Friday, July 30, 2010

Day +36

Today has been the hardest day we've experienced yet on Daylon's BMT journey. The MRI went on as scheduled, and thankfully, without a hitch. In about an hour's time we were there and back up to his room, ready for dialysis. As they switched Daylon over from the portable monitors to the room monitors, we noticed his heart rate was running a bit lower than it has been. Once blood pressures started up again, the readings showed he had a higher pressure. We been watching for this since this weekend because it's a sign of increased pressure in his brain. The pressure on his brain, cause the brain stem to tell the heart to slow, thus causing increased blood pressure. Long story short, we were pulled into a conference room and told that Daylon's MRI showed not one, but two hemorrhages and brain damage. The damage is located near the motor skills and cognitive thinking section of the brain. They can not tell us how severe the damage will be. It could be movement issue which require physical therapy or mental retardation. It's any one's guess. They did bring to our attention that brain damage down to someone younger than three has been corrected by the brain finding alternate routes to send signals. There would be some permanent damage in that scenario, but it would be minor.
Due to the temperature being all over and his new heart rate and blood pressure issue, the think the brain stem may be involved as well. His brain stem can tell his heart to stop at anytime. After one months time, they believe that risk will end. Dr. Wagner is stumped. Dr. Cooy (PICU attending) is stumped. Neither one of them have ever seen something like this and have no clue what to make of it. Dr. Wagner thinks it may be a Junctional EB thing. I'm not sure if he thinks it's Herlitz or not, he never specified. The problem is, according to Dr. Wagner, Junctional EB is a mystery because no one has been patient enough to give these kids a chance. Dr. Wagner wanted to have Brian and I agree to a partial DNR (Do Not Resuscitate order). If his heart were to fail, chest compressions would rip his skin off his chest. Not to mention, if the brain was that far gone, there's nothing they could do anyway. We agreed, of course. We want what's best for our baby. The neurologist will be in tomorrow to answer more brain related questions.
I'd be lying if I said I wasn't heart broken by the news. We came here to save our baby from death and to try to offer him a normal life. The idea of him dying is devastating, but so is the idea of our little boy living with EB (for the next several years) and now being mentally or physically disabled. The idea that I may never hear his dinosaur growl or watch him blow me a kiss, is heart wrenching. I can barely stand it. How do we take on this next big obstacle? As I wrote the question, the answer popped in my head: "Faith". I've been thinking this all afternoon. Brian and I lingered in the conference room and said a prayer together. It was a comforting prayer. I know we were meant to come here. We both felt that this was where Heavenly Father wanted us to be. Once we made the decision, all of our ducks lined up in a row. Daylon got stronger, his cells were fixing themselves. Life has been known to throw us all through the loop. It's so important right now, that we have faith in the impossible. There is a reason for all things, and sometimes you have to dig to find them, but they're there. I had a talk with my mom today who reminded Brian and I that they were told my sister Emily would be severely mentally retarded and as I write this, she's away at school getting her Master's degree. Tim (Bella's daddy) and I talked today and he encouraged me to remember that no doctor alive, can tell us what will happen with Daylon's brain. The brain is a pretty incredible mystery. My dad told me that "everything will work itself out" and to stay optimistic. I sure am trying. I can't wait until I can hold him again. My arms ache to rock my little baby, so bad that it literally hurts. I know that wonderful things are in store for Daylon. This is so much for such a young person, or any person to go through. I think very special, strong spirits are given such challenging obstacles to overcome and so many blessing to be received by them and everyone around them. It's an honor to be a mother of such a spirit.
Thank you all for caring so much about Daylon. We ask you all to please pray for a full recovery for Daylon. Prayers are all we got. We love you.

47 comments:

Anonymous said...

Lord, wrap your loving and healing hands around Baby Daylon and his parents. Please bring courage and faith to their family and their hearts. I know Lord you have your hand on baby Daylon right now, and i know you will guide him ( and parents) through this difficult time. Thank you for entrusting his care to the very best parents. Please let him feel no pain, please let his parents experience comfort in knowing You are there, each step of the way. Thank you Lord for allowing all of "us" to be apart of this journey.

Anonymous said...

