Thursday, September 16, 2010

Day + 83

I had my little pow-wow with Dr. Tolar. Let me bring you up to speed.

GVHD: There is still a chance he has it. So far, Dr. Tolar says he is leaning away from GHV while Dr. Wagner thinks it is. Having GVHD requires a really large amount of drugs including steroids. After reading about Sam, I want to steer clear of those meds! Dr. Tolar is the primary doctor so, he will ultimately make the final call. Scratch that. Brian and I will make the final call...but he'll advise us. Please pray this rash will go away. Daylon can't afford to add GVHD to the list of ailments.

Nutrition: Daylon has been gagging at anything more than 5ml an hour, so his feeds have been off or near off for over a week. His nutritional needs are no where close to being met for a regular 14 month old, more or less an EB 14 month old.
   Culprits
    -The x-ray shows that the 'j' portion of the g/j tube is not in his jejunum like it should be. It would require yet another procedure to fix.
    - He has started a special formula for kids with renal failure and it could be that his tummy is bothered by it.
    - Dr. Wagner wonders if it's GVHD in his stomach, which would go along with all the diarrhea (yep, I went there! )
    -It's also thought to be mucositis still bothering his stomach. Both Tolar and Wagner wonder if there is residual effect since he had problems to begin with (from being JEB) and things may take longer to heal. He is still has occasional bleeding from his g-tube.
     - Withdrawl is still on the table as well

pick a problem....any problem! You're guess is as good as ours! I just need them to figure it out quick before his lack of nutrition becomes a real problem. Oh, and TPN (IV nutrition) is not a first choice since he has renal failure and therefore, still considered to have VOD (it harms the liver).

Dialysis: I love dialysis. I hate dialysis. We can't leave the hospital until Daylon finishes 2 rounds at the Mayo building (which come to find out is NOT the same Mayo building everyone talks about! The REAL one is in Rochester, MN. Thank goodness. ). He failed the first two and has never been back. Sunday was his scheduled day off, Mon. he had off for bad blood pressure, but good labs, Tues they just cleaned his blood (in his room), and today he had off. It's great to have so much time off, but that means no trials too. Hmmm. Toughie. His BUN and Creatinine are high and all over the place, but since he's on dialysis the docs say you really can't count it. Potassium, phosphorus, magnesium are all good, so that's what counts. His weight is staying under control too.

Neurologically: Dr. Tolar had the best neurologist he knows look at the MRI. The thought is that with time, the fluid should resolve. It will take years though, so in the meantime, we need to be extra careful to help him prevent falls or injuries. He said that if he hits his head or is in a car accident, etc. then we need to take him to the ER ASAP so they can drain the fluid before it causes permanent damage. This will be especially challenging since he'll be learning to walk and be a toddler in that time and well, kid = klutz. Brian and I are putting are heads together to come up with a brilliant plan. If you have a suggestion, we'll take it!

Length in Stay: Dr. Tolar says that we're still on tract to go home in December! Hallelujah! I was worried that we would have to move here for a second! He said that he will always be Daylon's doctor and that he will help the doctors back home understand EB BMT and he will oversee Daylon's care. That's a relief. California here we come!....in 90-ish days. :) Interesting factoid for you: if Daylon had had a smooth transplant and had started chemo when we were originally scheduled, we would be leaving this weekend. Sept. 18th was going to be his Day+100. Now Oct. 2nd (Aunt Michelle's birthday!) is, but it doesn't really matter as far as going home is concerned.

Mood: Since Friday Daylon was fussy, moaning constantly, fighting sleep, thrashing like mad and no one could figure out why. Tolar and Wagner continued to check on him and run tests but couldn't come up with anything. It was alarming really. All I could do was hold him and try to comfort him. He was nothing at all like the kid he had become again. They ended up going back down on his Methadone and Adavant to try to help, in case it was withdrawl. Well, within a half of a day there was improvement! He was holding up his head again and willing to play with toys. He even was babbling by the end of the night

 Today he was much more alert and energetic. He finally got to come home again on pass and he was so happy at home. He was laughing and talking. And! Ladies and Gentleman! I am thrilled to announce: He got his ROAR back!! He growls and roars all the time now! I love it! When he wants my attention he growls, "MOM!" It's so deep and adorable. I think he was in pain from his tummy or whatever and needed the pain meds, not that he was having withdrawl. If my stomach were bleeding and the bottoms of my feet torn up, I would want meds too. The thing is, he came here on pain meds so he probably won't be able to go down to nothing.

