Children's Visit...First Check Up

It's Thursday afternoon and we just got back from our first check up visit at Children's in Little Rock. This is our first of our every two week visits.

There is more great news to share!!!! Brycen had an ECG done on his heart and had a chest X-Ray taken. Both were perfect! His heart is beating normally and is of good proportion and there is no fluid in or around his lungs. Dr Fontenot told us, "treat him as you would any child now....he's fine" In fact, the news was so good that we no longer have to have weekly doctor visits in Fayetteville and our next appointment at Children's is in 3 MONTHS!!! Dr Fontenot said that at this rate we will probably only have to visit once or twice a year after the next visit.

While we were at Children's we went to check on our buddy Caden. We haven't heard from his family, but the nurses told us that Caden was discharged last week. We hope and pray that his recovery goes as well as Brycen's from here on.

We took some pictures this week and I haven't downloaded them all but do have a few to share.


His scars are no longer scabs, so he got to take a real bath. He loved it!






We always say our bedtime prayers. May God bless each and every one of you that has prayed and supported us through this all and may he continue to work his miracles in the children and families that remain at Children's Hospital.

Many of you have wanted to come visit us, but we haven't been able to have visitors because of infection risk. However, because of the good results, WE CAN NOW HAVE VISITORS. Please feel free to call or come visit anytime (you can even hold him)!

I will post more pictures this weekend.

Is it day or night???

It's Tuesday evening and Brycen continues to show improvement, though he's not exactly tipping the scales. We went to the pediatrician today and his weight was only up 4 ounces from last week. The doctor (and mom and dad) would like to see a little more than that, preferably an ounce per day. But his eating habits have gone from eating every 3 hours to wanting to eat every 2 hours and in the middle of the night every hour. He definitely has his days and nights mixed up! We're hoping this is a sign of the first little growth spurt infants usually go through.

Mom and dad have been tired, but thanks to Granny Lu and uncle Michael, we hope to get some rest the next couple of days. We've had a pretty non eventful week just trying to keep Brycen content and trying to cat nap as he does, but have managed a few great photos.

Your prayers and support continue to pour in and we thank you once again! Please remember Caden (we haven't heard any news on him since last post) and SSG Feeny in your prayers.

Though we don't have posts everyday now, we WILL keep the blog going. Too many of you have enjoyed it and we appreciate all of you who continue to celebrate in our success.

Here we are sleeping in the Big bed with daddy.

Enjoying some couch time during the U.S Open.

He loves for mommy to rock him!

At Home Update.....Thursday night

There's no place like home! We got home late Monday night and have started to settle in quite well. Brycen has had a visit to our pediatrician and has also had an in home visit from home health. Children's has asked that we keep two visits per week before we return to Little Rock to make sure that he is gaining the right amount of weight. So far, so good. He is back above birth weight and is eating like a champion. He's done well enough that he thought it would be a good idea to go out and get in that first trip to Lowe's this afternoon. Now if we can just get day and night figured out, we'll be doing great. Here are a few pictures since we've been home.

We also have an update on Caden! He is doing much better and they hope to be going home soon. Please keep him in your prayers!

WE'RE HOME!!!!!

It's 9:30 and we are home and settling in. Brycen has eaten well and is sleeping like a rock. We took some pictures right before we left Children's and wanted to share a few.

Here we are dressed and ready for home.

My Angel and My "Angel One"

I promise this is leaving the hospital, not going to tailgate (yet).

This time Brycen had to travel by car, not helicopter.

They say "most accidents happen less than a mile from home." I don't think they were talking about this kind. I'm glad we were exiting into Springdale.

So we made it home safe and sound. Dad never knew he could be so nervous driving. We realized on our way home that we failed to get the contact information of Caden's family. At last report, Caden was still in CVICU under monitoring for his brain, but it has been discovered that his vocal cords have been paralyzed from the ventilator and he is having trouble eating because he can't swallow. They were going to have to place a feeding tube in him and may have to do more surgery to correct the problem. We may never know Caden's status ever again, but please keep him and his family in your prayers. If we ever find out during any of our return check ups, we will let you know.

We've said it a thousand times, but a thousand times over still wouldn't be enough. We can't thank you all enough for all the prayers, visits, and support each of you have given us. Times like this aren't easy, but they sure are made easier with great friends and family like we have in all of you.

We also can't thank the staff at Children's enough. These miracle workers became family to us in a matter of hours. To each person we had contact with, from nurse technicians to surgeons, we will never be able to repay you for the miracle you worked in our lives, but we will pray that God will pour his blessings upon you and yours forever more!

