Day +13 already. She is still in the thick of things right now, but doing very well considering recent events. She has weaned of 2 of her 3 blood pressure meds (dopamine and vasopressin) and is almost off of her Epinephrine. So she is maintaining blood pressures on her own pretty much. Her temperatures still drop very low (93.4 degrees -ACK!) but she usually has the Bair Hugger on to keep her warm. She ended up growing out pseudomonis from her catheter tips. She is on a broad spectrum of antibiotics to cover the infection.
She is still occasionally opening her eyes a little and moving a little. Her liver is not super. Her Bili was 19.2 today apparently 19.7 yesterday, I was mistaken about the lower number reported yesterday.
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| Giant White Blood Cell 1,000,000x actual size. From uncle Timmy who said keep the white cells a comin. |
Grandma Etelca DID come to visit. I guess Chloe is pretty intuitive. Thank goodness for family!
Here are some pictures from the other day below that Timmy shared with me -oh and by the way, I have reset the settings so that anyone can make comments (didn't realize that it wasn't an option before). We really appreciate that you are reading and derive strength from your messages. Thank you.
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| Stefan and Timmy changing her head gear with RT and the nurse |
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| Timmy giving Elle her first haircut to keep the hair under control that is falling out :( |
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| Chloe enjoying rides at Mall of America |
Hi,
ReplyDeleteI've been following your blog for awhile and I just wanted to let you know that I am praying for sweet baby Elle. She is a beautiful little girl! I look forward to your posts everyday. Thanks for keeping us informed. I know you have a lot on your hands and I appreciate the time you take to let us in on this journey.
Thanks also for fixing the comment section so I could post.
May God bless you with a peaceful and healing day,
Mandy from Louisiana
Good news this morning! Have a great day, Becky! :)
ReplyDeleteHello Baby Elle
ReplyDeleteI am from Louisiana and a friend of Baby Tripp. I read your blog everyday and include you and your family in my daily prayers. Please continue to fight and be strong.
God Bless
I read the blog everyday. Thanks for the updates and it's so amazing so still see smiles on your faces. You are all inspirational!
ReplyDeleteThanks for the posting fix! I'm also a daily reader and pray-er for your sweet little girl and the other EB babies/children. I came to your blogs thru Jonah's blog. It's so wonderful to read how many people are praying for Elle, and the other children that are dealing with EB & the BMT, so I can only imagine how it must make you all feel! Thank you for taking the time to update us on Elle's progress. Prayers will continue for her healing and strength!
ReplyDeleteDonna Tadlock
Alabama
Those are some high Bili numbers! As long as her liver is flowing right, I guess we'll consider it all good news day! Glad her blood pressure is becoming more stable. The skin on her face looks great!!! I pray it will continue! Thank goodness, little Elle is asleep for all of this! That is a blessing to be sure!
ReplyDeleteThoughts and love to all of your family and Baby Eelle. Your blog spot was brought up at our meeting this am and the link sent to us all this afternoon. This is a wonderful blog! You are all so brave! So glad to be able to follow your journey.
ReplyDeleteYou are definitely in the thick of it.
ReplyDeleteSo happy to see pictures of you all with smiles.I miss you and send prayers of strength and perserverance your way.
Love to you all.
Shari