Thursday, September 30, 2010

Day +96: next chapter...and the game slows

Daylon made the head story for the Upper Midwest Ronald McDonald House Fall 2010 edition. The newsletter comes out only twice a year, so we're so honored!
 When I was a kid my parents did as all good parents do. They pounded into us manners and the rules
of life. You know: be fair; don't cross the intersection until the little neon man lights up...that kind of stuff. To this day I can hear my mother's sing-songy voice in my head, "If you don't have something nice to say, don't say______?" And then all of us kids, "...nothing at all."
Keeping that in mind, I'm not going to say a word about dialysis the last couple of days.  They say a picture says a thousand words. I'll let the pictures do the talking then....

Daylon before dialysis:

Daylon after dialysis:

  There you have it. The battle continues...
  Daylon's mouth has slowly become more and more of an issue. He has several open sores on his tongue,gums, inside of his cheeks and the underside of his lips. The skin in his mouth has been peeling off in sheets. That's something has NEVER happened before, new. It doesn't help too that dialysis pulls him so dry that his lips are cracked and shriveled. Unfortunately, no matter how often I apply aquaphor to his lips, it hasn't made a dent. Anyway, his mouth is also producing REALLY thick and stick-ick-eee mucus. When he keeps his mouth closed for a longer period (ie: sleeping), the mucus creates a web from the roof of his mouth to under and around his tongue. We have to quickly help him clear it out before he gets too upset and starts gagging. It's so weird. They're checking him for different fungus and viruses, so I'll keep you updated.
  As far as his GVHD, well, I have a theory. The biopsy came back negative for GVHD, but apparently it doesn't always show on a biopsy. Since it's clinically looking like GVHD, they're treating him for it. I told Dr. Wagner that oral steroids were out of the question until they are sure that he has GVHD. EB and large amounts of steroids (the amount used to fight GVHD) are a horrible combo. We've kept up on applying several steroid creams to his entire body 4 times daily. When we got our med list to go home, I noticed that one of the drugs he's on (Bactrim) has Sulfa in it. Brian is allergic to Sulfa and since allergies can be passed genetically, it made me wonder about Daylon's rash. The medicine is given twice a day on Monday and Tuesday to prevent pneumonia from coming back. The weird thing about his rash is that it comes and goes in strength. It'll be gradually getting better, and then it flares up again. Anyway, the two of these things together, kind of makes me think it's the medicine. Dr. Tolar is going to have Daylon switched tomorrow when he goes to his clinic appointment. I pray that this will cure his nasty rash, and we can rest at ease!

what an angel!

  Alright, so I wrote the above Thursday. I talked to the Nephrologist, using pictures and Dr. Tolar as back up, and he moved the goal weight!!! Daylon is smiling and babbling as I write (note the above pictures)!! The doctor did have one bit of upsetting news though. He said that tomorrow all the Nephrologists will talk about all of their patients and one thing that will come up is Daylon need for a kidney transplant. Since the frequency of dialysis has gone down and Daylon is peeing, they would expect that by now, his pee should be more productive. His creatinine is still 3.7 (should be under .58) and his BUN is 78 (less than 19). Waiting to see what happens after his CSA (immune suppressant drug that hurts the kidneys A LOT) is lowered at Day +100 (2 more days!! Woo-hoo!), is crucial to the decision.
 On a high note, Daylon did AMAZING at physical therapy today. He was evaluated to be in the bottom one percentile for development for his age, but he's making a lot of improvements everyday. He's able to move his right arm on occasion now, on demand. His hand is a work in progress. Today he was cracking us up! The therapist put a ring in his hand and you can tell he wanted to close his hand so bad! He was so angry, yelling at his hand! Such a cutie. Anyway, the goal is to have him sitting independently by Christmas for 6 minutes before he gets too tired. The long term goals seem so, well, long. They think he should be walking in 18 months to 2 years from now. Hhhhha. Oh well. Between BMT (which will cause problems for him over the next year at least), EB, being intubated, dialysis, his nutrition being in the pot and the stroke, he's got a TON of obstacles to over come. The good thing about it is that maybe by the time he walks, the extra fluid in his skull will have absorbed and it won't kill him (bad choice of words) to bonk his head! :) Plus, we all know that Daylon has a habit of beating people's expectations of him!
 The hectic pace of life right now is taking a toll on our sleep schedule and sanity, but we still prefer this to life in the hospital!
Other tid bits of excitement in our life:
  -On Tuesday, the van wouldn't start and I had to call AAA to get it started. On Wednesday the power steering went out and on Thursday Brian took it to the mechanic in St. Louis Park. He actually there right now, picking it up. Turns out it was the power steering pump that was causing us drama.

