After a good night's rest and some serious praying, we got to the hospital much more together with an optimistic view on Daylon's condition. When we arrived Daylon's "P waves" (you know how the zig zags on the heart monitor are good, straight line means you're dead? Well the "P wave is right before the tallest line) were small if they were there at all. It was showing that his internal pace maker wasn't working right. They told us that they believed it was due to his brain telling his heart to perform wrong, and not that his heart had something wrong with it. The BMT doctors talked to us about adding to his DNR that he's not to be shocked, if his heart were to malfunction. We agreed. The also asked if they could be permitted to do a brain autopsy. That was a weird conversation. The morning was starting out a bit grim, but I was proud of myself for not crying through the conversation like yesterday. Of course, listening to the doctors spout off medical data and statistics is hard to hear. It can break you if you're not careful. It's kind of like the top shell of my feelings and emotions are fear and anxiety but honestly, deep down, I feel good about things. It probably sounds crazy, and I'm sure some psychiatrist would call it a "coping mechanism", but I don't care. I'm not ready to give up on my son, and miracles happen. Daylon wasn't supposed to live to be a year, but he did.
The neurologist came in and said that both he and the PICU doc. don't think his heart will give out. I was thrilled to hear that. It's not for sure, but they said they would be "surprised" if it did. The neurologist said he's lost right side motor function, possible vision and speech problems, and it's likely that he's become mentally retarded. Again, I just thought, "We'll see". The left side of his body jerks and flails all day long, but at his bandage change last night....
Thanks for your prayers! Please keep them coming!
35 comments:
I found sweet baby Daylon through Jonah's blog and follow most of the EB kids. I am praying for Daylon and your family. Thank you for taking the time to update us. Hugs and Prayers.
Mary, mommy to 2yr old triplets.
I don't know how to explain this, but I too feel like the doctors are wrong and that Daylon will pull through this and be a normal baby. I know, some may call it hope or denial, but there is this feeling that tells me God has a miracle in store for all who are following your story that will cement our faith, forever. Keep your faith and don't let it waiver, not one bit. I will do the same for your son.
I was so glad to see the video & him moving his fingers & I'm still praying for a miracle. Sweet Baby Daylon keep fighting my love, show them doctors that they don't know everything that you are in Gods hands & he knows all. Mom & Dad keep your Faith, stay strong Daylon & the other kids need you & love you soo.. Thanks so vey much for updating us . Love, hugs and many prayers being said for Daylon as well as ya'll.
God is BIGGER than the Drs. Believing for a God sized miracle for sweet Daylon. Knowing God has a bigger plan.
My husband had a horrible bike accident several years ago resulting in a fractured skull and a brain hemhorage which they had to drain. He was in the ICU for 10 days and thought to be in a position to take more than a year to recover, if he recovered. A week later he was moved to rehab, then went through 8 weeks of day rehab (went home at night). By 3 months later, he was pretty well recovered, especially from a mental perspective. He was 52 when this happened. If he can recover that well at that age, way past what doctors had thought he could, then your child surely can also. Children are amazing at healing and healing quickly. I wish you all the very best! Don't ever lose hope!
Precious baby! It's nice to see movement.
Hang in there Mom and Dad.
Still praying.
Hi - I haven't posted before, but I read Jonah's blog frequently and Patrice posted a prayer request for sweet Daylon. Just wanted to let you know I'll be praying for him and your entire family. May God give all of you strength and encouragement for each minute of this.
Laura
Hi - I came here from Jonah's blog and am praying for your sweet baby and your family. May God send you energy and courage during this crucial time. Thank you so much for sharing your journey with us.
Chris
I have been following Daylon for a few months, I pray that God will perform a miracle with Daylon. He is such a beautiful and amazing little boy. You are in our thoughts and prayers! Much love to sweet Daylon!
Yay movement!! How wonderful...I bet that just lightened up your world !!! Daylon you show all those doctors:) Hoping and PRAYING for the best for your sweet son!!
Go daylon! If anyone will defeat the odds its the dynamic duo of Daylon and Bella! Love those little fingers!
There is still hope and I'm so glad you are clinging to it. I'm following your lead, so I have lots of faith that all will work out well, and I'm confident that little Daylon's mother may know more about her child than the doctors. I'm staying strong for you and with you. Sending tons of prayers.
It's amazing how seeing such little movement can bring such hope to hearts. I am so encouraged just by that. Always praying for you all ...
The video made me smile and cry. Such a wonderful thing to see. Praying for Daylon every time he pops into my head (which is lots). Denise WI
Praying for Daylon and your whole family. Stay strong and focus on all the small positive signs that Daylon is showing you. Sending prayers, and hope for positive signs to be observed by you and the medical staff taking care of sweet Daylon. Judy T.(Leah's Grandma)
I have followed Jonah's blog for quite a while now and as soon as she mentioned baby Daylon I started reading this blog. I have never posted before but I read everyday. I cannot imagine what you and your family must be going through but I am thinking of you and your family and will definately be praying for this precious little guy!
