Post-Op Appointment

Our appointment with Dr. Woolley went great yesterday! Bryce was so glad to be out of the house and out in the world again. Dr. Woolley said Bryce's breathing sounds great and that both incisions have healed up perfectly. The infection in the ear has cleared up and looks really good. I finally got to take a picture of Bryce with the famous Dr. Woolley. We also got to meet two of his nurses that have been so good to us over the last 7.5 months. I talk to them on the phone all the time, but haven't gotten to thank them in person. It was good to see them and for them to see Bryce. No one can believe that he had major surgery only 2 weeks ago. My mom and I wanted to go shopping in Birmingham after the appointment, but Bryce was worn out so we came on home.

Bryce is 90% back to his old self. His legs are still pretty weak. It takes a while for him to pull up, but once he does, watch out! He is cruising on the furniture and using his push toy to walk again. It is amazing how far he has come in the last week. One week ago today, he was just laying there in the PICU staring at us and not moving or showing any emotion. Today he is walking, giggling, and playing peek-a-boo!

Oh yeah, Dr. Woolley wants to wait 3 months for the next scope, so we are tentatively scheduled for March 19th. Lets all hope we can stay away until then!!!!

I hope everyone had a wonderful Christmas! We sure did. Being at home with our little boy was perfect. We didn't have presents to open, no stockings to go through, none of our usual Christmas traditions (because we didn't think we would be here), but I have to say yesterday was the best Christmas I've ever had! Santa did stop by and deliver a few gifts to Bryce!! He had a great time opening them and playing with the new toys. Everything is still a little intimidating to him right now. He wants to play with his toys, but he wants to do it from the comfort of our laps (which is fine with us right now!!!). He seems very insecure when he is alone, which breaks my heart. We think this is from being alone in the PICU for so long. I think this is improving though. Right now he is taking his first nap in his crib since we've been home. The other times we've tried he screamed and screamed. (This is a kid who always went to sleep on his own. He wanted us to just lay him in his crib with his PJ bear and he would put himself to sleep). His appetite is still great. He is back to eating everything he was eating before the surgery, and plenty of it! He is crawling again, sitting up, pulling up (this seems to be the hardest for him, his little legs are still so weak), and walking with his push toy for a few steps at a time.

We go for our follow up appointment with Dr. Woolley tomorrow at the Children's Hospital South (a clinic type place instead of the big hospital). I'm so glad we don't have to go back to the actual hospital so soon. Our appt. is at 1:00, and I'll update the blog again when we get home.

**We had already opened those two huge boxes of presents from everyone before we left! That is what I get for jumping the gun!! Ryan and Jess, we have the cutest video of Bryce and Mr. Bingle that we will put on here later today.

Hospital pictures

Here are some of the pictures from the last 10 days. I wish I had one of him in the surgery waiting area while we were waiting for all this to begin. We had our own little room with a crib and chairs and a sink. He played in the crib for a long time, then got bored. He wanted to get down and play! There were toys out in the hall for everyone to play with so I got a little walk behind truck thing that you can also ride. Just picture him: yellow hospital gown tied in the back, only a diaper on underneath, pushing this truck down the hall! SO CUTE!!! Here are the other ones, not so pleasant......

Dear Santa

Instead of visiting us in Birmingham, could you please come to Millbrook tonight because WE ARE HOME!!!!!!!

Sorry I didn't update yesterday. I kept meaning to run to the hotel and get online, but I never could leave my little buddy! He is doing so much better. He slept wonderfully both nights in the private room. He would wake up more alert each day and today he actually smiled at us for the first time!!! What a Christmas present that was. I cried my first happy tears in that I've cried in a while when I saw that big smile.

He is eating a lot! It is a good thing I've got a good freezer stash of milk now because he is pigging out. He just had some solid (baby) food for lunch and loved it. His ear does have a little infection (the incision has the infection, not a normal ear infection) so he is on an antibiotic for that. It is bleeding and pussy some, but it actually looks better today. He is still hoarse, but there is voice there now, just a raspy one. He desperately needs a bath, so that is on the agenda for tonight. His neck looks great, I think it is itching him some from the stitches healing.

