Sunday, February 13, 2011

Day +234 -preparing to go under the knife

earlier this week with his eyes open
...or the blowtorch. We're not really sure yet. I asked Dr. Tolar when I saw him on Friday if he knew how Dr. Rimmel was planning on removing the granuloma and he said he didn't know. In fact, he said he was the best ENT he has ever worked with and he trusts him completely, so he's not going to worry about it. How's that for a compliment? Granted Dr. Tolar the kind of guy who has a compliment for everyone, but still. It made me feel a little better about the situation. I do have to admit though that it didn't stop me from stressing about the surgery all weekend. I've got the whole butterfly in your stomach, can't sit still feeling. It's awful. Part of my paranoia (or at least that's what I hope it is), is that between having regular blistering and scarring from his airway, he has suffered some permanent damage from having such a horrible case of mucositis and being intubated for a prolong period. When they went in in December to intubate him the doctors hmmm-ed and haaaa-ed in the OR before telling me that the scaring was pretty bad and his vocal cords were fusing together. After the burr hole surgery he bled for about a week down his throat and vomited bright red blood. This time around, the want to do the surgery without intubating him. Normally, that would have me "woo-hoo"ing out loud, but this is a scary surgery to not intubate. The mouth is such a bloody place when aggravated and I know from daily experience with Daylon that it doesn't take much. There's a fairly good chance that all the blood will pool in the back of his throat and he could aspirate on it causing pneumonia. They granuloma covers most of his tongue, so there will be such a mess to deal with guaranteed. To add to everything else, I've had now three doctors tell me that it's more likely than not that the trauma from surgery will leave his mouth in bad condition resulting in further surgeries. I feel so horrible for our little man. No one can understand why Daylon's mouth is worse post transplant...and it was bad before! From what I'm told, the other patients mouths were one of the first places to spot improvement. Oh well. His skin is doing great, so we're very thankful for that. We'll just have to pray and wait that his mucous tissues and organs will eventually catch up. Dr. Tolar is going to run tests on the tissue removed and check it for Caleb's cells to try to get an understanding of what's going on with his mouth. I'm so glad we're up with such wonderful technology!

Daylon getting ready to turn in the pop-tops that some of our friends and family have saved from back home! Thanks guys!
  I'm sorry to be such a downer. I've been stuck in our room at the RMH with the exception of Tues and Friday ALL DAY LONG. Daylon has been so fussy. He has every right to be. He's bored out of his mind (Mommy isn't as entertaining as 4 siblings) and his constant corneal abrasions have lead to a nasty infections in both his eyes again, which have lead to rubbing, which have lead to more abrasions. Vicious cycle. Oh!...and being the genius that I am, I left his glasses at home. They're kind of important when your kid is going blind. :) Did you know that a mother who takes care of a child with special needs loses 6 years off her life for every year she takes care of said kid. It's even higher if they have other children. Learned that tonight watching a documentary on PBS while I was waiting for Master Piece theater to start. That's bored I am...Well, truth be told, I actually do like the Pre-19 century, British aristocrat movies they have on from time to time... back to the rant :)  I'm going nuts not having my kids drive me nuts. Funny how that works. I miss the madness. Looking at the Courtyard is when I miss them most. It's like a movie. I keep finding myself staring out the window and I can literally see them. I see them running through the sprinklers, I see them sliding down the giant caterpillar with Chloe (Elle's sister), I see Keira and Caleb pretend to go fishing off the bridge, I see the twins running around the porch of the playhouse, I see Brian rocking on the swing laughing. It's seriously like something out of a Lifetime drama.  I think I'm going crazy. Either that or it's an aneurysm. :p
  Okay, happy thoughts...
  So, Dr. Tolar did give us some wonderful news on Friday. Check out this picture!
  Control= Dr. Tolar's skin   
  DE= Daylon Edling and the number beside it is the number of days post transplant when the biopsy was taken.

The red line is what you need. In the middle picture Dr. Tolar explained that the dye picked up some of the collagen instead of laminin b/cwhen he ran the tests, there was nothing there. In person you can see the line is polka-dotted and kind of odd looking. In the picture on the right, the red comes in like a line. Look at it compared to the controlled sample! It looks great!

