Friday, January 21, 2011

Day +211: Here we sit...

Well, the title pretty much says it all.
 I'm here at CHOC with Daylon, Keira and two different forms of bacteria growing in Daylon's blood. Remember how in my last post I said he might be admitted? Well, turns out he had a staph infection from his Hickman line, but since the fever only last two days Daylon was free to come and go as he pleases and IV antibiotics could just be done from home. I am SO THANKFUL Fairview (the hospital in Minnesota) made us undergo a series of classes so we could take care of things ourselves and spend less time in the hospital! Dr. Buchbinder had Daylon go to outpatient infusion to get IV IG, which is a blood product full of antibodies given over six hours. Daylon is such a trooper! He did cry for about 30 minutes of the six hours, but have you ever know a kid to sit still for 6 hours? He's such a great kid!
 Cultures from his PIC line have continued to come back positive for infection and on Thurs it came back positive for two infections. That was the last straw for the docs and they had us come in. If everything goes as planned, we should be discharged late Sunday night which is perfect because Keira starts her new school on Monday and I have to be there for that!

  Minesotta called with the first step of his genetic testing results. Basically, they said that it looks to more than likely be genetic (the blister test that Brian and I took, proved that) and he's without a doubt Junctional Herlitz. There's a bunch of other things we learned (which to be honest, I'm not sure I entirely understand), but he's pointless to explain because it doesn't mean a whole lot just yet. Brian and I will be tested next, this June when we return for Daylon's "One Year" check up.
 More highlights of the week:
 Daylon rolled over on Monday night! He hasn't done that since he was 3 months old, so that's a biggie. Our personal goal for him to have him stand or crawl by Easter. We'll see. Knee skin tearing and hospital stays will definately slow the goal.
  Six days ago, as a last attempt to save our son from continuing malnutrition and vomiting, we started giving him 3 ml every 10 minutes all day while he's awake to keep his stomach constantly going a bit. I'm happy to report that it's actually working!! He's up to 10 ml every 5 minutes and vomiting less than 10 times a day!! He even had two days this week where he didn't throw up at all! Amazing!
  His skin has also made big stides in improving this week. Almost everything has healed up and he's only been getting a blister, at most, a day! Woo-hoo! We have need to go back to the open cloth diaper over the disposable diaper, like pre-transplant, but that's okay.

  Starting next week, dialysis is down to two days a week!!!! Can you believe it!?! His BUN today was 15 (under 19 is good) and his creatinine is 1.34 (under .58 is good). Improvements everywhere!
  The lowest point of the week, well, sadly it's not the admission to the hospital. Remember last month when Daylon had oral surgery to remove granulation tissue? Well, during the procedure they used tools to keep his mouth open and remove the tissue that were too rough for his mouth. His mouth developed very unusual blisters, which eventually became infected, then healed up. As they healed, the blister started to clump together into a mass. The mass has grown and grown. It's alarming, actually. The best way I can describe it, is it's like he has a double decker tongue. See for yourself:

Mid-December (the circles are the odd blisters)

This week


I sent the pictures to Dr. Tolar and he is having the ENT doctor from out here take a small biopsy from his tongue to check for cancer. It's just a procaution, but it's growing so quickly that they need to check for the obvious. The thought of Daylon having cancer on top of everything else makes me sick. Brian and I have decided to just put it out of mind the best we can until we get the results. Please pray that his tongue is nothing more than unusual scar tissue.

 Other Edling news:
 - So excited to speak to Aunt Emily on Skype, Keira ran onto the tile and fell, busting open her chin...AGAIN! Second time in 6 months! I've never, EVER heard of anyone doing that and she's done it twice! Poor kid! I think she must not put her arms out when she falls! :) What a goofball! Six hours in the ER and five stitches later, she was as good as new!

  I hope you all are doing well! We're so thankful to have so many wonderful people in our lives! Good night!
The twins are enjoying the Summer like weather in California!

...While, Caleb hasn't adjusted to life without some sort of jacket! :)

13 comments:

BRIAN AND BROOKE said...

