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surveyorshawn
06-08-2009, 12:58 AM
My only son was born on Nov. 11 with a large hole between the 2 ventricles in his heart, and both his ventricular valves on one side, instead of one on each. Also, the left one is significantly smaller than it should be. Needless to say I have been hunting for a miracle instead of for deer this year. The doctors have given us a good chance with survival after surgery. He is eating well and gaining weight, which is far above what they expected him to be doing. He will have open heart surgery on Monday, June 15 at Tulane University Medical Center in New Orleans. The doctors expect him to be in the hospital for 2 weeks after the surgery provided everything goes well. We will stay in the hospital's medical motel for the 2 weeks while he is in ICU & recovery, and have been saving for the room & food as we will obviously be off work for that period of time. Please remember us. His name is Benaiah (we call him Ben) David O'Steen. His name comes from 2 Samuel 23:20: "Benaiah chased a lion down into a pit. Then, despite the snow and slippery ground, he caught the lion and killed it." He is chasing his first lion now.

http://i634.photobucket.com/albums/uu62/akshunter70/6-6-09a.jpg

MattHughesRocks
06-08-2009, 03:09 AM
Beautiful name.You are all in my prayers :)

Primadawn
06-08-2009, 04:27 AM
Beautiful name--beautiful baby--will be praying for him and you all!

cubsfan47
06-08-2009, 04:27 AM
Beautiful name.You are all in my prayers :)

What she said.

lyndsey823
06-08-2009, 05:13 AM
he is such a doll!!! you are all in my prayers!

Miss Foxy
06-08-2009, 01:51 PM
Your son and family will definitely be in my prayers...Give him a kiss from us...:wink:

CAVEMAN
06-08-2009, 01:57 PM
Good lookin kid! I will put him in prayer.

Llamafighter
06-08-2009, 02:18 PM
You got it! please keep us posted on his progress. God is watching over him and your family.

Crisco
06-08-2009, 03:14 PM
WAR BEN! stay strong little buddy.

Tyburn
06-08-2009, 06:10 PM
:) I love the name, thats something special. Of course we will all pray, please keep us updated :)

Maglorius
06-08-2009, 07:13 PM
Love your sons name and where you came up with it. I am praying for Ben and his family.

Mac
06-09-2009, 01:17 AM
My Heart melted when i saw that picture. I will be praying for Him and your family . If he needs anything dont hesitate to ask .

matt hughes
06-12-2009, 07:10 AM
will pray for Ben and the family.

Blmfighter
06-12-2009, 01:13 PM
I will pary for Ben and your family.

Llamafighter
06-12-2009, 01:45 PM
I just noticed his shirt in the picture:)
He's going to turn this lion into a kitten!

surveyorshawn
06-13-2009, 02:31 AM
We went to the hospital today for Benaiah's pre-op appointment. They did bloodwork on him and found out that he has some kind of viral infection, and cannot risk doing the heart surgery now as it may cause that infection to enter the heart, so they have postponed the surgery until he is over the infection. We have to get bloodwork done again Wednesday (June 17th) to see how it is. The infection cannot be treated because it is viral and just has to run its course. This can actually be a good thing, because it gives us more time to financially prepare for the surgery and the time off from work for his recovery, as I will be able to work (hopefully for an additional 4 weeks, as we are requesting the surgery be done mid July now). I have included a few pics from today's visit:

This is Ben in the x-ray tube as they prepare to do his chest x-ray. We hate this part the most, as he screams terribly because of being confined in the tube and immobilized

http://i634.photobucket.com/albums/uu62/akshunter70/6-12-09a.jpg

Here is another view of him in the tube:

http://i634.photobucket.com/albums/uu62/akshunter70/6-12-09b.jpg

Here he is "helping" the ultrasound tech as she attempts to run the probe over his chest to view his heart. He was smiling at her and giving her "the look". He is such a flirt!!

http://i634.photobucket.com/albums/uu62/akshunter70/6-12-09c.jpg

We also learned Wednesday that he is most likely going to require eye surgery when he becomes a year old (he turned 7 months old the 11th of June), because when he relaxes his eyes the both turn out toward the sides (the opposite of being cross-eyed). Most likely it would only lead to depth perception problems, but the surgery should prevent that.

VCURamFan
06-13-2009, 06:15 AM
Shawn, I'll definitely be praying for little Ben. (Good choice in name, btw!)

NateR
06-13-2009, 06:24 AM
The pictures of him crying in that x-ray tube are just heartbreaking. :cry: Of course, it's tough for him because he has no idea what's going on; but it must be a million times harder for you to have to put him through that.

I'll definitely be praying for him.

Bonnie
06-14-2009, 06:21 AM
What a little trooper and inspiration! This little lion slayer is already in my prayers. :)

mikthehick
06-15-2009, 12:51 PM
Same as aforementioned for you and Ben, Shawn. I'm praying that God blesses you and gives you peace and a warrior's heart for the next few months. Please keep us updated as the new surgical date comes next month.

CAVEMAN
06-16-2009, 02:38 PM
As one father to another...........that would definitely be hard for me to watch. You and Ben have been in my prayers and I'll continue to pray that this surgery will be successful and Ben will have full recovery and healing. I'll also pray for you to have peace in this difficult time.:) Give the champ a hug for us!

surveyorshawn
06-18-2009, 05:50 PM
Benaiah had another Blood test yesterday and a checkup, and the viral infection is gone. We are awaiting word from the pediatric cardiology surgeon for a new surgery date now. Here are some pictures from his appointment:

http://i634.photobucket.com/albums/uu62/akshunter70/IMG00184.jpg
Waiting for the Doctor

http://i634.photobucket.com/albums/uu62/akshunter70/IMG00188.jpg
Getting the exam!

http://i634.photobucket.com/albums/uu62/akshunter70/IMG00189.jpg
Waiting for the nurse to draw a blood sample

http://i634.photobucket.com/albums/uu62/akshunter70/IMG00191.jpg
Awe! Mommy is trying to comfort him!

http://i634.photobucket.com/albums/uu62/akshunter70/IMG00197.jpg
Exhausted from all the poking & prodding

Miss Foxy
06-18-2009, 08:13 PM
Benaiah had another Blood test yesterday and a checkup, and the viral infection is gone. We are awaiting word from the pediatric cardiology surgeon for a new surgery date now. Here are some pictures from his appointment:

http://i634.photobucket.com/albums/uu62/akshunter70/IMG00184.jpg
Waiting for the Doctor

http://i634.photobucket.com/albums/uu62/akshunter70/IMG00188.jpg
Getting the exam!

http://i634.photobucket.com/albums/uu62/akshunter70/IMG00189.jpg
Waiting for the nurse to draw a blood sample

http://i634.photobucket.com/albums/uu62/akshunter70/IMG00191.jpg
Awe! Mommy is trying to comfort him!

http://i634.photobucket.com/albums/uu62/akshunter70/IMG00197.jpg
Exhausted from all the poking & prodding
Unfortunately I cannot view the pictures here at work, however without even viewing them I am glad to hear he is making progress. I also commend you and mommy for being such loving parents and my prayers are with your entire family. Your son is a fighter and he is so brave he doesnt even know it..He's my lil hero:wink:

Llamafighter
06-18-2009, 09:16 PM
I hope they get the green light so he can get fixed up and put all this behind him. He is one cute kid, and my prayers continue to go to him. I'm sure you feel every one of those pricks and prods along with him. that has got to be tough.
Take care!