Hi there. My name is Kristi, and I have been following several EB kiddos for the last year. I haven't commented, but I have been reading your blog daily for awhile now and have been in deep prayer for your family. Daylon and you, his parents, have touched my heart so deeply. You are all an inspiration to me. I cannot imagine being on the journey you have, but I do know how blessed you must feel to be Daylon's parents. I will say extra prayers that Daylon pulls through this latest challenge. To give you a bit more hope, I would like you to know that my little niece was born at 23 weeks 3 years ago. The doctors told my sister and brother in law to take her off life support. She had two massive, level 3 brain bleeds and they told them she would never walk, talk, feed herself etc... Today, she is a very vibrant, happy, loving and hilarious little girl with very minor CP. She was just discharged for good by her neurologist last week. Heavenly Father, always has a plan, no matter what it might be. Your little man is touching so many hearts and lives and I feel so privileged that you are sharing him with so many of us strangers. Thank you!

Anonymous said...

My heart is breaking for you. I will continue to keep Daylon in my prayers. Rely on your faith and believe that you are doing everything that you can possibly do for your baby.

Amy
MN

Bella's Blessings said...

You have made EVERY right decision to give Daylon the best and longest life possible since before he was even born. You are right on; this is where faith kicks in. Faith isn't necessarily easy. It's an active process that takes courage (courage = action in the face of fear). Action in the face of fear takes strength. I pray that God continues to give you the strength to keep that faith connection strong in the face of such sadness and scary news. We love you guys so much and are honored to walk by your side in this journey. We are God's stewards of His children, and as such, you continue to make God and Daylon proud with every tear you cry for your little boy. Hang in there.

Lastly, there is a serenity I feel whenever I am on a plane as it takes off. It is a moment where I am really present to how little I control in the world. If that plane breaks down, there is NOTHING I can do; so I turn my life over to God every single time I take off on. God is in the results business. When I remember to turn my life or specific events over to Him, a feeling of peace washes gently over me. I pray that as you turn Daylon's MIRACULOUS RECOVERY over to God (again), may that peace continue to bathe you in warm, comforting light, and I pray that it relieves the aching pain in your heart.

Anonymous said...

Can you feel HIS arms around you? HE is there with you, with Daylon, with the doctors. Faith and prayers go out to HIM to continue blessing this family. YES...Daylon must have a powerful spirit to be deemed capable of handling all of this. That you were chosen to be his mother tells me so much about you! I wish I could come to the hospital and, well, I don't know. Just to hug you I guess. My heart goes out to all of you.

Accept HIS blessings.

Sara said...

Tears in my eyes for Daylon. Like Bella, he's in my heart.
Prayers are on the way.

Lucy and Ethel said...

Tim's right - no human knows what's coming, and the brain (the entire body) can do miraculous things.

Still, I'm so sorry you're faced with something else going on with your sweet Daylon.

Beefing up the prayers for Daylon, Bella, your families, and the medical folks -

Helen

Anonymous said...

Daylon and your entire family is in my prayers. Faith is powerful. God bless you.

Bella's Grandma Carolyn

Anonymous said...

I'm so sorry to hear that Daylon, and you and Brian are facing another serious crisis. I feel privilidged to have met your delightful family, and will continue to pray for you all.
Sending a big hug, love and constant prayers.
Bella's Nanny Sheila

Anonymous said...

Many are the afflictions of the righteous: but the LORD delivereth him out of them all. -Psalm 34:19

"'Have faith in God,' Jesus answered. 'I tell you the truth, if anyone says to this mountain, "Go, throw yourself into the sea," and does not doubt in his heart but believes that what he says will happen, it will be done for him. Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours. And when you stand praying, if you hold anything against anyone, forgive him, so that your Father in heaven may forgive you your sins'" (Mark 11:22-25).

"And I will do whatever you ask in my name, so that the Son may bring glory to the Father. You may ask me for anything in my name, and I will do it" (John 14:13-14).

O Lord my God, I cried to you for help, and you have healed me. -Psalm 30:2

My son, give attention to my words; Incline your ear to my sayings. Do not let them depart from your eyes; Keep them in the midst of your heart; For they are life to those who find them, And health to all their flesh. -Provers 4:20-22.

I will continue to pray.

ANewKindOfPerfect said...

I am so sorry to hear that the MRI results were not as hoped. Like Bella's dad says, the brain is an AMAZING thing! They cannot predict what will happen, regardless of the damage seen.

I pray that Daylon turns around and has an incredible recovery.

Stacey at Mommiverse said...

Daylon and your entire family are in my thoughts and prayers tonight and always.

Anonymous said...

I haven't commented here before, but I have been following your blog for awhile now. My heart dropped reading your update and I immediately asked Heavenly Father to be with y'all. You guys will continue to be in my family's prayers.

Anonymous said...

Jesus please comfort Daylon and his family. Bring healing to Daylon. Thank you for the answers that only You have. sg-KS

Anonymous said...

