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Positive Diagnosis-An Update on Tates & Tidbits on T-Bone



**Please be advised this post is graphic in some area**
 
Part 1 of this story can be found HERE
Part 2 of this story can be found HERE
Part 3 of this story can be found HERE
Part 4 of this story can be found HERE

Part 5 of this story can be found HERE
 
So it has been almost a month since the last update on this LONG story about Tates being sick and I want to first thank my lovely readers for your continued thoughts and prayers and inquiries about how Tates is doing.  It really means the world to my family to have your support.  I have been trying to get caught up on blog reviews/giveaways and have not had nearly as much time to write personal posts like I have wanted to and I apologize for keeping those of you that have been following this story hanging.
 
Within 36 hours of being home I got a call from the surgeon’s office informing me that one of the cultures they had taken during the colonoscopy was positive for Clostridium Difficile Colitis (c-diff). Finally we had a positive 100% definite diagnosis!  Now to find out what the heck c-diff is and how do we treat it.  After speaking with the nurse on the phone further and doing some research I found out c-diff is a (super bug) bacteria that is resistant to most antibiotics.  There are currently only 2 antibiotics being used to treat c-diff (metronidazole [flagyl] and vancomycin).  C-diff can’t be killed with soap or hand sanitizer (alcohol based or not), it is only killed through bleach and prevented through antibacterial soap hand washing when you come in contact with an infected person’s poop.  Yep I said poop!  So this brings up the question of how the heck did Tates get it?  The other main way to contract c-diff is if you are on strong antibiotics as your natural probiotics are killed and your immune system becomes susceptible.  Well Tates hasn’t been on any antibiotics for over 11 months so he didn’t get it that way, and he hasn’t been around anyone that has it (that we know of) and has definitely NOT been around anyone’s poop so we are clueless how he got it, I don’t think we will ever know.


So how do we treat this?  We start a 10 day round of flagyl (antibiotics) and I also have him taking some probiotics (the mom in me does this, the Dr. didn’t order it) and try to keep Tates hydrated as one of the symptoms of this illness is the horrible bloody phlegmy diarrhea I mentioned several times before.  Tates appetite has seriously declined and he isn’t eating much at all however this is expected with the stomach cramps so Dr.’s aren’t worried however as the mama to this little guy that typically eats nonstop I am constantly worrying about it.  Flagyl is a pill that the pharmacist crushes up and mixes with water (I think?) to make into a liquid for Tates to take and it tastes horrible, he does not want to take it at all let alone 3 times a day for 10 days.  It completely sucks having to hold your little one down, pinch their nose and squirt medicine down their throat.


Next step of treatment, kill this bacteria everywhere in my home.  The only way to do that is clean sterilize every square inch of our apartment (this is when I am grateful we have a small apartment verses a house).  Through more research I find out ‘L’ brand does not kill this bacteria however ‘C’ brand does so I head to my members club to buy out their stock of pre-moistened sanitizing wipes and paper towels.  As I mentioned before we have to use anti-bacterial soap for all hand washing (we normally don’t use it) and are told not to use our regular towels when washing our hands but instead to use paper towels as a n extra precaution for reduced risk of spreading the bacteria.  I also have to pick up bleach because everything Tates tushy has come in contact with must be bleach washed in hot water twice and dried on high heat to kill the bacteria.  Bath towels, changing pad covers (I will share our awesome changing table with you all sometime soon!) and cloth diapers and all cloth diapering accessories (more on that later) all have to be sterilized.


So there goes the hope to get him back in cloth (at least for awhile) like I wanted to do right after getting home from the hospital.  Now we have to use disposable wipes too, yuck.  And I have to buy disposable gloves for each diaper change too.  This sucks and I am not even the sick one, my poor little guy is miserable on top of this all.


Every surface has to be wiped down with wipes and showers are sprayed with bleach solution, laundry done (double time) with bleach and hot water  and there is no information (that I can find yet) on how long this bacteria even lives outside the body.  I have talked to the CDC (center for disease control) and they refer me to my local health department where I am not given an answer either.  So basically I am sterilizing non stop.