GOING HOME!!!!!!!! 3:30 Monday

Brycen has been a champion since the minute his helicopter left the ground. He has taken heart surgery and kicked its butt and now the doctors (and I think we've seen everyone of them here) say he's ready for home. We are waiting on all the paper work to clear and we're off to Springdale! Thank you all so much for all of your support and prayers. We will post some pictures once we get home.

We love you all!

Sunday Update 3:30

We met with Dr Fontenot this morning and he says Brycen is recovering as fast and as well as anyone he can remember. The nurses here can't believe he is doing so well. At 3:00 he just had his last IV removed!!!! He is only on the heart monitor and pulse/ox monitor (what everyone has when they're in a hospital). He continues to eat well and is starting to gain some weight. I think at the last weigh in he was at 7lbs 4oz, that's a big change from 6lbs 10oz 5 days ago. Our going home outlook appears to be either tomorrow or Tuesday. We are so blessed that such a bad situation has gone so smoothly.

We also have an update on Brycen's friend Caden, from Jackson, MS. Caden's bleeding in his brain has stopped and they're hoping it's done for good. All signs seem to point that way. He remains in CVICU so that they can monitor his brain very closely, but he has recovered well from his heart surgery. All of his tubes and his ventilator were removed yesterday. His mom and dad say he looks so much better.

Both of our families thank you all for all of your prayers and support!!

Here is a picture of Brycen's room. Dad is still giving nurse Cydne fits on getting the XBox working for him :)

Brycen's Room

Well, the blessings keep coming. Brycen has had such a great past two days that this afternoon we were all 3 placed in an "almost home" room. We have to stay with him in a room so that when he wakes up he can be fed. This is continuing the trend of him eating on a regular basis for 24 hours. The doctor said tonight we're looking at possibly going home Monday.

Our new room doesn't have quite the comfort of the Residence Inn, but at least we're with Brycen........and at Children's every room has an X-Box 360. Dad is excited about that.

It's been another great day, filled with answered prayers. Thank you all so much! Please remember to keep the other kids here lifted as well as our men and women in Iraq.

Saturday Update 11:30 am

Brycen had a great night and is having a great morning. He ate for about 20 mins when we first got here. He's been snoozing since then and is just content as can be. It seems that we're in one last holding pattern until he can start to show us he's ready to eat consistantly ever 3 to 4 hours. Hopefully that will come early this week.

ANOTHER Great Day!!

Praise be to God! Our little miracle is on the road to a record setting recovery. He tried to nurse 4 or 5 times today and actually ate 2 times. I told him he's just like his dad, two good meals and a few snacks is always the way to go. He is doing great!!

Christy and I have felt the world lift off our shoulders this week. We made it through surgery, then through CVICU and now he's kicking NICU in the pants. Every time we go back to visit him we get to hold him! We couldn't be more pleased.

God has definitely used this child to draw his people closer together. Even through all of the little "ups" we've had through his recovery, one of our brightest moments came today. Brycen gained a very special friend today.......SSG Christopher Feeny emailed Brycen all the way from Iraq to share the inspiration that Brycen and God have given to him. What an inspiration he has been in return to us.

So as we lay our heads down tonight, let us give glory to God for what Brycen has been able to overcome and let us remember those who serve this country in which we have the freedom to live our everyday lives, especially for Mr Feeny. And together may we all fight the Good fight.

Thank you EVERYONE for every single ounce of support and every prayer you have lifted!

Update 3:15

Brycen keeps getting better and better. We just met with the cardiologist again and are starting to talk "going home." Brycen needs to start waking up more and eating a little more, but he's showing signs that will happen sooner than later. He is currently having the rest of his bandages removed from his abdomen (where all those chest tubes were coming from). If we can keep the ball rolling and start to wake up a little bit more for eating times we may be going home early next week.

We've been getting to hold him all day today. Tonight he even gets to have a bedtime story....so daddy's going to read him the Daily Racing Form for tomorrow's Belmont Stakes.

Where's Brycen???

What a difference a day makes! All of the stress and lack of sleep finally caught up to daddy, who came down with a stomach bug, but Brycen picked up the slack.

Christy shared the news of improvement with me as the day went on yesterday, but saved the best news for this morning. As we got on the elevator, we pushed button 3 (NICU) instead of 4 (CVICU). Surprise!!!! Brycen is back in NICU and has 90% of all the tubes and wires removed. No ventilator, no oxygen! Just basic IV's for a couple of medications that they are trying to ween him off of. He also lost his head monitor (the silver thing that dad called his football helmet). He is a totally different kid today, even trying to nurse at times! If it wasn't for the scar, you could hardly tell he's been through all of this.

