Elizabeth Cady

Elizabeth Cady
Our Darling Girl

Friday, October 22, 2010

Day +29 October 21

"Jammin with Jan" music on Tuesday

Grandpa, Tuba, Chloe, and Sully
We are still waiting and watching.  It is the hardest thing in the world.  We are straining our brains to think of interventions, but mainly it's waiting for the meds to work.  I asked if the Abelcet dose could be increased a fair amount due to unknown affects of Prisma.  It is hard to tell how much of a medicine is pulled of with dialysis in spite of studies and theory.  Sedation and Vecuronium are not supposed to be affected by dialysis in theory, but we can see easily that she needs much higher doses when on the circuit.  Also, we are not sure how her increased metabolic state affects medications.  So the docs agreed and increased her Abelcet and Voriconazole.  The down side is that these meds and increased dosages can harm her kidneys and even liver but in our care team conference, we got "the talk" (about how serious her condition is)so if it is between kidneys and life, we choose life. 

I am going to be a little medical for a bit in hopes that someone has insight on eradication of this fungus. Hopefully this yeast has not gone to far to manage.  It is called Candida Parapsilosis in blood, skin, and airway.  She is being given Abelcet at 10mg/kg/hr (amphoB), Voriconazole 60mg q12hrs, She also had a 2 time order for AmphoB nebulizer.  We thought of decreasing or holding TPN to decrease sugars in her system that may feed the yeast (docs thought this a bad idea in that she may crash without the carbs in her hyper metabolic state).  I also thought of decreasing or holding antibiotics since she was not having signs of current bacterial infections, but that too was not a helpful idea. We stopped Medihoney for the same sugar thought process (although infectious disease thought it wouldn't hurt) and instead are using Ketoconazole on her skin and trying to keep areas open to air as much as possible. Her Hickman, bilat fem PICCs, and new art line all come back positive on recent cultures and cannot be replaced at this point d/t few or no alternative replacement sites, need for access, and possible futility of it at this time.They are managing blood pressures and temps, and checking cultures every other day.  Any other thoughts, ideas, insights??? Ask, research, think for Elle please.  We are hoping in a couple of days she will start to turn around.  She is still fighting for life and we want to help her!

Stefan and I are taking turns at her side.  We did go to a Picnic with the Edlings and Ringgolds though (Daylon and Bella's families) at Hidden Falls in St. Paul for a couple of hours while dad watched the baby.  Jennifer provided most of the meal which was delicious.  We all had a good time, a nice break from the heaviness of the day.  The kids are so fun to watch and all in the same age group.  Later we played Bingo for a little bit then back to the hospital. 

Chloe wanted to see her sister and drew her a picture. Elle still responds to our voices and touch and looks at us.  Getting hard to keep her comfortable right now though since the Dilaudid and Versed drop her blood pressures, but we are still getting her there. 

Stefan does such a good job with head gear; here with RT
A rare look at her uncovered, unbandaged head

We took a couple of hours with the Edlings and the Ringgolds at Hidden Falls Thursday
See the little pumpkins and witch hats -Becca, one of the RTs drew them -I call her an" RTeest" -ha ha

Chloe drew this picture and is showing it to her sister.  In her words: Its Baby Elle with a breathing tube, a breathing machine, and medicines to make her better so she won't be sick any more. can you see all of the crazy lines? That is what all of her tubes look like to Chloe, but she does take it in stride.  She is pretty tough physically and emotionally.  Both of our girls are.


  1. Praying Elle starts to get better soon!

  2. Praying for Elle and all! Blessings!!

  3. All my thoughts and prayers are with all of you!!! Elle is so Beautiful!!!!!

  4. Came here by way of Bella's blog and wanted to let you know were have beautiful Elle constantly in our thoughts and prayers.

  5. Praying for beautiful Elle and for God's healing hand in this most unsettling time.

    Adrienne (friend of the Ringgold's)
    Huntington Beach, CA

  6. Good job Chloe! Your picture for Elle is beautiful! You are very imaginative and creative for drawing such things for just 3 years old! We are so proud of you! We will just keep praying for health and strength for our beautiful granddaughter Elle and for Steve, Becky and our little sunshine Chloe.
    We love you,
    Grandma and Grandpa Pop

  7. I wish I had ideas or insight that would help, but in the meantime I will keep praying for Elle, her mommy, her daddy and Chloe. Also praying for God to give insight and help those doctors and nurses to just know exactly whats right and what she needs. Praying, praying and praying some more...
    Love Auntie

  8. P.S. Your pictures are so beautiful-look at all of the cute little faces-Im so glad the kids have each other to play together. :)

  9. Dear Elle, Stay strong girl! There is another Elle far off in Virginia who is praying for you to beat this thing. I wish I had some medical insight for you, but I don't. Prayer is it, but you've definitely got that. Blessings to you and your family.

  10. Sending positive thoughts from Dallas. Fight Elle Fight!

  11. Maybe you have already considered this, but I thought I’d offer…I have horrible problems with yeast and the only thing I can do to keep it away is constant ingestion of probiotics…I use ones from GNC, but they are all over. Even with all the medical options there all, that’s the only thing that ever works for me and I take them constantly.

  12. I have no medical background so I dont know if this is off the wall or not but what about probiotics? Like I said...no idea if it would help or not...but after I woke up this morning I started to think of Elle and this popped in my head. I had to mention it. Also peeking around the web for herbal ideas...would her drs consider? "Herbal remedies for candida yeast have traditionally been prepared from herbs such as garlic, tea tree oil and gentian violet." Just some ideas...and trying to think outside the box.