VCURamFan
06-19-2009, 02:01 AM
Shawn, that is fantastic, brother! I'm really stoked for you & your family that he's beaten this cub. Now that the tune-up fights outta the way, I'm sure he can't wait to get his hands on that lion!

surveyorshawn
06-21-2009, 12:59 PM
We are still waiting on a date for the surgery. I am really hoping it is going to be 3 or 4 weeks from now, because due to the economy, we have had to rely on some of the money we saved to survive. The only cost to us will be staying in the hospital for the 2 weeks and food while we are there, in addition the the effects of being out of work for those 2 weeks. We are not asking for donations, and I know God has everything under control. It is kind of like Elijah wetting down the altar before asking God to burn up the sacrifice. It is still very stressful, and we definitely ask for your prayers as our faith is tested during this time.

Bonnie
06-23-2009, 06:34 AM
We are still waiting on a date for the surgery. I am really hoping it is going to be 3 or 4 weeks from now, because due to the economy, we have had to rely on some of the money we saved to survive. The only cost to us will be staying in the hospital for the 2 weeks and food while we are there, in addition the the effects of being out of work for those 2 weeks. We are not asking for donations, and I know God has everything under control. It is kind of like Elijah wetting down the altar before asking God to burn up the sacrifice. It is still very stressful, and we definitely ask for your prayers as our faith is tested during this time.

Shawn, can y'all request that his surgery happen at that time, or are y'all strictly having to follow the doctor's schedule due to everything involved with Ben's surgery?

F34R
06-23-2009, 11:44 AM
We are still waiting on a date for the surgery. I am really hoping it is going to be 3 or 4 weeks from now, because due to the economy, we have had to rely on some of the money we saved to survive. The only cost to us will be staying in the hospital for the 2 weeks and food while we are there, in addition the the effects of being out of work for those 2 weeks. We are not asking for donations, and I know God has everything under control. It is kind of like Elijah wetting down the altar before asking God to burn up the sacrifice. It is still very stressful, and we definitely ask for your prayers as our faith is tested during this time.
I know you're not asking for donations, but could I offer one? I don't have much but I will donate what I can. Please let me, and anyone else here, know where we can send donations. Please.

surveyorshawn
06-23-2009, 01:32 PM
Shawn, can y'all request that his surgery happen at that time, or are y'all strictly having to follow the doctor's schedule due to everything involved with Ben's surgery?


Bonnie, I am not sure, but I am asking the doctors if we can wait. The problems are 1) they don't want to wait too long because Ben is not gaining weight like he was, and his heart problem is starting to make him some weaker and 2) we have to have a date that the entire surgery team can be there to do it. In addition to the pediatric cardiologist who sees Ben, there will be 2 pediatric cardio surgeons and an anesthesiologist who they have specifically said is the one they will use for the surgery.

surveyorshawn
06-23-2009, 01:46 PM
I know you're not asking for donations, but could I offer one? I don't have much but I will donate what I can. Please let me, and anyone else here, know where we can send donations. Please.

Thank you for your post and your offer to help. This is very stressful, and I am the kind of guy who likes to have things "figured out" and "under control." I feel totally helpless and lost in this situation as everything is obviously out of my control. We had set aside money for the hospital stay and I thought I had everything taken care of, but when we went, he had an infection, and they had to postpone the surgery. I am a land surveyor and own my own business, and had no work scheduled for the time he was supposed to be in surgery, so now we have had to use some of the savings just to survive, and due to the economy, we aren't getting many calls for work either. After talking it over, we have decided that we will accept donations for the hospital stay and subsequent recovery period. It is not an extremely expensive stay, we can stay at the hospital for $50/night plus food. There is a kitchen in the room, so we will bring groceries to lessen the cost of eating. We are penny pinchers, and do not intend on eating out or at the cafeteria. The doctors have said that we should expect to be in the hospital for about 2 weeks after the surgery.

If anyone does want to help, you can PM me and I will give you the address, etc. We appreciate every prayer that has been offered up for Benaiah, and we do trust that God has everything under control, even though we feel so out of control right now.

Bonnie
06-23-2009, 03:34 PM
Bonnie, I am not sure, but I am asking the doctors if we can wait. The problems are 1) they don't want to wait too long because Ben is not gaining weight like he was, and his heart problem is starting to make him some weaker and 2) we have to have a date that the entire surgery team can be there to do it. In addition to the pediatric cardiologist who sees Ben, there will be 2 pediatric cardio surgeons and an anesthesiologist who they have specifically said is the one they will use for the surgery.

I thought that might be the case. I know you are on overload right now and you are already feeling like you have no control over what's happening, but just let God take these burdens for now. Someone told me recently, "Keep your eye on Jesus and not the storm." Ben and your family will continue to be in my prayers.

May God's peace be with you always! :)

TexasRN
06-23-2009, 11:53 PM
I am going to sound like a huge jerk here but I am going to butt in anyway and just take the heat of being unpopular for this. We cannot have anyone soliciting donations on this site. I know that is not what happened in this case. It was freely offered by a kindhearted person for someone who needs the money for a sick child. I do understand that. Truly. I've done the whole hospital parent thing (my son should not be alive today) so I feel the pain of the family hurting here. I just do not want a precedent started here where we set our members up for being preyed upon by scam artists. Again, I am not saying I believe this to be the case in the situation posted here. So from now on, if anyone feels like God is leading them to help another member here we should keep it strictly to PMs. This is for the safety and good of everyone here.

I wish the family of that beautiful baby boy all the best and I know I sound like a jerk but sometimes, bad people take advantage of good people. Again, I do not doubt the reality of the posts or pictures. Just doing my job.


~Amy

Bonnie
06-24-2009, 12:29 AM
Understood. :) I know you are trying to protect "everyone" involved especially Shawn and his little Ben.

Thank you for watching out for all the good-hearted ones here. :)

TexasRN
06-24-2009, 12:31 AM
Understood. :) I know you are trying to protect "everyone" involved especially Shawn and his little Ben.

Thank you for watching out for all the good-hearted ones here. :)

I love you, Bonnie....no homo. :w00t:


~Amy

Bonnie
06-24-2009, 12:35 AM
I love you, Bonnie....no homo. :w00t:


~Amy

The Lone Star State misses her TexasRN, Amy. :cry:

F34R
06-24-2009, 12:46 AM
Ugh.. sorry about that. I probably should have kept it to PM's. I just saw the pics and remembered when my little girl was hospitalized a few years back.

TexasRN
06-24-2009, 12:47 AM
The Lone Star State misses her TexasRN, Amy. :cry:

Texas, our Texas...all hail the mighty state...
Texas, our Texas...so wonderful so great... :cry:

It was just in the 80s here today. They freak out at 90. I laugh at them. :laugh:


~Amy

TexasRN
06-24-2009, 12:52 AM
Ugh.. sorry about that. I probably should have kept it to PM's. I just saw the pics and remembered when my little girl was hospitalized a few years back.

