Hey all,
I'm sorry for my absence in blogging this week. Daylon is still in the hospital. He is still vomiting (although today there was marked improvement) and this week they discovered a staph infection in his blood through one of the PIC line ports. He had a head CT that revealed a significant increase in fluid in and around his brain. His most recent hematoma is apparently reeking havoc. He is scheduled to have brain surgery tomorrow morning sometime. They've been working on making sure everyone involved has learned about EB. Dr. Tolar will do his 6 month biopsies following the surgery and also get a biopsy of his tongue (some new questionable sores have popped up and no one knows what they are). To be completely honest, I'm a nervous wreck about the whole thing. They will be drilling a nickel size whole into his skull and have to cut into the vessels that broke and caused the brain bleeds. The amount of pressure (from the fluid) he has may be the source to his vomiting and high blood pressure (he's on 2 meds and one's a drip. They've been 140-160 over 80-100 with the meds. They've upped their game again tonight and it's helping). It's late and I'm rambling, but I just wanted to ask you all ( beg you all really), to pray for Daylon and the surgeons. This surgery also comes with the risk of infection and brain infection is not something you want to mess with. There are so many aspects to think of: the surgeons missing and hitting his brain, his skin not cooperating, infection, Daylon pulling the hose they are going to attach, re-damaging the brain, etc.
We're so very thankful for all of your love and support. I PROMISE I will post something at some point tomorrow. We love you!
Love,
Jenn
Monday, December 13, 2010
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34 comments:
Jen,
Thank you for the post! We've been checking frequently and have worried that things were not going well when we hadn't heard from you. We will put Daylon's name on the Temple prayer roll in the morning and increase our prayers, more specifically, tonight. You and your family have also been in our prayers. May Heavenly Father bless you with His peace and strength throughout this ordeal. God be with you,
Kathie and Mom in Utah
Will keep you in our hearts and on our minds. Sending only the best your way.
From way over in New Zealand, Daylon- you, your family, the medical team are all in my prayers. Wishing you the very best.
You are a brave, strong boy with an awesome team around you.
Helen and family (Christchurch, New Zealand)
I will hade Daylon in my thoughts and prayers today as well as the rest of your family.
Best wishes from Stockholm, Sweden
Emma
Prayers
Dear Jenn: Thanks so much for the update. I can only imagine what you guys are going through right now.
Please know that we will all be saying extra prayers for precious Daylon. Please take care and Keep the Faith. God Is Good. Love and Peace Leah's Nana
Wishing you the very best, all the way from South Africa.
I will be praying for him and for you.
Sending you all the prayers we can muster from here in NJ. Praying for the doctors and staff to be guided by God when helping your sweet boy!
Tina in NJ
A friend of Bella
Praying alot for your little one to do well, you to keep the strength, and the doctors to guide them. Love you Daylon!
Oh I'm so sorry. I was hoping that no news was good news. I will be praying for Daylon and all his doctors and nurses today.
Thank you for letting us know what's going on.
Shelly S. in MN
I pray for you, your family and everybody involved in Daylons treatments.
Julia in Tokyo
Our prayers go out for Daylon, for your family and for all involved in Daylon's care!
I'd been worried. I had a feeling. Prayers are coming your way. I will spread the word. Just hang on Daylon!
Praying for you and your family today! It is amazing how Daylon and EB has spread across the WORLD! Thinking of you ALL THE TIME! Daylon has done so well so far, he can make it through this!
Love you Jenn!
Looking forward to your updates today.
Memory
Sending TONS of prays from Louisiana.
Warmest regards,
Jen
Yes!! We will be praying for Daylon and your family today. We love you very much.
Susan Hendrickson
I'm so sorry! Of course we will pray for Daylon and all of you.
Kerri
Praying for Daylon, the doctors, and your family!
Kim (Utah)
I am thinking of your sweet Daylon all through out the day today!!! We LOVE him so much and will be praying for everything to go smoothly. Hang in there Jen, dont forget to pray :)
Thank you for always taking th time to update us all in your OH SO BUSY schedule :)
Praying!!
Sending love and prayers today and every day. May our Lord keep safe watch over Daylon and over the surgeons' steady hands. May he give you and the family peace and comfort as you wait.
Tina
Love you and praying for all of you! Hope you feel peace and love!
Prayers and thoughts are with you all. I pray that you find comfort and peace throughout this day!
Please know you have people from all over the world who don't know you, don't know each other, united in prayer. Daylon will be carried in and out of the surgery room by our prayers. The medical team's hands and decisions will be guided by our prayers. I have Faith God will grant us yet another miracle for Daylon and strenghten our Faith that much more.
We love you. Pasadena, CA
All I can think of is John 14:27. Thank goodness for the peace the gospel can bring. You guys are all so very strong!! We are sending extra prayers your way today, praying for Daylon, and for you and Brian, and for all those involved in the surgery today.
We have been saying special prayers for Baby Daylon and to steady the surgeons hands while they are working on Our Special Baby Daylon and that everything comes out well. You are all in our thoughts and Prayers. We are not physically there by your side, but we are with you and Baby Daylon through prayer, faith and love. May Heavenly Father give you the strength, comfort, love and peace at this time. Heavenly Father Loves You and is there for you and We Love You. Hang in There Baby Daylon, You Precious Baby and Our Strong Little Dinosaur. We will be waiting anxiously for an update.
Hang in there Jen & Brian, We Love You.
All Our Love;
Myrna & Dwight CA
Jen I'm so sorry that Daylon is still in the hospital and has these new issues. Daylon is such a strong young man. He is so precious and loved by so many. I pray for Daylon and your family daily but today I'm praying every time he comes to mind and that's A LOT!!
Hang in there Jen and Brian. Stay strong. We love you!!
Just keep swimming, just keep swimming!!
Lots of Love,
Amber McLaughlin, CA
Daylon and your entire family are in my thoughts today, tomorrow and always. Sending all the positive energy I can in Daylon's direction tonight.
Sincerely -
Stacey
I will be praying for your family! I will direct all positive thoughts your way. Hope you feel the love from the East Coast.
Extra prayers for Daylon and all of you today. Hope things went well and you'll soon be back on schedule.
Sending big hugs and bigger prayers for all of you from North Carolina -
Helen/'Lucy'
Keeping Daylon and your family in my thoughts and prayers.
Heather, Canada
Praying for some relief for you and your family!
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