 - Brian made a DELICIOUS meal for me and the kids. You know, sometimes it's when the little things that make the best presents.

 - So you completely understand this story, let me tell you a little about Caleb. We often joke that Brian "picked" Caleb. He was born 10lbs 3 oz and 23 inches long. He was a big baby, he is a big kid. Although he's a pretty slender kid, he's as strong as an ox, wiry and fast. He LOVES sports and it's particularly because he's not half bad at them. The baseball fan in me can't help but gush about his love for baseball. The kid was born an athlete just like Brian always dreamed his son would be. Alright, you get the picture...on with the story...On Tuesday I took the kids out to the front play ground. A little boy and his dad asked if they could come outside and play with us, and of course, we said "yes". Well, the little boy wanted to play pirates and dragon and his dad offered to be the dragon. The little boy picked up a HUGE stick and yelled I'm gonna get you!" and chased his dad. My kids just kind of stood around, not really sure what to do, since we don't allow them to play with giant sticks (you'll see why shortly). The dad notices our kids lack of involvement, picks up four HUGE sticks, hands them to my kids and tells them, "This is your pirate sword! I'm the dragon and your job as pirates is to try and chase me and kill me by getting me with your sword!". The man then takes off running. With stick sword in hand, Caleb darts after him. The poor man had no idea what was coming. Caleb caught up to him half way around the play ground (I'm getting a bad feeling, at this point), positioned his "sword" like a baseball bat (now I'm standing ) and swung (as I screamed). Let's just say it would have been a home run. The stick hit the man right behind the knees, bring him face down on the ground. I ran, apologizing and lecturing the whole time, over to Caleb and the man. The man was great about it saying, "That's what I asked for, I guess".  I was so embarrassed at the time, but I have to admit (of course, never to Caleb), that I've pictured Caleb choking up on the stick and that man collapsing like a cartoon several times over the past couple days and I can't help to laugh out loud.

-We also went to the Como Zoo for an hour per the doctor's request. It's a free zoo here in Minneapolis and the doctor thought that Daylon should be able to enjoy some outside family fun. We just had to go at the end of the day, when it was less busy, and Daylon stayed covered in his stroller.
Keira's a bit case you couldn't tell :)

Daylon's behind there somewhere!

 I have to throw this last part in...afterwards we had a picnic at Como Park, that lasted for 15 minutes since the mosquitos attacked. Check out Keira's leg. She beat us all, bringing in a mosquito bite total of 36!!!

Thank you for your love, prayers, fasting, comments, cards, emails, texts, phone calls, packages....WE ARE SO GRATEFUL!!! Wishing you a wonderful night! Sweet dreams.
PS- A super big thanks to the wonderful people at COREL for their generous software gifts! We LOVE it!!!! THANK YOU!!! :)


Mom to Many said...

What a full post. Thanks for the update.
About that picture of Daylon all wrung out after dialysis. My mother heart aches for how that must feel for both you and him. I hope things can improve with that soon.

I think I am with you on the stick rule. I have seen what kids can do with sticks and things too. I'll bet that guy had no idea what was coming.

Poor little skeeter bitten lady. Ouch!

Anonymous said...

My son is allergic to some ingredient that is really common in toothpaste.
He gets mouth sores from it. And I know certain ingredients in mouthwash can make the skin slough off in sheets like that too. So, Daylon's problem could be an allergy. I hope you can sleuth it out and it is an allergy an not GVHD.

btw, I think you are an awesome blogger. It is perfectly understandable that you can't update every day. But when you do, your posts are so full of spirit that they are wonderful to read. I love all the pictures you add too. I wish the best for Daylon and his entire family.

A reader from San Diego

craig said...