May your family find the strength and courage to make it through this difficult time. I have been following Daylon's story and it kills me every time I read about what is going on. I can not possibly imagine the hurt, the tears and all that your family is going through right now. You are a beacon of hope for so many other families out there. I keep Daylon and your family in my thoughts and prayers daily. I pray tonight that Daylon continues his journey to become a happy healthy young man and that you can hold him once more without the fear of hurting him. Daylon seems to me (through your words) to be a very tough little dude and a fighter!!

Again, my thoughts and prayers are with you always. And I look forward to reading about his recovery very very soon.

Patrice said...

God,

I ask that you continue to watch over Daylon and send a legion of angels to guard and protect him. I pray that you intervene because we know that we cannot put you in a box, Father, and that YOU are STILL a God of miracles. Please repair Sweet Daylon's brain, Lord, and please restore his sweet mind. Heal his skin. Cure this horrible disease that is EB. Give his Mommy and Daddy hope for brighter days. God, we know that no matter what, Daylon is in your hands and is ulimately healed, restored, and perfect one way or the other. Thank you for your peace, comfort, and constant presence. Wrap Daylon's Mommy and Daddy in your love and please give them limitless grace. We ask all this in the name of Jesus. It's by his stripes we're ALL healed. Amen.

sharon kaye said...

Jennifer, you have always been an amazing person. I feel it a blessing to have known you since you were little. Not many people could go through what you are going through. I know that Daylon has a very strong spirit to be going through all of this. The Lord is mindful of all of you. All things will work together for your good. Our prayers continue everyday.

Sarah said...

I have to agree about the doctors and more so in your case since little is known about Daylon's condition. My heart aches for you all for the news today but I have faith that nothing but good things will come and Daylon will be growling once again.

Anonymous said...

This just leaves my heart so heavy. I wish there was more that I could do. But I will do what I have been doing...lots of prayers.

Denise, WI

Rebecca said...

Just to let you know I am praying for you all. My you feel God's arms wrapped tightly around you as He too weeps beside you.

Bec xxx

Maria B. said...

I'm praying with you. May God bless your little boy.

jardinera linda said...

Sweet Daylon and all the other EB babies and their families are an example for the world.

I don't even know what to say...i'm no God person, so i will just let you know that I, like many others, am following you and embracing you in your journey.

Love from across the ocean
juana

Linda said...

Reading your update breaks my heart. Please try to remember that God has a plan for your precious son. God is in control and we just have to keep the Faith. Daylon is one special little dude and we all love him.
It has been 7 months today that we lost our Leah and I am still heart broken. God how I HATE EB!!!!!
Extra prayers for Daylon, Mommy and Daddy. Feel God's healing hands and his love. Keep the FAITH!!! God Is Good. Love you guys. Love Leah's Nana

Emelie said...

<3<3<3<3 We think of you everyday and pray. Love Emelie and Elly

Kimberly @ Raising Olives said...

Praying for God to comfort you and your family.

Anonymous said...

I've never commented before but I have been following Daylon and Bella for a while now. Daylon and your entire family have been in my thoughts and prayers since I discovered your blog. I will continue to pray for all of you and for the doctors to have the wisdom to help Daylon. Praying that you will hear his dinosaur growl soon!!!!

Love and Prayers from New England

Anonymous said...

Submit his name in the temple prayer list and he will recover.

Courtney Roth said...

When you said your arms literally hurt because you want to hold you baby, I think my heart literally broke. I can not imagine how that must feel. You could not have said all of that any better. What an amazing woman you are and what an amazing family you have. You guys are taking such a risk in honor of my little boy and all the other Junctional babies out there. There will always, always be a special place in my heart for you and your entire family. FAITH is right... What else can you do but have faith? God brought you guys to this- and I believe he will bring you through it. Tim is right- as I keep telling myself, too- no doctor really knows what is going to happen. All they can tell you is what they've learned- and like you said they've never experienced this, so only God knows what's in store for precious Daylon.
Please give him a kiss on that sweet forehead from our family. We love you all so much and I wish more than anything I could be there to give you all a great big hug. You guys are in my every day prayers- as are in you so many peoples prayers across the country:)
Love love and more love-
Courtney Roth

Anonymous said...

Sending prayers from Utah for peace and comfort during this difficult trial. What an example of faith you and Daylon are providing for so many around the world!

Anonymous said...

I have been following your precious Daylon and Bella from Patrice's site. I pray for all of your EB children. How great is it that through FAITH, you can turn to our Heavenly Father and ask him to wrap His arms around Daylon. He does hear prayer, and I am offering another for Daylon's recovery. Peace to you from God above.

The Ninofrancos said...

