Saturday

Nothing went as planned yesterday.

The attending in the PICU thought James should be strong enough to just come off the vent without being weened...not so much. That idea crashed and burned and resulted in going back to full-strength vent settings. Frustrating because the weening was going well until that point.

James' hemoglobin was low and he's been pale so it was decided that he needed a transfusion. He got that last night. His color is much better today.

He is still pretty puffy from surgery so he got another dose of a diretic last night. His arms and legs are finally back to their normal size, but his stomach is still very tight. He hasn't had a BM since before surgery so hopefully that will happen soon.

His heartrate dropped overnight so they did an Echocardiogram to make sure everything was okay there. It is.

His daily chest x-rays have been looking good, but his chest tube is still draining fluid so there's no chance of getting that pulled soon.

This morning he was having really high CO2 levels in his blood. Eventually they found that he had a boogar at the end of his vent tube so he hasn't been getting the airflow that he needs. Once they got that cleared his CO2 levels have been improving and he sounds much better. But the attending wants to test his for RSV just to rule that out. He better not have it since he gets the vaccine every month!!!

Please pray for his health and recovery!

Friday...

Post-operation day 4: James is still being weened off the ventilator. The doctors expect him to be off the ventby the end of today. They're also backing off on some of his meds, hoping that it will help him come off the vent easier. James is still sleeping most of the time. When he's awake it's for very short periods of time (5-10 minutes). The meds make him drowsy and he can't really do anything with the vent still in anyway.

Dave and I have been taking turns staying the night with him...only one of us is allowed to stay since he's in the ICU. Hopefully he'll be strong enough for a regular room soon so that way we can have more visitors at once and we'll be able to eat and talk on our phones in his room. Thankfully the nurses are very understanding with the saltines in my diet right now and they don't really mind when I munch on those :) They even give me Ginger Ale when I need it.

Recovery Update

I didn't post yesterday because nothing has changed. James is still on the vent and sedated so that he can't move. The doctors wanted to give the esophagus a chance to heal before James wakes up. Today is supposed to be a different story. The plan is to lift the sedation today so James should start waking up soon. Once he's awake, they will start weening him off the vent. Once he is successfully off the vent for 12-24 hours he can be transferred out of the PICU to a regular room. Hopefully this will happen sometime tomorrow, but probably over the weekend. I will post as things change. James is doing well...just keep praying.

Beginning the Road to Recovery

James went into surgery yesterday around 10:45 a.m. and finished up at 1o:30 p.m. We finally got to see him after he got settled in the PICU (pediatric ICU) around midnight. It was a long day for everybody, but the surgeon was very happy with how things went. James did a great job and besides being a little pale, he looks great for having underwent a 12 hour procedure. For now James is being kept sedated and is still on the ventilator. It will take him longer to wake up from the anesthesia since he is sedated. The sedation is to prevent him from pulling on any tubes or disturbing his now connected esophagus while the sutures are still new. He will be in the PICU for a couple days, at least until he's off the ventilator. When he's stronger, he will get moved to a regular room on the surgical floor. James should be able to come home in 10-14 days.

Medical story: James underwent a gastric pull-up along with some other fancy Latin terms that I don't remember at the moment. The doctor was able to do the entire procedure laparoscopicly (no new incisions) which is amazing. They used the hole in his neck (where his esophagus use to come out) and the hole in his belly (where his g-tube was) to gain access to perform the procedure. They pulled part of his stomach up through his diaphragm and connected it to his upper esophagus just below his clavicle, so the connection is well protected under a bone. The surgeon put in a J-tube (similar to a G-tube except that is goes directly into the beginning of the small intestine) so that James will be able to get food that way soon. As I mentioned he is still on the vent and he has a chest tube, 2 IVs, a central line, the J-tube, an NG tube, and a tube in his neck for drainage from that site (plus all the monitor wires). Because of all these tubes (and for pain) James is being kept sedated for now. It's very important that he stay relaxed while his new esophagus is healing. Either Friday or Monday, the surgeon will do a dye test through the NG tube to verify that the esophagus is healed. (I was so excited to learn that this is a bedside procedure and won't require another OR trip). When the esophagus looks good, James can eat for the first time by mouth! His discharge will depend on weight gain and his ability to show he can eat.

I think that's all for now. Post questions about confusing points and I will do my best to answer. Again in the ICU, no cell phone calls, but we have the internet so please feel free to email! Thank you for all of your continued prayers. Praise the Lord!!!!

Surgery Tomorrow

Surgery is scheduled for 10am tomorrow morning. Please pray that it happens and that everything goes well. I will post an update as soon as we know more.

Teeth

At first we thought James had discovered his "pouty face." Then we realized that he just loves rubbing his tongue over his two teeth he has now. He sticks his tongue into his lower lip to play with his new bottom teeth. The first one came in Palm Sunday weekend and the next one a week later. What an Easter present! Hopefully after surgery next week, James can start using them!!! (I'll try to get a picture of them soon, but for now he never stops playing with them so I can't get a clear shot).

James' Secret