Last night he started crying for the first time in a while (it was actually a good sign that he was crying, before I don't think he had the energy to). The crying lasted too long and seemed a little to pained. I asked the nurse to check his IV and it had almost come out again and was clotted with blood. Poor baby, he was trying to tell us something and it took us a while to know what it was. (Actually it didn't take us long, it took the nurse long to believe us. She kept assuring us it was OK. Well then why is he screaming when you press on it??) Anyway, we talked her into taking that out and he still cried for another 30 minutes or so. Papaw Ruff finally got him settled down and he slept for 12 hours straight!

He is on so much medicine it seems like!!! Prednisone twice a day (weaning him off of that for the next 9 days), Zantac twice a day, Keflex (antibiotic) three times a day, and Elidel cream for eczema twice a day. I think the antibiotic hurts his tummy :(

I am going to post some pictures from the hospital this afternoon. Right now we have to run to the grocery store before they all close. We have no food in this house!!!

MERRY CHRISTMAS EVERYONE!!!!

We are moving!

There is a room on the 4th floor with our name on it! We should be moving up there later this afternoon. Bryce is about the same today. Maybe a little more aware of things, but not much better at all. Still doesn't want to be touched or held, and noise still bothers him a good bit. We were able to be with him from 10-12:15. The unit was closed after that for a procedure. We have met the family of the little girl that was having the procedure. She is 8 years old and is very very sick. Please pray for her to get better. She is here because of the flu, but has been on life support for at least a week now. The procedure today went as planned, but it will set her back a couple of days. The mother was told to not expect any improvements for about a week. She has a 5 yr. old and a 2 yr. old at home. All the stories you hear in there are so difficult to imagine, but these people are living them. There is a 10 month old with a brain aneurysm, a 2 year old with the flu who has gone into full arrest 3 times, several RSV babies.....

We will be transitioning to the room this afternoon and tonight so I will probably not update again until tomorrow sometime. Unless there is a significant change in Bryce. Oh yeah, he did eat a little last night. The nurse gave him milk with a syringe and he took that, so he is swallowing now, some.

Today has been very hard for me as a mother. Bryce doesn't want to be held, doesn't really want you to even touch him. He just lays there in the bed. He has at times focused on each of us and obviously recognized us, but sometimes in those eyes I see a pleading, I just don't know what he is trying to tell me. He won't swallow anything. He even pools all of his saliva in his mouth and either drools it out or gags on it. His blankets and pillow are drenched in a short time from all the drool. I'm sure his throat is swollen and sore so he is getting a tylenol suppository every 4 hours (since he won't swallow). He might be having a slight withdrawal from the morphine. He is very sensitive to light and sudden loud movements bother him. I hate walking into his room and seeing him lying there awake but not moving. Bryce is usually non-stop when he is awake. Even when he is eating or nursing, something on his body is moving. But not today. He will kick his legs every once in a while and sometimes hug his favorite teddy bear PJ.

On a good note....his breathing sounds wonderful!!! It is weird to hear just how quiet he is now. He is still getting some breathing treatments for the swelling from the tube, but other than that, Tylenol, and IV fluids he isn't getting any medicine. Well they are still tapering the prednisone and he is getting Zantac, but we came in on those so they don't count!

The PICU Drs. and Dr. Woolley both feel that Bryce will be fine moving to a private room so we are now waiting for that to happen. It could take hours to days though. They need room in the PICU so if his room becomes available in the middle of the night they will call us and we will have to go up there and move. I'm excited to be able to be with him all the time. No more visiting hours or visiting restrictions, but I'm still concerned that my Bryce isn't back. The Drs. say that it will take a couple of days for the drugs to completely get out of his system. Their main concern is his breathing and since it sounds so clear, they think we are fine to move. Dr. Woolley said that if he still isn't eating by Monday, they will put another feeding tube in. I really really hope he starts eating by then. If he doesn't something really isn't right and a feeding tube won't be all he will need. Please pray for the swelling to go down in his throat and for the pain to go away. I hate it that my baby is hurting so much he can't even swallow.

Sorry this update is so late. This has been such a hard day for me.

Thank you !!!

My mom wants to thank everyone at Hernando Hills Elementary for the thoughts and prayers that have been sent our way. She misses all of you too! Have a blessed Christmas!

Thank you to all of the Memphis IP folks who sent the water, muffins and basket of goodies!

Thank you to all of the Prattville IP folks for being so understanding and allowing Anthony to be here with us as much as he has been, and for the thoughts and prayers.

