Thursday, September 9, 2010

Day +76

See, the benefit of waiting a couple of days to post is that then I have "news" to share (Yeah, like that's why I waited!)! Anyway, there's good and bad news as usual, although I will warn there's more bad than we've seen in a bit.
 Here we go, Yesterday was "take two!' of Daylon's biopsies. A week in a half ago, Dr. Tolar tried to go at it, but the sedatives didn't take and we rescheduled. First he went down for the MRI were he was reintroduced to his old friend Propafol (sp?). It kind of funny to think that just a few weeks ago he was 100 of Propafol, along with 4 other sedatives and wide awake. They gave him 60 of it yesterday and he was out! After the MRI, they woke him up, took him back to the recovery room where Dr. Tolar was waiting with his team. After a short evaluation, he was back on the propafol. I always enjoy watching the biopsies and the hustle of everything getting done. It's a really fun atmosphere and Dr. Tolar is such a happy guy, it's kind of contagious. He promised that we would have the results within one week. I can not wait! Looking at him, it looks like the BMT took, but I would have the scientific evidence of it all too. Oh, I'm not sure if I ever mentioned this, but when we started this JEB BMT we had no idea if it would even work since there wasn't a lab rat version tested. They just thought it would and we were desperate to save our sons life. Well, a few weeks ago the results came in from Japan that they had created rats with JEB and the transplant was a success on them! It was really nice to have some added hope for all the JEB kids out there. He will also have news then on whether or not he has GVHD. Anyway, there was also a spinal tap scheduled by the attending that's on, but since Dr. Tolar is his primary BMT doctor he vetoed it. He was laughing with the dermatologists that he and Brian and I seem to be standing alone in our thoughts on Daylon's various conditions. They all think the fevers are coming from an unknown infection and we think it's the line (even though the test are coming back negative). Since he feels it's the line, no need for another spinal tap.
  Later that afternoon we got the results from the MRI. The necrotic tissue (brain damaged) area has a decrease in swelling and seems to be finishing out the normal cycle of things, meaning that his brain in that area is shrinking. It's normal and we knew it would happen, so no biggie. He looks good and that's what matters. Well, the MRI also should a significant increase in fluid around his brain. The BMT doctors are struggling to figure out what is happening (this isn't their forte) and I haven't the clue what to think. They said he is at a very high risk of a new bleed and or stroke. They said that we can take comfort in that he doesn't walk or crawl and everyone is too nervous to really challenge him. I can't help but think, "What kind of life is that?"  I wonder then: how long will this last? Should we not move him? How scared should we be? So many questions, with so few answers. The brain is a mystery, for sure.
  The good news is, Daylon has been home everyday since Sunday and we have been able to enjoy our family dinners again. It's so wonderful! There is talk now of trying to get Daylon home (to RMH) soon!! There is one little kink in the plans....yesterday, the doctors stopped the Ethanol locks in Daylon's line and today following dialysis (when I was setting up the wagon to go home) his fever came back.  He's flushed and sick and tired. He can barely hold his head up. The poor kid is miserable. I can't even enjoy the satisfaction of being right. :) The doctor that's on wants Daylon to get a new line put in, but there's a lot to consider and on that topic, I'm really going to trust Dr. Tolar and Wagner. Speaking of, Dr. Wagner is the "on call" attending starting tomorrow! From what I hear, he's only on for like 2 weeks a year! Glad we caught him! Anyway, Daylon will only be able to go home without fevers and without the serious antibiotics he's currently on. Yep, limbo. We may be here a bit.
  Please pray for Daylon's brain to recover and the fluid to leave and that he'll soon be healthy enough to leave the hospital. With this kid I'm learning the highs are so high it's surreal and the lows dip down to the earth's core. :)
   In other Edling news:
   Keira starts kindergarten tomorrow!!! I am so excited! Oh! And you know I will have pictures for you tomorrow! :)
   We had Tim for our dialysis nurse on Monday and he offered that since Daylon was drugged (for dialysis) we should take advantage of the time and let him watch Daylon while we do some family bonding. That's just what we did! We went to Cabela's and the Albertville outlet mall to look for snowsuits for the kids. Yes, Fall is here in Minnesota in all it's glory. Our Labor Day had thunder, lightening, rain and windy 60 degrees. Luckily, I LOVE the Fall. 
Cabela's is a sporting goods store filled with taxidermy animals and scenes of their natural habitat.