  Brian and I were talking tonight about how much his skin has changed. It can still tear pretty easy, but it's holding up so well. Today when we put on his onesie the fabric touched his elbow for a moment. I held my breath and went in for a look and to my surprise, found nothing. Not even a red mark. I'm shocked. Hours later. I'm shocked.
  Brian and I feel so blessed to have such wonderful friends and family supporting us through this journey. Thank you all for taking time out of your day to check in on Daylon and our family. It means so much to us. Thank you for your prayers. WE FEEL THEM! :)Sweet dreams.

15 comments:

Kim M said...

I'm so excited - I've been away from a computer while on vacation. Checking in on Daylon is part of my morning routine - that way I know how to be praying for him during the day.

2 statements bring smiles of happiness and praise to God: "He'll be a toddler and learning to walk" and "He got his roar back!". Seems that not so long ago, we weren't so sure he was going to make it through transplant or survive EB, now look at him!!! We were wondering if he would be the same kid coming out of it, listen to him now!!! Thanking God that you see him returning to you.

I'll continue to pray for him and the rest of the family. Keep strong Mom and Dad, you can do this!!! God is there along side Daylon and you, I'm praying for continued wisdom for decisions regarding his care/meds, etc.

Kim M
Waterford, MI

Pati @ A Crafty Escape said...

The fact that he got his ROAR back is all you needed to tell us, praise the Lord!

Aviles Family said...

I agree with Pati, that was the best news!
I can't think of any brilliant ideas, but I will pray for you guys that you will think of some!
Wow, home by Christmas? That's great! I will pray that things go smoothly so that that can happen.
Think about you all the time.
Love from TEXAS! :)

Anonymous said...

Go Daylon!!! You keep up that roar gorgeous guy :0)

Shana (Australia)

Anonymous said...

You ROAR Daylon!!!! God bless you as always and God give your wonderful mommy and daddy strength and courage to continue their fight for you.
We are out here praying for you every day and sending good strong positive thoughts. Believe this....you and your family have greatly improved my life.
God bless you all. xo

Great Auntie Marla said...

Praise the Lord! God is good. Love and miss you!

Kim K. said...

Could they put a shunt in or something to help relieve the pressure should he fall? Not even sure if a shunt is for that - I've just heard of kids having shunts.

I check in every morning to see how Daylon is doing. He is such a strong little boy! So glad he got his roar back!

Mom to Many said...

I am so pleased by Daylon's improvements.
I am so happy to hear that he is "roaring" again. What a precious little boy. I am so happy that your family has been given the gift of time with him. What a blessing.
My heart is touched.

<3 Cheryl

Sara said...

His skin looks great!
Good news here and at Bella's? Perfect day for me!

BRIAN AND BROOKE said...

YES! I know how long you have waited and wished you could hear his ROAR! OH I am just SO HAPPY you were able to hear his sweet voice roar for you and to even SAY..... MOM! You should video that I would LOVE to HEAR it!!

Wow, just think you could be back in Cali in Dec! I hope all of those issues get resolved and the doctors and find out for once and for all if he has GVHD or not. That is a big thing! Will be Praying that the rash will GO AWAY!!

It's going to be hard not to make sure he EVER hits his head! Especially with learning how to walk and gosh just being a boy! That is a tough one to figure out! Too bad there is no such thing as a bubble wrapped house :)

I also think that its AWESOME that Dr Tolar is willing to work with the Doctors in Cali and help them with Daylon!! What a great DOCTOR!

The Hym Count your blessings comes to my mind!!!

Go DAYLON... you sweetie...so proud of you!

sharon kaye said...

We are thankful for Daylon's progress and continue to pray that he will improve and his body will work properly.

Annalien said...

So glad he is feeling better again! I pray that the rash will resolve and that he will keep on getting better each day. God bless!

Linda said...

So so glad that Daylon got his Roar back. I am thrilled that he is doing so well. You guys must be on cloud nine. Prayers really do work and Daylon is living proof.
Take care and keep the Faith. Love and Peace. Love Leah's Nana

p.s. So happy that there is now hope for the JEB community out there.

theitaliandyes said...

We are so happy to hear good news! Your family is so brave. You bring hope to everyone with EB! Like this little guy, that I just saw on another blog, that needs urgent prayers!
http://servinghischildreninuganda.blogspot.com/2010/09/meet-baby-robert-robert-is-one-month.html
Spread the word if you can!

Emily said...

He got his ROAR back!! That's awesome!! I can't believe this is the same child that once had an DNR.. I mean seriously, he's incredible. =)