No worries, dude. It reminds me of my son too. He's now 12 and healthy and you'd never know he had surgery. Even his scar is so faded that you have to know where it's at to see it. And I'm not saying people shouldn't help if they feel led to.


~Amy

surveyorshawn
06-24-2009, 02:13 AM
I am going to sound like a huge jerk here but I am going to butt in anyway and just take the heat of being unpopular for this. We cannot have anyone soliciting donations on this site. I know that is not what happened in this case. It was freely offered by a kindhearted person for someone who needs the money for a sick child. I do understand that. Truly. I've done the whole hospital parent thing (my son should not be alive today) so I feel the pain of the family hurting here. I just do not want a precedent started here where we set our members up for being preyed upon by scam artists. Again, I am not saying I believe this to be the case in the situation posted here. So from now on, if anyone feels like God is leading them to help another member here we should keep it strictly to PMs. This is for the safety and good of everyone here.

I wish the family of that beautiful baby boy all the best and I know I sound like a jerk but sometimes, bad people take advantage of good people. Again, I do not doubt the reality of the posts or pictures. Just doing my job.


~Amy

You don't sound like a jerk at all, Amy! Someone misreading what transpired (which you did not do, btw) could easily take it the wrong way and use it as a license to misuse this forum.
What did your son have surgery for? Ben has VSD & Double Output Right Side, if you are familiar with heart ailments. I understand that while uncommon, it is a condition that our surgeon deals with a few times a year. Of course, that is of little consolation when you are the parents of the sick baby! What are some of the things you and your husband did to help cope and deal with the situation that you were in with your son?
The other children are at Grandma's for the summer, which definitely helps! I'm afraid they may have been feeling a little excluded with all the attention that Ben requires, and now Grandma can spoil them at the pool all summer while we deal with the surgery. God willing, he will be fully recovered by the time they return for school!!

TexasRN
06-24-2009, 11:22 AM
You don't sound like a jerk at all, Amy! Someone misreading what transpired (which you did not do, btw) could easily take it the wrong way and use it as a license to misuse this forum.
What did your son have surgery for? Ben has VSD & Double Output Right Side, if you are familiar with heart ailments. I understand that while uncommon, it is a condition that our surgeon deals with a few times a year. Of course, that is of little consolation when you are the parents of the sick baby! What are some of the things you and your husband did to help cope and deal with the situation that you were in with your son?
The other children are at Grandma's for the summer, which definitely helps! I'm afraid they may have been feeling a little excluded with all the attention that Ben requires, and now Grandma can spoil them at the pool all summer while we deal with the surgery. God willing, he will be fully recovered by the time they return for school!!


My son had what's called meckel's diverticulum. Basically he had a pocket of gastric cells in his intestines that secreted enough gastric acid to finally eat through his gut. He started bleeding to death one evening and by the time I was able to get him in to the ER he had lost over half his blood volume. Our pediatrician had told me that he was attention seeking and to take him home. I drove him to the ER instead and they immediately grabbed him out of my arms and ran him to the back. He was that bad. The doc there told me that he didn't know how he was still conscious and mentally aware with such low blood volume, he should have gone into shock at that point. We had to then be transported to another hospital where he underwent all kinds of testing and finally surgery to cut out a section of his bowel. A 30 minute surgery lasted 6 hours. He was a sick, sick boy. Now, he is healthy and you'd never know he is a miracle child. Granted it is not the same as a congenital heart defect and my experience required just one surgery. Hubby worked and I lived at the hospital with my son. Some of my fellow Bible study moms watched my daughter for me. I only had to stay a week total. The day we went home, friends came and brought my little guy games and toys to help entertain him while he recovered. He ran up and down the stairs instead. Obviously had just very minor pain with his major abdominal surgery....little stinker.

Anyway, I am glad you didn't take offense to my post regarding donations. I have had your family on my prayer list since the first post.



~Amy

surveyorshawn
06-28-2009, 12:38 PM
The surgeon called and wants to schedule the surgery for July 7th, but has to get with the pediatric cardiologist to confirm. We are not really ready, and will try to get it a week later if possible, BUT, if the surgeon is concerned about waiting we will just go with it. Please continue to remember us, and pray that we & the surgeons will use wisdom in determining the best time. We are fortunate that we can at least somewhat have a say in planning this. I truly thank everyone for the prayers you have already said for Benaiah!! I hope that we can somehow bless you as much as you have blessed us!!

surveyorshawn
07-02-2009, 07:55 PM
Got another update today. The surgery is going to be after July 15th, but they are not sure what date exactly. This really helps a lot! Please keep praying, and thanks for all the prayers you guys have lifted for Benaiah & us!

VCURamFan
07-03-2009, 02:33 AM
Got another update today. The surgery is going to be after July 15th, but they are not sure what date exactly. This really helps a lot! Please keep praying, and thanks for all the prayers you guys have lifted for Benaiah & us!Already praying for y'all Shawn. Actually, I've been meaning to ask you: my church has a prayer service every Sunday evening, as well as a Prayer Chain e-mail group. Would you be interested in having me let my church know aobut your son & your family so they can encourage y'all in prayer as well?

surveyorshawn
07-03-2009, 02:46 AM
Absolutely! I certainly believe in the power of prayer and faith! The more of God's people who pray, the better!! I will keep you guys updated with my blackberry when we are in the hospital as well. Also, if anyone needs my email address for a prayer chain, etc., just PM me & I will give it to you. Don't forget to pray for Bonnie as well, as she goes through her cancer treatments! God bless!

Bonnie
07-03-2009, 03:03 AM
Shawn, I know you've been concerned about the surgery date so this is good news. I've been praying about that and also that God provide y'all with everything you need during this time. And, I know He will, Shawn, I know He will. :)

surveyorshawn
07-07-2009, 01:10 PM
Ok, the hospital called yesterday. The surgery is scheduled for Wednesday, July 15. We will have to be the the day before for a preop exam. We don't really feel prepared (do you ever really feel prepared for stuff like this?), but Ben's breathing is getting worse, and he is getting weaker, so we definitely cannot wait any longer. Thank you guys for all the prayers, words of encouragement, PM's, and offers of support. Please continue to pray. I will keep everyone updated from the hospital. I may start a new thread for that, as this one is getting kind of long, lol. Again, thanks to everyone who has continued to remember us. I have come to really respect and love a lot of you as you have stood beside us and stood in the gap for us. If any of you ever need prayer or any other help that I am able to provide, please let me know, as we are forever in your debt.

mikthehick
07-07-2009, 02:39 PM
I'm continuing to pray for you and family Shawn!

Keep on looking ahead,

Psalm 42:7

CAVEMAN
07-07-2009, 03:38 PM
Still praying for a successful surgery and complete healing!

Play The Man
07-08-2009, 07:28 AM
Shawn, I'll say a prayer for him. If you don't mind me asking, does he have a Tetralogy of Fallot, or some other congenital heart defect?

surveyorshawn
07-08-2009, 12:07 PM
He has ventricular septal defect and double output/right ventricle. Are you familiar with those?

