Saturday, June 30, 2012

Skin Deep

It started with an ear infection that couldnt be treated with his regular antibiotics. So we cultured it...good ole MRSA. Bactrim was prescribed to treat it, another antibiotic. One Kai hadnt taken before, but he hasnt been on many.

The days go by. The ear seems to be oozing less. Day 11 he gets a runny nose and watery eyes, its the summer here and pollen and allergens are all over the place, so I just give him so Benadryl. Then Claritin. The Nasonex...nothing seemed to clear it up. He was really restless that night, so he slept in bed with Daddy and I.

By morning he had a rash on his back and his eyes were swollen shut and felt a little warm. I thought maybe some viral thing, but sent him to the pedi to make sure. This was Day 12, but I didnt give him his medicine that morning...


Our Pedi said it was an allergic reaction to the Bactrim and to stop taking it and prescribed an antihistamine.

Six hours later we were in the ER at Texas Children's.

This was obviously a little more serious than allergic reaction, this was a little more than Skin Deep...

The first diagnosis was Serum syndrome due to the 3 different antibiotics he had been on over the past month. Then Stevens Johnson Syndrome was mentioned, but he did not have any blisters or lesions on any of his mucous membranes, so we stuck with serum syndrome but they were going to keep him overnight for observation.

That was a good call because an hour later he had blisters in his mouth. His diagnosis was now Stevens Johnson syndrome and he would be staying in the hospital for a few days, just until the swelling subsided...

The next day...


The 2nd two pictures he actually looked better than the first because the swelling had gone down.

But that night, the 'syndrome' must have kicked into high gear. He swelled back up and started having respiratory distress. His airway was swelling and he was having stridor(very hoarse, noisy breathing), and was screaming trying to climb out of the crib like his skin was on fire. An RRT(rapid response team)was called and he was quickly assessed and taken from the 15th floor to PICU...

He was taken into the OR to be nasally intubated so that they could suture the breathing tube to his septum because his skin was blistering and sloughing off at an alarming amount. The PICU is where we would spend our next 2 weeks.

Taken right after intubation from the OR

This is all I can write for now. This is a hard story to relive. Even though we are still on this journey and this was only 2-3 weeks ago, it all still feels so surreal. I keep looking at him now wondering did this nightmare really just happen to us? Did my beautiful baby boy really just endure all of this? I ask myself these things as I sit with him this afternoon making googly eyes at him and him laughing hysterically...

I will continue this story as I can, as the little man is taking up much of my day now :)

But I do want to again thank everyone for everything. I have never seen such an outpouring of love and prayer and gifts for a child, and I thank you. Kai is very special to us and apparently to a whole lot of other people. So, thank you.


  1. I've been reading updates on FB and praying for Kai...thank the Lord he's doing better...

  2. HE is important to looooots of people, and SO ARE YOU!! We love you all so much Julie, and I am so relieved that Bear is finally getting well. HUGS & Prayers to all of you!!

  3. Aaahhh.... I relive it too. I am sitting here bawling just reading this. I look at the pics you have of him just days before and I think " he didn't know what was comen, and neither did you guys". Ahhh... So heart wrenching. Continued prayers. We love him so much!

  4. He is so loved. I have no idea how one little boy, one little face can jump out of a computer screen and capture our hearts but he has. I am so overjoyed that he is ok, and that you get to see his laughs and sweet eyes again! I am sure all of this experience is something that you will have to work through as his mother, through out your life time to come to terms with what you all had to endure, but I know it will all come together and be redeemed. Love to Kai!

  5. Mama Bear, I know this is so hard to write, so hard to relive, BUT you are helping so many people to understand that no medication comes without risks. You are helping them to see the signs of SJS. You are a strong, strong mama to a very strong little boy. You are both so loves. Hugs!

  6. Thank you for sharing yours and Kai's story!!! I've already passed it on to some mamas and I also downloaded the Epocrates app you wrote about on FB-- your story and journey is going to save another person's life at some point! We've been praying for sweet Kai every day. Hugs and more prayers to you all!

  7. Julie, you'll remember these dates so well. It's been over 2 years since we got "the talk" from Micah's PICU doc, and I remember that time like it was yesterday.
    When our precious little ones are faced with a battle as serious as TEN (or TSS, in Micah's case), they fight... and they fight hard. Some of our friends have not been so fortunate as you and I.
    Your life will be impacted by this battle that you and Kai have fought. The experience I had with Micah made me a better mom and friend. I'm guessing that there will be some hard days for you when you go back to work, Julie. Please give yourself grace.
    I am SO THANKFUL that your little guy is shining his smile to you!

  8. So very glad that God healed your beautiful boy.

  9. Oh my goodness, that is awful! So thankful that your little boy is on the mend. Poor baby!

  10. So thankful that Kai is doing much better...I'm continuing to pray for you and for healing after a very scary time...virtual ((hugs)) mommy!! Anna (Jacob's mommy from BBC)

  11. I hope your little one continues to do better. Thinking of you!

  12. Oh, my, I just saw this! I hope he is all better now.