Bryce has 2 prayer requests for you

Please pray for two of my internet friends. The first is a very pretty girl named Izabell. She was born in March just like me! She has PHACE syndrome, and had open heart surgery when she was just 6 weeks old. She also has a hemangioma in her airway that she had laser surgery on yesterday. She is recovering well in the hospital today. Please keep her and her family in your prayers.

My other friend is named Quinn. He was born in May and lives in Canada. He also has PHACE syndrome and had a stroke at birth. He has a large hemangioma on his face which they do chemo on because it is getting so big and affecting his eyesight and ulcerates really bad. He is always smiling though. I hope I get to meet him one day, I think we would be best buddies. Yesterday they discovered Quinn's PICC line had broken in two and one part of it is floating around in his chest. They flew him to the Sick Kids Hospital in Toronto and are going to do surgery today. Please say tons of prayers for 'Mighty Quinn' today and always. Me, mommy and daddy said some extra prayers for him last night.

Thank you all!!!

Love, Bryce

Yesterday was frustrating

First we get in the car to go to the doctor's office to get his RSV vaccine and he throws up everywhere. We had it all set up with the nurse that she would come out to the car to give him the shot so we wouldn't have to go inside with all the germs. Well with the vomit, I couldn't drive with him in his carseat so we had to call and cancel. He has to have these shots every 30 days and yesterday was day 29 so we knew he needed to get it. He threw up 5 more times in one hour, but never acted like he felt too bad. I think it might have been the yogurt he ate for breakfast. We are staying away from anything with dairy in it for a couple of months or so, just in case. Around 2 it was obvious he felt pretty good so we drove to the doctor. My cousin was with me in the backseat in case he threw up again (he didn't!). We had to wait in the car for 1hr. and 45 minutes before they came out with the shot. BIG THANK YOU to Rod and Martha Lynn who were all scrambling around the city of Montgomery taking care of their kids (while they should have been at work and moving!) while Jennifer sat with me at the doctor's office. And HUGE THANK YOU to Jennifer for keeping me company all day. It was great having someone there with me.

Dr. Woolley was supposed to call the house between 4:30 and 5:30 to talk to us about the surgery, he never called. I'm bummed. I really wanted to get all my questions answered. There are so many floating around in my head. I'm going to call his nurse this morning and ask what happened and try to reschedule.

Our Playgroup is Awesome!

I just had to brag on the women in my playgroup. Bryce and I have only been a member of the Montgomery Moms playgroup since September, but they have really embraced us. They have been so sweet to pray for him, send cards, and today they brought by a BIG gift bag full of toys, magazines, and sweets for us! Thank you ladies and babies so much, you never know how much words of encouragement and acts of kindness mean until you've been in a situation like this. I can't wait until we can see everyone again and meet all the new moms and babies!!!

Cappy is coming!!!

My mom is going to come stay with us from next Sunday (Dec. 3) until after the surgery. That is going to be so awesome! I am already getting bored being a hermit and it has only been a day and a half!

Bryce is feeling much better now. The cold is gone, and he is sleeping much better. They put him back on a very small dose (1/6th of what he was taking) of steroids to get the inflamation from the croup down. He is scheduled to get his 3rd RSV vaccine tomorrow, and I'm trying to work it out with the doctor's office on the best way to keep him germ free. The nurse was supposed to call me back yesterday, so hopefully I'll hear from her today. We also have a call scheduled with Dr. Woolley for tomorrow afternoon so we can ask him many many questions about the surgery and recovery. I'll update after we talk to him.

Thanksgiving

We were supposed to go to my mom's parents house Wednesday night, my dad's brother's house Thursday for lunch, our family's lakehouse Friday for lunch, and Anthony's parent's house Friday afternoon for the weekend. We can't risk having Bryce around that many people, so we stayed at home all weekend. Don't worry, we had leftovers so we got our turkey and dressing!!! We were so glad to be home from the hospital (we got home the day before) that we didn't mind staying at home. Right after I found out I was having a boy, I found the cutest vest for Bryce that screamed Thanksgiving at the farm (my uncle's house). Since we didn't make it to the farm, we played dress up at home and of course took pictures! My parents stayed with us until Sunday, so of course Bryce loved that!

Airway reconstruction surgery

Dr. Woolley said that the stenosis is bad enough that each cold he gets (remember our eventful Nov. list, there was a cold listed?) he will have this reaction. It will turn into croup and probably send us to the ER and PICU each time. He thinks we need to do the airway reconstruction surgery he mentioned over the summer. We had all basically put that out of our minds, we were concentrating on the hemangioma so much, there wasn't room for this major surgery in there too!

The reconstruction surgery involves opening up his airway and grafting a piece of cartilage from his ear. They will use this cartilage to widen (2-3 times greater than it is now) his airway and make it cylindrical like the rest of the airway is. He will be intubated (breathing tube-ventilator) and sedated completely for 7 days, then we will spend at least another week in the hospital recovering from all that. There is danger keeping him sedated and intubated for that long in the PICU with all the germs and sickness around, but the Dr. thinks it is either do this surgery soon or give him a trach and hope his airway grows in a couple of years, but there is still the risk of having to do this surgery anyway down the road.We feel like (and the dr. agrees) that the reconstruction now is the way to go.

We have tentatively scheduled this surgery for Dec. 18th, meaning we will be in the hospital for both Christmas and New Years. We all think it is better to get this over with as soon as possible. We can't have him getting another cold between now and then so Bryce and I are officially hermits!!

November 19th

We spent the first night in the PICU. They normally have visiting hours that are pretty strict, but they wanted Anthony and I in there with Bryce because he would not calm down. They wouldn't let him eat in case they had to do emergency surgery on him (his breathing was that bad that night--I saw some paperwork one of the nurses left out and it said Status: Critical/Urgent, that really scared me) So we took turns rocking him and at times listening to him scream and couldn't do anything about it. It was so hard, I cried almost as much as Bryce did that night. The next day Dr. Woolley did another scope. I think we were all expecting the news that the hemangioma had grown back since he wasn't on steroids anymore. When the nurse called and said "Dr. Woolley said to tell you is just croup". I didn't believe it! We waited for him to come and talk to us in person, I had a lot of questions. By the time we talked to him Bryce was out of recovery and back in his bed in the PICU.