Play The Man
07-08-2009, 05:08 PM
Shawn, perhaps you and your wife should be on the prayer list as well? You must be having poor sleep and a constant knot in your gut. I have a child and can't imagine the trial you are going through.

Miss Foxy
07-08-2009, 07:52 PM
1 more week till our precious has his surgery. Benaiah is definitely in my thoughts and prayers. Shawn give my little man a kiss please...

surveyorshawn
07-13-2009, 10:09 PM
Ok, Benaiah got a blood test today at his pediatrician's office to test for infection, and he is all good, so we are headed to Tulane University Hospital in the morning for the surgery. Of course they will check him again at the hospital, and we will have to go through orientation again. If everything goes well, he will have the heart surgery early Wednesday morning. It's starting to feel real now, and we need your prayers more than ever. I will keep you guys updated as the surgery progresses. I may start a new thread about it, as this one is getting a little long, lol. Thanks for all your prayers, and God bless!!

Bonnie
07-13-2009, 11:21 PM
Shawn, safe journey for you, your wife and Benaiah. I know God's hand will be over your little one through all of this. I'll be praying for all of you.

God Bless!

DonnaMaria
07-13-2009, 11:42 PM
I will certainly pray for your family as well.

Stay strong!

VCURamFan
07-14-2009, 03:04 AM
We're all praying for you & Ben, Shawn.

Llamafighter
07-14-2009, 07:37 PM
He'll get all my prayers tonight, Shawn. God bless Benaiah!

Tyburn
07-15-2009, 12:00 AM
http://www.youtube.com/watch?v=54iZoIPjjYU

I thought this track might bring you some comfort. The lyrics are below

Loving Shepherd of Thy sheep,
Keep Thy lamb, in safety keep;
Nothing can Thy power withstand,
None can pluck me from Thy hand.


I would praise Thee every day,
Gladly all Thy will obey,
Like Thy blessŤd ones above
Happy in Thy precious love.

Loving Shepherd, ever near,
Teach Thy lamb Thy voice to hear,
Suffer not my steps to stray
From the straight and narrow way.

Where Thou leadest I would go,
Walking in Thy steps below,
Till before my Father’s throne
I shall know as I am known.

surveyorshawn
07-15-2009, 02:41 AM
Thank you guys for all your prayers & comments! Thank you for the song, Dave. We listened to it & read the lyrics in the room this evening, and were brought to tears (good ones). It was a very stressful day at the hospital. Ben had all the bloodwork and tests done again. Yesterday he saw the pediatrician in our hometown to make sure he was ok so we wouldn't have to make the trip all the way to New Orleans for nothing again. The pediatrician cleared him. Today, the cardiologist saw that his right eye was a little red & crusty, and they tried to send us home again to wait in case it was another infection, but we convinced them to wait & see how it does overnight. We are putting drops in it, and will report to surgery in the morning at 5:30. Hopefully there is no infection, and they will proceed with the surgery in the morning.

VCURamFan
07-15-2009, 03:05 AM
Thank you guys for all your prayers & comments! Thank you for the song, Dave. We listened to it & read the lyrics in the room this evening, and were brought to tears (good ones). It was a very stressful day at the hospital. Ben had all the bloodwork and tests done again. Yesterday he saw the pediatrician in our hometown to make sure he was ok so we wouldn't have to make the trip all the way to New Orleans for nothing again. The pediatrician cleared him. Today, the cardiologist saw that his right eye was a little red & crusty, and they tried to send us home again to wait in case it was another infection, but we convinced them to wait & see how it does overnight. We are putting drops in it, and will report to surgery in the morning at 5:30. Hopefully there is no infection, and they will proceed with the surgery in the morning.Thanks for the update, Shawn. We'll continue praying.

surveyorshawn
07-15-2009, 11:58 AM
We are in the holding area in the operating room waiting to see the doctor now. We have been here since 5:30 this morning. They have already done his basic prep & admit work this morning. I will post updates as they happen & pics a little later.

rearnakedchoke
07-15-2009, 12:56 PM
We are in the holding area in the operating room waiting to see the doctor now. We have been here since 5:30 this morning. They have already done his basic prep & admit work this morning. I will post updates as they happen & pics a little later.
dude, my prayers are with your fam and little warrior .... all will be good ...

surveyorshawn
07-15-2009, 01:18 PM
They just took Ben back for surgery. We have faith, but are afraid at the same time. Thanks to everyone who is praying for Ben & us

Llamafighter
07-15-2009, 01:19 PM
We are in the holding area in the operating room waiting to see the doctor now. We have been here since 5:30 this morning. They have already done his basic prep & admit work this morning. I will post updates as they happen & pics a little later.

I'll keep praying, buddy!
WAR BENAIAH!

Miss Foxy
07-15-2009, 04:37 PM
My prayers are with Benaiah and also w/your family. Stay strong buddy, and remember its ok to be weak sometimes. :wink:

surveyorshawn
07-15-2009, 04:52 PM
Ben is still in surgery. The nurse has updated us twice & he is doing good. He is on a heart & lung machine right now. It could be another hour or so. Thanks for all the encouraging words & prayers!!

Llamafighter
07-15-2009, 04:58 PM
Ben is still in surgery. The nurse has updated us twice & he is doing good. He is on a heart & lung machine right now. It could be another hour or so. Thanks for all the encouraging words & prayers!!
hang in there. the prayers continue!

surveyorshawn
07-15-2009, 06:50 PM
The nurse just came out. Ben is off the heart-lung machine & his heart it beating fine. They are closing his chest now, & are putting in pace maker wires because it beats erratically some because of the surgery. They said it will take about 2 more hours.

Twinsmama
07-15-2009, 07:49 PM
I'm so glad to hear it is going good for him. I think your son is giving me gray hair!! Keep updating because we are all worrying w/ you. We'll be thinking about you.

Rev
07-15-2009, 08:57 PM
I hope to get down there tomorrow. I have another Funeral at 1:00pm so I dont know. We are all praying for you guys.

surveyorshawn
07-15-2009, 09:19 PM
I hope to get down there tomorrow. I have another Funeral at 1:00pm so I dont know. We are all praying for you guys.

Thanks, Dave! We will be here about 2 weeks, if everything goes well.

surveyorshawn
07-15-2009, 09:35 PM
Benaiah made it through surgery really well. It wound up taking about 7 hours, because they had to do more than they thought, and they had to get the heart team together to make some decisions. He did really well. They are taking him to the pediatric ICU now, and we will be able to see him in about an hour (5pm central time). The main surgeon came out and talked to us first about what they did and his immediate after care. He will be in the PICU for several days before getting a room. They are really pleased with how well he is doing so far! When we first saw him after they brought him out, it was really hard and heart-wrenching. It is tough to see your child like that, but we know he will be so much better physically in the long run. Here are a few pics from today:

They were taken when they first brought him out of the operating room this evening at 3:45. It is hard for me to even look at the pictures right now, as you can imagine
http://i634.photobucket.com/albums/uu62/akshunter70/RIghtaftersurgery.jpg
http://i634.photobucket.com/albums/uu62/akshunter70/IMG01107.jpg
http://i634.photobucket.com/albums/uu62/akshunter70/IMG01106.jpg

Bonnie
07-16-2009, 12:03 AM
Oh, Shawn, I know it's hard for y'all to see him with all the apparatus and stuff, but, before you know it, all of that is going to be gone and Benaiah is going to be up and playing and laughing.