Here is a picture to show his progress. This was taken before they removed his "helmet." He's been all eyes and smiles this morning.

One Week Birthday

Today the blog author has a stomach virus so this short update will have to do. It has been a great day. They removed Brycen from the ventilator and from his oxygen. He is breathing great on his own. He has cried and is sucking his pacifier which are things you look for after removing the ventilator. His mom got to hold him today, YEA!
Thanks for all the prayers!

CAUTION........Picture Posted!

It's 10pm and we're back at the hometel, the Residence Inn has been great to us and so has Children's Hospital.

Brycen had a great day. All 3 chest tubes were removed as was his catheter and dialysis tube. He looks MUCH better this evening than he did this morning. Once the swelling goes down he's really going to look good. He continues to be responsive to our voices and has a death grip when we put a finger in his left hand. It looks very possible that we could try and take the ventilator off tomorrow. God is truly busy answering all of our prayers. He has done so well that we have decided to post of picture of him after he had the tubes removed. It as at the bottom of this post (hopefully I can leave some space so that you don't have to view it unless you want to, but here is your caution).

Our request tonight is that in your prayers for Brycen you please include his friend Caden. Caden is from Jackson, MS and had the same type of coarctation that Brycen had. Caden and Brycen were in surgery at the exact same time Monday, in fact they were the only two heart surgeries on. Unfortunately, Caden started bleeding in his brain today and is suffering from seizures. He truly is in need of God's awesome work.

We appreciate all you all have done!!!!!! (Picture follows)

You can see the little "patches" just below the scar. Each of those was where a tube was.

Update 5:30

The chest tubes have been taken out and a few blood pressure meds have been stopped. Brycen looks like a new kid without most of the tubes and wires. He is doing great. The next 8 hours are crucial as to how he will adjust without the tubes. Then they will look at taking him off the ventilator in the next few days.

We can't say it enough, but we thank you all sooooo much for all the prayers and supports. Lets keep 'em going!

Update 11:30

Brycen is definitely a fighter. They have had to give him a slight bit of morphine because he's wanting to wake up a little too much. I just went back there to see him and his grip on our finger is getting stronger and stronger. As I leaned down to kiss him he opened his eye for about 3 seconds. I kissed him again and his lips make a smacking sound. It's moments like these that are keeping us marching on. Sometime this afternoon, they nurse practitioner will remove his chest tubes. I will update when we see him after that. Hopefully before too long he will look good enough that we can post some pictures. We have held off on that since we've been in CVICU because the tubes and wires are very hard to look at. It won't be long and he'll be looking great.

Morning Update 8:30

We just arrived at the hospital and went to see Brycen before we sat down. He had a great night and is having a good morning. They are more than likely remove all of his chest tubes today!! This will leave him on just the ventilator and with just a couple of IV's. That is great news to start the day!

We hope you all have a great day as well, and remember....God gave it to you!

Tuesday Wrap Up 9:30pm

We are back at the hotel for the night. Brycen has had a pretty darn good day for a little guy that just went through such a traumatic surgery.

Last night and this morning, our concern was his blood pressure and blood gases as both were too low. He was given medicine to help control both and the medicine has slowly but surly started to work. Hour by hour, with each visit we had he started looking better and better. In fact once you get past all the tubes and wires he looks alright. He's got quite a bit of swelling in his face, especially his eyes, but that is expected. His fluid intake to output ratio last night was +250ml. This afternoon it was dead even. Tonight they expect to be in the negative range and that will start to take the swelling away.

The most surprising thing right now is that he keeps trying to overpower the ventilator. Earlier today the doctor and nurse didn't really want this happening, I think because of his blood gas levels, so they had to sedate him just a tad. But as the day went on, he still kept overpowering it. So they are going to let him "try it out tonight" and see just how much he can do on his own. He's not off of the vent, but it will do a lot less for him. This is starting to make him cranky, but that's actually what we want to see for a day or so. Then we know he's totally responsive and starting to wake up for us!

It's been a pretty good turnaround from 24 hours ago. Especially when the nurse that he had last night came over to his bed tonight while we were there and said "I really thought today was going to be a very tough day for him, it didn't look very good last night." That is promising news, and our hope and prayers will be that the next 24 are just as good.

We are off to bed. I will post tomorrow morning once we get a few visits in. Check in around the 10:00 hour unless you hear from someone on the "update posted" text message tree.

Once again, we can't thank you enough for all everyone has done for us. The prayers are working wonders and the gifts and visits are all greatly appreciated!!!!

