Friday, December 17, 2010

Day +178 - update from the PICU

 Good Evening All,
 It's night four on the PICU (this time) and it looks to be our last night here! Let me explain the my spunky son's last 36 hours to you.
  Okay, so yesterday morning was my last post. Life was dramatic and crazy and then at 1:30pm Daylon threw up older blood tinged with fresh blood (gross, I know. Sorry). That was quite the hefty vomit, but something pretty great happened. He stopped throwing up! His blood pressure still soared through the roof and since he wasn't getting sick, they started Daylon on a really  hardy dose of Amlodipine (the blood pressure med that he was on at home which is stronger than the IV meds) . Towards the end of dialysis Daylon became a wild man. He was thrashing, jerking, rubbing, moaning, and basically beating himself to shreds. This continued ALL NIGHT LONG. He seriously did not sleep. He would rub and writhe and then start to look like he calming down to go to sleep when, presto! he's awake and jerking spastically (is that a word?) all over again. The PICU doctors were in and out all night. At around 1 am his oxygen saturation was at 80% so he started up on a blow-by of oxygen to keep his numbers happy. At 2am? Fever of 102.8F.  By 7am he had had a chest x-ray, the neurosurgeons visited and a request for a neurology consult had been made, oh, and one other thing...his blood pressure was normal! He was still maxed out on his pressure meds, but hey! it's being controlled! The PICU docs were afraid that all of the crazy movement was seizure related. I wasn't convinced. I just didn't have that feeling in my gut that we were moving in the right direction.  He was uncomfortable (miserable may be a better word), but he looked more itchy than seizing to me. Sometimes I get the feeling that part of his problems are medicine related. It's hard to keep track of all of their side effects. He goes on a med to fix one problem and it creates another. Am I making sense? Anyway, I asked the BMT doctors to take him off the dilaudid drip and put him on another pain med. It didn't make any sense why that should be a problem because he was on it for 4 months early after transplant, but I just had a gnawing feeling that it needed to go. Well, they switched it and his itching went away! Come to find out that although Dilaudid is the med they give you when Morphine makes you itch, they're from the same family of drugs. Very few people feel the itchy side effect, but apparently Daylon is one of them! I assume that we didn't notice in the past since he was intubated initially, and then so weak from being intubated that he couldn't scratch! This experience was such a testimony to me that our prayers are heard and answered. Daylon is definitely being looked out for from above.
   He has continued to calm down throughout the day which has helped his blood pressure numbers. He is currently being weaned down on the drip (from a 7 to 3.5) and is at 105/65 (goal is under 110).  He has thrown up twice this evening at the end of a coughing fit. Soooo much better than the 48 times recorded two days ago!
  At 5:20 the BMT doctors came in again to check on Daylon and they were SHOCKED by his improvement! We chatted for a while and then came the news. 
  Dr. Stephanski (looking at the clock)- "Daylon has 24 hours to turn this all completely around or else you two can not fly home on Monday with your family. We'll be back tomorrow at 5:30pm"
  I'm not stupid. I knew this was coming. My first and most important desire is to have Daylon be healthy. The second, is to go home.
 I really want to be on that plane.
 Alright. So, here are the things he needs to accomplish:
 -be off oxygen
 -have drain removed
 -be off nausea drip
 -be off pain killer drip
 -be off blood pressure drip
 -no fever
 -all meds switched from IV over to oral (would like to see)
 -acting "normal" (neurological function returned)
 -no positive cultures

 If I know one thing about my son, it's that he never gives up. He's the type of person that if you tell him he can't, he'll tell you, "watch me". I'm sure I'll be irked by this attribute 13 years from now, but right now, I love it...and I'm countin' on it!
  Since 5:30 tonight, so much has happened! About five minutes after they left, his oxygen saturation went to 100% and so he was lowered from the oxygen every so while or so until he was off it!

He has also proven to be well enough to have his drain pulled and the hole stitched up. They said that it would be painful but not so painful that they have to take him down to the OR. Guess what?  Daylon didn't make a peep. The most he did was scrunch up his eyes. Such a toughie. I know I'm bragging, but come on...I'm a mom. We're supposed to do that, right?! :)

  I'm so, so, so thankful his fever is gone and nothing has come back positive for infection or bacteria. Three of his meds have been switched to oral form and he hasn't thrown up! Woo-hoo! Like I said, he's down on his blood pressure med and will hopefully be off by morning.