Thank you to Holly, Mrs. Cindy and Tracy who came down here to visit with us. We had a great dinner last night and the basket was awesome as usual! My mom ate half the thumbprint cookies last night!

Thank you to my Uncle Tom and Aunt Martha Lynn. They brought some wonderful soups and other goodies that we have very much enjoyed! And thanks to Martha Lynn for meeting the carpet cleaning company at my house yesterday (and for playing with Reagan while you were there!) I can't wait to see the carpets.

Thanks again for coming up here Jennifer! It was great to see you yesterday as usual. Having company during my errands around the hospital was nice.

Uncle Dave Gray, sorry we missed you yesterday. Thank you for stopping by!

Tube is out!

The scope was a success! Dr. Woolley said his airway looked better than he expected it would. Yeah!!! The only swelling was from the breathing tube and that happens to everyone who is intubated. The vocal chords appear to be in the right position to heal properly. They were able to get a larger breathing tube back in than he was expecting so that means the airway is larger than he thought it would be at this point!

They let him recover in the PICU instead of recovery. I got to see him right after and he already looked more like my Bryce than he has in a week. The nurse wanted us to wait in the waiting room until they got him settled again. They turned off the morphine and versed and the paralytic was off before he went down to surgery. We got to go back there after about 20 minutes. He woke up pretty fast and started fighting the restraints (that were on because the tube was still in, and they didn't want him to pull it out). About 15 minutes after we went in there they were ready to extubate him! WOW! I couldn't believe he was ready that quickly. They let him tell them when he was ready, by waking up, moving, and crying. And boy did he let them know! There was no problem with him breathing on his own!! He has already ripped out the two IVs he had, so at 2:00 when we had to leave they were trying to find another vein to put one in. They were going to have to give him something to calm him down some. He was screaming (although no sound was coming out--very hard for me to deal with this) and was holding his breath so his oxygen levels kept going down. No one was concerned with the O2 levels though, they knew it was just because of his fit. They want to wait a while before they let him eat. I know they know what they are doing and they have their reasons for this, but my baby is hungry and milk would make him feel so much better, I just know it! Maybe tonight they said. I HATE having to leave him now. It was hard enough when he was sedated, but now that he is awake and crying, I want to be there with him all the time. I know the nurses are great and will do all they can to keep him calm, but I feel like I could do better!

Dr. Woolley said he can scream and move his head and neck however he wants and it won't hurt the surgery site. I'm so glad to hear this, it was going to be impossible to keep him still and quiet! He said that hopefully we can get a private room tomorrow afternoon. But that all depends on availability (and right now there are none).

All in all today has been great. Very hard for me to deal with seeing him so upset, but seeing him move and seeing his beautiful eyes is amazing. I can't wait until he is acting more like Bryce, but I know that might take a while. Until then I'm going to try and hold it together better than I have been today.

Yeah!

We had poop last night!! 5 times in 2 hrs actually!! I know he has to feel better. The poor nurse that had to change him....glad it wasn't me! She would get him cleaned up and settled in and he would go again, she would start all over again, then there he goes with another one! I started with that because I'm really too nervous to talk about what is coming up today. Just please say a prayer that Dr. Woolley's eyes are ready (he had Lasik surgery yesterday!), that Bryce is healed to perfection, that all goes well in the operating room, that his feeding tube stays in (our nurse said that if it comes out in the OR that they probably won't put it back in down there and depending on when he is to be extubated, they might leave it out altogether. I hate to think he will be hungry on top of everything else he will have to go through today), that when the time is right he can be extubated with zero problems, that he can be weaned off all the drugs easily, and that he won't be in any pain or discomfort through all of this. In my mind today starts the second part of all of this. Getting Bryce back to normal so we can go home!!

I will update after the scope as soon as I can. He is scheduled to go down at 11:00am but that could mean anytime after 11:00 really. The earlier the better because that increases the chances they will try to extubate him today.

Jerica, we still don't really know about getting a private room....the WHOLE hospital is full, kids and families were having to spend nights in the ER because there was no other place for them. I do know that he will have to be completely weaned off the ventilator and can't have drips of the morphine and versed in a regular room. He can get them as needed I believe (but they would try some lesser drugs first) but not continuously in IV form. There is a chance that if the hospital stays full, Bryce will be discharged from the PICU. If he can't get a room and is ready to go home, they would just let us go from there. We aren't expecting to get out of here before next Tues. or Wed. though, and it could be even longer. I think today might tell us more about that though.

