Long Day

It has been such a long day. I never thought sitting around would drain me so much! Bryce is doing great. No fevers, blood pressure is good, they finally put his feeding tube in this afternoon, so they will start giving him breast milk tomorrow morning. We got kicked out of the PICU again, another crisis situation. We were there for the 4-6pm visitation and were able to be with him until 5, so it wasn't a complete let down. My mom didn't get to see him though, she was on her way in when they closed the unit down. I'm just so thankful none of these situations have involved my little angel. We will call before we drive back up there for the 8-10pm visitation, but the nurse felt like they would be open again. I hope so, I really want to see his precious face one more time before I go to sleep.

They tried to de-paralyze him this afternoon. (We weren't there for any of this, they try to do things like this during non-visiting hours). Ideally they don't want to keep any patient paralyzed for long periods of time. Mucus and fluid will start to pool in the lungs and any movement will help move this fluid around and not sit and get infected, causing pnuemonia. On the other hand Bryce can't move much or he will hurt the surgery site. It needs to stay completly still. There is a delicate balance they are trying to find where he can 'twitch' or slightly respond to touch but not move any limbs or thrash about. Well those of you that know Bryce personally, know he is not a still, calm little boy. The nurse said his eyes popped open and he immediately tried to flip on his stomach. He wanted to break out of that jail cell crib! Needless to say, that was not the delicate balance they were looking for, so they increased the paralytic medicine and he is completely still again. They will try again tomorrow morning. I don't think they will ever get him to lay there and sleep without a fight. We need his airway to heal, so whatever they have to do for that to happen is the first priority. The movement will come when Bryce can handle it. (And it might have to wait until they take the breathing tube out next week). Hopefully we will have another uneventful night to report on tomorrow morning.

Thank you and Happy Birthday Wishes

We want to thank everyone at Hernando Hills Elementary School for the wonderful basket of goodies that they sent us! It was full of yummy things and a lot of quarters for the vending machines.

Thank you to everyone else for all the cards, gift cards, and presents you have sent. We have been overwhelmed with the thoughtfulness of everyone.

Bryce wants to wish his Uncle Buddy a very Happy Birthday today!!!!

Bryce also wants to wish his cousin Jack a very Happy 7th Birthday today!!!!

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!!

Surgery Update

Sorry it's taken so long to update everyone. It's been a long day, but Bryce is doing good. Not exactly the news we were expecting (well... actually it was exactly what my wife was expecting... some call it motherly intuition)... Bryce's subglottic hemangioma was back and bigger than ever. As you all know, we were only expecting to have an airway reconstruction today. When Dr. Woolley scoped Bryce, it was clearly evident that the hemangioma had grown tremendously. So much so, laser surgery wasn't an option. Dr. Woolley commented that it was one of the largest he had seen that close to the vocal chords, and he was surprised that Bryce was doing as well as he was considering the blockage of the airway the hemangioma was causing. In order to remove all of the hemangioma visible, Dr. Woolley had to split the vocal chords vertically in order to excise hemangioma that was growing under the left chord. While this may not result in any immediate harm, it certainly has the potential to cause problems down the road if the chords don't heal properly... could cause voice to be raspy and have winded speech (I've been accused of that without any such surgery!). Good news is that the stenosis was not as severe as expected, so the reconstruction/cartilage graft was not nearly as extensive. As a result, his airway (with any luck when he's healed) will be nearly the same size as other 9 month-old's. Bad news is that hemangioma caused this, so we still can't conclusively close this chapter in Bryce's life. Based on statistics, Bryce should not require another surgery nor should we have to get back on steroids. Statistically Bryce is basically at the age that hemangioma stops developing, but you really can't rule it out until about a year of age (and in some cases even later). So while we could be done with all surgeries, there is the potential for future surgeries to correct hemangioma or vocal chords or both. We're just glad that he's doing well at the moment. Currently, he's in the PICU and may remain there for the next 10 days. After that, we'll be sent to a private room for a few days and discharged when Bryce is "normal". We're hoping to be home sometime between the 28th and 30th.

To sum up, Bryce is doing fine in the PICU. He's on medicine that keeps him in a state of paralysis, so that he can't inadvertently pull out his breathing tube. He's on pain medication, so he hopefully is comfortable... and he's on some medication that will prevent him from remembering any of this. The biggest differences in what happened today vs. what we were expecting are... the reconstruction was not nearly as extensive; the hemangioma was back and still has some potential to grow (though statistically it should be nearly done) and Bryce could experience problems from the vocal chord incision. The best news is that this could be Bryce's last airway surgery, but the next couple months will tell the tale.

Through all of Bryce's trials, I've come to realize the expansive support group that Bryce, Brooke, and I have. To that end, I am forever grateful. For the last several years, I have been 10 ft tall and bullet proof, but as I type this blog entry, I'm 5'11" (OK... 5'8") and extremely humble. The out pour of presents for Bryce, emails, phone calls, cards, and prayer requests have been almost overwhelming. The power of prayer and positive thinking work... please keep it up b/c we're not back in Millbrook, USA, yet.

For the moment, we are good. Please keep us in your thoughts and prayers. We'll keep you posted through the upcoming days. - ABD, Sr.

Merry Christmas!!

I just realized that I won't have access to our pictures closer to Christmas time (and you know we have some cute Bryce pictures for Christmas!), so I want to wish everyone a very Merry Christmas from our family to yours!!

Anxious

That is how we are all feeling around here today. In less than 24 hrs. we will be in full surgery mode. I still haven't heard from Patty about when we need to be there and when he needs to stop eating, but I'm assuming we will need to be there around 10:00, and he won't be able to have any solids after midnight, and breastmilk after 7 or 8am. I have started packing for Bryce, Anthony and myself, but 2 weeks is a long time to pack for! I slept better than I thought I would last night, but I'm sure tonight will be a different story. I might just bring Bryce in bed with us so I can stare at him and cuddle all night!!

This might be my last update before the surgery, but I will update sometime tomorrow after the surgery. It might be later in the day, he is scheduled for 12:15, but they are NEVER on time there. It will probably be closer to 2 or 3 when he goes back, and the surgery is at least 1.5hrs. long.

Thank you so much for all of your prayers, keep them coming!!!

Thursday @ 12:15

That is when Bryce is scheduled to have his surgery. I'm glad they were able to get him on the OR schedule, but Thursday is so soon! I am dreading the 7 days without my little Brycie Bug. It will no doubt be the longest week ever. Patty is going to call me back with the details about what time to be there and when he has to stop eating, drinking milk and clear liquids (nasty pedialyte that he never wants).

We are staying in Birmingham at Studio Plus while Bryce will be in the PICU, we can have pets there, so Reagan's bags are packed too! This hotel is an extended stay so we will be able to cook there instead of eating out every meal. My mom is going to teach my sister and I how to crochet while we are in the hospital! We will see how that turns out!!!

I am on my way to our playgroup's Christmas party. I really wish Bryce could go with me. I know it sounds weird to be going to a 'playgroup' without your kid, but I have gotten so close to all the moms and babies and want to see them today for the party. Maybe I can help chase some of the kids and give the other moms a break.

Bryce's Auntie Blake is on her way to stay with us for the next 2 days. She was planning on staying all week and we were going to do the Borden family Christmas this weekend, but......! Christmas will be in January this year for us. Kind of neat! I've already contacted Santa and asked him to make a special trip to Millbrook in January, he was very graciously agreed!