This is Epidermolysis Awareness Week- spread the word.
Elle had her biopsy today. She had 5 not so little holes punched into her left thigh. The tool used to core the tissue is even called a punch. Don't worry, she got plenty of local and systemic pain control and did not seem to have ill effects or signs of additional pain. The information from the biopsy (which we do not have yet, but will in a few days) will help Elle and the doctors in planning her care and in research efforts to help other children.
Elle slept much of the day today and I am going to see her tonight right after this post. She has maintained her blood pressures without adjustments to her meds or additional fluids beyond platelets. Her WBC and ANC counts continue to maintain, and we will not have more culture results until tomorrow. She has gained quite a bit of weight now; it just took a day. She is 7.1kg up from 5.9 yesterday.
Thanks for all of the continued antifungal/yeast ideas. I didn't know about garlic- I wonder how we can incorportate that. She isn't tolerating tube feeds yet, but I'll propose it. I have been putting coconut oil on her here and there, but I didn't know that it caused the membrane to split. That is interesting. Yes Ma, I am getting your comments now and they are very sweet, thank you...Oh and she is on Ketaconazole topically.
The Vikings were visiting the hospital again today at a halloween party in the cafeteria and Chloe got a photo with Freddie Brown who visited Elle before. She ate cupcakes and apple cider and became nuts for a little while but she had fun.
 |
| Chloe asked for a rainbow spider... |
 |
| ...and so she got one |
 |
| Grandpa even wanted manly one |
 |
| Dad asked, "Does this hospital have a pest problem?" |
 |
| Chloe jumped at the chance to be goofy in the photo booth |
 |
| A magic trick |
 |
| Feeding her dad -looks like he's not as enthusiastic about this |
 |
| Chloe shy all of the sudden with Viking cutie, Freddie |
I'm continuing to pray for your sweet baby Elle, and for you guys. Praying the docs and medical team will have wisdom in caring for Elle. Praying that God would miraculously heal her kidneys and liver.
ReplyDeleteStay strong and know that God will give you strength. Philippians 4:13 I CAN do ALL things THROUGH CHRIST who STRENGTHENS me.
Hi Becky: Still praying for your precious daughter. So glad that you guys had a chance to hang out at the party and have a little bit of fun.
ReplyDeleteKeep the Faith. Give Elle a kiss for me. Love and Peace Leah's Nana
Chloe,
ReplyDeleteYour halloween spiders are very cute, its so nice to see you and grandpa and mommy and daddy smiling! We love you.
Auntie Timea and family
Hi Becky, Stefan, and Chloe<
ReplyDeleteI'm impressed a Viking is visiting you, Chloe is probaly the prettiest girl he was ever photographed with, huh? I was surprised to see Gil Reynaga with Halloween paintings on his face!
Asking God for good luck on the biopsies! We were at Bible Class last night and Elle is on many people's prayer list!
Good news, my buddy, Tommie is marrying Mikeon November 20th in a winery in the Shenandoah Valley, so Gil and I will be there! He asked her to marry him on bended knee at Young's winery with other couples there, very romantic! They've been together 14 years!
Good, I see you turn Baby Elle every 2 hours, that will help heal the bedsore.
Lisa has a symposium here so will spend the night wih us tonight, and I am planning a special meal. We love company!
Remember James 5:16 " The prayers of a righteous man are powerful and effective." Love and kisses forever from Grandma and GG.
So happy to see little Elle's BP numbers are good and that she has gained some weight.
ReplyDeleteBack here we all continue to pray, pray and pray more for Baby Elle and the rest of you.
We all must keep up the faith and postive thoughts though we are concerned about Elle. I've been lighting a candle for you every day and of course pray to God for the best outcome.
By the way, what did you think about the wild Oregano Oil idea?
ReplyDeleteCandace C.