Blake and Cody spent all day yesterday at CT Children's Medical Center, Cody was finally diagnosed with the Swine Flu. Cody kept saying, "What if I have a line infection?" concerned about his 104 temp, and I said, "you don't, because you are coughing, runny nose, you have the flu."
Blake also has the flu. And of course I've been herxing for 3 weeks or so since starting IV Claforan and feeling unable to move.
Today I woke up at 7 am feeling better! I think the IV Claforan might be my saving grace...but boy that herx is nothing I'll forget anytime soon. Not sure it's completely over, but definitely on its way out. Perfect bed day for a sick family. Cool and rainy. Everyone is sleeping and I'm going back to sleep. Fast forward a couple hours......
The peaceful picture was broken by the phone ringing off the hook, eventually awakening us. It was CT Children's Hospital calling to tell us Cody has a very bad line infection. The bacteria grew in less than 12 hours, not the usual 48. We needed to rush him right back there for line to be pulled, be evaluated for sepsis, be put on additional IV abx, and possible admission.
I was groggy because I had taken a sleep med to catch up on rest so out the door Blake went with Cody. I will go there if he needs admission. I am scared.
Poor Cody just sobbed and said "I am NOT doing this anymore. I am NOT getting another PICC line. I am all done with this." For those who don't know, this is his second line infection, but MUCH worse than his first. His first did not need to be treated with anything.
He overheard Blake and I discussing how much worse this one was, how he may have had it for days without us knowing because he had the flu too, how concerned the doctor was (we were called by the same doc who pulled his first line)....I tried to reassure him and told him maybe this time Dr Jones will order a chest port, he said NO WAY I AM DONE.
I said Cody, not getting treatment is NOT an option for you. But we will talk about that later, right now you need to go.
Scary when the doctor calls and basically tells you to get your kid there as fast as you can. Please God don't let this damned swine flu or this bad line infection (gram negative if that means anything) be too bad.
Posted by feelfit (Member # 12770) on :
Oh my gosh Tracy. I am thinking of all of you, especially Cody. Please keep us posted.
In my thoughts, feelfit
Posted by Marnie (Member # 773) on :
My heart goes out to you.
Ask your doctor about trying IV Augmentin AND
an antihistamine.
May God watch over and help Cody to fight these infections!
Posted by kellyjk4 (Member # 19731) on :
Tracy, I'll be thinking of you and your family. Try to keep us updated, ok?
Poor Cody - he's such a strong kid and he's been through so much.
I'm sorry he has to be put through this!
Posted by c3mom (Member # 16412) on :
Praying for you and your family.
Posted by randibear (Member # 11290) on :
tracy, hon, would your kids like a care package? maybe some goodies, movies, games,etc.?
sometimes getting something in the mail addressed to them might make them feel a little better.
you've helped me out countless times and it's the least i can do for you and your family.
Posted by njlymemom (Member # 15088) on :
you and your family will be on my mind and in our prayers
i am so sorry this is happening
Posted by Pinelady (Member # 18524) on :
Prayers something good comes from this.
Posted by Tracy9 (Member # 7521) on :
Randi, that is so sweet, I am sure they would love that.
Does anyone know anything about "Gram Negative?" That is all I know so far and when I looked it up online it clearly is worse than "Gram Positive" and is what leads to sepsis and all the bad and scary things.
Poor Cody; how scared he must be...yet he has to push forward somehow. I'm thinking Dr. J might go for a port next.
I'm scared.
Posted by Tracy9 (Member # 7521) on :
Randi, Our address is:
***
Again, that is very sweet of you. Money has been non existent, what a thoughtful idea.
***Webmaster Note: Full name and address have been removed.***
[ 10-28-2009, 05:38 PM: Message edited by: Jenifer ]
Posted by seekhelp (Member # 15067) on :
Tracy9,
I'm sorry to hear about this bad news. I hope all works out in the end. How scary!
Just a FYI, I seriously would take your mailing address off ASAP. That's a very, very unsafe thing to do online.
Best wishes.
Posted by kellyjk4 (Member # 19731) on :
Tracy - I agree with seek - take your address off.
If anyone needs it, they can PM you.
You don't want just anyone getting your address, especially with kids in the house.
Posted by randibear (Member # 11290) on :
tracy, please remove asap.
if there's something they want pm me privately.
(same goes for anyone wanting care packages, please do so privately. i want to make sure YOU are safe first.)
Posted by brentb (Member # 6899) on :
I treated my line infection applying DMSO mixed with colloidal silver and antibiotics. Waited for at least 6 hours then applied DMSO mixed with MMS (clo2). Wait at least another 6 hours before redoing. Careful, as the MMS will go systemic, and just a little goes a long way. You can soak a bandage and apply it if needed. The MMS/DMSO also worked very well on a recent spider bite. best of luck
Posted by WildCondor (Member # 434) on :
Wow!