Anthony brought our mail back with him and we had so many Christmas cards. It was great opening them and seeing all of your sweet messages! (And cute pictures!--Borden and Jack, I'm taking yours with me to the hospital so Bryce can see your smiling faces when he wakes up!)

Tuesday update

The scope is scheduled for tomorrow at 11:00!!!! I'm so excited that things are moving forward now. Nervous, but excited. We got here this morning and they had turned the paralytic off, so he is moving some. He has his cute red headband back on and it is taped to the bed (not as scary as it sounds) so his head won't buck around when he moves. His arms are tied to his legs to he can't get his hands on the breathing tube and remove it. The restraints aren't as bad as I thought they would be, but Bryce is still in a big fog so I'm sure as they take those off (sedation meds) tomorrow or the next day, they will have to add restraints. It is so good to see him moving, even the little bit that he is. One of us or a nurse has to be in there with him all the time though to hold his head if he gets real excited. I imagine they will turn the paralytic back on when visiting hours are over. It is not pratical for someone to stand there with him when we can't be in there. This little movement is good for his lungs though. His lungs looked good on the x-ray this morning, his blood count was good, no fevers and his heart rate and blood pressure are staying steady. All this is great news! Still no poop though. They have quadrupled the Miralax until he goes. They have a waterproof pad under him right now. I'm sure they are expecting a mess when it actually happens!

Anthony went home late last night and is at work today. He will be coming back this afternoon. It is probably good he isn't here to see Bryce moving, he gets so nervous!!! I'll try to update again tonight, but it might be tomorrow AM before I get a chance.

12/18

I tried to update this morning, but I typed out a long post, then lost it all!! I got so frustrated I just closed the computer down. I'll try again....

He had a good night last night. His heart rate was a little high and oxygen level was a little lower than it has been when we left at 10:00pm. They repositioned him in the bed (sitting up more and propped up on pillows) and that seemed to work. His blood work came back with a good hematocrit count this morning, so hopefully the transfusion did the trick. Still no fevers and minimal chest congestion so that is great news!! Still no poop, but they have given him some medicine called Miralax that should kick in any time.

Dr. Woolley came by around lunch time and said things looked really good. He would like to take him down to the OR Wednesday instead of Thursday to do the scope if he can get on the schedule. He doubts he will be able to, but he is going to try. He said Bryce should be all healed by then (but the scope will tell if he is not). The plan then (whether they do this Wed. or Thurs.) would be to put a smaller breathing tube in while he is doing the scope. Bryce would go back to the PICU and sometime later (hours-1day) they will extubate him (pull the breathing tube so Bryce will be breathing on his own). Bryce will have to be completely off the paralytic and the morphine and versed will need to be decreased before they can extubate him. When they turn off the paralytic they are giong to have to restrain Bryce's hands, arms and legs. They can't risk having him pulling the tube himself. This will be hard to deal with. After this happens there is a chance he would have to be intubated again (if he won't breathe on his own). There is also a chance he might go through withdrawals from the sedation medication he has been on. If that happens he will be put on ativan and methadone to wean him from the addiction.

We are headed up there again tonight at 8:00 so I'm hoping for no change, except for mabye news of a big poop!

Update 12/17

Sorry I didn't update this morning! I didn't have any new news, then.....We got to the hospital and pretty quickly the Dr. came in. I had a bad feeling when I saw him. He told us that Bryce's red blood count was slowly falling and they (the group of ICU Drs.) decided he would need a transfusion. WHAT? My stomach immediatly flip flopped. I was so nervous. Of course he told us not to worry, it is fairly common in the ICU, not risky at all, yada yada yada. I was still scared. I didn't want some stranger's blood in my baby (but thank you to all you 'strangers' out there who donate blood!) It turned out fine (so far). I think if he was going to have a bad reaction to the blood, he would have already done so. His heart rate had also increased over night and blood pressure had dropped a little bit and both of those have returned to more normal numbers since the transfusion. That makes us optimistic the cause of all this (lower blood count, higher heart rate, lower blood pressure) was a result of anemia and not infection. He hasn't had any fevers and very little congestion. They tried for the 3rd time to 'de-paralyze' Mr. Wild and Crazy Duke and it didn't work for the 3rd time. Our nurse felt like they would only try one more time, but the Dr. said they would probably try every day. Who knows. Time will tell, but I really think they could try every day with the same results, he wants out of there! I was able to cut his nails today and the nurse told me where she keeps the vaseline for his lips, so I felt like I could 'mommy' him a little bit more today than I have been in the last couple of days. He is getting 35ccs an hour of breastmilk. That is the maximum they will give him. It is = to 26 ozs a day!!! I don't pump that much on a normal day but luckily I have a good stash in the freezer. He is still pretty swollen and really doesn't look like my Brycie. But of course he is still the cutest baby in the unit!

