Thursday, August 26, 2010

Day +62

    Today is actually Day +63, but it's just begun, so I'll catch you up on yesterday. Yesterday was a pretty good day for Daylon. First off, Dr. Tolar came in and told us that he's been working on Daylon's Day +60 labs and he had the results! Daylon is 100% engrafted within his blood, as opposed to Day +28 results of 100% and 91% (two different types) which was still considered a success, but obviously, 100% is better. He also said that his T cells (immune fighting cells) level was at 397. A healthy, person without transplant has a level of about 400. He said that quote, "across the board, I don't see this type of level until one year post transplant." What great news! We're all feel so encouraged by such a high count. It was kind of funny, actually, because Dr. Tolar said that Caleb must be a pretty incredible little boy and that it's almost like he has cells with super powers. I laughed and said, "Yeah, like a X-man." His face lit up and he shot back, "Exactly!" :)
   Yesterday morning Daylon had both physical and occupational therapy and things went well. He was more alert yesterday (spoiler alert: and today) than he has been. He's turning his neck now to tract objects and is consistently responding to his name. Perfect timing because I was beginning to wonder if how he's been is a permanent state. It's so funny, how you're not given more in your trials than you can handle. Every time I start to feel I'm getting to my breaking point, I see a glimmer of something new, an improvement. Once that happens, it's like the world opens up and I can breathe easy again. How can I not smile when I'm reminded that God is ever present in our lives.  I know He's watching over us, and is aware of our needs.
   As for dialysis today, well, things are still a bit confusing. Daylon's blood pressures have gone from low to high. He's actually hypertensive now for even an adult.  The good news is that he didn't need any dopamine to keep his blood pressures up! :) Daylon had his lines ethanol locked for several hours in the middle of the night, to help clear the line of any bacteria. I am happy to report that his fever went only to 101F! Yay! He still was splotchy and acted a sick, but he slept a lot and fussed very little. :) Last night when they tried to lock his lines, I don't know if the nurse pushed it through to fast or what but his face turned all red and he started choking. Anyway, she freaked out and pulled it out. The nurses decided that they would wait until tomorrow to lock his lines when more doctors are around. I don't think it's a big deal, to be honest. I hope he doesn't run a fever today.

Daylon after dialysis
Woo! Look at all that skin! :)
     Yesterday was also the big bandage change!! I was so nervous not to put on as many bandages. Thankfully, Dr. Tolar came in in the middle of it and gave me the pep talk I needed to get it done. His feet are a complete disaster, but the rest of him looks amazing! It was actually the first bandage change I've done by myself in months. Well, I take that back. The nurse did take a picture of his back while I held him up and I paged her twice to hold his bandages in place on his legs while I put the tubifast over it. Anyway, it's a huge milestone for him! He is normal a CRAZY man during bath time. He fights us so much  that he ends up tearing up his skin and bleeding, and we're worse off from when we started.  High five, Little Man!

                               normally we go up to the top of his thigh 

normally all the way up
We have a new attending on today and just got our new fellow a couple days before, so I feel like we're back to square one in a way. At least I've got Dr. Wagner's and Dr. Tolar's email addresses. Oh well, overall, things are moving forward.
  While I've got you here, a bit of time has passed since I started so I'll fill you in on today real quick:
  Daylon had a good early morning. Alert again! Yay!
  Continued with high blood pressure and the Nephrologist is taking off more weight (WHAT?!) because he believes it's fluid related. He said the fontanel is not a good indicator of his fluid needs. He also says that it's really rare that people are allergic to dialysis, so he doesn't think that's what his problem is.  Also, he said that if he had an infection in his dialysis line, the cultures would show it. He said that his problems have nothing to do with dialysis. It's all just a coincidence... This guy is seriously erking me. It's like he thinks that if these problems are dialysis related than it's his fault. My gut tells me he's wrong. How can Daylon not get sick on the days he doesn't have dialysis and say that the two aren't related? I've felt it was the problem from the beginning. Dr. Tolar thought one cause was an infection, and treated it like one and it got better.
  Today he's also ghost white and throwing up. He's not strong enough to get it all out, so I have to stick the Red Robinson in to suction up the rest, which causes gaging, which causes, yep. And the cycle continues.
  Well, dialysis is ending. I need to go help get a bed weight. Hope all is going well in your corners of the world! Have a happy day!
PS- no new blisters so far! It's been almost 12 hours with fewer dressings!
pooped out from his dressing change!


Jess Edling said...

Aww you bought a lava lamp! I told you I would get you one! :p Does he like it? Those pictures are awesome! I love them! I think your Nephrologist has a set opinion and is refusing to see any alternatives other than what he came up with on his own. Highly annoying. Talk to Dr. Tolar about it! Or just let me know and I can fly out tonight to kick his butt for you tomorrow and fly home tomorrow night. Just say the word, Jenn, and your muscle will be there! Mwahaha. I am so glad we are seeing so much progress with Daylon. See what faith can accomplish? There are still modern miracles happening every day! Love you.

Aviles Family said...

I'm no professional, but his skin looks amazing! And how exciting that his numbers are so good! I agree with Jess, some doctors can't take an opinion from anyone but another doctor. They are so egotistical sometimes. And since some drs are not religious they have a hard time accepting Mother's intuition. Good luck Jenn! Keep fighting for Daylon! You know what is good for your baby, stand behind it.

Nancy said...

His skin looks AWESOME!!!! I'm so happy to hear all the great news about his improvements! As for that dorky Nephrologist -- aagghh!! Take Jess up on her offer! Not that I know anything, but I think it's dialysis related also. It really does seem like too much of a coincedence to not be related somehow. I hate doctors that think they know everything and won't consider anyone else's ideas, especially us lowly peons who didn't go to medical school. Haha! We'll keep praying that Daylon's kidneys will get better and he won't need dialysis anymore, and that his doctors will be inspired to do what's best for him (and humble enough to accept it!) :) Lots of love.