Oh my goodness. Those before and after pictures of his dialysis are so sad. It's ridiculous. I'm so glad that the dr. was willing to look at those pics and talk to you about it and fixed his dialysis so that he can actually still function afterwards. I'm very upset that it looks like he will need a kidney transplant though. WOW...but Daylon is so strong and he surprises us everyday. If anyone can get thru this Daylon can. He inspires me everyday. I have such a love for him and I don't even know him. Stay strong!!

Take Care,
Amber McLaughlin, CA

sharon kaye said...

I love the pictures of your children. You can tell they are having a great, fun time. We keep praying that Daylon's kidneys will work properly. We are thankful for the improvements he has made. He is darling in the pictures.

Anonymous said...

LOVING that smile Daylon!!!!! Great to see you all out enjoying some special family time together. Praying for those kidneys to start behaving properly.
Love to you all


Linda said...

Hi Jenn: I'll say it again, you take the best pictures. Your family is beautiful. You must be so proud of them all.
So sorry that Daylon is still having an issue with dialysis. Hang in there, it will get better. Daylon will see to that, with a little help from above.
Love and Peace. Leah's Nana

jeanine said...

OKay... the Caleb story is HILARIOUS!

Julia said...


I have read your blog every time you posted since Daylong started treatment, but I have never commented before. I hate that Daylon's mouth hurts that bad. I wanted to throw my two cents in on the Sulfa allergy. My family is allergic to sulfa as well and it makes our mouth slough (is that a word) off just like daylon's is and gives us horrible sores. Maybe that is what is causing it. Hopefully as soon as it is stopped his mouth will start getting better!

Kristyn said...

I finally figurd out why I couldnt I can Yay! Hi Guys its auntie Kristyn and I love you guys. I cant wait to see yo guys. We miss you terribly! Jennifer your the best !! thaks for such wonderful updates. So So so glad you guys are doing well and out of the hospital! give all the kids hugs and kisses for us. See you soon.!! Amen Daylon has made it thru the BMT! yay!

Angelique Ringgold said...

Wow! Lots going on. Glad you all were able to enjoy some family fun at the zoo! I keep marveling at how all our kids have grown in the months we've been here. I think your allergy idea makes a lot of sense. We'll pray that is the culprit and not GVHD. BTW - Bella was switched from CSA to MMF a while ago (CSA was affecting her heard) w/ no adverse affects so hopefully that will help as well.

I heard about the Bella/Daylon connection in Orange! Crazy right?! Laura is the mom of one of Ali's day care buddies back home.

Miss you guys! Hope to see you around soon!

Jan's Blog said...

I'm shedding tears of joy for you.


Oh GOODNESS though before and after dialysis really does say a thousand words!! Its like Hello people wake up here... there is something NOT right!! I feel bad for all the open sores in his mouth!! Hoping its not a fungus and viruses infection!!

That is weird that the rash comes and goes!! I too am praying that its him being allergic to Sulfa!!! I sure hope you FIND OUT SOON!!

I am eager to hear about he is doing after his CSA is lowered!! I am sure the thought of a kidney transplant just makes you nervous!

I am so proud of how good he is doing with physical therapy!! Whoop- Whoop!!! That is such a cute story about him trying to close his hand and getting angery :) so sweet!! He will get there with time!! I have no doubt in Daylon! YES he has A LOT to over come but your right he has a habit of beating people's expectations of him. They didnt even think he would get THIS FAR.... look at Daylon now! BOO- YA !!

The dinner Brain made looks GREAT- GOOD JOB!

What dad doesnt want their son to be a baseball player? Thats all my husband says too ha ha

Oh man I laughed out loud at the story about the man. He really gave your kids sticks and told them to run after him to kill him? Maybe he was like the Uncle instead of the dad lol. I am surprised he didnt know what was coming. Oh that is hilarious! I am sure at the time it wasnt but it sure is now :)
I love all the pictures with the kids! They are so beautiful and LOOK SO MUCH LIKE YOU!! My favorite animal pic is the giraffe- perfect shot!

Boo to mosquito bite.... 36 sure is a lot!!

PS- your not a lazy homemaker.... Your about the BUSIEST person I know!!!

Anonymous said...

our thoughts, love and prayers are with all of you, hugs from barbados xoxoxox