It took me a week (literally) to get our stash clean.  After everything was washed I stuffed, folded and assembled our precious fluff and tucked them into a plastic tote and closed the lid.  Oh how I can’t wait to get that tote open and on my Tates tush!


After the flagyl has run its course we wait until Tates has his next poop and I have to take it to the lab and get it tested.  I dropped off his poop on Friday at 4:45pm and by 9am on Saturday morning we are talking with the hospital physicians on call and they are advising us that he isn’t going to be treated anymore because he isn’t having explosive diarrhea and he would just have c-diff.  Wait what?  I don’t think so, and what about getting back into cloth diapers?  The Dr. advised we call the GI surgeon’s office Monday to get clarification on the diapers.


Monday morning I am on the phone with Laura (our surgeon’s nurse that has become familiar with our situation as she was in his colonoscopy and is the Dr’s right hand gal) and she corrects the misunderstanding, Tates will still be treated only with a different medication this time but for 10 full days.  She advises me that the vancomycin (antibiotics) needs to be followed by a 2 week double dosing of a specific brand of probiotics (the most expensive) then he will need to be seen by the surgeon for a followup.  She advises me not to use the cloth diapers until we get this cleared up.


We have to wait almost 36 hours to get this prescription filled because nobody in the state had the needed ingredients on hand and it isn’t normally a liquid formulation.  It is a pill however Tates can’t swallow pills so the pharmacist has to call around the state to find someone who can teach her how to make it.  She offers to transfer the prescription to a pharmacy down the street that makes it all the time but doesn’t charge insurance rather you pay up front and get reimbursed by your insurance.  I say OK, we need this medication.  She calls back and informs me that the cost is $1,500.  We don’t have it so we wait for it to get filled from our regular pharmacy, the good news is they can flavor it so I don’t have to hold Tates down, plug his nose and squirt it in and pray he doesn’t spit it out like I had to do with the flagyl.


Within days of starting the new antibiotic Tates seems better, Praise GOD!  Once he completes the antibiotics and starts the probiotics he seems to slide back into the diarrhea and appetite loss and fussy behavior.  


I call Laura and ask if we should have another lab test done to see if he is negative as the followup appointment is near and I want to get back into cloth diapers.  She says yes and orders the test via faxing the order to the lab.


It takes me 3 attempts to get this lab test.  The first attempt I show up poop in hand and the lab is closed for lunch, the second attempt the very next day poop in hand and the lab has misplaced the faxed Dr’s orders.  3rd attempt is finally successful and I wait to hear back from the office.  It is killing me so I call Laura and leave her a message, within the hour the Dr. calls back.  Right when I answered the phone and heard his voice instead of Laura’s my heart sank.  I know Tates has to be positive if the Dr. is calling.  I am right, he is still positive.  In less than a week Tates is being seen for his followup so Dr. says put him back on the probiotics double dose until he sees him in person.


My heart is broken, I feel like a failure of a mom.  What am I doing wrong?  Why won’t this bacteria die?  I am so depressed and defeated feeling and all I can do to not cry is get mad, until the kids go to bed and then I cry….why is this happening to us?  Why won’t it die?  Why can’t my baby be healthy and back to normal?


Monday morning office visit and after several questions, examining Tates and talking about the precautions we have been taking at home the Dr. wants to give one last shot at vancomycin and double dosing probiotics together and tapering the vancomycin.  If that doesn’t work the rest of the family will get tested to see if we are positive and just have no symptoms (this is very rare).


On the way home we drop off the prescription to the pharmacy and are told (just like the first time we had it filled) that it will take at least 24 hours to make because the ingredients aren’t stocked and are special ordered.  


The next day I get a call from the pharmacist explaining she was reading the medication insert and realizes that the liquid form is only good for 96 hours (4 days) and after that there are no studies showing how potent the medication is and can be un-effective (and the maker confirms this).  WHAT?!  Why wasn’t this caught the first time we are prescribed this medication?  I am LIVID, I call Laura and explain the situation telling her the pharmacist has advised me I will have to either mix the medication myself or get new medication every 4 days and want to make sure that sounds right to her.  She wants to research it and call me back.