So happy to see that movement. He is so resilient, I have hope for a full recovery. I'm glad you are seeing that light too! What a strong fighter he is (and you guys too). Praying, praying, praying and hoping that you will see that smile and hear that dinosaur growl much sooner than ANYONE thinks possible. Why? Because my GOD can do all things! :)
Go Daylon! Keep on moving your right side buddy!
I started crying when I saw that video. I am praying that your sweet Daylon will prove those doctors wrong. We will not give up, keep the positive spirit and tell your little man that he has tons of people around the world praying for his recovery.
Caleb's X-Men cells will heal that brain just like they're healing his skin! It's too bad that docs have to predict the worst in their patients; they can't get sued for false anxiety... as opposed to false hope? If they were smart; they'd tell parents the success stories so they could focus on that. That would empower the parents to be strong for their kids. LOVE that video! Remember, brain docs know the least about their organ in all of medicine. They BARELY understand it, so to pontificate about what will and will not happen, points to the arrogance of some docs. Stay strong, and remember to IGNORE ANY prognosis YOU don't like!
I wanted you to know that my husband and I fasted for baby Daylon today. I have faith that he will pull thru this and make a full recovery. Lots of prayers on our end as well. Stay strong!!
Lots of love,
Amber McLaughlin, CA
I check Daylon's blog daily, and so many times I have started to comment only to feel like I can't find adequate words to express how much his story has touched me. I realized today that I can't find the words because it is times like this when we realize the limitations of our language. All I can say is that my prayers too are going out for Daylon.
I have such admiration for you guys and the way you have approached a situation that is beyond any level of difficult that most of us can fathom. Daylon and his siblings are so very lucky to be blessed with the two of you as their parents. I am constatnly amazed when I see your other four around the Ronald McDonald House at just how happy, well loved and nurtured they are. You are doing a remarkable job of being the best of parents for all of your kids in the midst of this deep, deep struggle. I am truly amazed. And I hope and pray that this time next year when we all look back we can all be amazed at the new healthy Daylon! Dear Lord, please hear our prayers.
Marsha
(mom of Elizabeth who is back around the corner in 5D)
Oh dear. My heart is breaking for you, and please know that you are in our prayers. Fight, Daylon, fight.
You and your little family are constantly in my prayers. I'll tell you what someone told me recently..."your challenge isn't without purpose. Heavenly Father knows you and loves you and you are going through a refining process that although you may not understand now, you will understand and see clearly another time." Hang in there...there are a lot of prayers and much love coming your way!
I found out about baby Daylon from the Sheridan family. She says you all are in great need of prayers. Well, here I am. I just read the first couple of entries and that is all my heart can handle at the moment. But, as I was reading about the things going on with his brain, I felt that things are going to be better than expected in that area. My son has severe hemophilia. Right after his first birthday he had an accident that cause some major brain bleeding. We almost lost him before he got to surgery. They had no idea after his surgery how he would be. He will be 3 in 3 weeks and he is as normal as can be. He did have to relearn how to hold his head up, sit up, crawl and walk but he did it at a very speedy rate. One person told you that the only one who knows the outcome of this is God. That is so true. He can accomplish amazing things. I can't imagine how hard it is right now trying to keep your faith but please don't let it go.
Sending big hugs and prayers
Just wanted to let you know I'm praying for all of you guys
Tori
Shreveport, LA
Keep hoping, keep praying and keep believing in the reality of miracles! Daylon already is one! Your family is being showered in prayers. HOPE!
Many prayers from Mn
Sending prayers your way. I have been following his journey for a little over a month and have been praying for him and Bella daily!
We were so sorry to hear about this new complication for Daylon, and we join everyone in sending prayers and love to Daylon, you and your family. We are holding that faith with you, and like you, we refuse to give up on this little boy.
I felt compelled to send you a message.. My son was shaken at just 3 months old. I received the same grim news.. blindness, retardation, cerebral palsy... I refused to give up on my baby boy. He received a blessing that night, and I instantly felt a relief rush through me. Over the next few days, what I saw as healing, improvement, & increasing awareness, the nursing staff just explained it as "that's what brain damaged kids do".. I knew better! Keep the Faith! He is in God's hands, and like you, he will decide what is best for his child. Praying for you back in California..
I found you through Bella's site and wanted to let you know that I will be praying for Daylon and your family. I am a firm believer that our God performs miracles, so except nothing short of a miracle. Praying strenght,Peace,Hope,& Healing over you all.
Praying in Mississippi.
I've been following along since Jonah's mom posted your link, I follow Bella and Trip as well. And pray for you all. The video of Daylon moving his hand is heart warming. Thanks for sharing your story.
Hi! Daylon has been on my mind all day. I have been sending prayers that he grows strong and healthy. Thank you for sharing your journey. Your family inspires me to be a better person and a more grateful parent.
I wish you peace and joy. Go Daylon! Fight!! You are the most precious little guy.
Blessings, Kim
Praying for you and keeping you in our hearts and prayers.
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