Saturday, December 29, 2012

Fuji

Whoa! Jack swallowed at least one piece of steak and one piece of mushroom. He's resorted to feeding the dog but...whoa! Leftovers from Fuji Japanese Steakhouse.

On a (back)side note: we had to give Jack an enema two days in a row. He isn't completely clean but at least he isn't vomiting anymore.

Monday, December 24, 2012

Jack is home. He came home Friday.  He lost his IV on Thursday and it wasn't replaced because he was tolerating small amounts of formula. He is only getting half his usual calories but is doing well.

We are also trying to get him to poop. He hasn't gone since Wednesday. If he's backed up and we feed him too fast he might vomit.

Thursday, December 20, 2012

Wednesday, December 19, 2012

And so it goes

Jack is back in the hospital. He hasn't been admit for illness since June 2011after some excessive vomiting post-surgery. Before that, it was December 2010 for excess vomiting/gastroenteritis. This time, it's the flu with complications. We are thankful that he has stayed out for such a long time.

Jack has been battling a cough/cold for about a week. He vomited a large amount of mucus Monday morning and had a fever. We figured it was from his cold. We took him to the doctor to be sure he didn't have a need for medication. She tested him for the flu even though he didn't have any symptoms. She said she's had a ton of kids test positive for Influenza A without flu symptoms. She came in with his results, jaw dropped. He tested positive. The entire family was put on Tamilfu (minus Katie because she's too young). Things started to spiral around 4pm.

First, we found bile in Jack's feeding tube. Then we found some dried blood. He vomited another large amount of mucus around 7pm. And then again. And again. Then he started to vomit bile. He vomited about every 3-5 minutes from then on. I took him to the ER around 10pm when dehydration set in.

He was admitted around 3am after a couple of abdominal x-rays, two separate IV boluses, and two doses of Zofran (anti-nausea med). Dried blood was coming out of his feeding tube and also with his vomit.

He retched until 5:30am when I passed out in the bed in his room. I was back up around 7:30am. He was hot and pale; eyes sunken. We kept his IV fluids going all day. Jason came and relieved me after he took Evie to school. He spent the entire day with Jack and spent the night. I cared for Katie during the day and then picked Evie up from school. Evie picked out two balloons for jack (Elmo and Spongebob) and delivered them right away.

Gatorade was started (half oz) over 30 minutes. It was run every two hours. Jack vomited once. The fluid was upped to an ounce for the night and was run, again, every two hours. Jack did great.

I took Evie to school this morning and then switched places with Jason. We tried an ounce of formula around lunch today. Jack vomited every bit up. We took a break and tried some more Gatorade. He made it to a half ounce and showed signs of future vomit. Of course, I turned it off.

I am about to try some Gatorade again after a four hour break. Prayers that it stays down.

Jack's lips have been swollen. He's drooling like crazy because his throat is raw from vomiting so much.

Here's a pic of Jack trying to feel better. The towel is on his lap to catch drool.

Friday, December 7, 2012

School Projects

I just love, love, love getting school projects!

Wednesday, December 5, 2012

A Gift

Jack gave me a gift! He recently discovered stickers. This may be the first one he has ever given.

All good!

Cardiology update:
Yesterday (12/4/12), I traveled to Prairie Heart Institute and received Jack's sedated echo results. I am happy to say that the results were good! His PFO (patent foreman ovale- hole in heart) is FINALLY closed! It took almost 4 years! If it was still there, Jack was going to have to go to Cardiac Catheterization. Phew! He still has a thickened aortic valve. No leaking. No pressure. All good! We don't have to go back for a year! This is wonderful news because many CFC Syndrome individuals require heart surgery.

Jack had his IEP a couple of weeks ago. The meeting went well. The entire team was on the same page. Jack has been visiting a second classroom (the next level up from his, which is the lowest) every day. He tells me about "Ms. Allie's class" every day. Well, good news! He will be placed in Ms. Allie's class, full-time, beginning in January. We will be switching from morning classes to afternoon classes, but I can work around that.

Here are some pictures to entertain everyone!

Jack's new braces (AFOs-ankle foot orthotics)! He picked the pattern out all by himself!

Jack didn't believe me when I told him he was too big for the baby swing!
He picked the tray off the floor while swinging!