Monday, July 26, 2010

Day +32: Moving forward

Erik Hendrickson (I used to babysit him!) is serving his mission out here and stopped by for a visit! It was so sweet! He's so grown up now!
Today was better!! Daylon hasn't seized since late Sat. night, his "soft spot" is flat and his eyes are focused. All good signs pointing in no increase in size of his brain hemorrhage. On to level two of the danger zone! Yay! This is such a HUGE sigh of relief! I can't even tell you how excited I am. I had faith he would make it through (although I had to keep reminding myself of every spiritual confirmation I've had that we should be here), but now I have hope. These are two very different things and I'm learning that more and more. I'm smiling today. I like being happy. I know he's still "very critical and can turn at any moment", as the doctors put it, but I've been able to be self indulgent with my time today and do things like visit the ladies room, and come back without finding out something horrific has happened. His bilirubin and creatinine levels are down today, which is really surprising, but we'll take it! His weight is down to 13.8 (it was the same yesterday), so that's a good sign that his VOD, and therefore his kidneys are getting better. Dr. Wagner informed me that the body won't let the weight off if they weren't improving. Woo-hoo! The bleeding from his g-tube site has stopped and there isn't much blood in his stomach now either. They may even start up his feeds again...although he will be back to TPN (IV nutrition). His temp. is still all over the place. He would be 93F for an hour and we'd have to cover him up and then it would jump to 101F and hurry and uncover him. This is so weird. Both Dr. Tolar and Dr. Wagner have been coming into visit him and the only thing they think it could possibly be is the blood sitting too close to a spot on the brain that controls your body's temp. The attending Dr.s switched today, which meant a morning of trying to convince the new doc. that all the sedatives Daylon was on were needed. It was a rough battle, but we won. He's on enough sedatives to knock a large adult into a coma, but he's up and jerking within 30 mins. of dialysis. The problem is of course, wounds and infection, but pulling the meds off so quickly can trigger a seizure. Plus, once they loose the sedative on Daylon, it's gone for hours. It takes them soooo long to get him under control! Once he woke up this morning, and saw him in action, they joined our side with little persuasion. :)
When Dr. Wagner came in he told me that he would have never dreamed it would be this bad. Daylon is his first patient (not just EB) to ever have a brain hemorrhage. He said he designed the EB BMT chemo to fit an infant and the Busulfan (chemo drug) has caused both Daylon and Bella to get VOD (which inturn causes almost every other problem he has), so he thinks he may have to reevaluate the dosing. It's nice to know that in a way, they're helping other infants coming through. He's never had an EB patient on defibrotide (b/c no others had VOD) so he's not sure if the hemorrhage is more likely with EB or not. I think it's a fluke.
So, the long and the short of it is, Daylon is about the same as yesterday. He's not any worse and I like that. I'm trying to think of this stuff as a bump in the road. The road is a bit bumpy, but the road is still there and he's walkin it. Thank you for all of your prayers on Daylon's and our family's behalf. Not only have the complications stopped piling up, but Brian and I feel comfort and a sense of peace that we've desperately needed. All of your comments were so touching to us...they made me cry!...good tears, though! Thank you, again! In the words of Dr. Sumani, the PICU attending, "God is good and we'll take this one day at a time".


Michelle said...

Jen, I've been checking all day for an update and am glad you have some positive news to report. We'll keep praying and hoping and believing! Love you all!


Anonymous said...

I'm so glad to hear things are stable. Stable is good. He can take as much time as he needs in "stable". We are praying. I pray constantly through out the day. I fear that one of these days someone is going to ask me a question and I will answer with "Holy Father...".

Your son has changed my life. I am a better person for him and a better mother. I have made so many promises for his health that I am a better person. I cherish every moment I spend with my son. I have gotten closer to God too. I am not sure my words do justice to the change I have undergone.

And...well I have never met you...Your son is an angel.

Mom to Many said...

Isn't it crazy to see these kids we tended grow up so quick? One of my sunbeams got married recently.

I am so glad that you found some peace and comfort. You deserve it.
You are being carried. :o)
I had a good day today. Spent the day at a genealogy conference. I got my cup filled.
I am off to bed.
Sweet dreams,


The McLaughlins said...

Oh Jen this post made my day!! I think about Daylon and Bella everyday wondering how they are doing and praying that everything is alright. Thank you for your updates. Your family have touched not only my life but the lives of my husband and the rest of my family as well. And we are all better for it. Be strong! I pray that he only continues to improve from here.

Take Care,

Amber McLaughlin, CA

sharon kaye said...

So glad things are looking better than yesterday. I'm so glad Elder Hendrickson visited. What a treat!!!

La Familia! said...

Please remember you are such a strong woman! I am in awe of you! You a amazing faithful woman of our Heavenly Father and you are an amazing mother... It is wonderful blessing to have this gospel... We are always praying for you and your little boy and your family. You might not realize it but you are such an amazing example to me....may the Lord always bless you!
The millers

Elle's family said...

Your child is a miracle and never forget that!! God is good and always remember that he will never let us go through anything that we can not handle. That is something that keeps me going everyday. I pray for your family and Daylon to have peace and to be able to cope in these difficult times. Times are tough here too with baby Elle and if I can ask you if you can find the time to pray for our little girl as well. May angels hold his hands and yours!

Annalien said...

I cry everytime I read here, whether it is good news or bad, and today sounds to me like good. I believe that God is carrying you all. I pray for Daylon and you all constantly - even when I wake at night. God bless and keep you.

Linda said...

So happy with this update. I am so happy that you guys are feeling some peace right now. Boy do you guys need that.
I pray for Daylon and Bella everyday. Thank you for being the pioneer families with this procedure. In the future maybe these EB children will have a much easier time when they go through with BMT. Thanks again and hang in there. God Is Good All The Time. Love Leah's Nana

Aviles Family said...

I am so happy that Daylon has stayed the same and not worse. I cry everytime I read your posts too, good or bad. You make me want to be a better mom and a better person. Thank you for that!
I am so jealous you got to see Eric! I love that kid! I'm glad he was able to stop by and visit you guys. If you see him again, tell him Hi from me! Looking forward to your next post!

Marybeth said...

Even the slightest bits of "good" news is great news.. So happy to feel your happiness. Stay strong.... stay positive... We are with you and praying for Daylon's recovery God Speed!!!
Hang in there.. HUGS
Marybeth & Sam

Anonymous said...

I am thrilled there is some good news for Daylon. Keeping Daylon in my prayers as always.

Denise WI

The Jones Family said...

I read your updates daily and put your son's name in the Mesa temple whenever I attend. It was fun to see Elder Hendrickson's picture. I remember him as a little boy. His mom was always smiling and so sweet. It's so great to know that he is serving a mission. You are so strong and such an example to all in how you are dealing with this trial in your life. May Heavenly Father keep blessing you. Thanks for sharing your courage. :-D


So happy to hear your spirits are higher today and that your both feeling some peace!! You need that!! What a relief that he is coming down on the danger zone...and that he is stable.....we are all so excited to hear that !!
Your courage and and strength is amazing and I am so happy to know you and your family. If we all could be like you. Keep the faith keep being positive.
Daylon you can pull through .... you can do this!! Keep fighting, your not alone...we are all fighting with you!!!