Tracy get to that hospital and don't wait. Have them pull that line! Get him treated for sepsis!
I would not do any more PICC lines. It's too risky and too much for a kid to handle. You tried. There are oral combinations that will work, and hopefully he can use Bicillin, because it can be just as effective as IV therapy.
Most importantly, make sure they culture that IV line tip and find out exactly which organism it is and then do a sensitivity to determine which antibiotic will work against the germ found.
Focus on the current infections and dont worry about Lyme until after he has recovered!!
He has the swine flu plus a picc line infection, he needs meds and should probably be admitted indeed.
Keep us posted but get your rest too!!!! Stay strong!
Posted by randibear (Member # 11290) on :
jennifer, or anyone, if tracy is caught up in all this, can you please edit her post asap?
she's probably really busy and all and may not be checking for while.
Posted by Haley (Member # 22008) on :
Tracy,
I'm so sorry to hear about your child. Please keep us posted on what happens.
I just returned from my doctor's office when he implied that maybe I should have had a PICC line instead of the port I just had put in (oops). I thought what in the heck am I doing.
Your email has made me think that maybe the port will be better as far as infection is concerned.
I'll be praying for you.
Posted by bettyg (Member # 6147) on :
i REPORTED tracy's post asking jenifer to remove....she comes on daily checking the REPORT POSTS; unknown time but daily.
tracy and family,
putting you all in my thoughts and prayers that this will turn around for the BETTER SOON
i went to NIH's medical library typing in the phrase you used above and got this link with lots of info ... too much!
I would be RUNNING from those PICC lines, not walking Tracy as I've said over and over again in your threads. Just too much risk given your family's situation. It appears you are all very sick so you're putting yourself and your family in jeopardy if the other is so ill they can't drive, function, etc. PLEASE think about this.
I'm shocked the treating LLMD doesn't see this angle.
Posted by tick battler (Member # 21113) on :
Tracey - so sorry to hear this. I will be thinking of you all and praying he gets better ASAP.
Keep us posted when you have time.
tickbattler
Posted by Jane2904 (Member # 15917) on :
Tracey- Sorry to hear this. Will keep you all in my prayers. Hope it all turns out well.
Posted by Dekrator48 (Member # 18239) on :
Praying for Cody!!!!!!!!!!!
Praying for all of you!
I am so sorry this is happening.
Praying for the very best outcome.
Posted by Hoosiers51 (Member # 15759) on :
Tracy,
Oh no! So sorry to hear.
It sounds like a port will be the way to go. He might actually like the fact that it can be "de-accessed" for things like swimming. (unless I'm mistaken, but I am pretty sure).
I'm sure the hospital will know the best drug to put him on for his infection. I would trust them.
Prayers to Cody and the whole fam!
Posted by randibear (Member # 11290) on :
i asked in another post, but do ya'll know how old cody is?
Posted by Tracy9 (Member # 7521) on :
Cody is 14. He desperately needs IV antibiotics, failed 6 months of oral therapy, has congential lyme, was in behavioral schools, severe "ADHD", has 3 white matter lesions on his brain, he is almost as bad as it gets. DR J expects he needs a year or two of IV...is what I am assuming from what he has said. He is a VERY severe case.
I am guessing we'll be getting a chest port.
Cody has been discharged from the ER and they are on their way home. His blood tests show no indication that the bacteria spread beyond the tip of the PICC line into his blood stream (same as last time.) The bacteria he had this time was gram negative which is the more dangerous kind that does lead to sepsis. HIs PICC line was removed.
He was given IV Vancomycin (strongest antibiotic there is) in the ER and was told one dose would be sufficient. A second blood culture was taken, because it is still possible some bacteria could actually be in his blood stream that hasn't shown up yet. They did not feel he needed to be admitted.
We are to watch for high fever, chills, etc that would indicate sepsis setting in, if in fact some bacteria has made its way into his bloodstream but isn't showing up yet.
He appears to be feeling better. Today is Day 5 of the Swine Flu and it typically lasts 3-5 days so he is pretty much on target. I feel bad because when he had the 104 fever he kept asking me, "Mom, what if I have a line infection?" and I kept saying, "No you don't, it's the flu." Sometimes I guess we need to listen to listen to our kids more.
Not sure what's next, but I'm betting Dr. Jones may go for a chest port. Cody has horrible reactions to the bandages, ends up with rashes and blisters underneath them, and we wonder if somehow these are causing some bacteria to form that are then causing these line infections.
Seekhelp,I hear your messages loud and clear, but for us, IV has worked where all else has failed. I have been sick for five years and done EVERYTHING including a year of Bicillin. On IV, I notice a difference within a month. This time, the herx has been HORRIFIC.
Despite being on enough orals to kill an elephant, I don't think I've had a herx in a year. So something's working here.
