Home, Finally

Well, as of Sept. 2nd and after 6, count them, 6 infections Joshua is HOME! Poor baby had to go through 5 IV sites and countless blood draws. He finally has decided being in the hospital isn't all fun and games after all! He's doing alright. The IV antibiotics have been rough on his system. Today was the last dose, so hopefully things will get back to "normal" What's that?

Still in the Hospital

Well, here it is two weeks in hospital. Hopefully the new central line is placed tomorrow and hopefully they send us home on IV antibiotics this week! That's what we're praying for. We've ended up with 4 additional infections and we're so ready to get home and get back to normal. There's only so much normal you can make of the hospital. Although Joshua is such a good sport. He's made so many friends, the hospital staff loves him, can you blame them?

Joshua's come down with a yeast infection in his central line. Yeast is naturally in everyone's digestive tract and unfortunately, sometimes ends up in the bloodstream in people like Joshua. It colonized on his line (which is made of plastic and very attractive to bacteria and yeast.) The surgeon pulled out the old line and they want a complete course of antibiotics before they place the new one. We're looking at another week or so in hospital.

Pray that we stay infection free and that we can better control bacterial overgrowth in his little system.
I'll let everyone know when surgery date is scheduled.
Thank you for your prayers,

Dana

Feeding Therapy

We've been accepted by Baylor's Our Children's House to enter their feeding therapy. It's an intense look at why Joshua doesn't want to eat, what Joshua will eat and what he should eat. We are so excited to be receiving this help! Who knew eating would be such a battle.

Florida or Bust...

It looks like we are going to make the trip to St. Petersburg, FL after all! The Oley Foundation is having their annual convention at the end of this month and we should be able to make it! Check out my link to learn more about it. Pray for our trip and that we come away from the convention with some knowledge or medical connection that will make a difference in Joshua's life.

At Cook Children's Again!

Well, here we are. Admitted once again, but it has been over a year since Joshua's last Central Line Infection. That's one a year so far. Much better stats than we were warned about in the NICU way back when. Joshua's short gut has exposed his blood to E-Coli which has now colonized on the tubing in his vein. We are praying it clears with antibiotics so that he doesn't have to have a new line put in (surgery!!!) Being that he's three, life as a patient who doesn't know he's sick is sure interesting. The buttons on the bed are quite fun and heaven forbid you get real into anything on t.v. cause the channel is likely to change any minute! It looks like we're here another 2-3 days at least too.

Pray for him and my patience!

To be scared, or to be informed?

In a situation like this, you make a choice on how to handle things. You throw yourself the biggest pity party known to man, or suck it up, focus only on the moment in front of you and learn all that you can about everything! Immerse yourself in it all. Just what is an ostomy and what are blood gasses? Who's an RT and just what is a direct bili? Somethings took a while for me to get a grip on, so I found it easiest to obsess over what I did understand. I knew that kid's weight, temperature and amount of bowel movements at any given moment. Even if I wasn't there for each shift, I knew what nurse was caring for Joshua at each shift change. Shift change, that's an important thing to understand and respect. I knew when each of his doctors usually rounded, always try to plan hospital visits around those times! The unknown can be mortifying, I wasn't going to let it get the best of me!