Hang in there, daddy. :)

VCURamFan
07-16-2009, 04:23 AM
Shawn, brother, I'm sooooo relieved to hear he pulled through. I've been running errands all day & haven't been able to check in, so I've been nervous & praying all day. Thanks be to God that he kept Ben safe!!

Llamafighter
07-16-2009, 12:09 PM
Glad to hear he did great! I will continue ot send prayers to the little Lion Killer!
Let us know if you need anything.

rearnakedchoke
07-16-2009, 01:51 PM
Dude, your son is a warrior and you guys are champs ... Stay strong ... I am shaking as i read these updates ... things sounds like they went well and your boy is strong and will make a speedy recovery ...

Twinsmama
07-16-2009, 04:45 PM
How's he doing today? I saw the pictures last night right before I went to bed last night and thought about him most the night. He is so tough. Will he be awake today or will they keep him out of it for a few days so he won't be moving around to much? Has the procedure they've done for him fixed the problem he had?

surveyorshawn
07-16-2009, 09:06 PM
How's he doing today? I saw the pictures last night right before I went to bed last night and thought about him most the night. He is so tough. Will he be awake today or will they keep him out of it for a few days so he won't be moving around to much? Has the procedure they've done for him fixed the problem he had?
The doctors say he is doing really well. Today was really hard, because they did not give him as much pain medicine to make sure he could respond to stimuli well, move well, etc. He cried a lot, and it was really tough on us, be we understand that it is necessary. I wish I could take his pain from him. On the bright side, he is progressing well enough that he may go to a room tomorrow or Saturday. He has 2 nurses and a respiratory tech assigned to him, and at least one of the nurses is in his room at all times. Every time we have seen him, they are constantly working on him or tending to him. The surgery appears to have fixed everything. They actually repaired 3 holes in his heart (VSD, ASD, & PDA) moved one artery (both were on the right side instead of one on each side like they are supposed to be), and enlarged his left aortic artery on both sides of the valve. They gave him pain medicine before we left a few minutes ago. Here are a few pics from the PICU from yesterday & today. The first pic is now my screen saver on my laptop.

Daddy's little buddy!
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00356-1.jpg

Mommy reading to her little man
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00367.jpg

Benaiah & his little lion
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00369.jpg

Caressing his ear soothes him
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00364.jpg

All his tubes
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00360.jpg

Medical staff conferring over him
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00387.jpg

Stealing kisses!
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00383.jpg

Right before they gave him pain medicine
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00428.jpg

Mommy's hands praying over little Ben as they examine him
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00372.jpg

VCURamFan
07-16-2009, 09:49 PM
Shawn, I can't believe how tough this must have been on you & your wife. I'm thankful to hear that Benaiah's pulling through strong. I'll keep praying for him while I'm out of the country & can't wait to get home in August & hear that he's near 100%!

Bonnie
07-17-2009, 11:28 PM
Shawn, needless to say, my eyes are tearing up seeing those pics of Benaiah with you and Jennifer and him with his little lion. :cry:

I'm glad he's doing well enough that they're going to move him to a room soon. That's good news, real good news.

Keep us updated on his progress and take care.

surveyorshawn
07-18-2009, 01:54 AM
Guys, Benaiah is doing so well that the doctors are amazed! I know that a ton of it is because of all the prayers that you all have lifted up for him!! He is such a fighter, and has such a strong will to survive and not quit! He had four bottles in a row this morning when he was finally allowed to eat (for the first time since 10:30 Tuesday night), and this afternoon he ate a whole bowl of cereal and peas! He follows us with his eyes when we talk to him or move around him. He has not smiled yet, and that is our sign as parents that he is feeling better, as he laughed all the time before surgery. We were supposed to be in the hospital for 2 weeks after surgery as a minimum, but they are talking about letting him go home as much as a week early if he continues to progress as he has been. We have taken things a lot better than we thought we would as well, and I attribute a lot of that to the prayers you have lifted up for us as well. God bless you all, and I hope that we will be able to bless each one of you who has prayed for us one day as much as you have been blessing us! :) :) :)

Bonnie
07-19-2009, 09:48 AM
:w00t: Shawn that is absolutely wonderful news! It sounds like he's got quite an appetite which is always a good sign. Now that he's eating, he'll feel stronger and maybe we'll see that smile soon.

Post pics! We love seeing him! :)

Llamafighter
07-19-2009, 05:18 PM
Guys, Benaiah is doing so well that the doctors are amazed! I know that a ton of it is because of all the prayers that you all have lifted up for him!! He is such a fighter, and has such a strong will to survive and not quit! He had four bottles in a row this morning when he was finally allowed to eat (for the first time since 10:30 Tuesday night), and this afternoon he ate a whole bowl of cereal and peas! He follows us with his eyes when we talk to him or move around him. He has not smiled yet, and that is our sign as parents that he is feeling better, as he laughed all the time before surgery. We were supposed to be in the hospital for 2 weeks after surgery as a minimum, but they are talking about letting him go home as much as a week early if he continues to progress as he has been. We have taken things a lot better than we thought we would as well, and I attribute a lot of that to the prayers you have lifted up for us as well. God bless you all, and I hope that we will be able to bless each one of you who has prayed for us one day as much as you have been blessing us! :) :) :)

Shawn! This is fantastic news. I had no doubt that your son was going to do well, but this is all so inspiring. The prayers are still coming. I think he has touched us all. thanks for letting us be a part of this.

surveyorshawn
07-20-2009, 02:04 AM
Thank you guys for being a part of our lives, and for praying for us & Benaiah! He is out of ICU now & is in a room. The doctors are saying he could come home as soon as Tuesday or Wednesday, which is absolutely amazing! We got our indication of him getting better today because he smiled & laughed!!! It is the first time he has done that since surgery. It was the best sight and sound in the world to us! Here are some pics. Thank you guys so much for all your prayers, and I will continue to keep you updated.

His scars
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00537.jpg

Sleeping
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00518.jpg

Laughing at Mommy playing with his puppet monster!
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00525.jpg
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00527.jpg
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00530.jpg

Looking at Daddy while I sang to him!
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00541.jpg

I waited for him to fall asleep before I left for the night. Only one of us can sleep in his room and, well, Mommy always gets first dibs! Lol
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00542.jpg

surveyorshawn
07-20-2009, 02:15 AM
In case any of you are wondering about his scars, of course the big one on his chest was for the actual heart surgery. The 3 across his belly are from the chest tubes that were there for the first few days to drain the fluids away from his heart, lungs, and chest cavity after surgery. The ones on his right shoulder are from the central IV line. The scratches on his face are where he scratched himself while flailing about in pain a couple days ago while the nurses were trying to get permission to give him pain medicine (figure that one out). The "dot" on the left side of his forehead is from a sensor they had on him to monitor his brain activity during & after surgery to prevent stroke (one of the potential complications with this particular surgery). Most of the scars will disappear over time, except the chest scar and the tube scars. They will always remind him of his first battle with and victory over this "lion." Now he truly is a lion killer, just like Benaiah of the Bible, where he got his name! Thank you Jesus for this victory!!

