Thursday, July 29, 2010

Day +35

warming up Daylon's body after he got some fresh bandages!

The guards stood at their post today, ready for action. When I say "guards", I mean Brian and I. Today, two new BMT doctors (the attending and the fellow) came on active duty and trying to make sure they're up to speed on Daylon, while still trying to make sure the new PICU doctors, who don't visit the room, are on the on the same page as everyone else, leaves you feeling a bit guarded. It's not all that bad when we're being annoying by asking a million clarifying questions, but I hate when we're absent for a conversation. Darn lunch. I'm probably just paranoid. Here's the run down for today...

This morning, we over slept (those metal dark out blinds do it every time) and missed rounds. We learned when we called in (and spoke to a nurse who's never had Daylon) that tomorrow morning (Fri.) he's scheduled to go down to radiology for a MRI. This is beyond confusing to me because just the day before the BMT docs said he wasn't stable to be moved. He's not even being rolled in his bed, more or less wheeled down several floors, moved onto a metal bed and bagged for an hour long procedure. The other weird thing I noticed is when she was ready off his blood results from today's lab, his white cell count jumped from 6.6 to 13.0. That's a hardy jump. Kind of a scary jump. When the count moves up REALLY high or really quickly it signals infection. So, half a day worth of time and 10 conversations later, Daylon is going in for an MRI tomorrow morning because the doctors are worried about meningitis. Lovely. For those of you only vaguely familiar with the disease, like me before this afternoon, don't look it up. Lets wait for the test results to come in. His temps are over 102 at one check and then they're 93 the next. They're hoping that the MRI will show what is going on with his little body. We do too. As far as him being too sick to travel, he might still be, but they need to know what they're dealing with. We've been told that a parade of people will accompany us on the outing which is a comfort.

His bilirubin is down to 1.1, which is wonderful and his liver ultrasound showed that all three major veins are flowing in the correct direction! Oh! Plus, his liver is down in size from last week! The VOD is going away! We love good news!

His Creatinine and BUN (kidney function) have gone up,which is expected since dialysis was once again cut short yesterday. Yesterday his dopamine was turned up to 20 (that's maxing the dose out, which he's never done) and left on until 5 am. Today, several new steps were taken to help with his blood pressure during dialysis (remember he can't do the all day dialysis) including a dose of steroids to help with his adrenal glad function. He went up to 18 on the dopamine within a half hour of dialysis, and then 20 by 90 minutes in. We were starting to stress about his pressure when he plateaued for an hour and then gradually started to come down while still on dialysis! He was on 15 when dialysis ended and completely off dopamine two hours afterwards. To say I am shocked is an understatement. This afternoon they were able to pull off 90g. of fluid! Yay! The ups and downs of the roller coaster we call, BMT are amazing! I can tell you one thing, at the end of all this my hair will be snow white!

Daylon has handled sedation pretty well today, which is great since the box of sedation drugs that they can pull from is empty. Tomorrow after the MRI, he will be rushed back to his room where dialysis will be waiting for him (they have to get the dye they'll give him out of his body since his kidneys can't do it themselves) and then about an hour after, they'll start to wean him off some of the less powerful sedatives.

I really feel like he's moving forward. I'm not too concerned about the meningitis scare. I don't know why. It could be that my brain can't process one more thing, or it could be that he doesn't have it and our Creator is sparing me the stress. Who knows. Tonight when we were changing out his headgear dressing, I saw a side of my little guy I haven't seen in a month. He started to wake up when I was doing his mouth cares and suck on the Red Robinson (suction tube). He peeked his eyes open a bit and when I moved it away, he smacked his little lips the way all babies do and settled back to sleep. I loved seeing his whole face. When I watched him, just for a second, it was like I was back home, putting him to sleep for the night. Those nights feel a million miles away now. I'm so glad I was able to watch him be a baby again.

We need to head back home to grab some shut eye before our busy day tomorrow. I'll leave you with the some pictures from our day. Thank you for all your support and checking up on Daylon. Sweet dreams.

Keira and Caleb participated in the RMH lemon "Aide" stand. The kids all worked so hard in the hot, hot sun! They came away with new friends and nice tans!

In the words of my mother, "We made out like BANDITS!" tonight at BINGO! We won a 3ft talking doll house, legos, a giant floor puzzle, tinkerbell stationary, Strawberry Shortcake activity set, and baby rubber tonka trucks just to name a few! What a blast!

The kids love their new floor puzzle!


Mom to Many said...

Your description of Daylon smacking his little lips made tears spring to my eyes. What a tender mercy to get to have that sweet glimpse of him in the midst of the trials.
My daughter came to me today and told me she has been praying for Daylon. Isn't it interesting that the Lord gives us the opportunity to pray for each other. He sees all. He knows what we need, but praying for each other gives us the opportunity to draw nearer to him as we supplicate help from him. The door after all has a handle only on our side. He stands at the door and knocks. I am so thankful he continues to knock. The noise of the world makes it hard to hear. As we go to him for help for ourselves and others we hear him knocking desiring to love us and cradle us in his arms as we suffer through the difficulties of this world. I know that my Father in Heaven is real. I feel his influence and love in my own life. I know he lives and I know that he loves me. Rev 3:20 Behold, I stand at the door, and knock: if any man hear my voice, and open the door, I will come in to him, and will sup with him, and he with me.
I long for that closeness. I long to have him sup with me and I with him. I can't do it by myself. I know because I have days when I try. I forget to ask, to slow down and to feel. I forget to quiet my thoughts and realize that it will be alright in the end. He will make it alright. He will heal my heart and carry me as I endure to the end.

<3 Cheryl

Pati @ A Crafty Escape said...

Glad to hear things are going well... we'll send extra prayer so that the results of the MRI today are good. Hugs from South Florida.

Linda said...

Saying extra prayers this morning that the MRI results are excellent, and he makes the trip for the test just fine.
You have one special little boy there. Keep the FAITH. Love Leah's Nana

Anonymous said...

Praying and thinking of you all. We are friends of Bella's (-: I wanted to comment to let you know what a beautiful family you have. May God bless you all- We will be praying for Daylon and thinking of him today, Sweet Baby Boy. Good to hear God is sending you clear indications that Daylon is growing stronger and battling through this. For you to see him open his eyes...BEAUTIFUL. I was scrolling through your pictures and looking at his beautiful smile. You are a strong mom, i commend you and your family is such an inspiration to many. May comfort and peace be with you today. Lord, we thank You and praise You. Amen.

Angela K. Nickerson said...

I am a friend of Elle who is headed to MN next week for the same treatment. Thank you for your blog! Daylon is in my prayers! :)

Brett, Rafi's Dad said...

We hope the MRI went well, that Daylon made the trip downstairs and back up without incident and that the results say nothing. We are thinking of you guys constantly.
Rafi's Dad


Thinking of you guys ! Hang in there!

Anonymous said...

Praying for you guys. I know this is a very difficult time, but our kids are one of a kind. They are very strong and have beat the odds several times. Stay strong, we are all behind you guys lifting you up.

Joy Thornton
Payton's mom