  Neurologically speaking, he's completely back to "normal" (I kinda hate that word).   He sat in bed for about 30 minutes playing, he's been rolling all around his crib and talking away to anyone who would listen. I actually don't remember him babbling post transplant . Don't get me wrong, he's plenty noisy, but it's mostly just yelling. He was actually trying to copy the nurse and I tonight. I have to admit, it's a pretty great feeling! The nurse said once tonight, "Yeah, yeah, yeah" and Daylon repeated the whole thing back! We just stood there with our mouths open and a "Did you hear that!?" look on our faces. I hope that tomorrow morning we can start going down on the pain med, and then the nausea. It's all up to how he feels though, so we'll see. I know there's only a slight chance that Daylon and I will make it home as scheduled, but it's great to see him try. I haven't given up on him yet, so now won't be any different.

  I believe in Christmas miracles.

  Do you?

All that rubbing and scratching left with two corneal abrasions...again


Bella's Blessings said...

Wow. What a ROLLER COASTER! You are amazing. I believe in Christmas miracles! Please say hi to Sam for me next time you see him, will you? Thanks! Say hi to anyone up there in the PICU that knew Bella. We'll be back in Feb. for Renee's wedding. Look forward to seeing YOU back HERE in CA soon enough!

Anonymous said...

I believe in miracles! We pray for Daylon's continued improvement and blessings for all of you!

Jan's Blog said...

I believe your Christmas Miracle in well in the works, and that Daylon and you are on your way home. I'll be sending prayers for all he needs and thanks for all he's been given. One of his smiles can make my day. I'm beaming right now!

The McLaughlins said...

WOW Daylon is SUPERMAN!!! He is so AMAZING! Daylon, you inspire me everyday with your strength and will power. Miracles DO happen and you are living proof. Stay strong little man. You continue to strengthen my testimony of the power of Prayer.

Jen and Brian, I really hope that Daylon can improve enough by the 20th so that you can ALL go home as a family for Christmas. What a GREAT Christmas present that will be. Daylon is such an awesome kid that I wouldn't be surprised to read tomorrow that he is completely ready to go!

Thanks for the great update tonight Jen. You have definitely made my day. I have been so worried about Daylon but, once again, he has amazed me with his ability to just turn things around and fight like heck! Great Job Daylon!

Lots of love and prayers still coming your way,
Amber McLaughlin, CA

Anonymous said...

Oh, I am very glad for you! I keep praying that Daylon keeps getting better! His skin looks very good to me, especially after such a heavy day and night.
Have some rest for you, it's been too exhausting for you.

Good luck!

Kim M said...

I DO believe in miracles and absolutely LOVE Christmas miracles! Don't you absolutely love it when God shows Himself and you see His mighty hand at work??!! You do have an amazing son who continues to brighten my day.

I'll be praying along with you that the whole family can travel home together.


Praying in Waterford, MI
Kim M

Gilda said...

Absolutely, This time of year is one a great one because of the birth of our Savior. And he is showing you the way to go with Daylon and his health. My heart is full of joy to see Daylon improving, because it was just aching for you two. We love you all and will continue to pray for his recovery!

Anonymous said...

Even with your large family, you manage to give Daylon 200% and then some. Clearly, you and your husband are a very able team. You are amazing and strong and clearly Daylon has inherited those gifts. The photos speak volumes and he looks truly amazing and a lot less swollen (the fluid removal? or something). He has light in his eyes. He's remarkable. No adult would be showing the function he has- after the surgery he had and the rollercoaster of illness he faced afterwards (let alone the 48 episodes where he threw up). Clearly, a parent's intuition is sometimes worth as much as a medical degree (not to negate the brilliant minds at work). It clearly takes a village in the PICU. Daylon is a beautiful, strong boy.

Thank you for sharing his story.

Love from CT and NY.

Anonymous said...

OK Daylon - it i stimne to show the doctor and nurses what a strong guy you are! So happy to see the awesome improvement over the past few days!

We will continue to pray for you and all your family! Stay strong!

Tina in NJ
Bella's friend

Anonymous said...

Ok Daylon you little Superman, you are so strong and so amazing. Keep up the good work and progress so you can come home to CA for Christmas. You have so much determination and your parents, all of us and your Heavenly Father Love You. You are such an inspiration to all. Christmas Miracles do happen and we beleive this will be a Christmas Miracle for you and all of us.
Jen & Brian we were so happy to see this post and to see that Daylon is doing better. Stay Strong and hopefully you will all be able to come back home for Christmas together. Can't wait to see you and the kids. Keep the Faith,
Hang in there. Baby Daylon Fight, Fight, Fight.
We have been so worried about Baby Daylon, Jen you have made our Day with this update. All the United prayers have been answered so far. We keep praying for Baby Daylon and all of you to have strength, comfort and love. Jen & Brian Keep Up the Good Work, you are doing an amazing job with your children. You are in our thoughts and prayers.
All Our Love;
Myrna & Dwight CA

Anonymous said...

