1 night down......

READ BELOW POST FIRST---->>>>I was so exhausted last night that I couldn't even think to post anything. I think Anthony did a great job with all the details though. Of course mine would have been more emotional so it is probably a good thing a man did the first update!!! I don't see how Jenn, Quinn's mommy, does it with such a positive attitude with all she and her family have been through.

Here is my ramble and a little am update: (H=hemangioma) The waiting wasn't as bad as I had thought it was going to be. He was scheduled for 12:15 and they came and got him at 1:15. He was getting pretty fussy/hungry by then, so I'm glad we didn't have to wait much longer. The surgery was supposed to be 1.5-2hrs. long. The nurse called the waiting room at 3:20 and said they were still working (I knew then that something wasn't going as planned, but I also knew that nothing was wrong, they would have told us that). When Anthony said motherly intutition, he was right. When we rushed up here 4 weeks ago, I KNEW it was hemangioma. I just knew it. He probably had a little croup on top of that, but it was the H that was causing the breathing to be so bad. No one believed me. Not that we could have done anything different. It was so big that it was beyond lasering, and if I understand it correctly, he was able to get more with the excision and with the position of it being right at the vocal chords, he wouldn't have been able to laser that anyway. And he was able to do a small graft to get the airway bigger, that way we can just focus on the H from now on and not have the stenosis hovering over us.

Dr. Woolley came and updated us right after the surgery and we were immediately moved up to the PICU waiting room. On the walk up there the nurse took us on the patient elevator and while we were waiting for one a baby was wheeled by us on a stretcher. It was Bryce! I was in shock I could barely tell it was him. I saw his H on his face and knew it was him. I know that was not supposed to happen. We should NOT have seen him like that (they were using the bag to breathe for him) or at least not without being 'warned'. I broke down for the first time yesterday after that. I needed to cry and that sent me over the edge. I wanted to grab him and run home. We had to wait for 1.5 hrs. before we could go into the PICU to see him. When we finally did, the visiting hours were over so we only had about 15 minutes with him. He looked better than I imagined. He has a really cute red headband/hat thing on to keep the ear covered with gauze. His coloring was great and he looked peaceful. The ventilator is not nearly as loud as I thought it was going to be. I've been prepared for the loud whoosh whoosh, but it was pretty quiet (I don't know why this matters to me, but it does!) His breathing tube is in his nose instead of his mouth, they do this sometimes for the airway patients. He has a large roll of gauze at his neck area which I assumed was to cover the stitches, but the nurse said it was only there to keep his neck from leaning forward too much and impede healing. He has 2 IVs, one with continuous medicine and another with the extra stuff he will get. They are having to wean him off the prednisone while he is here, and he is still getting Zantac I believe. He has leads on that continously monitor blood pressure, heart rate, and Oxygen levels. He doesn't have a feeding tube yet. The PICU staff doesn't feel comfortable putting one down his throat with the area being so swollen from surgery so they are waiting for ENT to do it. I'm thinking it will be a couple more days before they do that though. They can give him some high calorie nutrients in his IV until then. I'm pumping and building up a good stash for when he can finally 'eat'. We had to leave the ICU from 6-8 (they have strict visiting hours and are closed for 2-4hr. increments throughout the day). We got back at 8 excited to see him and relax and talk to him and ask more questions and the ICU was closed. They close down in 'crisis situations' whenever they need too. The waiting room was full of people waiting to get in to see their kids. Everyone was bummed and speculating about what was going on. Anthony got up to ask the receptionist about it and she said if it was our child in the crisis situation, we would know. Meaning they would call our cell phones or come out to the waiting room to look for us. That made me feel so much better, of course I was thinking the worst! We never got in to see him. The unit was supposed to open from 8-10 but it never opened. I heard someone say they were doing surgery back in the unit, scary. We left at 10:00 so bummed. I needed to see him before I went to bed. We called his nurse and she assured us he was fine and she would call with any changes. I slept better than I thought I would. I was so exhausted from the day that I needed the sleep. The unit is open from 5-6am and then closed until 10am. We struggled with the decision to go up there at 5 to see him for an hour, but decided that we needed the sleep (I have a tendency to get sick whenever Bryce is in the hospital for longer than one night, I think it is from stress and lack of sleep). So now we have to wait until 10. 1.5hrs. I can do it! I can't wait to see him and rub his hair and kiss his cheek and sing our good morning songs to him.

I called the PICU this morning and talked to his nurse. She said he had a good night and was resting comfortably. His blood pressure is a little low, but that is to be expected on such a high dose of sedation, and his blood count is low, but she wasn't worried. (Of course I am, but it helps to hear her so calm about it) She said the Dr. will figure it out this morning, so hopefully we will know what is causing this by the time we get up there.

I was making fun of Anthony about his post being so long and mine is longer than his! Oh well. I need to get my thoughts out. We will update later today. Thanks for the prayers!!