Prayers for God's strength and wisdom to do what you're "supposed" to do.

Anonymous said...

I'm so sorry. Our prayers are with you. Michele

Anonymous said...

Oh, I hate this for you and especially for Daylon. I am so, so sorry that you had to receive the news that you did today. I am praying for Daylon. My heart is breaking for you.. not knowing and not being able to hold your baby.

Anonymous said...

Hi, I am so sorry to read these hartbreaking news about Daylon.. God bless him.. I came across the med article that cold therapy helps a lot for brain damage and similar conditions.. Cold compresses or cold air flow around the head could reverse or treat the symptoms of brain damage.. My prayers for a lil man (xxx) Natalya Rynne ..Iam also on Facebook..we have ddeb

Marybeth said...

Jennifer & Brian
after reading your post I have to tell you I am almost speechless, and my heart is heavy. I am praying for you and for your precious baby. Your strength is inspiring to me and I am sure to many, many people. Thank you for sharing your journey with the world, because I know how painful that can be, and just plain hard to write, to even think about it... Bless your heart. We are thinking of you and praying for you. Thank God your mom is there... I am so happy that You and your husband can be there together... I was praying for that!!!
Please God give this family a miracle... God Speed!!! Hugs
Marybeth & Sam #7

Belinda said...

It breaks my heart to hear the news ya'll heard about sweet precious baby Daylon but I have witnessed miracles happen & will be praying & hoping that a miracle happens for Daylon. My love, thoughts & prayers are with each of you. Dear God I ask for you to please give this family a miracle to witness of their own to experience & give You thanks for allowing it to happen in advance. Please heal Bella, Tripp, Jonah as well as all the EB Babies in this world.

BRIAN AND BROOKE said...

Miracles can happen! Do not loose hope do NOT give up FAITH! We are ALL here FIGHTING this BATTLE with you!!! Daylon you can do this, your such a strong BRAVE boy!! You have captured ALL our HEARTS and TOUCHED ALL our lives!!! I hope you can feel peace and your heart can be healed with the aching you feel. I hope more than anything you can hold and rock your baby boy again and hear his sweet drawl! We ALL are here praying to HEAVENLY FATHER to HELP HEAL YOUR BABY!! HANG IN THERE!!

The McLaughlins said...

Jennifer and Brian, I am so sorry to hear this latest news. It breaks my heart and I am continuing my prayers for his full recovery. Miracles do happen and Daylon can get thru this. There is so much for your family. Please stay strong. I know someday you will hear his growl again and see his beautiful smile light up the room and you hold him in your arms and just LOVE HIM.

Lots of love and prayers,

Amber McLaughlin, CA

Mandi @ It'scome2this said...

I'm visiting from Jonah's blog. Praying that you feel the love of Jesus wrapping his arms around your family so tight tonight!

Katherine @ Grass Stains said...

I've been following your story for some time now, and I just weep for you tonight. I will pray for multiple miracles.

Anonymous said...

Praying for all of you - so many unknowns, so scary, so awful! Praying for miracles!

boltefamily said...

Praying for peace and healing.

Anonymous said...

Praying for Baby Daylon! Sutherlin, Oregon

Anonymous said...

Praying for Daylon. You are a wonderful family.
We hope you get your wish for this gorgeous baby boy.

Many, many, many prayers here in CT & NY (and I am sure all over the world).

xoxo Daylon!

Jan's Blog said...

God is a God of miracles. I'm praying for one for you, your entire family, and for precious Daylon. I also believe in giving thanks in ALL things. It's driven by faith. So, in faith, I'm giving thanks for what is happening now and praying that we can see and feel and know what the blessing is in this moment.

In the book 'A Hiding Place' about two sisters in a German concentration camp, one sister gives thanks for the flees in their sleeping quarters, though she doesn't know why. Then she discovers the guards won't enter this room because of the flees, freeing her to preach the gospel to all the ladies in that room with her. It was, for her, a miracle!!!

I'm praying for your miracle.

Love to all,
Jan Hall

Brett & Jackie - Rafi's Parents (patient #8) said...

Jen and Brian, Jackie and I are so sorry about Daylon. Our hearts are heavy and our cheeks are wet. You are both courageous in taking this path for your son. Know that you have done everything possible to give him a shot at a life. Hug your other little ones, cherish every moment you have with them. Stay as strong as you possibly can. If you need anything, Tim has my number. I wish there was more I could do to take away the fear and the pain.

Anonymous said...

I am praying for little Daylon. I'm so sorry for his pain and for what you are going through right now. Don't give up! You are an amazing family full of love and faith.

Believe in miracles! Blessings Kim