Daylon is amazing! He's been through so much and to see him sitting up in his bed looking so good is so exciting to see! I pray that things continue to get better and I hope that you can all be home for Christmas.
Go Daylon!!!!
Shelly S. in MN

TinaZCA said...

My mom and I will be at your mom's house on the 23rd. I just KNOW we'll see YOU AND DAYLON there, with everyone else! God Bless you all as we continue to pray for improvement in Daylon's health and comfort. Have a great flight ;-)

Love, Tina

Amy said...

All day yesterday I worried about that little Superman. I'm so happy to see this post and all the improvements he is making. I'm keeping my fingers crossed that you will be on that plane on Monday and on your way to the greatest Christmas present of all....home with your little boy.

Jess Edling said...

Daylon & I have something in common: we are both allergic to Dilaudid! I didn't know they were giving him that stuff. It is aaaawful. Oh, the itchy. At least the poor kid didn't break out into hives like I did. :/

AMAZING! I can't believe how well he is doing since we talked yesterday! Seriously, someone said he was Superman + an X-man and that is totally true! I have lots of faith that you will be getting off that plane Monday with Brian & all the kids. I WILL see you Thursday! Love you!

Greg and Diana said...

How wonderful!!! We are continuing to pray for Daylon and your family, and we truly do believe in Christmas miracles!! You'll be home soon, and there are a lot of anxious people down here waiting for it!! I know we've never met Daylon, but our daughter along with praying that "Daylon's skin will heal" is constantly asking when he's coming home...I love that children have such a black and white view of the world - she truly believes that when he comes home he'll be better and she can play with him (her little brother is close to Daylon's age). I tell her that someday he WILL be all better, and that she can meet him and play with him. She can't wait =) Good luck, and stay strong!!

Kristyn said...

God ....please help Daylon to be heathly enough to come home to his family this christmas . We miss him so much ! AMEN!

Anonymous said...

Wow-God is good! your post brought tears of joy. I do believe in Christmas thanks to Daylon. I pray that he continues to improve and his health continues to amaze everyone. Love the pics of Daylon sitting up and playing, especially the ones where he is laughing. thanks for sharing. Praying for Daylon healthy recovery and restful weekend for you all.

Peace & Love,
The Davidson's

P.S.: Daylon's skin looks really good, even with the hives (-:

theartfulgardener said...

Go Daylon! I believe in you, and in Christmas miracles! :)

Anonymous said...

Such a wonderful post!And so exciting! Instead of God giving doctors the wisdom they needed, He gave it to YOU! How awesome is that??
God just laughs when docs are shocked by Daylon's turn-around. He is still in the miracle performing business!

Anonymous said...

Wonderful news! So sorry he had to suffer through all of that itching, but great to see him turning the corner! Christmas can be celebrated whenever you get home, nobody knows the real birthday of Jesus, so no matter what you'll be home for Christmas! I just spent a wonderful Christmas with my family last weekend. Thoughts and prayers are with all of you!
~Sarina from Salt Lake City, UT

Carla Spradlin said...

I believe in miracles! If anyone can do it, Daylon will. He is such a little toughie. Merry Christmas to your family, give Daylon an extra hug from all of us that are out here cheering him on.

Anonymous said...

I do believe in Christmas miracles! I am praying for Daylon and your family. I found him through following Bella's blog, whom I found through Tripp's blog. Ya'll are all amazingly strong and faithful,
shirlyn from louisiana

sharon kaye said...

We all believe in miracles so hang in there.
I love that you continue to share with the doctors when you have a "gut feeling". I love when they listen to you. You are blessed to have the spirit guiding you in helping Daylon so he can heal.

Our prayers continue for all of you and especially Daylon.

Anonymous said...

Daylon is truly amazing. Go Daylon Go! You all are in my thoughts and prayers. Merry Christmas to you.

Bella's Grandma Carolyn

crsleigh said...

I will continue to pray that Daylon will get better and better. I know the thought of missing your flight is tough to bear. If for some reason our prayers are not answered before Christmas (God sometimes works with a different timeline than we'd like),it is my sincere wish that you will enjoy MANY Christmas' with him because he has the best care possible this year. His health and recovery is the gift I am praying for this year.
Merry Christmas to you all!

Mom to Many said...

I know so much can change. I believe he can do it. I am so hopeful for you. I hope hope you can catch that plane and move your lives back to California. Being near your family and ward will be such a good thing. I am sure you will have much adjusting to do also, but you can do it.

I will pray for good outcomes on all of the things on the list.

I know you have written your blog for your family to keep them up to date, but I have become attached to your family because of it.

:o) Cheryl

Emily said...

I most definitely believe in Christmas miracles -especially with this kid!!!

Lisa said...

Hoping Daylon is continuing to improve...hoping to hear good Christmas news!