Wednesday, August 4, 2010

Day +41

Warming Daylon up after his dressing change

The last 24 hours have been big ones for Daylon. For those of you parents out there, you know how you brag about how your kid is ten times smarter than any of their peers, or how your son is so fast and athletic that that the scouts will be following him around by his sophomores year of school...and you're not just saying that cause your his parent...everyone says so. OH! and remember how when your daughter was four months old and you passed the 'Marry Poppins' DVD at Target and she said,"Supercalifragilisticexpialidocious"?... Ha, ha! Parents brag about the funniest things! I have one that might top the crazy list: Last night, (drum roll please!) Daylon peed his diaper!!! Woo-hoo! "My son wet himself and it only took 2 weeks." :) Seriously though, this is bid news that his kidneys are starting to work. It was 100g., so decent size. His creatinine was also at an all time low of .8! Yay! Between pee and dialysis, he's is negative in fluids for the first time since he's been in the PICU!!! It's so great when your kids vital organs are working. :)
This morning at 10 minutes to 5, I dropped Brian off at the MSP airport. He's flying home on a business trip (that sounds funny). He'll be gone until Saturday night. It's so pathetic, but I already miss him. I'm kind of jealous too; back to the land of no humidity and ants under a half inch in length. ....Honestly, Minnesota is great! It's super green and beautiful. This humidity just may kill me though. My 1/3 mile walk from the RMH to the hospital or vice versa (which I do 6ish times a day) has started to feel like 2 miles ea. way. Anyway, enough of me griping. Back to the story!
Look at all that wire! MRI's are messy!

So I dropped off Brian and then headed over to the hospital for early morning rounds where they took him off two antibiotics (YAY!), and then an MRI check on hemorrhage and necrosis (dead tissue/brain damage) status. The MRI showed that his body is starting to absorb the bleed! I'm so happy that things have improved for him. The necrosis is still the same, that won't get any smaller because what's done is done. On the bright side, it didn't get any worse either. I still say Daylon will shock us all. Because Daylon's MRI showed signs of improvement, the doctors are ready to start heading towards extabation. There will be several days of little trial runs to see how well he can breathe without the vent. They will also start to wean his sedation to help him to breath easier. The tricky part is that less sedation means wiggling and fighting the tubes which in turn means, open sores and a chance for infection, not to mention the pain associated. They'll need to walk that line between wiggling and unable to breathe from the meds. Daylon has two modes: sleeping and spaz. He'll also go through with drawls from his meds. It'll be a necessary hardship for him. I've starting asking questions because I know that if we could hold and talk to him, he'll do better. This kid was held most of his life before the PICU. He loves to be held.


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I wrote that last night but never posted it because I got caught up in an INSANE dressing change. Dr. Tolar told us that his skin's condition would fluxuate in a rolling hill pattern and the further we got away from transplant, the smaller the hills and the bigger gaps in between them. It get worse initially, then great around 3 weeks, and worse a few weeks after that, etc. Well, we've hit a hill! When I unwrapped him last night there was a HUGE blister that took up his entire left heel, on in his left palm, and two on his right. Like the size that I need to use a seringe so the nurses can count it towards his fluid out put. I think part of the problem is that he's been a wild man, flailing all over and also, since he's down on his weight I think the larger tubifast (picture an open-ended sock that holds the bandages in place) that I switched to when he was bigger a few weeks back, doesn't fit right anymore. When it doesn't fit, it doesn't hold the dressings in place, then they slide down creating friction. I went back down to a smaller size so hopefully I'll have better news on Friday.
His bilirubin was checked today and it's at .7! He's totally within normal range! Things are looking great! I'm so excited to post pictures on Monday night of us cuddling our tubeless babe! Thank you all for checking in on Daylon and caring so much for him! Thanks for the prayers too! We love 'em!

22 comments:

Patrice said...

Still praying her in HOT NC too, where the humidity is also out of control. So glad to hear things are looking up and that the brain damage hadn't worsened. I think he'll surprise us all too. Isn't that crazy about the blisters? Even without transplant, it seems like Jonah has days (sometimes a week) of pretty clear and then BOOM, out of nowhere, he's torn up again. And it doesn't seem there is any rhyme or reason to it. SO weird. Anyway, this isn't about us. :) Just wanted to say that I can kind of feel ya on that one. Love you guys so much. PRAYING!

DynamightyMom said...

I'm so happy to hear all the positives! It is super hot here in Va too. We've been camped out inside everyday and just the tiny walk to the mailbox is killing me so I completely understand! I can't wait to see the pictures!!!

Anonymous said...

So happy to hear this great news! Will continue to pray. I have been following you through Jonahs blog. Like I have said before you guys are my heroes, the reason I don't take things for granted and appreciate the little things. I have a lot of faith and know he is defiantly going to surprise everyone. Like I said will keep praying every night. Sending you guys all my love and support from Columbus Ohio BLANCA. :)

Kristy said...