Knock on wood, we have been allowed to stay back with him during all of the normal visiting hours. Hopefully we will get to be with him from 8-10 tonight too.

Please pray for all the children and families who have children in the PICU. There are 19 beds in there and the sickest of the sick in the state of AL and beyond are in there. Some of the stories you hear in passing are so tragic, so please pray not only for Bryce to heal but for everyone else in there. There is an unspoken bond between all of the parents in there and I feel close to them, even though I haven't spoken to many of them. The lady next to us got to hold her baby today for the first time in over a week, I'm so jealous, but also so happy for her at the same time.

Anthony and I had all of our siblings, their spouses and boys and our parents there at one time today. It was great to see them all and feel the love they have for us and for Bryce.

PM Update 12/16

We've had a good day today. Bryce is doing well. The only issue is a little congestion in his lungs and some mucus in his nose. The mucus is to be expected with the two tubes he now has in his nose, it is the body's natural reaction to foreign bodies (breathing and feeding tubes). The congestion could be a problem if it sits there too long (one reason to 'de-paralyze him--get the stuff moving in there so he can cough it up), it could cause infection or pneumonia. They aren't too concerned with this yet. Fever would be a better indication of infection. They are giving him breathing treatments to loosen the congestion and will do chest compressions also. The nurse said he already sounds better from just one round of these.

They took his ear bandage and the cute red headband off this morning. His ear looks really good, a little bruised and swollen, but better than I had imagined it would look. The incision is very small. He was given Lasix today because of swelling (another very common thing for people who aren't moving but are being pumped with fluids and medicine all day). That did help with the urinating, but to me he still looks pretty swollen. The Lasix should help some with loosening the lung congestion too.

They tried to 'de-paralyze' him again this morning. No go. He still wanted to get out! They might try tonight, but probably will wait until tomorrow morning to try again.

My Uncle Lee and Aunt Amanda came to the hospital today and brought us some great barbeque for lunch. It was great to see them and visit with them, and the food was wonderful too!

Thank you all for reading and praying for Bryce. We love reading the comments that you leave, keep them coming!!

AM Update 12/16

No calls from the nurses last night so I know that is a good sign. I'm on hold trying to call up there now to check on him. We finally got in to see him at 9:30 last night. Visiting hours were supposed to be from 8-10, but again, another 'situation' in the unit prevented us from going in there on time. I can't imagine the families of the children in the crisis situations. At least Bryce is in here for a planned surgery and recovery, we knew what to expect and things are going as planned so far.

Susan, his night nurse, just told me that Bryce deserves a STAR! Nothing new overnight to report. They might try to 'de-paralyze' him again this morning. The morphine and versed have been increased to try and keep him more sedated. The goal is to have him moving a little, 'twitching' or slightly responding to touch and hopefully with the increased sedation medications and with the paralytic turned off, this will happen. 2 hrs. until we can see Bryce this morning! Hopefully nothing will happen to close the unit down......

Kiki and Papaw Duke, thanks for being here for us and Bryce and we can't wait to see you when you can come back.

Thank you to Cappy for staying with us for the last 2 weeks, and she's not going anywhere anytime soon if we can help it!! Thank you also Papaw Ruff for being here this week. My dad is so calm with Bryce, I know just hearing his voice is soothing to Bryce while he is in the PICU.

We want to thank my sister for coming down and helping us get ready for the surgery, and for staying here with us during the surgery. She was a huge help! Blakeley, tell Tessa that Reagan misses her cousin so much!

Thank you to my Uncle Tom and cousin Jennifer for coming to the hospital and waiting with us during the surgery. She has been there for me so much the last couple of months and it means more to me than I can express.

