Saturday, May 30, 2009

We're home! Sort of.

Thank you all so much for the prayers, and a big thanks to Mandy , who was kind enough to call and check on Seth and to update the blog for us. The hospital Seth was in had no internet access. We are now back at home, or rather, our home away from home, at my aunt and uncle's house in Indiana. Seth is still not 100%, but is breathing, so we're thrilled!

As Mandy told you all, Seth stopped breathing on Thursday night about midnight. When I picked him up out of bed, he was startled and took a breath, but was really retracting deeply and struggling to breathe. We headed for the emergency room and after two racemic  epinephrine treatments, they sent him home, against my better judgement. Within three hours, we were back, Seth was worse than ever, and he received a third treatment, a series of x rays, a shot of Decadron, and an ambulance ride to the Children's Hospital here in town. When I walked into the ER the second time, they literally pulled him out of my arms and started working on him. He was in bad shape.

Luckily (if I believed in luck), the steroids he received helped a lot, and after a day in the PICU, he headed for the stepdown unit and a night bonding with me and the friends and family who streamed through the door to visit him. While in the beginning the ER docs thought it was croup, the Pulmonologist we saw felt it was more likely a complication from his lengthy intubation at birth, and that some irritation or scar tissue in his trachea is putting him at a higher risk for upper airway restriction when he has an otherwise harmless illness, like a cold. He was incredibly helpful and got Seth feeling well as possible, considering the situation. On the x-rays, we saw that his trachea had what is called a steeple effect, where it is open at the bottom and narrows as it rises, and is very close to closed at the top.

We are treating Seth at home now, and when we return to Florida, he'll see a Pulmonologist there who will do more in depth testing of Seth's airway.

Seth is exhausted just from breathing the past couple of days, and we have been laying around here all evening cuddling him and the other kids. I can't tell you how scary it was making the 30 minute drive to the hospital with a baby who was struggling to breathe, and doing it twice almost killed me! I am realizing all over again how blessed we all are by this little boy. Of course, I also feel like it's always something, and I am ready for some boring, uneventful weeks.

I can't thank you all enough for the prayers, emails, and phone calls and visits. You've all helped pray Seth right through some huge things, and we appreciate you so much!

14 comments:

Jennifer W. said...

I'm glad you guys are back at your aunt's house. How scary all of this must have been! We will keep praying for Seth and I hope your vacation gets really boring!
Jen

Mandy and Jack said...

Whew! I'll keep praying for you and Mr. Seth!

Analiza said...

I was so worried for you and Seth. But thank God he's doing much better. Definitely get that checked. Was it instinct to come check on him or was that feeding time?

We prayed and prayed for you all, we don't know you personally but we were worried so much as if he were our own.

Please keep us updated and drive back home through cities with great childrens care! Just to be safe!

Lots of hugs and kisses for our little fighter :)

Analiza

Just'N Angel said...

That picture of Seth on that big old stretcher just killed me. I'm so glad he's doing better. I was praying for you through the night and today. Don't you wonder sometimes why it has to be the same child with all the problems? Seth is so special, but it's okay if he's special without having to prove it over and over again! LOL. Thanks for letting me share in praying for him.

Daveda said...

Praying for your family.

Jenn said...

Glad to hear he is doing better. Continuing to pray for him. I hope the rest of your home away from home time is uneventful!

~ Lisa @ AbidingThere~ said...

Thank you for taking the time to update us - glad to hear everything is ok.

writing4612 said...

I had a doctor send me home(an 1-2 hour drive) against mine and my mom's better judgement. He said there was no reason to keep me when there obviously was, and I threw up ALL the way home.

It was absolutely awful because I was told I was going to be hospitalized. My doctor was FUMING. Sometimes I don't understand how people even get into medical school. I'm glad Seth is more comfortable now-scar tissue can be very painful.

Sonya said...

I am glad that he is doing better. I will keep praying for you all. That is so scary, momma!

Amy Genn said...

El,
You are speaking my language. We've been through this 5 times.
We call them "respiratory distress" events. Eli's first one was at 11 months old. They are so scary. We didn't quite know what was happening that first time and we drove him to the hospital....bad idea! They took us back before we even told him our name! He was almost into cardiac arrest. After that we called the ambulance immediately upon seeing the retractions in his chest....and usually a "bark" like cough.
We've been told croup. Aspiration (our son is tube fed) from spitting up. Tracheamalacia. Etc.
After three years and five events, they still don't know why it happens.....but we've NEVER been told it's because of intubation. Eli was intubated for 3 weeks!
I mean we know he has a floppy airway because he has severe Cerebral Palsy. He cannot eat by mouth because he has a weak swallow. We know he doesn't manage his secretions well.
But we've never been told its just scarring.
Interesting to know! I'm glad I read your blog!

Finally, I just want to say that Epi takes Eli out of it everytime!
When we've taken ambulance rides I insist on Epi while transporting....it's usually a fight....because it's not protocol. But I insist, they do it and he starts breathing again.

There is always a crash about an hour or two later. Another recemic epi treatment is needed...and we stay the night in the ICU.

We now carry a Junior Epi Pen with us. And keep one in the house.
We also got a note from our pediatrician instructing the ambulance personnel to give Epi.
I keep Emergency instructions and the doctor note taped to the closet door by our front door. All caregivers know what to do in case of an emergency.

Feel free to contact me if you want to talk more.

I'm glad Seth is OK! Eli always bounces right back, and we're home the next day going "what the heck just happened?"!!

God bless you all.
Amy

Mommy Marta said...

Drive safely and as always I will keep praying for y'all.

Emily said...

Wow. What an ordeal to go through. I feel for you...nothing is as scary as wanting to know what's going on with your baby. Prayers that you get answers soon and for Seth's health.

Shanda said...

Never a dull moment with your adorable little guy! ;) Praying all goes smoothly and uneventfully the next few days until you can get back to FL!

Blessings sweet friend!

Shanda

Momma Mango said...

Glad to hear you are "home" and Seth is doing better. I'll keep praying for him. I'm glad you have some answers, but I also hope his docs can treat this somehow so it's not an ongoing issue for him!

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