Wednesday, December 15, 2010

Day +175- 36 hours after


Daylon and one of his favorite nurses, Ben
   To say the last 36 hours have been stressful would be an understatement. About 20 minutes after I last posted, Daylon threw up for the first of many, many times. By midnight, the night of his surgery he was inconsolable and crying in pain, itchy like I haven't seen him in months (EB is not only a painful disease, but a VERY itchy one), with blood pressure the highest I've seen it. He cried all night long. Pain meds didn't touch him, anti nausea meds didn't touch him, his high blood pressure meds didn't touch him. This continued all yesterday as well. Yesterday morning he started running a temp of 101.8F that Tylenol couldn't fix. The doctors changed out his high blood pressure medicine drip with a stronger med and are titrating it. He maxed out the highest dose on the titrate, so they upped that as well. High blood pressure could be caused by a number of different things, but when it's this high (and with his medical history) he is at a risk of a stroke. His latest blood pressure? 170/100. The fever is obviously the sign of an infection somewhere, but where? They've tested and cultured everything they can think of and the results are all the same...negative. His pain tolerance is one of the highest I've seen and he is showing signs of being in A LOT of pain. Why is that? The doctors said the pain should only be moderate.
  When he's not crying, he's moaning and flailing about. The PICU nurse and I took turns standing at his bedside during dialysis to hold him down and prevent him from loosing his run (and all the blood that was in the machine at the moment). It was a five hour run that lasted 7, but in the end they took off one whole kg. so that's good.
  He's breathing has become very rapid (like 60-80 breaths a minute). His nostrils are flaring and he's needing to breath using his belly instead of his chest.
If you add this pot of mess together what does it equal? One sick kid and a heard of stumped medical personnel.
They switched his meds all around every which way and he's currently on a drip of pain meds and a drip of nausea meds with bolus of medicine for his break through symptoms. Besides a slew of blood work, he's had a chest x-ray which came back crystal clear, a head CT which showed that there are no new hematomas, but there is still a bit of blood left in his head and a pocket of air has found its way inside his skull. That can contribute to some of the extra pain at least. Unfortunately, the CT came with a price. The foam pads they put in to keep your head in place hit the Burr holes and he's started to ooze and bleed from the site. :(
 This morning he had an ultrasound of his kidneys preformed to see if the vessels in his kidneys are narrowing or something. I was told by the technician that things looked okay from what she could make out, but that the radiologist can see more. We're waiting on those results.
   It was decided also to dialyze Daylon today to see if vomiting for weeks has lowered his dry weight. If his dry weight (the weight he should be) has been lowered, then they aren't pulling enough fluid off of him which can cause high blood pressure. To everyone's surprise, when Daylon was weighed a bit ago, he is up a full kg. in 15 hours. It's surprising because he didn't take in a kg of fluid.
  We're grasping at straws, but at least there are still straws to grasp at. :)

  Well, that's the update in a nutshell. I need to get back to Daylon. He's starting to wake up. Please keep the prayers coming!


Patrice said...

Still praying here. I'm hoping and asking God that things will begin to look up very very soon. Love you guys!

Jan's Blog said...

Prayers are on their always, but more and harder and stronger. How much can he take? How much can you take? My heart is breaking for you, but if you can go through it I can go through it with you, every inch of the way, and as my tears flow I can still say that I see God's hands at work here. I hope you can feel His embrace. Oh I know you can...

Anonymous said...

Still praying, praying and more praying for Our Special Baby Daylon and hoping things will get better. I know you have to be exhausted with all of this going on. You are in our thoughts and prayers and we love you. I put Daylon's name in the LA Temple yesterday. With all the prayers from this and the world we are all hoping for a miracle. He is so loved and so is all of your family. Hope all the other kids are doing well, you really have been thru some trials and tribulations and you are so strong, loving and so caring. Daylon and all your other children are so blessed to have you for parents. You can see the love you give to all of them. They are very special to us. Hang in there Jen & Brian, Heavenly Father is watching over you and Baby Daylon. He will give you comfort and strength. Keep the Faith. Hang in there Baby Daylon, Fight, Fight Our Little Superman. We Love You.

All Our Love;
Myrna & dwight CA

Shannon said...

All of my thoughts and prayers are with Daylon( and all of you, Ofcourse. ). I do not post often but always read your posts and think of all of you daily. You are such an amazing family. Try to keep your chin up!!
Happy Holidays!!

Anonymous said...

Sending all the prayers we can for Daylon to feel much better real soon. Also sending prayes of comfort and calm for mom & dad.
Tina in NJ
A friend of Bella's

Anonymous said...

Praying for Daylon and your family, you all have been through so much. Daylon is in my thoughts and prayers everyday. Judy T.(Leah's Grandma)

Mom to Many said...

We will pray for Daylon and for all of you. This has been so tedious.
I am hopeful for a better night tonight.

<3 Cheryl

Amy said...

Keeping Daylon in my prayers. I feel so bad for him that he has to go through all of this. He truly is a little superhero for all that he goes through. Hoping for a better night for all of you.

The McLaughlins said...

I am so sorry Daylon is in so much pain right now. Poor little guy. It breaks my heart to read how hard his day has been. I will continue to pray for Daylon everyday and I will make sure I specifically ask that he be comforted and that his fever goes down and he stops vomiting. I really hope he has a better night tonight and a better day tomorrow. Stay Strong!!

