Elizabeth Cady

Elizabeth Cady
Our Darling Girl

Tuesday, October 26, 2010

Day +33 October 25

She was off of dialysis for 12 hours last night and all of her ports have been successfully rotated through with Amphotericin flushed and locked in the lines (instead of saline or heparin). This went OK, except she became fluid up as expected and her potassium level SHOT up, which was unexpected. She sat between 5.8 and 6.4 (normal 3.5-5) for about 7 hours and her heart rhythm was showing a change, but once she was back on the Prisma and her K+ went back down, it went back to normal.  Her weight turned out to be 5.9kg so not too bad.

The results of the cultures have come back in a confusing blur. There are 7 total ports and 2 types of cultures done on each port every other day. The results never quite come back as ordered. For example, the nurse will correctly label and send as: left PICC brown port, left PICC white port but lab may note as left Hickman red port with growth, left femoral no growth or something like that, so it is hard to tell what is what in the end. Everything has pretty much come back positive so it has been a moot point, but it seems that one of the white ports may have not grown out this last time.

Meanwhile, Elle has developed a pretty advanced pressure ulcer under her head gear despite frequent repositioning. It was an area that was covered for days at a time and so was difficult to assess. We all feel TERRIBLE about it though. It has taken me 3 days to even be able to post about it. I am sick about it really. Her skin in general has started to break down so easily lately. Her legs, elbows, wrists, neck, shoulders. I don't know what happened, but she tears if you look at her too hard. She had been significantly improving in that regard so I hope this is a fluke.  Oh and our my search for a gel type pillow, have come across the Z flow though PT/OT/NICU.  One is on order and hopefully will get that soon.  The unit assistant today brought the warming type in for temporary use.  While we await the arrival of the Z flow, we have fashioned  the warming pad under her body and just do not activate the heat .  It's worth a try.

Dr. Tolar visited with us today (now yesterday) and actually suggested the Posaconazole and may want to get Elle to the point of receiving more meds by G-Tube too. He is batting around ideas and is so not giving up. I love him for that! Elle had her eyes open clear and bright when he arrived and soon after, closed them. As soon as he left she popped them open again -I think she was pretending to be asleep because she knew he was talking about her! He is going to do her 4 week biopsy at 8AM.  I'm not looking forward to that, but am looking forward to the results.

Later, she was trying to go to sleep but kind of fought it.  She kept looking at me and when I touched her as I have described before, she would close her eyes.  Then she got pretty sleepy, but would open her eyes, see me, and close them again.  She did this a few times before she finally stayed asleep.  I think she wanted to make sure I was still there.  She has never been alone, ever in her ten months for more than a few minutes.  Someone has always been so close by that she could touch, see, or hear them.  She likely does not want to feel alone and I don't blame her one bit, bless her heart.  I love seeing her bright eyes again.  She just melts us completely. It makes me and her dad never want to leave her although we are both in the family area right now.

Elle had a nice visit from Stacy, a medical student who bonded with Elle during her BMT/Hemoc rotation. I'm sure Elle recognized her voice.We got to meet her husband too and  their new baby is sooo cute! We have seen some really wonderful pictures of him.

Chloe is doing just fine too.  Grandpa kept her active today and they had fun.  She didn't ask about us much today even though we were gone all day so that makes me feel good knowing that she was not missing us.  I did pick out a video with her, yes a VHS video and we watched part of it before bed (Cinderella).  She really keeps us going.  She is so sweet, imaginative, silly, intuitive, bratty, funny, intelligent, and ALIVE.  She is very special.  We're not biased at all of course.
Dancing during Wii

Making spooky cupcakes at RMH with grandpa

Fruit of her culinary efforts


  1. Happy to hear Elle is hanging in there and beautiful to hear how she interacts with you. She sounds so gorgeous!

    Alexandra in Australia

  2. I honestly can not even imagine - or even come close to understanding what your family goes thru each day. My heart just aches for all of you!!! Please know that your family is in my thoughts and prayers always!!! Sweet Beautiful Elle is obviously such a fighter - GOD BLESS HER!!!!!!!