Update 4:10

I just got back from another visit with Brycen. Long story short, Brycen is doing so well that mom has gone out to buy some needed supplies from the local Target (dad thinks this is more "retail therapy" related). He keeps looking better hour by hour. Blood pressure is back to normal and blood gases are "ok" now. If the progress continues we may get to take out some chest tubes in the next day or so.

There is a shift change at 7 and he is supposed to get the same nurse tonight that he had last night. We can't wait to see what nurse Daryl has to say about the improvement since he saw him at the worst time.

I'll keep you posted probably around the 9 or 10 o'clock time frame.

CVICU UPDATE 2:20

We arrived at 8 this morning and Brycen was starting to get back to "normal" (for CV patients) with his blood pressure and gases. We have gone back once an hour since then and he continues to improve with each visit. On our first visit back he recognized Christy's voice right away and started trying to move his head and arms. He is now recognizing both of our voices and is starting to kick slightly when he hears us. His nurse told us that while we were gone for lunch they had to give him more morphine to keep him sedated. The reason is because he started over powering the ventilator and was trying to breathe on his own. We need him to do that, just not quite yet :)

So far, so good. We still have a critical afternoon and night ahead, but if the trend continues things are looking up. I will try to update more often now. I was able to connect to wireless here in the waiting room.

Don't forget to praise God in someway today!

Morning Check

It's 7:30 and we're about to head up to the CVICU to go see Brycen. We should be there just in time for visiting hours to open at 8.

Brycen's blood pressure continued to drop after we left last night. I called right before we went to bed (just after I posted) and they had started another medication to try and get the pressure back up. Christy and I both slept soundly, but woke up at 2am and thought we should call and check on him. The nurse said that the new med that they had started was starting to take effect and he was looking stable "for now."

We haven't heard anything this morning and we are assuming no news is good news. We didn't call because of the shift change, so we're about to head that way.

Not sure how often I can post today, but will do so as time allows. Just remember that prayers are better than blogs anyway :) Let's pull Brycen through this!

Surgery Day Wrap Up

It's 10:00 and we are back at the hotel to get some much needed rest. Obviously this has been a very taxing day and we need it pretty bad. Before we get to sleep I wanted to give a good wrap up of what all happened during surgery.

The CT scan today revealed that coarctation (narrowing) of the aorta was our problem. Interruption of the aorta and/or the PDA valve was not the case. It was determined through the scan that what was being called an irregular shaped aorta was actually the PDA valve protruding into the aorta. This was the valve that should have closed after birth but ended up being the life saver by staying open. It was protruding into the aorta just after the coarctation point. Because of this protrusion and because of the length of the coarctation in the aorta, the best option for surgery was a midline incision through the sternum with the use of a bypass machine. During the surgery, Dr Imamura cut out the section of coarctation and used a "bovine pericardial patch" (also known as a piece of cow heart) to make the aorta complete. He then cut out the PDA valve since it is no longer needed. As stated earlier, everything went "textbook" during the short 3 1/2 hour procedure. We are so blessed that everything went so smoothly.

Brycen is now in CVICU (cardiovascular intensive care) for recovery. The next 24-48 hours are CRUCIAL for his full recovery. When we got to go back to his room before dinner Brycen was doing great. To mom and dad he looks scary and not so good, but to the doctors and nurses he looks very good. We returned for another visit after dinner (we're only allowed 10 mins every hour due to INTENSIVE care) and decided it would be best that we head home. Between our two visits, Brycen has become a tad unstable. His blood pressure took a pretty big drop and his blood gases came back a little low (blood gases measure how your other organs are performing). The doctor told us this was nothing major and is NOT unusual at all. They see many changes in the first few hours of recovery and "just have to find the combination that works." They made a few minor changes and were taking new blood gas tests as we were leaving. They expected them to come back a little better since his blood pressure was starting work its way back to normal. The doctor reassured us this wasn't anything to panic about and informed us that Brycen is hardly on any medications and is pretty much doing everything on his own. "We still have plenty of tricks left up our sleeve," is what she told us as we left.

We ask that the prayers for Brycen and every child at Children's continue and don't forget to praise God for the miracle he brought us through today. We need a GOOD next 24-48 hours before we can start to see the light at the end of the tunnel.

We will update as often as we can tomorrow. I expect another "holding pattern" for a few days.

Thank you for all you have done for us!!!!!

