Surgery might be moved up

Patty from Dr. Woolley's clinic called me back after talking to him (only took 30 minutes from the time I called her, I was impressed!). He said to put Bryce back on the small dose of steroids he was on for the last 2 weeks and that he is going to try and do the surgery this Thursday! He usually doesn't operate on Thursdays, so they are working on scheduling OR time for him. Hopefully we will know by this afternoon. I'm so scared, but I know this is the best for him. Maybe we will be in our own hospital room by Christmas!! I will update when I hear back from Patty.

Breathing getting tight again

Up and down, up and down, up and down. That is how our life has been for the last 7 months. We get excited because he sounds so good, you can't even hear him. Then the next day his breathing is so loud you wonder, is it time to go back to the hospital? We are down right now. He only has one more week until his surgery, and his breathing is so tight. It sounds pretty good when he is resting/sleeping, so that is the only thing keeping us from going. We have our bags packed in case we have to rush up there again. I'm about to call Dr. Woolley's nurse and ask if there is anyting we can do. Maybe get back on steroids for the next week? We don't know if he needs to be off of them for the surgery though. We took him outside in the cool air yesterday and that seemed to help. We are going to do that again today and keep the house cooler for him. I'll post again after I talk to the nurse.

Bryce is oblivious to all this though! He is so busy and wild sometimes you wonder how he can do all these things with such a small airway! He is a little piglet, always acting hungry and sleeping more than normal so we are sure he is going through a growth spurt. I can't wait to get him on a scale at the hospital and see how much weight he has gained. I feel certain he will be back on the charts, maybe even in the 10-25 percentile!!!

Thank you Thank you Thank you!!!!

To all of you who were so thoughtful and got together on the presents for Bryce. I was in shock when the UPS lady delivered the two huge boxes the other day. It means more than you can ever know. Having such good friends from all over get together and do this is amazing. I attached some pictures of him opening some of the gifts.

For those who don't know what I'm talking about, Ryan Morehead, Anthony's college roommate, fraternity brother, and one of my good friends as well, got a group of our friends together and bought Bryce two large boxes of toys. He is going to have an amazing Christmas thanks to all of them!! Thank you Ryan, Jess and Baby Mo, Holly and Trey, Kelley and Luke, Casey, Bethany and Harper, Whitney, Bob and Wendy, Lauren and Chris, Marci, Clint and Reese, Mr. Jim and Mrs. Marisa, and Sobczak. We love you all!!!!!

Bryce has a new trick!!!!

Yes, that is my baby WALKING!!!! He loves chasing his Cappy around the living room either crawling or walking with this toy from his cousin Daniel. He giggles hysterically at her. It is the cutest thing ever. As you can see, we aren't doing too bad being stuck here at home. Having my mom here has been a lifesaver. I can get out when I need to, and he loves having another person to play with.

Not much news here today, probably a good thing! We had a great weekend hanging out at home. The weather was nice so we walked around the neighborhood some. My mom made it here safely and Bryce is in heaven. She lets him get into things I won't!! He is finally enjoying foods other than jarred baby food. He had Ritz crackers and fruit and vegetable puffs with juice today, and really enjoyed all of it. Maybe we can put some meat on his bones!

I talked with one of Dr. Woolley's nurses today about Bryce's feedings in the PICU. They will have a feeding tube in his nose and I will pump breastmilk for him. Don't really have any other news!

Talked to surgeon yesterday

He finally called around lunchtime yesterday, so of course Anthony wasn't here to talk to him with me. We had our list of questions ready though, so I think I did OK on my own! We can't do the surgery any earlier than the 18th. They want to wait 4 weeks after any infection to do major surgery, so the 18th it is. We won't be first case like usual, I guess Bryce isn't the youngest patient anymore! We will find out the Friday before what time we need to be there, what time he has to stop eating and all that. I'll let everyone know after I hear. I had a couple of questions for him:

1. What is the liklihood you will get in there and NOT do the reconstruction? Only 10% chance that he won't have the major surgery.

2. How long will the surgery take? About an hour and a half

3. When will they wake him up? 1 week post surgery (Christmas Day)

4. How long will we be in the PICU after he wakes up? If all goes well, only 1 more night, after that, we will be in a regular room where we can be with him all the time.

5. How long until we can leave the hospital? 3-7 days after he wakes up. Depending on how he does, eats, drinks, etc.

**I don't know what is wrong with the website I tried posting these pictures yesterday and couldn't get them to work, but here they are......

TGIF!

Haven't heard from Dr. Woolley about when we can schedule another call. Getting pretty anxious about it too. I checked with his nurse and the 11th is a possibility if he OKs it. (Our first question for him is can we do this a week earlier?) I'm carrying my phone around with me everywhere so I won't miss the call!!

Bryce has been so much fun this past week. I was dreading being cooped up in the house all day, but he has been great! It is finally winter here, so we probably can't go outside as much, which is a bummer, he loves strolling, playing with grass, and listening to cars and big trucks go by. He has been playing alot with his best friend Reagan. We are excited to see Cappy Sunday, be careful driving Momma!