Laura researches and talks to the hospital pharmacy and is advised that the pills are not supposed to be crushed and mixed with rather there is a vancomycin powder that should be used and they can fill it within a few hours.  This formulation (the correct one) will be fine for the entire tapered dosage.  I tell her thank God I called her and we are going to get the correct formulation.  The first round of it is now believed to have been basically ineffective, kinda like taking your medicine for a few days then stopping.  We make the half hour trip to the pharmacy and are starting the antibiotics tomorrow.


We have been advised to re-sterilize the entire apartment and are actually going even further than before, bleach spraying all carpet, stuffed animals and clothing and bedding (again).  All toys and hard surfaces are going to be wiped down and bathrooms and sinks will be wiped down daily.  Anyone want to come help?


Tates is doing better on and off with his eating, maybe a bit of picky toddler in there :).  He is trying some new foods and we are loving that.  Still no cloth diapers.



We have had a nice cloth diaper stash, I can honestly say I hit stash euphoria.  We had over 70 diapers and some fabulous wipes and wet bags.  The sterilization process killed lots of them, they fell apart (literally).  The ones that did survive I have been now advised to destroy them as I am told nobody can be positive they are truly bacteria free.  I am at a hard decision about this….when Tates is bacteria free do I dare risk exposing him with the chance the diapers are infected?  Or do I pray sterilizing them again will work?

 
I have a few review diapers that are unworn and some wins that I have received set aside for when we get back to cloth (someday?).  I also a planning a huge cloth diaper event when this wonderful day comes and there will be sponsored giveaways!
 
In other family news, Tates still hasn’t talked however he has had 1 speech therapy appointment and is starting to sign more, I am so thrilled at this!  Poor T-Bone broke his foot while messing around (dang boys!) just days before school started and had to have his schedule rearranged and start a new school in a special shoe which stinks and he is very unhappy about.
 
Thanks for your continued prayers and I promise to be quicker with updating you all in the future.


Comments

  1. C-diff is horrific to deal with and difficult to get rid of. (I used to work in nursing home where new patients would have it from time to time) Sounds like you are doing everything you can to get rid of it!

  2. Janelle,I am so glad you understand! It is horrible! I have to start over today bleach washing everything~clothing, bedding, changing table covers and wiping down hard surfaces. I think his toys are going to be hard because you don't want your kids playing with bleach smelling stuff but I have to kill this thing, ugh!

  3. Oh my goodness! that is terrible, I cant even imagine! I would have the same feelings as you! sorry you had to go through that!! glad to hear he is feeling better though :)

  4. My heart breaks for little Tates…and his mommy too. I too worked in a nursing home and C-diff is NOT an easy bacteria to kill. You are all in my positive thoughts for a full recovery soon. {{HUGS}} to you all!

  5. Ever feel like just leaving everything you own, startin all over in a new house?! :O) I feel like that when I see my laundry pile everyday! On a serious note! So glad you know what is going on and that something is happening to fix it now! Praying for you all! Keep my up to date!

  6. Katie~ I think I have smelled enough bleach that my brain cells are dead! LOL!

  7. I have had C dif and I know how painful it is. Poor baby. I hope he feels better soon.

  8. MG, what did you do to finally get rid of it? Am I missing something?! I am going extreme and bleaching all our clothes, bedding, towels, carpet, EVERYTHING!

  9. Omg dear I'm so sorry :(

  10. Oh my goodness! You have my sympathies, that is awful. I would have to say I would throw away the old stash of cloth diapers instead of running the risk of re-exposure. That stinks though, that is a lot of money down the drain. I am sorry you have had to deal with this. I cannot imagine having to deal with all this scary craziness. You will be in my prayers.

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  1. [...] however if you are a long time reader of mine you may remember me sharing Tates experience with a deadly bacterial infection which lead him to be hospitalized several times, have surgery and eventually a long road of [...]

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