In this picture the tinsy bit of red you see in the middle picture is real. On Day 0 Daylon did have some of this form of Laminin. In 30% of JEB kids, their bodies can begin to fix their mutation here and there. For Daylon this didn't help a ton because he has a mutation in a couple places, but it may have helped him to live as long as he did without the transplant. The picture on the right shows an AMAZING amount of correction in his skin's DNA!! Dr. Tolar is really excited about the possible affect of the transplant on JEB kids! I am too! He said that he believes that where there is a little gap in the red (off to the left of the picture) is only there because Caleb's cells haven't had enough time to multiply and fill in the area. With time, that very well may happen!! :)
 Isn't this great news!?!
 Daylon and I will head over to the hospital around 10am tomorrow for a head CT and then over to pre-op from there. The surgery is scheduled for 1:50pm. Please keep Daylon and the surgeons in your thoughts and prayers. You all are the best!

PS- anyone who's interested, the Press Enterprise Newspaper has done a follow-up story on Daylon and the Children's Cancer Research fund. You can read about it here or by going to and searching "Daylon Edling".


Kathie said...

Our prayers are with you and Daylon's name has been put on the Temple prayer rolls. We also include, every night, asking for your peace of mind and strength and stamina to get you through this...both you and your family since you're seperated at this time. Father will bless you and guide the doctor and all that will care for him in any way.
Our love to you,
Cathy and Theresa in Utah

Anonymous said...

Stay strong, Daylon is an amazing little man and he will come through this!!
Love to you both

Kim M said...

So glad to see the update to know when things are happening for your little man!!! He is so adorable!

The biposy results are amazing and so promising! I am so glad these doctors are working so hard to create a way to make life easier for all these EB kids.

I'm praying for Daylon, you and the rest of the family throughout the day. As hard as it is for you, I cannot imagine how hard it must be for his dad being so far away.

Praying for wisdom for the docs/medical team.

Kim M, Waterford, MI

Anonymous said...

Just watched "My Skin Is Killing Me" and cried the whole time. I am in awe at what your little guy is able to endure and his strength.

EB parents are super parents with super hero qualities.

My prayers are with you and Daylon. He is such a cute kid!!! Sending you lots of strength.

Here is another thing.....parents of a special needs child have so much love that I think they get extra special lives because of the GOODNESS IN THEM.

Mom to Many said...

I can imagine you are missing the madness. The couple of times I have been away from my kids I have missed them like crazy too. It's got to be worse since you are in a place where they have been with you.

Medical people, Daylon and YOU will be in my thoughts and prayers today.


Anonymous said...

Hi Jennifer!

Sending lots of prayers your way as Daylon goes in for surgery today. My son, Luke, had surgery the other week (because we haven't spent near enough time at the U of M with Molly this year!) to have his adenoids done and some other stuff, but his doctor was Dr. Rimmel too. I agree with Dr. Tolar, I think he is a great doctor. Quieter than what I like, but he gave us all the facts/details we needed and I could tell he was good. I know how hard it is to start with different doctors when your kid has an extensive medical history, so thought I would give you my 2 cents on him:) LOL!

Take Care!

Julie Williams
Foreston, MN

The McLaughlins said...

I am glad to hear that his surgery will be today. Hopefully they will be able to get all of the growth off of his tongue and it won't grow back. I'll be praying for Daylon and his surgeons today. I am sorry it's been frustrating and lonely. I know that even though my kids drive me crazy sometimes, I still miss them even if I am just getting away for a few hours to have me time. My children make me so happy even when they are driving me bonkers! :0)

I am excited to see those skin tests. Daylon seems to be doing so good on that front. Go Daylon!!

I also read the story in the P.E. last week. I love that they are still interested in Daylon and his progress. That's how I learned about Daylon, was thru the original story the P.E. did. My friend Winter who lives in Corona had sent me an email about the fundraisers they were doing for Daylon and that got me going. Hopefully, their continued interest in Daylon and his progress will allow for lots of people to become aware and possibly it can help raise money for a cure.

Looking forward to hearing Daylons post surgery update.

Lots of Love,
Amber McLaughlin, CA

Jamie said...

I'm praying right now for you guys!

Jeanne S. said...

Praying for Daylon.


Love all the good news at the end of the post!!! Thanks for posting the pics for us to see!! Its awesome! What a difference!

I hope you can get back to the busy life and be back with your family.... sounds like you need some fresh air :)
I am so glad you have Dr Tolar, he seems like such a great person and doctor.

I totally agree with this statement someone else posted:
EB parents are super parents with super hero qualities
SO SO TRUE!! You and Brian are AMAZING

I am so sorry about his eyes....poor thing. Cant help but want to rub them.
Dont feel bad about glasses.... us moms always seem to forget something....or is it just me lol

Prayers coming your way!