Thanks so much for your concern, everyone. It is so, so appreciated.
Posted by Topaz (Member # 20216) on :
Sending good thoughts your way.
Posted by bettyg (Member # 6147) on :
quote:Originally posted by Tracy9:
Cody has horrible reactions to the bandages, ends up with rashes and blisters underneath them, and we wonder if somehow these are causing some bacteria to form that are then causing these line infections.
tracy,
look up 3M; call their main HQ and tell them about cody's rashes/blisters underneath bandages.
many years ago they sent some special ointment to be applied FIRST before bandages, and it worked well since i was allergic to the bandages after surgeries, etc.
praying you might get some good help on this problem. hugs
thx for update on cody that he's now home and feeling better.
Posted by Dekrator48 (Member # 18239) on :
Tracy,
I am so happy to hear that Cody was not septic and is home.
I am continuing to pray for Cody's recovery from the flu and that he recovers from Lyme and can live a normal life.
No one should have to suffer like that....especially a child.
Keep us posted.
Big hugs.
Posted by randibear (Member # 11290) on :
wonder if he's allergic to latex. i am and get these horrible red blister areas.
Posted by Tracy9 (Member # 7521) on :
Cody is doing better today. Dr. Jones is ordering another PICC line. I am going to have to request the hospital to sedate him, because man, he ain't going down without a fight this time.
I, on the other, got my butt reamed out by the home IV nurse today. She said I am well on my way to a PICC line infection, there were red dots all over the line (okay I have no idea what that means) but she said it is a precursor to a line infection. My bandage was bloody and pussy. My BP is only 88/60 and heart rate is 108.
She said I am severely dehydrated, and can tell I'm not eating or drinking.
Ryan's PICC line looks great, but is having diarrhea 5 times a day, not that he mentioned it to me. He has not been taking Probiotics, argh, I can't seem to get anyone in this house to comply with meds unless I hand them to them and Im too sick to do so right now.
Give me two weeks and I'll be bouncing back, I just know it.
I haven't broken the news to Cody that he is getting another PICC line. He just can't handle it. I don't know when to tell him. He feels he has escaped death by a hair twice and he is terrified. The ER doctor is from the other camp and hasn't helped, both times, same doc, went on and on about how he doesn't believe in long term abx and how Cody is a perfect example of why, in great detail.
Oh boy. I'm going to have to put my kids in for Green Santa this year too which sucks. We are so broke. Ryan is 20 and probably doesn't even qualify but how do you get one kid something and not the other?
Now that was random, sorry.
Posted by randibear (Member # 11290) on :
tracy, hon, i mailed the boys a box today (hope they're cowboy fans, if not, just tell them a crazy woman from texas is!!) it should be there about wednesday.
i feel so sorry for them. being ill is not fun and doctors don't help!!
please take care of yourself too. i don't know anything about these lines so others can address that.
if YOU and hubs need something, let me know.
Posted by Hoosiers51 (Member # 15759) on :
Another PICC? Yikes.
Did you ask Dr. J about a port? What did he say? I wonder if you called him and told him Cody is uncomfortable with the idea of a PICC, if he would reconsider.
Be sure Cody knows to wash his hands with antibacterial soap, and to dry them on clean paper towels (not bath towels or dish towels) before doing anything with the PICC.
But I would really like to hear that Dr. J is okay with a port! It seems like a better approach at this point, especially if Cody is to be on IV for many more months.
Posted by Dekrator48 (Member # 18239) on :
tracy,
Thanks for the update.
I'm so glad to hear that Cody is doing better today.
So sorry that he has to get another PICC.
All I can really do is pray for all of you.
Hope that you are ok too. It must be a nightmare having all of you so sick and with PICC lines.
Praying that things get better for all of you soon.
Posted by seekhelp (Member # 15067) on :
Tracy, can I ask something? You said Cody took oral Abx for 6 months with no improvement and moved to IV. I thought people don't even notice anything until 1 yr - 18 months sometimes per the best LLMDs and in Under our Skin. Is there a chance improvement could have been realized with longer waiting?
I understand time is critical though. As TinCup told me in another thread, so is being alive. Hopefully Dr. J will consider a port. Either way, I wish him the best.
Posted by MADDOG (Member # 18) on :
I guess God was looking out for me a lot when i had my picline.
I went to work every day with it wraped in an ace bandage,working under cars in the dirt.
At one point i even climbed on an indoor rock gym with the pic line.
I never got an infection in it.
MADDOG
Posted by opus2828 (Member # 15407) on :
Tracy, I've been praying for your family.
I would hate to see Cody get another PICC line.
My friend's kid had similar issues with the PICC becoming infected twice and now she has a prt and is doing great.
She's had the port in for over a year now - with no problems whatsoever.
![[Frown]](frown.gif)
![[Smile]](smile.gif)
Either way, I wish him the best.