Thursday, October 20, 2011


Content after his day of procedures was over

   I'm not sure if I've mentioned this or not, but Daylon gets sick every morning. Seriously, e-v-e-r-y morning. He throws up for the first 45 mins or so that he's awake. Sometimes more, but never less. Three or four nights a week, the vomiting starts in the middle of the night and goes into the morning with an hour or so of sleep in between.  As he's gotten older and his stomach content is no longer that of a baby's, this has become especially rough. In the morning, while he is sick, he is no mood to play and often cries with sudden screaming. During the day, if he's given anything too sweet (juice, yogurt), meat, veggies or red dye, then he becomes sick again. Am I sick of being sleep deprived and smelling like puke or worse yet, watching my son in misery? Oh yes. But this is his life and to be honest it's a huge step up from where he once was.
   Last week, as the temperatures climbed up to 100F, Daylon's benefits of transplant began to fall. His skin started to tear and slough, his vomiting became projectile, there was blood in his stool and one of my biggest fears, his cry and voice became hoarse. The hoarse cry is a classic JEB thing. It's a sign of the larynx blistering. When Daylon was a baby, his cry was a whisper and we would set our alarm clocks for every 15 minutes so we could check and make sure he wasn't crying. Because the damage from the past, Daylon can't afford to blister in his throat and airway now. In the middle of the night on Friday, he rubbed his eye and caused a corneal abrasion. He kept his eyes closed most of the day Saturday and managed his pain quite well. He did however, continue to throw up through out the day.  On Saturday night, while getting him ready for bed, I accidentally poked him in the eye and caused the eye to get worse and consequently, his pain. I hate that I hurt him. On Sunday he was in pain and cuddled most of the day. Just before dinner he was content enough to sit on the ground so I could drain my pasta (Brian was busy with the kids playing a board game.). Anyway, he picked up a foam sword and because he can't see, poked himself in the other eye causing abrasion #2. He was so miserable the rest of the night. Because he's been pretty healthy lately, I don't even have any pain meds in the house, so he just had to tough it out with Tylenol. It was awful. Over the course of the weekend he also started scratching like MAD! I have no clue why he so much more itchy, but that didn't help the skin situation. He was just plain miserable.
  Monday morning while I was getting the girls up for school, I could hear Daylon start to dry heave. I went in to check on him and he was covered in blood and vomit. Brian came in and we cleaned him and his bedding up. He was breathing really quick shallow breaths and his whole body shook. He didn't have a fever, so I couldn't figure out why he was shaking.
   I will be honest, it does throw me into a bit of an emotional and mental funk when Daylon's JEB symptoms come back. His skin does still fall apart and he still has many signs of EB, but it's the JEB symptoms that freak me out. Once we got over the big scary part of the transplant and it really started to improve his condition, then I've just worried about things like kidney function and malnutrition.  I guess I've just gotten to where I look at him and think that the transplant will keep him safe from JEB and what it brings. I do know that there's a chance it could reverse, but I don't let myself really process that most days and that's how I keep from going insane. The last few days, I can't help but think that. Daylon is 27 months old with a life expectancy of less than 12 months. I am grateful for everyday, but I do get scared some days too.
  Anyway, I called the doctor to see if I could get him in that day and he wanted us to take him to the ER. Given Daylon's history, several different things could be going on, which is their big concern. He was admitted to the hospital, had a chest X-ray, a bowel X-ray, a head CT, blood cultures drawn, a virus culture, urine sample and MRSA check. In other words, he was poked and prodded all the live long day. For the most part, everything came back fine. His white count is high, probably from infection and stress and his bowel X ray shows build up and blockage. More than likely, his GI tract is blistered causing bleeding and slowing in his GI tract. All and all, it's just EB stuff and he probably would have done better at home, but EB is a lesser known disease at CHOC, so they like to error on the side of caution. After he pulled out his second IV in 12 hours, they decided to can the IV antibiotics and go with oral so we can just stick it in his gtube. Since the blood cultures were negative at 36 hours, I was able to convince them to let him go home.
This was written all over the couch in Daylon's room in the Oncology ICU. Needless to say, Daylon does not feel the same way the couch does about the hospital. :)
   We've kept him comfortable with bed meds and an increased doses of hydroxizine (his itch med). He's still puking a super ton and acting out of sorts, but there is about an hour after the pain meds kick in that he's happy and being his silly self. He even crawled for a few minutes last night. At one point, he opened his eyes a tiny slit looking for a toy, so I think there's improvements there.
      A huge thank you to everyone who has offered prayers and service on our behalf! Especially to my mom for driving out to Lake Elsinore last night and staying with my kids today (keeping up with 3 different school schedules and extra curriculum can be a total pain!) so Brian could work! You're a lifesaver Mom! Thanks!!
  Oh! I've decided to post a family video of Daylon when he was first born for EB awareness week. In my opinion, it's a pretty powerful video. I hope that all of the blog readers will take the time next week and share what they know of EB with one person (if you feel like more, go for it!). Let's get the world talking about EB next week! Check back next week for the video and EB awareness post! =D


Anonymous said...

I talked to your Mom lastnight and she told us about Daylon. It breaks our hearts to see this little Superman have to go thru so much. He is really a Trooper and so are you and Brian. Your Mom is such a wonderful, caring, loving and such a beautiful lady. We Love her so much. We Love all of your wonderful family. Our thoughts and prayers are with Daylon and all of you at this difficult time. If there is anything we can do to help, please let us know.
We miss all of you and the kiddos. Sure miss seeing them, it has been awhile. Hope to see all of you real soon. Hang in there Daylon, Jen, Brian and the rest of your family. You guys are truly an eternal and loving family. Give the kiddos a big hug and kiss for us and let them know we love them.

All Our Love;
Myrna & Dwight

Michelle said...

So sorry to hear about all of this! I think of you guys all the time. I'm amazed that even when things get rough (rougher is probably more accurate?) you always have a positive attitude and point out what you're grateful for. You're a superstar! :)

Bella's Blessings said...

Hi guys! Oh my, I am so sorry to hear the gory details you guys are dealing with each and every day. You and Brian are AMAZING. WE LOVE YOU.

Mom to Many said...

Oh Jen... You do such a great job. You must need to just walk away for a minute sometimes.
I am thinking about you and will be praying.


Anonymous said...

Jennifer and Brian you and your family are always in my prayers.
Love you, Susan Hendrickson

Gilda said...

Sweet Daylon keeping him in my prayers.