our systems all the time, but we're not constantly ill, this is one of the explanations that helps make some sense of it. It would seem impossible that our body's defenses could be so perfect and so aggressive that they could keep us alive just through constant, system-wide battle for any length of time. Apaprently, our immune systems are usually able to bully many of the bacteria into inactive submission, so they're not always at active war with every microbe they encounter.
If this is the case, Justin's system bullied that terrible infection into submission for two long years, and Jan's for an incredible nine. It must've been a very difficult decision for the doctors at the time to determine how much of the damaged sternum they had to take, and how much would be safe to leave.
I am hoping for you that this time that the antibiotics get it all, and there's nothing left lurking anymore.
Very best wishes,
Thanks for that, info, IF you have anything I can read about it, please let me know , you can even email things to me. THIS kind of goes with my theory that I think Justin always seeming so tired and run down (full time student and part time job, would make most poeple tired) lately might have given that bacteria the chance to multiple.
Hopefully since he doesn't have a fever ect and the fluid didn't look that bad or stink ect, (which is why the first person kind of blew us off, which I am NOT excusing and have told everyone up the ladder) we caught it early and started antibiotics, that will help in the long run.
I was reading about that bone/sternum glue http://www.kryptoniteusa.com./index.html that they are trying to use on sternums and are already using on skull fractures ect and do you think that would be worth me just asking if that would be something that could help put Justin's sterum back together? or maybe it would keep the antibiotics from doing their job?
I was a little upset he wasn't admitted right away and taken to the OR, but in the past few days I'm glad they wanted to have him on antibiotics before they opened him, because this also gives me time to put all my ducks in a row and learn more, so I can at least think of good questions to ask. not to mention get things like a new Uglydoll, slippers and thing that make life in the hospital nicer for Justin (and me).
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
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