I am sorry to hear you have to go back!!! I hope you dont have to stay long and Daylon can recover quickly. So weird about his tongue.... PRAYING its not a form of cancer. You guys have come such a long away.....nothing is going to get in your way now. I just adore your entire family and I am cheering you guys on!!! In your previous post...thAT MOOSE sweater and the Dinosaurs pjs....my son has the same clothes... looks like we have the same taste :) Daylon is so handsome and he is such a blessed little boy!
I am glad Keira is ok....does she need to start wearing a helmet around the house lol.
YOUR DOING A GREAT JOB JENNIFER..... take care :)

Anonymous said...

praying for you all here in canberra australia. Jennifer,you are an amazing parent doing a great job fast healing for mr Daylon

Amber said...

Oh, you guys! First, I can't believe Kiera fell and busted her chin again!! Dang.

A toddler holding still for 6 HOURS? That's Guinness Book of World REcords time.

That poor tongue..we will keep you all in our prayers.

Lisa said...

Three steps forward, two steps back... Daylon is so brave and so resilient. I hope for discharge tomorrow and good news on the tongue biopsy.

Mom to Many said...

Oh, poor Daylon's little tongue. I hope that they can fix it for him eventually.
We will be praying for him.

My first thought upon seeing her split chin was again? And then the motor planning issue came to mind. I have a daughter that did not seems to protect herself when she would fall either. Funny how that works. I hope it heal s up fast. Sorry she had to go through that again.

Hang in there Jen.

Love- Cheryl

Amy said...

Poor Daylon! He's such a trooper. I'll be praying that the biopsy comes back just fine and that his tongue heals.

Hugs to Kiera too. I can relate to her. I was a complete klutz when I was little. I managed to break the same wrist, in the exact same place twice.

Sara said...

I haven't been by to check in for awhile.
I've missed a lot!

I am friends with the Ringgolds and I live, literally, 2 minutes from CHOC.
We have a small condo, and I work full time, but, if you ever need to be at CHOC with Daylon and have the other kiddos with you, and they need a break, I'd love to hang out with them here.
I am a total stranger offering to watch your kids, I know that is bizarre, so I understand if you aren't comfortable. I have an 8 year old and a 3 year old, so there is lots to do here :)
(You can ask Tim for a background check).
Just email me: MrsCooper811@aol.com if you get in a bind. I can literally walk outside my door and see CHOC down the street.
Prayers for Daylon, SuperMan indeed!

Anonymous said...

Hoping and praying Daylon is doing well and the tongue issue is just a big old nothing. Keeping you all in my daily thoughts and prayers. It's so nice you are all in California and getting to enjoy the nice weather.
Thank you so very much for keeping us all (Daylons fan club) in the loop. I know you are a very busy mommy.
Love and prayers,
Bernie from California (Fontana)

Annalien said...

Continued prayers for Daylon and you all! I am so glad about the good news with regard to his skin and kidneys, and I pray that his tongue is nothing serious. God bless you!

Anonymous said...

We are hoping and praying that Little Daylon's biopsy will come out good on his tongue and that he is out of the hospital and doing well. Sorry to hear about Keira falling, hope she is felling better. So glad you are all back in CA. Keeping all of you in our thoughts and prayers. So glad his skin is doing better. Hanng in there you little superman Fight, Fight, Fight. You have come such a long way and you have the most wonderful parents that love you and take exceptional care of you, you are truly blessed.
Jen, hope you guys can get some rest and that things will go well for all of you. We Love You. Hope to see you soon. Give the kids a big hug for us. They are so precious. Hang in there. Take Care.

All Our Love;
Myrna & Dwight CA

The McLaughlins said...

Hello Edling Family,
I am so sorry to hear about Keira's fall on the tile. That's a bummer. But at least she'll have a cool scar to tell stories about when she gets older! :)

I am also so sorry to hear about Daylon's infections and his poor little tongue. I will definitely be praying that his infections clear up quickly and that the biopsy of his tongue comes back normal and it's just crazy scar tissue.

That is awesome to hear that he is able to eat more and not throw up as much. Keep progressing little man. And I'm so happy that his dialysis is slowing down. Man, Daylon really is SUPERMAN!! He can even sit still for 6 whole hours. That is unheard of. It's bummer to hear about the bad news but such a delight to hear about all of the good stuff too. Daylon is a fighter and he will get thru this!!

Very Cute pictures of the kids by the way!!!

Lots of Love,
Amber McLaughlin, CA

Grammy Staffy said...

We keep Daylon in our prayers.

Mom to Many said...

Just wanted you to know you are on my mind.
I am praying for you.
((hugs))

Cheryl