Sunday, July 25, 2010

Day +31

I want to apologize in advanced for a another picture less quickie. Hopefully, I can make this short but sweet!
After I posted yesterday things took yet another change. Daylon had several more seizures with the longest (and thankfully the last one) lasting over an hour. They think that the extra blood has made is body's tolerance very low. It all started during dialysis and dialysis has been diluting his sedatives really quickly. So much so, that he's awake by the end. The sudden drop has become too much for him now. He had another CT and it showed although the bleeding had increased, it was very minimal. The Neurologist told me that we are going to continue down the same path but he doesn't think Daylon is strong enough to undergo surgery (that was hard to hear) and all the additional risk, just don't make it a possible option. He is topping out doses on the only 4 sedatives he can have (having a failing liver and kidneys seriously minimizes the meds they can give you we are learning). After the last seizure ended (around midnight last night), Daylon started jerking. It was really weird. None of the doctors have a clue what is going on but it's kind of like his stomach and chest are bucking. An EB kid bucking for hours is a recipe for disaster. Nothing thing they gave him would calm him down. His G-tube has started to bleed from all the movement and the blood is all over his skin and falling into his stomach. Or at least we hope it's falling into his stomach because his stomach is now bleeding. I feel pretty confident that it's just the movement. His temp. was up to 105F at one point last night and then it just dropped to 97F. Weird. Again, they can't pinpoint why. The BMT attending thinks it could be the blood sitting on his brain...I like that theory. He can't afford to get a blood infection now. So far all the blood cultures are coming back negative for infection so that's a relief! Yay! His Bilirubin (liver) and Creatinine (kidneys) levels are both up, but it's kind of expected since they took him off the difributide and lowered dialysis.
We are in this so deep right now that I can hardly see the light. If I'm being completely honest with you, I am more scared now than I've ever been for his life. This is completely overwhelming. This is WAY MORE difficult than I could have imagined! I've cried now in front of 2 doctors in the last 12 hours. My chest is heavy, I feel sick and I've been mid-prayer for 48 hours now... and it's not even a good prayer, it's more like a beg.
Thankfully, I have three bits of news that have pulled me through the day!
One: After I came home last night to grab a quick shower and a meltdown, Brian and I decided to ask my mom if she'll come back up to help us. I called this morning and she's coming in tomorrow night at 8pm! Woo-hoo! Help is on the way! We're just being spread way too thin and something's gotta give before we break. I'm sooo happy to have some stress relief! It is kind of embarrassing though that my aunts just left on Weds. and we already are calling!Oh, well! Don't judge us! :)
Two: We made the decision that Brian and the kids are not going to come home Aug. 7th. Keira will go to school at the RMH and Brian's job will still be held at Interact Power. I love that we don't have to be separated for such a very long time! Plus, I'll be able to see Keira off to her first day of Kindergarten (my dream!)!
Three: The BMT doctor made it clear that he can turn around from here and if he didn't think it were possible, "we would be having a whole other talk". I really like Dr. Verneris. He knows his stuff , stays on top of Daylon's condition and it's so nice to have a doctor on the team that cares about him and sees him as "Daylon" and not "BMT EB patient 11, 12 month old with Junctional EB".

22 comments:

Mom to Many said...

I do not believe that anyone with half of an ounce of understanding could possibly judge you with the stress and trauma that you are going through right now. You are amazing! You have soldiered through this keeping your head and heart intact.
You need the love in return and others need to serve. (D&C 81:5)

When we had our preemie (small potatoes, not comparing pains here because I would lose) I struggled so hard. I am a very upbeat positive person and I was so down at times through that process. Some did not understand me at that time. I had one person encourage me to take meds. (I know for some this is the answer, but it was not fitting to my situation.) Like Bella's Dad said it is NORMAL to feel sadness in the midst of all of this. It's just normal. Your heart is heavy for a good reason. I wish that I could do something to help you today. I can write and I can pray, so I'll do both.


-Cheryl

Jan's Blog said...

My goodness...don't sweat begging in your prayers, or even in place of your prayers. I'll be begging right along with you!!!

Denise said...

Asking for and needing help are more than ok. You need help and you are in one of the most stressful situations anyone could ever face. Having a doctor that you like and can trust is great...I completely get this (my daughter has had more than her share of being in the hospital and there is one doc I just love...but once again nothing like you are going through). Please know your little guy has so many people praying for him. Healing positive thoughts and prayers Daylon!

Denise WI

jeanine said...

I'm so glad that your mom is coming out and that Brian and your other kids can stay. That will be so nice. Moms make everything easier.

Pati @ A Crafty Escape said...

Dear Brian and Jennifer:
I am so glad you have each other, I can't imagine how difficult this must be. Please know that you have a lot of people praying for your family, and especially for your sweet Daylon. I wish there was more we could do. Hugs.

Kristy said...

We lost a little boy Isaac in 2005 who had EB. He lived only five days and we now have a little girl Hope, who has a form of Dystrophic EB. She is doing well and I don't even pretend to know what you are going through, but my heart is with you and I am praying like CRAZY for your family. I check in daily to know how to pray. Thank you for your updates. We are storming the gates for your sweet family.

Bella's Blessings said...