VCURamFan
07-20-2009, 03:23 AM
Shawn, I only had a few quick

VCURamFan
07-20-2009, 03:25 AM
Shawn, I only had a few quick moments to jump online & check some messages, but I'm so excited to hear that Ben's doing so well. Please know that I'm still praying for you & have been telling my teammates his amazing story. Be strong, brother, God is clearly with you!!

Bonnie
07-20-2009, 10:58 AM
There is his smile! I wish we had sound to hear his laugh. I can't believe how well his incisions look. Just look at him! A couple days ago he was all hooked up and now all that is gone and it looks like he's going home just a week out from surgery. Fantastic! I'm normally not an "I told you so" person, but I think in this case it's okay, "I told you so!" :laugh:

Benaiah is a warrior with the scars of his bravery and courage and victory there for all to see.

By God's grace! :)

Tyburn
07-20-2009, 05:22 PM
http://www.youtube.com/watch?v=ZGTw3gYFwJA

I added your son as an answer to prayer request, in this weeks blog :)

in those pictures He's so...lil and adorable :cool:

CAVEMAN
07-20-2009, 07:46 PM
Great news, Shawn! Sorry I have been away from the forums for awhile, but I have made mention of you and Benaiah often in my prayers. I'm so glad to hear things are going well for him. I will continue to pray that he will be 100%!!!

All Praise, Honor, and Glory to OUR KING JESUS!

Llamafighter
07-20-2009, 08:20 PM
Great to see him smiling and his eyes look so present. Benaiah reminds me of the things that I tell myself I can't do on a daily basis. I look at this tough little guy and realize that my hurdles are very small and I gain strength through your sons strength. God bless you and your family, sir!

surveyorshawn
07-23-2009, 12:48 PM
[QUOTE=Llamafighter]Great to see him smiling and his eyes look so present. Benaiah reminds me of the things that I tell myself I can't do on a daily basis. I look at this tough little guy and realize that my hurdles are very small and I gain strength through your sons strength. God bless you and your family, [QUOTE]
That is an awesome statement, and I appreciate it very much. I made me tear up upon reading it. I am thankful that, even though he is so young, Benaiah has already had such am impact on so many people. I am keeping an album on all of this for him, and I am going to quote that at the beginning of it, inside the cover. Thank you!

surveyorshawn
07-23-2009, 12:53 PM
We are going to find out in a few minutes if we can go home today!:) :) :) Here are some pics of Benaiah over the past few days:

Wrestling his lion (practice makes perfect!!)
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00619.jpg
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00618.jpg
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00615.jpg

Eating solid food!!!
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00594.jpg

Holding his bottle for the first time EVER!
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00628.jpg

A visit from Rev from the forums and his wife
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00630.jpg

Finally gets to wear his pjs
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00632.jpg

Daddy rocking him
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00636.jpg

Mommy holding him
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00639.jpg

Goodnight kiss!
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00641.jpg

Vizion
07-23-2009, 02:50 PM
Shawn, what a little blessing Beniah is!! God bless you and your family!!

Llamafighter
07-23-2009, 02:51 PM
[QUOTE=Llamafighter]Great to see him smiling and his eyes look so present. Benaiah reminds me of the things that I tell myself I can't do on a daily basis. I look at this tough little guy and realize that my hurdles are very small and I gain strength through your sons strength. God bless you and your family, [QUOTE]
That is an awesome statement, and I appreciate it very much. I made me tear up upon reading it. I am thankful that, even though he is so young, Benaiah has already had such am impact on so many people. I am keeping an album on all of this for him, and I am going to quote that at the beginning of it, inside the cover. Thank you!

I'm honored:)

Rev
07-23-2009, 07:33 PM
I got to go and visit him and he is a cool little dude! Everyone at church last night was soooo happy that he was doing as well as he is.

Rev
07-23-2009, 07:34 PM
I caqnt believe you posted that pic of my bald spot!!! jk:laugh:

Crisco
07-23-2009, 07:56 PM
God bless man you have a beautiful family and I wish your son a speedy recovery.

Bonnie
07-23-2009, 08:37 PM
He still looks upset in the pic with Mommy that Daddy has his binky. :laugh:

Benaiah is not only a lion slayer, but a heart stealer as well! He's stolen my heart. :wub:

Tyburn
07-23-2009, 08:57 PM
wow He's made a brilliant recovery hasnt he :scared0015:

Tyburn
07-23-2009, 09:02 PM
Thank you guys for being a part of our lives, and for praying for us & Benaiah! He is out of ICU now & is in a room. The doctors are saying he could come home as soon as Tuesday or Wednesday, which is absolutely amazing! We got our indication of him getting better today because he smiled & laughed!!! It is the first time he has done that since surgery. It was the best sight and sound in the world to us! Here are some pics. Thank you guys so much for all your prayers, and I will continue to keep you updated.

His scars
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00537.jpg

Sleeping
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00518.jpg

Laughing at Mommy playing with his puppet monster!
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00525.jpg
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00527.jpg
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00530.jpg

Looking at Daddy while I sang to him!
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00541.jpg

I waited for him to fall asleep before I left for the night. Only one of us can sleep in his room and, well, Mommy always gets first dibs! Lol
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00542.jpg
He cant be in much pain now, see how he lies on his side, which would effectively put pressure on the scar down his chest?

Lieing on front, chest is supported lying on back chest is relived...but lying on side will put pressure on the front. If he's doing that it cant hurt that much or else he'd roll one way or the other.

He's absolutely adorable

VCURamFan
07-24-2009, 03:02 AM
Shawn, I'm so thankful to hear & see how well Benaiah's doing. It's an answer to prayers.

surveyorshawn
07-24-2009, 11:56 PM
BENAIAH IS HOME!!!!!!!!!!!!!!! It is absolutely amazing to me that he has recovered so fast! He was discharged yesterday, one week and one day after having open heart surgery! He had a followup with his regular pediatrician today, and we will go back to New Orleans Monday for a followup with the cardiologists at Tulane. He rarely acts like he is in any pain at all. If I had just had my chest sawed open a week ago, I would still not be moving & would be on major pain meds!!! Here are some pics for you guys. Thank you so much for praying for him!! Please continue to pray for a complete recovery. Unless something changes, he will have eye surgery in November or December. I will post his complete heart diagnosis and what they did soon.