We can't wait to see Buddy and Misty today (Anthony's brother and his wife) they are coming in from Clinton, MS for the day.

Borden, we hope you feel better soon!

Jack, we hope you had a great Birthday and a fun party, I can't wait to hear all about the movie.

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!

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!

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.

November-an eventful month

Nov. 1st--Completely weaned off the steroids!!!
Nov. 2nd-- Stomach virus, short fever.
Nov. 5th--all over body rash.
Nov. 9th--breathing getting tight, not again!!
Nov. 14th--visit to Pediatrician for rash and breathing. Rash turned out to be Eczema (we can deal with that!) She thought his breathing sounded OK, and that we should make it to our scheduled surgery/scope on 11.27.
Nov. 17th--runny nose, cough, sneezing, Bryce's first cold.
Nov. 19th--100 mph to the ER at Children's Hospital, breathing so noisy and tight, lots of crying

Some random pictures

Stenosis

Because the hemangioma was present in utero, it prevented Bryce's airway from forming correctly, causing subglottic (below the vocal chords) stenosis (narrowing). Dr. Woolley would go back and forth about whether or not this was going to present a problem down the road. For so long, the hemangioma was the first priority.

More surgeries

This is when it all runs together. Bryce has had a total of 9 scopes and they have lasered the hemangioma in his airway 4 of those times. We spend the night in the hospital almost everytime they do a surgery. We were able to go on a vacation to the beach in the middle of all this!! yay!!

In July they tried to wean him off the steroids he takes by mouth, but a week later we were back at the hospital because the H was growing again. He has been on steroids from the time he was 8 weeks old, with a break of about 3 weeks total in those 6.5 months.

2 days later

We are back in Birmingham. The 'croup' hasn't gotten any better, worse actually. Dr. Woolley says we will have to give him a tracheotomy so he can breathe. WHAT???? Handing my 9 week old baby over to get a trach was the hardest thing I've ever had to do. That was the longest 30 minutes of my life. But then....great news!!! They found a hemangioma (yes, this was good news this time, it meant they knew what was blocking his airway) and it was small enough to use a CO2 laser on, meaning NO TRACH!!! The laser was broken that day, so we spent the 2nd weekend in a row in the hospital waiting for his first laser surgery.

The first surgery went great, Bryce is a trooper with anesthesia and they got 30% of the hemangioma.

8 weeks old

We get to the Dr. office and she says, "Wow, his breathing sounds really bad" And "How long has this hemangioma been on his lip?" Hemagi what??? Never heard of it before, so how can my baby have one, two, or three, or FOUR! She said "It sounds like he has croup, but he is so young for croup, just to be sure go get some chest x-rays done right now." On our way out, she said "Not to scare you, but I remember one case way back in my residency where an infant had multiple hemangiomas on her face and one in her airway. I'm going to call an ENT I know at Children's Hospital in Birmingham and get his thoughts on this." The chest x-rays were fine, no lung problems. We get back to the Dr. office and she immediately sends us to Birmingham to Children's Hospital to see this pediatric ENT. Dr. Woolley.

Dr. Woolley is in clinic that day so we wait and wait and wait, all the while worrying, we are at a Children's Hospital after all. Never thought I would be there with my 8 week old baby! We finally meet Dr. Woolley and he does a shorter scope (through the nose) but couldn't see anything. He admitted us to the pulmonary floor at the hospital for the weekend.

Monday he did the first of many DLB (Direct Larangoscopy and Bronchoscopy) or 'scope' as I will refer to it here (Bryce has to go under general anesthesia everytime they do this scope) and said, good news, it is croup (no hemangioma being the good news). We went home from the hospital the next day.

Anthony Bryce Duke, Jr.

I should have started this blog back in May, when everything started, but since I didn't I"ll get everyone up to speed now. Bryce was born on March 15, 2006 weighing a healthy 7lbs. 3oz. We all came home from the hospital on St. Patricks day. About a week later, we noticed his bottom lip looked 'chapped', and had a 'blister' on it. A couple of days before his 8 week check-up, he developed a 'cold'. We were worried about this cold, because we were supposed to go on our first family vacation to Memphis that weekend. We wanted the Dr. to give him his fist set of vaccines so he would be all good to go!