Sadly, our rough and tumble boy was afraid of EVERYTHING... while his sisters wanted to jump the fence!

The aquarium tunnel was AMAZING

All the fish in the tanks were species found in MN waters

Erin (Daylon's primary nurse) is SO SWEET! She heard me talking to my mom about how I missed her frozen banana splits (it's seriously legendary in our family) and she made some for me!! This is a time consuming dessert to make folks! :) It was so nice to have a taste of home here in Minnesota!
A big thank you also to Myrna and Dwight Frase for sending us a picture of a palm tree (remember how I mentioned I missed them?)! That was really creative and thoughtful!

Something Funny
- Keira: Bad news. Guess what guys?
- Brian and I: What?
- Keira: Summer is over and Minnesota skipped Fall and went straight to Winter! See it's all cold (60 degrees) and rainy outside!
 - Brian (laughing): Keira, Sweetie, you're gonna be in for a shock!

Yeah, she's definitely a California girl!


dg darling said...

I've been following your blog for a while and just wanted to tell you how happy I am that he is doing so well! I'm so sorry that things did not go well with his brain MRI today and will continue to pray for your sweet boy. Love from UT!

So this probably sounds really shallow in light of Daylon's health but....I've never had a frozen banana split like that and am wondering if you could tell us how to make it! It looks AMAZING!!!

Anonymous said...

my prayers are with you and your family, good luck baby daylon!

Anonymous said...

stay touigh Daylon, God bless you you beautiful little warrior!!!

Mom to Many said...

I am so sorry for the Limbo. I hope that somehow things can improve with his lines. I am so sorry that he does not feel good. The constant line trouble has really been a plague.
Cabela's is a neat place. I love the aquariums. Did the Mn. location have a little pool where you can feed the fish? My kids thought that was great.
Is your frozen banana split something like this?


Anonymous said...

We won't let our Faith waiver one bit less we start to sink. I am praying for your son. You know I even pray in my sleep for Daylon because I pray so much for him during the day :-)

Matthew 14:22-33 (English Standard Version)

Jesus Walks on the Water
22 Immediately he made the disciples get into the boat and go before him to the other side, while he dismissed the crowds.
23 And after he had dismissed the crowds, he went up on the mountain by himself to pray. When evening came, he was there alone, but the boat by this time was a long way from the land, beaten by the waves, for the wind was against them.
25 And in the fourth watch of the night he came to them, walking on the sea.
26 But when the disciples saw him walking on the sea, they were terrified, and said, "It is a ghost!" and they cried out in fear.
27 But immediately Jesus spoke to them, saying, "Take heart; it is I. Do not be afraid."
28 And Peter answered him, "Lord, if it is you, command me to come to you on the water."
29 He said, "Come." So Peter got out of the boat and walked on the water and came to Jesus. 30But when he saw the wind, he was afraid, and beginning to sink he cried out, "Lord, save me." 31 Jesus immediately reached out his hand and took hold of him, saying to him, "O you of little faith, why did you doubt?"
32 And when they got into the boat, the wind ceased.
33 And those in the boat worshiped him, saying, "Truly you are the Son of God."

Linda said...

Hi Jen: Wonderful news for the JEB children out there. Hopefully this will be the cure for all these EB kids. How wonderful would that be??
Extra prayers that Daylon starts to feel better and gets a chance to go back to the RMH with the family. Take care and keep the Faith. Love and Peace. Love Leah's Nana

Angelique said...

Oh my! The roller coaster continues! I feel like I haven't seen you guys in forever! But now I know why. It's great that you have been able to have your family time once again. I think we're all going to be in for a real shock when winter comes. Oh, and how did I not know about the outlet mall??? I'm so there...LOL! Keeping up the prayers and vision that Daylon and Bella will be playing together before we know it.