Playing with his toes after they took out all the tubes and wires
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00661.jpg

Benaiah, Mommy, and Daddy
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00665.jpg

Benaiah's medical team
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00646.jpg

Leaving the hospital!
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00677.jpg

Mommy loading him in the truck!!:)
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00680.jpg

Happy to be going home!!!
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00685.jpg

The sign of a good book....how it feels on your gums!!
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00686.jpg

Home at last!!!!:) :) :)
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00692.jpg

Dr's visit today
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00706.jpg

Who's that cutie in the mirror?
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00702.jpg
http://i634.photobucket.com/albums/uu62/akshunter70/IMG00705.jpg

surveyorshawn
07-25-2009, 12:01 AM
I caqnt believe you posted that pic of my bald spot!!! jk:laugh:
At least yours is a bald spot, whereas mine covers my entire head!:laugh: :laugh: :laugh:

mikthehick
08-05-2009, 02:10 PM
Shawn, I finally just read this thread and I'm so relieved he pulled through and seems to be recovering nicely!

How is he doing now? The pictures of Ben in front of the mirror are adorable! It makes me want to give my niece and nephew hugs right now :)

God is awesome!

Llamafighter
08-06-2009, 01:05 AM
Awesome pics! I'm just ecstatic to see his improvements. what a warrior!!

surveyorshawn
08-06-2009, 01:26 AM
Shawn, I finally just read this thread and I'm so relieved he pulled through and seems to be recovering nicely!

How is he doing now? The pictures of Ben in front of the mirror are adorable! It makes me want to give my niece and nephew hugs right now :)

God is awesome!

He is doing amazingly well! Before the surgery he was very delayed as far as physical things go (rolling over, holding his head up, etc.) because he was so weak from his heart condition. We had to keep him away from public places and anyone who was even a little sick as well. Just days after surgery he almost rolled over and held his bottle by himself for the first time ever. It is like he is playing catch-up in high speed now. He laughs & smiles a lot too, and seems so much more alert & not lethargic like he was!

TENNESSEAN
08-06-2009, 03:11 PM
Iím so happy for your family. Now you get to look forward to trying to keep up with Ben.

My daughter had Pulmonary Stenosis and at 6 weeks old had an operation to correct it. Her operation was not as abrasive as little bens but I can relate to how the last few weeks have been like for you guys.

It is truly amazing how fast these little ones recover and you will see a dramatic change in bens activity.

Reagan was always a happy and active baby but after the surgery it was like she had a six pack of red bull every morning. :w00t: Wow!! The oxygen levels in her blood went from 62% before the operation to 99% after.

She is a very very active 7 year old now that loves to dance. My wife and I joke that since she started dance she has forgotten how to walk.:happydancing: She dances every where she goes.

Glad to hear the good news and get ready to try to keep up.:)

Llamafighter
08-06-2009, 03:48 PM
Iím so happy for your family. Now you get to look forward to trying to keep up with Ben.

My daughter had Pulmonary Stenosis and at 6 weeks old had an operation to correct it. Her operation was not as abrasive as little bens but I can relate to how the last few weeks have been like for you guys.

It is truly amazing how fast these little ones recover and you will see a dramatic change in bens activity.

Reagan was always a happy and active baby but after the surgery it was like she had a six pack of red bull every morning. :w00t: Wow!! The oxygen levels in her blood went from 62% before the operation to 99% after.

She is a very very active 7 year old now that loves to dance. My wife and I joke that since she started dance she has forgotten how to walk.:happydancing: She dances every where she goes.

Glad to hear the good news and get ready to try to keep up.:)

HEy man, so glad to hear your daughter is doing good too!
It seems like all you read about and see on the news is the bad and tragic stories. Imagine how well we'd all sleep if the evening news covered these great stories of victory and joy on the 10 o'clock news. I know i'd sleep a lot sounder.
This makes my day, friends!

TENNESSEAN
08-06-2009, 06:41 PM
HEy man, so glad to hear your daughter is doing good too!
It seems like all you read about and see on the news is the bad and tragic stories. Imagine how well we'd all sleep if the evening news covered these great stories of victory and joy on the 10 o'clock news. I know i'd sleep a lot sounder.
This makes my day, friends!

so when you jumpin on the daddy train. life dont start till ya have a kid.

no one can make you feel so good or on the other hand feel so bad as your own child. when they hurt you feel every pain times 10 and when they are happy nothing makes you happier.

surveyorshawn
08-18-2009, 10:54 PM
Guys, Benaiah's 9 month checkup was today. The pediatrician noticed that the soft spot on his head is protruding a bit, and his head seems a little swollen or enlarged. He is having a CAT scan in the morning (Wed. Aug 19) at 8 am. Please pray for him. Of course we are really worried!

Bonnie
08-19-2009, 04:31 AM
I'm still praying for Ben and your family. I know it's hard (and only human), but try not to imagine the worst. Give that little angel a kiss from me, will ya. :)

Conrad
08-19-2009, 06:58 AM
Shawn, thanks for posting this update. The worry is understandable, so please tell us what the scan showed.

Praying for you, too. That your faith would keep growing.

Llamafighter
08-19-2009, 12:24 PM
Guys, Benaiah's 9 month checkup was today. The pediatrician noticed that the soft spot on his head is protruding a bit, and his head seems a little swollen or enlarged. He is having a CAT scan in the morning (Wed. Aug 19) at 8 am. Please pray for him. Of course we are really worried!
I'll definitely be praying for him!

Rev
08-19-2009, 10:53 PM
whats the word?

surveyorshawn
08-20-2009, 12:30 AM
Ok, I am about to show my ignorance in regard to medical things, but I will attempt to explain what the dr told us today. There are basically 3 areas that hold fluid in the brain area, one on each side, and one in the middle (under the baby's soft spot). The CT scan showed that both of the ones on the side are in the normal size range, but on the very upper end of the spectrum. The one in the middle is enlarged beyond the normal range, but not tremendously. He has no signs of infection, or any other symptoms at all besides the apparent swelling. They said just to watch him, & notify them if he develops any symptoms or if the soft spot swells any more. He has a followup appointment in a month to measure his head again. Although his soft spot is protruding some, it is still very soft & spongy. The dr said we should worry if it becomes harder similar to a trampoline. He said it could be something as simple as a duct that is stopped up, temporarily pooling fluid there. Of course, no parents fully relax until they are certain that nothing is wrong, and no one wants to hear "let's just watch him and see what happens", but it is better than hearing that something serious is definitely wrong! Thank you guys for all your prayers!!

TENNESSEAN
08-20-2009, 03:34 PM
stay strong my friend, you are in our thoughts and prayers.

Rev
08-20-2009, 07:19 PM
Just heard from Shawn, they are medivacing Benniah to the big hospital in our area. Shawn was working about 2 hours from home so he has a while to drive. Please pray for lil Ben and Shawn's family.

Twinsmama
08-20-2009, 07:33 PM
Oh my gosh! What happened I thought it was wait and see? I'm praying for this little guy. I'm hoping Shawn is careful I'm sure he is haulin tail to get to his son. Please let us know.