Wonderful news! I squealed when I saw the facebook post "we have pee!" YAY FOR PEE!!! :) What a tough lil' fella you have and oh how many hearts he has touched! Thank you for sharing this journey and allowing others to pray with you and celebrate with you. Blessings and mama hugs to you. :)

Westover's said...

Yeah! So happy he is doing so well. I'm so excited to see that you can look forward to holding Daylon soon! I can't imagine what that must be like. You are such a great example to me of your faith and hope for Daylon. He is as amazing as you are! I look forward to your post each day. Thanks so much for sharing your story it has made me a better person!
Love, Diane

Greg and Diana Baun said...

How wonderful!!! Thank you for keeping us updated on his big acheivements!!!

Anonymous said...

GOD IS GOOD! I have been anxiously awaiting your post and i have to say it was worth the wait. GOOD Job Daylon, keep PEEING!!!! It is wonderful to hear and feel your optimism. We are friends of Bella's and have been following your family's journey as well. On a personal note, thank you so much for sharing your journey with us. It has been a life changing experience for me and I want to make sure from the bottom of my heart I THANK YOU. Thank you for being a strong woman, wife and mother, for reminding us all to trust in God's plan. Your family is remarkable and have tought me so much. Sometimes when i am alone, I think of Bella and Daylon and imagine what their testimonies will be like a year from now. It brings tears to my eyes. In all honesty my relationship with the Lord has been strained since the unexpected passing of my Dad on CHristmas Eve. I have been angry and have been asking' "why me." But then there came Bella and through Bella came Daylon. These two beautiful babies have made such a difference in so many peoples lives. And just think of all the differences they will continue to make. ANd now i find myself speaking to God thoughout the day. Lord please keep your angels guarding Daylon, lift him in your arms and guide his recovery. WE trust You Lord and we love You. Thanks for showing us that miracles do happen and never leaving our sides. God is good, God is great, thank you Lord for this day. Amen!

Wanda Wilkinson said...

so glad to hear the good news...Peeing is awesome..glad to know that you hopefully can hold him soon==that will make things better for Daylon & mommie.

I follow you through Patrice. Both of you are such great moms...and the humidity is HORRIBLE Here!! I think we hit 100 in temp today & 110 in heat index. Keep up the good work Daylon & we will keep you in prayers. God is Great Wanda

Bella's Blessings said...

Weeeeee! We loooooove Peeeeeeee! Love the post! Hilarious. Nice to see so much sunshine in your words. Since Bella is a total Daylon copycat, we are so excited to hear about pee! Keep up the great work everybody!

Mom to Many said...

What a great report!
I am sooo happy for you! I am so glad he is turning the corner. What a blessing!
Spent the day in the E.R. Our 5 yr old decided to do a Jackie Chan move off of the green electrical box in the yard and broke two bones in his arm. (Missed both growth plates. Whew!)
Good job Daylon!

The McLaughlins said...

YAY!! Good job Daylon. Keep that pee coming. I'm so happy to read your post today. So awesome that he is improving so fast. God is GOOD. And miracles do happen. That is so awesome that he is starting to absorb the blood on his brain and there is no new damage. I have faith that he CAN and WILL make a full recovery. Lots of love to you and your family.

Take Care,
Amber McLaughlin, CA

Anonymous said...

Yay for pee! Awesome God! Praying for your precious boy!
Mary Chinn, Indiana

Jenny said...

Each day I read about how he's doing and the fact that he peed actually made me smile. I hope and pray that he will continue to do well and that he will go home soon.
Much Love Jenny

PS Oh and Mother knows best, keep doing what your doing

Anonymous said...

I my not be the mama, but I do know about the pee pee dance. Waited many a time for this event. So I am dancing with you tonight. Also praying. This is a grand start.

Cannot wait for you to report that "poo poo happened. sg-KS

Rebecca said...

Way to go Daylon!!!!

Keep that pee coming boy.

Annalien said...

Yay for a wet diaper!!! I have been praying for his liver and kidneys for a long time now (and won't stop), but high on my priority list now is his brain. I believe that God will work a miracle there as well. Keep the faith!

Linda said...

So happy with the update. You sound so happy and relieved. This has been quite a roller coaster ride for you but everything will turn out fine. Daylon is a miracle boy and we have been checking his progress daily. Being the first JEB patient is HUGE to us and we are so happy that he is doing so well.
Keep the faith. God Is Good. Love Leah's Nana

Anonymous said...

Praying for you in St. Paul, MN! Go Daylon!!

Mom to Many said...

Thank you Jenn, I am touched. :o)

Anonymous said...

YES!!! So wonderful to hear good news. That little guy is amazing. Can't wait to hear more good news.

Mom to Many said...

Anxiously waiting to hear if there has been another wet diaper. Pleas, please, please.

BRIAN AND BROOKE said...

Yay PEE.....never have liked the word so much till now :) And what AWESOME news about him starting to absorb the blood on his brain!!!! YES...and no new damage....YES YES!! I am so happy for this good news for Daylon and happy for you guys. Daylon so proud of you BIG BOY keep up the good work ... and give us some MORE PEE!