  3. Hi Becky: Thanks for the update. So sorry about the pressure ulcer. Sorry too that her skin is not improving.
    How much do you hate EB? What an awful disease. There are so many days I read all the Eb blogs and just ask why?
    Give your precious Elle a hug and kiss for me. Love and Peace. Love Leah's Nana

  4. Becky, what a heavy load this is for your family-- having to go through this with Elle. The best part of it I was thinking yesterday is that you and the medical experts are giving it your all. Let the guilt go when you can for the pressure sore. Things happen. You were studying other areas of need so intently that this got overlooked, but you and the staff are coming up with new preventive measures.
    Hey, I forgot to mention las time that I had been using something natural for yeast infections called Oreganol. It is a strong wild form or oregano oil and it is used by my naturapath for fighting yeast infections. It comes in a little bottle (SMALL) and has a dropper top where you measure out a drop at a time. I'm sure there must be somewhere locally where it can be found. If it would be administered intravenously, she would never taste it. But, it is very potent but safe I'm sure.
    Love and much prayer for you all as I light my candle for Sweet Baby Elle
    Candace C.

  5. Thank you for posting updates about Elle and Chloe and both of you. I hope you are both hanging in there and getting some sleep occasionally too. I know it cant be easy on top of everything else to post these blogs and photos at 2:30 in the morning- so we really appreciate waking up every morning and being able to find out how shes (you all) doing. When is the best time to call? Morning or evening?
    We may be far away in miles but we are there with you all in spirit and even closer in prayers. If we can help in some way or ways please dont hesitate to call.
    P.s.- The Chloe spider cupcake looks yummy-good job Chloe, so cute!!!

  6. B and S: Not sure you have been receiving my comments, can you let me know! Grandma and G.g.

  7. B and S: Good job hanging in there holding your little one's hand and asssuring her. You two have been doing a stellar job since day one! You have both been so brave and so strong, the whole family is so proud of you! Those pesky decubiti come no matter how careful you are, don't feel badly, we turned patients every two hours forever in the ICU and they still got decubiti!
    Chloe's cupcake looked delicious, I love her dancing, I watch my videos of her dancing downstains at RMH over and over and laugh at her antics!
    God bless you two and your beautiful daughters, our prayers are always with you, God never leaves you, ever! Kisses from Grma and G.G.

  8. I am so sorry to hear about the pressure ulcer. I can't imagine how difficult is must be to see her going through this. I am so inpsired by your strength and your daughters will to fight. Sending good thoughts your way!

  9. Elle- You little sweet heart. You remind me of my Clara. She has an interstitial lung disease called NEHI. I know I know big words for you. We end up in the hospital from time to time because of a "cold gone bad". Clara wont sleep in the hospital crib...she sleeps in the pull out bed with me. She developed the habit of wrapping her hand in my shirt and not letting go at night. It is the sweetest thing ever even though it breaks my mommy heart just a little. I hope your mommy reads my notes to you. Just so you know that I am here praying for you. Hang in there sweet baby girl. Sending you love, hugs, kisses and strength. Can you feel it? xoxox

    Hang in there mom...you really are doing a good job. I am so sorry the pressure ulcer happened but you are on top of it now. Tell Chloe I love her cupcake. My son Noah will have to make some. He loves spiders (well only if they are not real). Dr Tolar seems like an awesome dr. I am so glad you have him on Elles side.

    Denise Wi

  10. Becky: Have you considere3d some antifungals such as Lotrimin,Ketoconazoe, Sulconazone, Oxiconazole?
    There are some others, Itraconazole, Terbinafine, Maftifine.
    I know the good docs know what they are doing, we just are clutching at straws and want to help any way we can. Love you all! Grandma and G.G. We miss you four so much!

  11. I passed by the womens world magazine November 1, 2010 the other day but picked it up today. I am so glad and thanking God that I did.

    It had this in it. (not sure if this is for Elles type of yeast but it is worth a shot)

    New studies show that adding either one clove of raw galic or 3 T of coconut oil to your daily diet can destroy up to 100% of fatigue triggering yeast cells. Garlic forces yeast to prematurely age and die while coconut oil splits open their protective outer membrane, killing them outright, experts say.

    I have thought of contacting them but I guess I should leave that up to you if you would like the name of the experts they refer to. Here is the email....dearWW@bauerpublishing.com

    Sending kisses for Elle.

    Denise WI

  12. Well, the Auvil family just loves Chloe's spider! Especially my youngest, Henry (6), who plans to BE a spider for Halloween. All three of my kids follow Jonah, Daylon, Tripp, Bella, and now Elle. We are still praying. That little girl is getting some serious praying. And some strength from being another Elle, too. We Elles are tough cookies. She will keep fighting and beat this thing. Can't wait to see what Chloe wears for Halloween!


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