    Elle- Hang in there little one. Keep on fighting. Sending you hugs and kisses and tons of love. xoxox

    Denise WI

  13. I'm pulling for you Little Miss Elle, all the way from South Africa. Sending good thoughts and hugs for you. and hoping for some clarity for your care team as well. hoping you can beat that nasty Candida and start getting better
    love and hugs from

  14. Heavenly Father,
    We ask for your blessing on Elle today. She is fighting to live. We know that. We ask for healing, for strength, and for peace. She is your child, and we know that your loving hand is on her forehead, soothing her discomfort, and reassuring her that she is loved. We ask for your hand to also touch Stefan and Becky. Hold them close as they hover and worry. Fill them with the knowledge that they are loved and that you are at work in that little hospital room. Use Elle's doctors and nurses to do your work. Give them your gentle touch and send healing through each fingertip. We also ask for your blessings on Chloe. You have given her the gift of sisterhood, and we ask that you surround her in your love and grace as she continues to learn what it is to love a sister.

    All these things we ask in the name of your son, the one you loved as a parent and sacrificed for our sake, Jesus Christ. Amen.

  15. My only thought is Amphotericin B.. but if there is a drug that will kill your kidneys it's that drug. Prayers for elle. I don't know if you can use ampho B to clear out the lines, or maybe the lipid forumulation of amphotericin to have less impact on her kidneys. But if you want to kill fungus, Amphotericin.

  16. My only thought is Amphotericin B.. but if there is a drug that will kill your kidneys it's that drug. Prayers for elle. I don't know if you can use ampho B to clear out the lines, or maybe the lipid forumulation of amphotericin to have less impact on her kidneys. But if you want to kill fungus, Amphotericin.

  17. Hoping for Elle to get through this.
    I did find some evidence for using capsofungin in invasive fungal infection...but that drug is not without risks, but this paper found that combining caspofungin with Amphotericin was as safe as using Amphotericin alone:
    Randomized comparison of safety and pharmacokinetics of caspofungin, liposomal amphotericin B, and the combination of both in allogeneic hematopoietic stem cell recipients.
    Groll AH, Silling G, Young C, Schwerdtfeger R, Ostermann H, Heinz WJ, Gerss J, Kolve H, Lanvers-Kaminsky C, Vieira Pinheiro JP, Gammelin S, Cornely OA, Wuerthwein G.
    Antimicrob Agents Chemother. 2010 Oct;54(10):4143-9. Epub 2010 Jul 26.
    I suppose it never hurts just to keep everyone's mind wheels turning and thinking of alternatives, so I thought I'd let you know what I found.
    Thinking of your family,

  18. Praying for beautiful baby Elle, and hoping she feels better soon! My husband and I have a 3 year old son with JEB, and are so thankful that you are willing to share your journey with us. We are both in the medical field, and are trying to think of something to help you. The best thing is to change her lines since yeast sticks to everything, but we understand that can't be done at that this point. The meds are ideal. Also, make sure to request an ophthalmology consult, fungemia can result in interior eye infections (if they haven't already done so). Best wishes to you all.

  19. Dear Pop Family,
    I have been following this blog and praying for Elle. Please know I am thinking of you.

    Kim from California
    (a visitor from Jonah, Daylon and Bella's blog)

  20. Our go to anti-fungal drug in my NICU is Amphoterecin B. It does take a long course of it though, 21 days if I remember correctly. Hopefully you can continue to manage Elle's symptoms until the meds can start to work.

    I also think that you should make sure you get an ophthalmology consult. The fungus travels easily (as you know), and fungal balls can form in / behind the eyes. Same thing for the heart - get an echo to make sure there are no fungus formations attaching themselves to her heart, the valves especially.

    Sending lots of good anti-fungal thoughts from Chicago,

  21. I found your blog through Daylon and want you to know we're rooting for Elle. Have you thought about essential oils to help combat the yeast infection? Many of them have antifungal and antimicrobial properties. I use them for my family on occasion but I'm not knowledgable enough to say if and what type of oil might be good to try. So, I did a quick google search to see if there was any info out there. Here's a link to a research article that includes the type of yeast Elle has: http://jmm.sgmjournals.org/cgi/content/full/55/10/1367
    The conclusion said that "Evaluation of MIC and MLC showed that the oil was active against all the tested strains (Table 2 )." I'm sure there are other article/websites that have more info too. Just an idea.

  22. Don't know if any of this is helpful, but here are a couple more sites with info about different oils used to treat yeast infections:

    “Recently, the potential antimicrobial effects of certain plant oils have attracted serious attention within the scientific community, largely as a result of the growing problem of multidrug resistance among bacteria.1 … “

    “The yeast infection treatment products discussed below have been medically proven to work for treating candida yeast infections. All references are provided for you to check on if you choose to do so. Because everything here is medically proven, all these suggestions will work for everyone…”

  23. We are praying for Baby Elle!!
    I pulled up some research...not sure if this will help..but here it goes:

    Amphoterecin B is first choice.

    Azole family drugs such as fluconazole and voriconazole can be also be prescribed. However, Candida parapsilosis demonstrates significant drug resistance against them. Thus, azole drugs should be used only if the laboratory tests indicate that the strain of Candida parapsilosis is susceptible to them.

    I pray that the Lord guide the doctors and nurses and sharpen their minds. Fight baby girl!

    Bella's and Elle's cheerleader,
    Nicole B

    Read more: http://www.livestrong.com/article/241645-what-are-the-treatments-for-candida-parapsilosis/#ixzz13A3qKvCv

  24. thank you for sharing more photos. We think of Elle and Chloe often. my daughter Sarah said that she really hopes Elle and Chloe will be back home together to play and have fun. We know this will be true some day soon.

  25. You are always in my heart and prayers


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