Anonymous said...

Daylon's skin is looking very good, but those eyebrows are AWESOME! SO CUTE! The doctors need to understand that EB IS RARE!, that Daylon and the way his body works IS RARE!, so of course he could be allergic to dialysis! Just because that rarely happens doesn't mean it is not happening to Daylon, even if it had never happened in the history of dialysis, it could be happening to Daylon, and if his Mother thinks that it is, then the doctor better seriously consider the possibility, if they know what is good for them! The doctor should know by now that Daylon is not like most other dialysis patients, so yes Jenn, you keep fighting for Daylon. All of us, Moms, Dads and Grandparents are behind you 100%!
Praying for Daylon in Bowie, MD Judy T. (Leah's Grandma)

ANewKindOfPerfect said...

Wow, his skin really looks great! That is awesome that you are leaving more unbandaged, and that Dr. Tolar came in to give you the pep talk to encourage you to do so. What an amazing difference you can see already, even to someone like me with no EB experience!

Mom to Many said...

Your baby looks beautiful!
He is really coming along! I am so pleased to see his lovely skin exposed.

I wish it were possible in medicine to not have people's egos get so wrapped up in the results and in their opinions. I am awfully glad that I know that I am do not know all. It would be too big of a burden for me to feel like I had to figure it all out on my own. I guess I need to remind myself of that next time I feel insecure.

I am so glad the dressing changes are getting easier. I hope his little feet improve too. Do you mean his feet are a mess with wounds still or scarring?

Take care,


Anonymous said...

Starting to look like his picture before chemo started. And no bandages. Mom will learn to live with less bandages. For now I will continue to pray. sg - KS

Pati @ A Crafty Escape said...

Love how great his skin is looking! I wanted to tell you that I have a lot of respect for you, a lot of people would let the doctors walk all over them. Continue to trust your intuition, no one knows Daylon better than you!!!

Bella's Blessings said...

The hard part of working with a nephrologist who has contributed to the writing of no less than 85 chapters in various textbooks in his career (no joke) is that it leaves less and less room for discovery. Too much referring to the past and not enough looking forward. Don't give up on your intuition. Keep being an advocate for Daylon. He is counting on you to be strong for him.

Daylon's upper arms and legs look GREAT as does his face! Great looking skin! Go x-men!

jeanine said...

I can't believe how great his skin looks!!! It's amazing!

I believe that your intuition is right. Heavenly Father gave moms that 6th sense... I just hope that this dang doc will finally listen.

Denise said...

Daylon you sure are one cutie...seriously. :)

The good news is if you just get the dialysis guy to pay attention to what you are saying. Is there any kind of testing they can do to see if Daylon is allergic? It just makes hang in there and keep letting him know what you think.

Denise WI

Carla and Matilde said...

So good to see that AMAZING skin! It is miraculous. I know how difficult is to take the bandages off, but as time goes by you will gain confidence.

As for the nephrologist, just hang in there! You know Daylon better than anyone else! And you have the mother's intuition on your side. Just keep questioning him.
Could it be a fungal infection that has not been observed in cultures?

Very best,

Anonymous said...

Go Daylon!!! You are an amazing little guy with an amazing family! Keep up the good work Buddy - it's gonna be alot of work to get those muscles going, but I believe you can do it!!

Can't wait to see your smiles and hear your giggles!

Praying in Waterford, MI
Kim M

Anonymous said...

Still praying for Daylon and Bella and your families.
Can you request a second thrid and fourth opinion regarding the suspected allergic reaction to dialysis? I'm with you - makes too much sence to just discount entirely...

Andrea said...

He looks beautiful with all that skin showing!!! I am praying that things continue to go well with his skin & the the nephrologist will come around!!!

Anonymous said...

Wow those X-men cells are doing their thing, Daylon's skin looks awesome. What a fighter you have, God is good. Lord we pray for Daylon today, Lord Jesus we ask that you continue to guide the Dr's and nurses in his care, that they do so with an open mind. We pray that You continue to provide the Edling's with peace, that thay feel the love of many strangers, family and friends praying for them and find comfort in that. We pray for you Daylon with all of our hearts and souls. I ask that the angels surround you and protect you. God is good, all the time...Amen.

Chris said...

Yay for progress with his skin and fewer bandages. I am praying that you and the doctors can figure out what is making him sick so it can be successfully resolved.

Congrats on the 100% - can't get any better than that.

Alicia said...

Hi, i've never commented before, but i've been reading for a while now. My husband works in dialysis. E-mail me at He has some ideas.

The McLaughlins said...

Go Daylon! His skin is looking so so awesome. I'm so impressed with his progress. I know he's not out if the woods yet but, with our continued prayers and encouragement, I have faith he will pull thru this as normal as can be. Stay strong. And listen to your instincts. Don't let those docs push you around.

Take Care,
Amber McLaughlin,CA

sharon kaye said...

I'm so glad he is improving. His skin looks beautiful. Keep going with your mother's intuition. That is a gift that Heavenly Father gave us mothers so we can help our children. Keep fighting for Daylon. You are his hero.


I AGREE Caleb does have SUPERMEN POWERS!!! SUPER CALEB!! It is just amazing how he is doing... 397 is awesome!! He is doing so good! Go Daylon! HE IS ALSO TURNING HIS NECK AND NO BLISTERS....WOW..... LOVING this good news! His skin is looking OH SO AMAZING by the way!

I hope this whole dialysis thing gets figures out. I wish they would consider it a potential reason and look into it instead of just saying its rare thing to happen...and dont want to be at fault. Just fix the problem!
Praying for you guys :)