Just keep swimming, just keep swimming!!

Lots of Love,
Amber McLaughlin, CA

Jess Edling said...

Oh man. I was hoping the recovery would go smoother. I'm sorry its been so rough. We love you and continue to pray for all of you.


Brent & Jess

Brandon + Chelsea + Ella said...

Prayers coming your way, Jenn. It's obvious why the Lord chose you to be Daylon's mommy. Most of us would curl up in a ball and give up, but you are Superwoman! You are definitely your family's hero. Stay strong.
Love, The Stewarts

Angelique Ringgold said...

So sorry he's having such a rough time. Probably the only nice thing about being on the PICU is having a full time nurse that can trade off with you like that. We'll keep praying. Ali can't wait to see you guys back home. BTW - Tim send you a text about this. They aren't giving Daylon morphine, are they? I know that when Bella was on morphine it made her itch like nothing I'd ever seen. It went on for days before a nurse suggested that maybe it was the morphine. It totally made sense to me as soon as she said it. "Everyone gets itchy on morphine" I think was her exact quote. Anyway, maybe that's not it but thought we'd throw it out there. Ya never know.


I am so sorry to hear that Daylon is having such a hard time right now. Stay strong, he needs you! I will be praying for Daylon,you and your entire family! We love you all!!
""Courage does not always roar - sometimes it is the quiet voice at the end of the day saying I will try again tomorrow.""

Andrea said...

Oh goodness!! That poor sweet boy, and parents too!!! I will continue to pray for your guy!!!

Linda said...

Dear Jenn: I am so sorry that Daylon is having a bad time. Extra prayers for an extra special little boy. Praying that they figure out was is going on. Hang in there, Keep the Faith. Love you guys. Love and Hugs Love Leah's Nana

Amanda Corin said...

I don't know if you remember me but I met you guys at RMH with the Ringgold's the day the baby lions were there... I just wanted to say that Daylon and your family are in my thoughts and prayers today...Hang in there! I hope they can figure out what is going on.

Amanda Schauer

Carla and Matilde said...

So sorry Daylon (and your family) is having (again) such a hard time. Just keep hang in there. It is just another bump in the road.

Keeping you all in my most sincere prayers,
Carla, from Portugal

Anonymous said...

I have no idea what to say....what upsetting news. Poor Daylon and poor you watching him suffer like this is torture. I pray the experts will figure out what is going on and as always pray for strength for Daylon and you all to get over this hurdle. Hopefully by now he is resting.
GOd bless you all and huge hugs for Superman Daylon ((((((hugs))))
Bernie in Fontana, Ca.

Cara said...

Visiting from Bella's Blog... sending healing thoughts your way! Be strong Daylon, it will be ok!

Cara in Tucson

Cathryn said...

praying, praying, praying.

Hugs to you all!

Anonymous said...

We are visiting from Bella's Blog also. Wanted to know our family is keeping your family and sweet Daylon in our prayers and thoughts. We are so amazed by the strength of your family! Stay strong Daylon! There is a world of people sending you love and prayers of comfort and healing! Fight on Superman!
In our thoughts,
The Vanderbooms

The Bobadilla's said...

I've been following your blog and wanted to let you know there are lots of prayers coming your way from here!

Lynne, Bob, Jack and Ben said...

Seeing your child in pain is so tough, and you guys have had way too much of it. We are sending prayers of love, healing and peace from AZ.

Anonymous said...

Good Morning- Daylon, I know that you are Superman with a little Xman in there thanks to your Big Bro. Keep fighting little man, you continue to amaze us. I am praying for you and your entire family. I know God has big plans for you buddy. What a fighter you are- we don't know you personally but I work with Shellie Hunt and are frinds of the Ringgolds. We are sending you hugs and kisses and praying WHOLE heartedly for a restful day.

We ask you today to guide the Dr's to finding the cause of Daylon's pain and high fever. We know You are there and we trust in You. Please comfort the Edling's as only You can do. Please allow Daylon to rest and gain more strength, to overcome the latest obstacle with no further setbacks. What a beautiful family they are, we thank you Lord for bringing this community together, for You showing us the POWER of prayer. I pray to You Lord Jesus, AMEN!
Sending our love and prayers from California,
The Davidson's

donna said...

I am visiting from Bella's blog, and wanted to offer my prayers for strength and health to your precious baby boy. May God wrap you in His healing love, and help the docs figure out how to help quickly. Blessings to you and your family.

Anonymous said...

Praying for Daylon. Hoping he is a lot more comfortable today.

Many good wishes from NY, NY


sharon kaye said...

My heart hurts for all of you. I wish things would just get better and stay that way. We are praying for all of you as well as the doctors.

Anonymous said...

I am reading this with a broken heart. You are all in my prayers. I am so sorry he is feeling so poor and I pray they figure it all out soon.

Anonymous said...

We are praying hard! My heart goes out to your family though, Daylon has been through so much. I know how hard it is to sit by and watch these kids in pain too, especially when the docs are stumped too. Thinking of you guys!

Julie Williams

Anonymous said...

Praying for you! Have strength and courage and just keep going and getting better!

Anonymous said...

Praying for Daylon and all of you - healing for Daylon, strength and rest for your entire family.