Recovery

Recovery is underway. Brycen is stablized and WE GOT TO GO BACK AND SEE HIM!! The poor guy looks pretty beat up, but as they have been all this long road, his vitals are excellent. CVICU is overcrowded right now, but they are moving some kids around. Until then, Brycen is under recovery in the operating room. What a miracle this all has been! Thank you again for all your prayers and support.

We love you all!

Update 4:10

Surgery is complete!!! We just talked with Dr Imamura and the surgery went very well!!!! Brycen remains sedated but is very stable and did excellent through the procedure. He is being transferred into recovery and then will be placed in CVICU for at least 5-10 days. From there we will go back to NICU. Of course the possibility of infection and many others exist, but we'll continue to pray for a smooth recovery.

I will try to post after we get to see him in a few hours.

We will remember this day forever and we will always know that God made it happen. Praise His name!!!!

Surgery Update 2:30

Brycen has been through his CT scan and underwent surgery starting at 12:30. We are receiving hourly updates from a nurse in the room.

Today has been a good day so far. Dr. Imamura met with Christy and I just after the CT scan and the good news has already started flowing. Brycen definitely has coarctation of the aorta and there is NOT any interruption at all. We thought this was going to lead to the 9 Minute fix, but the Dr wants to make sure of the exact size of the coarctation to "patch" it instead of "balloon" it to make it stretch. So, he has been put on the bypass machine and the procedure will take several hours but as of our first update from nurse Richard everything is "textbook." Now if that doesn't make you think prayers aren't being answered, try this one out. Brycen was on schedule to have surgery at 12:00. Right as the Dr was ready to perform the incision and child on floor one had a life threatening emergency. Everyone in the operating room had to leave to take care of that child. We were expecting an hour delay, but God took care of the other child as well and Dr Imamura and staff were back and started at 12:30. God is present in Children's today!!!!!!

And more good news!!! We just got another update as I was typing and the actual coarctation is fixed. Brycen is starting to come off of the bypass machine and everything is still textbook. Now they will continue to monitor the heart through the incision and make sure all is well with his heart.

Keep the prayers and praises ascending!!!

FAITH not fear!!!

I didn't think I would post again today, but we came back to the hotel to get some sleep earlier than we originally thought. We had a few developments after lunch that are worthy of sharing, and tomorrow we might not have time to update before the CT scan and surgery.

We met with the anesthesiologist after lunch today. He explained exactly what would happen from his side of the surgery and gave us all the details if the procedure has to be a complete bypass or if it was a side entry "balloon" surgery. A complete bypass will be necessary if the CT scan shows that the aorta is interrupted or is shaped irregular. This surgery will be very extensive as major repairs would have to be made to the aorta and will last from 6 to 8 hours.

If there is not any interruption or irregularity of the aorta and all we're dealing with is coarctation (narrowing) of the aorta, the surgery is done from his side and they use a "balloon" to widen the constricted space. This procedure takes this particular doctor 9 MINUTES.

Dr. "Michi" Imamura will be the surgeon. Please pray that God will bless Dr. Imamura and hide him behind the Lord's hands tomorrow. We are approaching tomorrow with FAITH not fear!!!

The highlight of our stay happened just after we talked with the anesthesiologist. The nurses (Cydne & Dana) had seen enough of our sadness and went above and beyond for us today.......they held all the wires and tubes together and let us hold Brycen!!!!!! It was a moment we will never forget. We are so blessed to have such wonderful people taking care of all 3 of us!

The pictures are of us holding him today and then of Cydne holding him up for us when he opened those little eyes. We are off to bed!

Thank you sooooooooo much for all you all have done. We could not get through this without you. May God bless each and every one of you and may He be present in Brycen's life tomorrow.

We love you all!!!!!

Sunday Update 1:45pm

We came to see Brycen at 4 this morning and he was sound asleep as we had left him last night. He was doing so well, we decided to head back to the hotel and get some more sleep. When we came back at 11, we had just missed the on-call doctor but the nurse was able to fill us in on the agenda.

The CT scan will take place in the morning and then the computer model for his heart will be built from that. As soon as the model is complete he will go into surgery tomorrow afternoon. We will talk with all of the staff involved in the surgery in the morning right after the scan. They will inform us of the entire procedure and what all is involved.

Brycen remains as comfortable and stable as a kid can be. He even got to have one IV port removed from his hand so he's getting to suck on those fingers he's been looking for. He's doing awesome!! We're going to go back in and see him and see if we can get him to open those little eyes we like to see. I will only post today unless there is a major change because the "holding pattern" still continues and Christy and I want to spend all the time we can with him before the scan and surgery.

Obviously tomorrow is the BIG day, so keep those prayers going! We can't thank all of you enough for all you have done! We love you all!