Great news on many fronts; and yet in the face of such terror, it is hard to feel the relief that comes from the many positives within the whole story. It's funny; no matter who are where you are in life, you have uppers and downers, and sometimes it takes real work to notice one in the face of the other. I am glad you can be present to the blessings in the face of the sadness and fear. That takes strength; it is not a given. Further, knowing when to ask for help is humility and wisdom expressed in perfect concert. Pull out all the stops and take whatever measures necessary to keep you right by Daylon's side! Bring in as many reinforcements as you need! Proud to be by your side.

Sara said...

I am begging for you to. Praying and begging....
Glad you had some positives, that your family can be together longer.
That's so important. I am happy that you have back-up, you DESERVE and should have whatever makes getting through the day easier.
Sweet Daylon, I have you and Bella CONSTANTLY on my mind.
Prayers from "home"...

Nancy said...

PRAYERS, love, hugs to all of you! So sorry you guys are going through this but you're so strong! Heavenly Father loves you guys so much and will give the help needed when it's needed. Glad you have friends out there to help you and that your mom's is coming. Loved "Bella's Blessings" post -- so true! We continue to pray every day for Daylon and your family. We pray for Bella too.

Marybeth said...

Wow I am so glad I got a chance to meet a real super mom. Your have incrediable strength and courage and grace under fire... Your amazing and so is your family.
We are praying for you, and thinking about you guys. Stay strong, God will keep you in his heart. I am also so glad you have the Ringgold's so close to you as well. Hnag in there.. I know there are no words to encourage you or thoughts to inspire you except for the one you really want which is to see you Daylon get completley better and leave with new skin... You deserve that and we are praying for just that. So glad to meet you and know such a really awesome mommy!!! We are thinking about you. Believe me no one is judging you honey.. people are in awe of you - trust me on that one, and keep you family close. Ask a friend or family member to arrange to have some help there all the time for you. This is a time that you and your husband need to be there together or at least need time to be together to communicate about the ongoing. Prayers, Hugs and Love
Marybeth & Sam

Erin said...

Hello. I have never met you or Daylon...I work with your hubby's mother, Dee but think about you often. I was recently visiting family in Ireland and we climbed a mountain called Croagh (pronounced Crow) Patrick...its a very spiritual, religious place, etc. etc. it took me 2.5 hrs to climb to the top..and once there I said 1 prayer and that was for Daylon and your family...
Stay positive...and we'll all pray for you here!!
xoxo
Erin Souza

The McLaughlins said...

This latest post hit me so hard. I am so sorry that Daylon is going thru this and that you have to just sit back helplessly. Know that our Heavenly Father loves us and does not give us more than we can handle. You are such a great person and strong mother. I pray for all if you every night. I'm do glad to hear that Daylons Dr has hope that he can still recover from here. I will hold on to that.

With lots of love and prayers,

Amber McLaughlin, CA

sharon kaye said...

Jennifer, you are so amazing. Don't lose hope. When you feel like the burdens are too much to carry, remember there are many, many people who are praying. Heavenly Father hasn't forgotten you. This is a little bump in the road. Take care of yourself. Make sure you get enough rest. We love you all. HUGS to you all!!!

Carla and Matilde said...

Dear, even if right now things look so dark be sure that there is a light shinning for Daylon. God will reward you faith.

You are a beautiful family with so much strength than most of us. Don't ever think we (the readers) are ever entitled to judge you! We can only have a small sample of all you are going through.

Keeping you all in my constant prayers,
Carla and Matilde, from Portugal

Skye said...

I wanted to let you know that my family and I think and pray about you and baby Daylon every day. You have many prayers from Ohio.

Linda said...

I am so sorry that things are a little rough for you guys right now. So glad that your Mom is coming to help out. Grandmas are awesome.
Nobody is judging you, how could they. You are doing an incredible job and I really don't know how you are holding up.
Extra prayers are being said for your precious son. Daylon is going to kick some EB butt, you'll see. Take care guys and hang in there. Love Leah's Nana

Stacey at Mommiverse said...

Daylon and your family are in my thoughts every single day and I pray for your sweet little boy every night. Sending as much love and positive thoughts in his direction as I can muster.

Katherine @ Grass Stains said...

Still praying in Birmingham! Your posts alternately make me cry and cheer. Love to your whole family ...

Sasha said...

Prayes for you all! I've been following your story and think of Daylon often.

Karen said...

our love and prayers are with you daily. Even my little grandchildren remember him in their prayers! I'm so glad your mom is able to come. that will help you a lot in many ways. Keep smiling even though it is hard.

Robert said...

JENN IF YOU NEED ME TO FLY OUT AND HELP YOU AND BRIAN WITH THE KIDDO'S I WILL DR. B SAID I CAN GET THE TIME OFF, DAYLON AND YOU GUYS R IN MY PRAYERS I HATE BE DOWN HERE AND UR GOING THROUGH THIS. IM PRAYING LIKE THERES NO TOMORROW!! JUST REMEMBER YOUR DOING THE RIGHT THING!!! IM HERE FOR YOU AND UR FAMILY, MYSELF, FELICE, DR BLUMBERG AND DR HILL ARE HERE FOR YOU ASWELL.

BRIAN AND BROOKE said...

I am so sorry to hear about everything!!! You cry as much as you need to...let it all out. Hold nothing back! You call as many people as you need to help you out!!! Daylon needs you right now!! So glad to hear that he can still turn around that this point. Hold on Jen... do not give up! We are all begging with you!!!