Praying for God to watch over the baby and the family.

surveyorshawn
08-20-2009, 09:10 PM
Just stopped by the house to get some things & write up instructions for my employees for tomorrow. Benaiah's regular Dr was out yesterday, so an on call dr is who made the ruling to wait & watch him. While I was at work today, his regular dr apparently viewed his record & the ultrasound reading & called Jennifer & told her to get him to the emergency room asap. She tried to call me, but I am working in a very rural area with no cell service. At the ER, the ER dr looked at him & said they need to medivac him to Tulane in New Orleans (same place he had his heart surgery) immediately to the neurologist there. The swelling in his brain is causing other problems, but I am not sure what they all are yet. Jennifer is still at the local hospital & I am about to leave to get her & head to New Orleans (another 2 hours away). I will not be able to post once I leave, as I will not have internet access, and I have asked Rev to please post updates for me. If anyone wants my cell to text or call, PM him. Thanks to all of you for praying so much for us!

Bonnie
08-20-2009, 09:34 PM
Shawn, stay strong! We are all with you praying for Benaiah. You know the Lord is with him too just from the regular doctor looking over everything today and calling Jennifer so fast. Be safe in getting there!

Rev please keep us updated as soon as you hear anything!

TexasRN
08-20-2009, 10:57 PM
I'm so sorry, Shawn.


~Amy

Tyburn
08-21-2009, 12:13 AM
:unsure-1: poor little mite :sad: He's having an extremely rough time isnt he. But we will all keep praying :)

Play The Man
08-21-2009, 12:24 AM
It sounds like he has hydrocephalus and needs a shunt. I will pray for him.

Rev
08-21-2009, 12:44 AM
Just spoke to shawn and they are gonna keep lil man and watch him overnight and have a neurologist(hope the spelling is right) look at him in the morning. He said that it may be hydrocephalus and they would have to put in a stint, but they arent sure. he will call me in the morning with more.

surveyorshawn
08-22-2009, 11:20 PM
We are back from Tulane in New Orleans. The neurologist said that though the ventricles in Benaiah's brain are on the large end of normal, they are still in the normal range. He did not see anything on the CT scan that would indicate that abnormal pressure on the brain was causing one of his pupils to be larger than the other (his right pupil is larger than the left one), and that it was an opthamalogical (sp) problem (eye problem). He said our normal pediatrician should monitor it, & we should return with any significant changes. An opthamologist came in & examined Benaiah next. She said nothing was structurally wrong with his eyes, and suggested abnormal pressure on the brain from a fluid buildup could be the cause (exactly the opposite diagnosis that the neurologist had). It was really frustrating that they could not agree, so I suppose we are indeed forced to sit and wait. The fact that one pupil is slightly larger than the other in addition to the bulging fontanel (soft spot) is why we were sent to Tulane. That is generally a very bad sign. In addition to those specialists, we also saw a geneticist, who drew blood and is currently running what is called a microarray test, which tests for every known genetic condition. We should have the results in about 2 weeks. This was done because several genetic syndromes are associated with congenital heart defects and eye problems. He has a local opthamologist appointment on Sept 9. This appointment was already set to potentially set up his eye surgery in Oct or Nov. With all said and done, I would rather have driven all the way to New Orleans and stayed for 2 days only to be released like we were, than to have to report back that Benaiah definitely had a serious problem like we thought!! It was worth the trip to be safe and have peace of mind!! Thank you guys so much for praying, and I will post the results of his tests as soon as we get them.

Rev
08-22-2009, 11:46 PM
Thank God brother! Still praying for yall.

Bonnie
08-23-2009, 12:13 AM
Shawn, I hear ya about it be frustrating regarding the two doctor's conflicting reports. I hope these blood tests will tell y'all something.

We will continue to pray for all of you. :)

Play The Man
08-23-2009, 02:03 AM
We are back from Tulane in New Orleans. The neurologist said that though the ventricles in Benaiah's brain are on the large end of normal, they are still in the normal range. He did not see anything on the CT scan that would indicate that abnormal pressure on the brain was causing one of his pupils to be larger than the other (his right pupil is larger than the left one), and that it was an opthamalogical (sp) problem (eye problem). He said our normal pediatrician should monitor it, & we should return with any significant changes. An opthamologist came in & examined Benaiah next. She said nothing was structurally wrong with his eyes, and suggested abnormal pressure on the brain from a fluid buildup could be the cause (exactly the opposite diagnosis that the neurologist had). It was really frustrating that they could not agree, so I suppose we are indeed forced to sit and wait. The fact that one pupil is slightly larger than the other in addition to the bulging fontanel (soft spot) is why we were sent to Tulane. That is generally a very bad sign. In addition to those specialists, we also saw a geneticist, who drew blood and is currently running what is called a microarray test, which tests for every known genetic condition. We should have the results in about 2 weeks. This was done because several genetic syndromes are associated with congenital heart defects and eye problems. He has a local opthamologist appointment on Sept 9. This appointment was already set to potentially set up his eye surgery in Oct or Nov. With all said and done, I would rather have driven all the way to New Orleans and stayed for 2 days only to be released like we were, than to have to report back that Benaiah definitely had a serious problem like we thought!! It was worth the trip to be safe and have peace of mind!! Thank you guys so much for praying, and I will post the results of his tests as soon as we get them.

Did the neurologist and ophthalmologist talk to each other? If not, they should have. Did your pediatrician have a talk with both of them? There is a discrepancy that needs to be resolved. Perhaps this would be a situation where you need a second opinion with another neurologist or another ophthalmologist, or both. I hope the neurologist has scheduled some sort of short term follow-up. You deserve answers. Be polite, be humble, but be firm.

surveyorshawn
08-29-2009, 06:46 AM
Update: Benaiah had an appointment with the local opthamologist in Hattiesburg yesterday. She said he need some more time & will recheck him in Nov. His right eye drifts out to the side the most, so she said he may need a patch on the left on to cause the right one to work harder & focus. Surgery is the next step, but they still have to determine a diagnosis. Still another week on the genetic tests results

Chuck
08-29-2009, 02:28 PM
Update: Benaiah had an appointment with the local opthamologist in Hattiesburg yesterday. She said he need some more time & will recheck him in Nov. His right eye drifts out to the side the most, so she said he may need a patch on the left on to cause the right one to work harder & focus. Surgery is the next step, but they still have to determine a diagnosis. Still another week on the genetic tests results

Thanks for the update brother. You're all still in my prayers!

VCURamFan
08-29-2009, 03:14 PM
Update: Benaiah had an appointment with the local opthamologist in Hattiesburg yesterday. She said he need some more time & will recheck him in Nov. His right eye drifts out to the side the most, so she said he may need a patch on the left on to cause the right one to work harder & focus. Surgery is the next step, but they still have to determine a diagnosis. Still another week on the genetic tests resultsThere was a family at church whose youngest daughter had a similar problem. She wore the eye-patch for awhile, & when she was done she just had to have a contact in the weak eye.

mikthehick
08-29-2009, 03:52 PM
Update: Benaiah had an appointment with the local opthamologist in Hattiesburg yesterday. She said he need some more time & will recheck him in Nov. His right eye drifts out to the side the most, so she said he may need a patch on the left on to cause the right one to work harder & focus. Surgery is the next step, but they still have to determine a diagnosis. Still another week on the genetic tests results

Shawn, you and your family's faith through all this is tremendous, and I commend you for trusting in the Lord through all of this.

Your son is awesome and I will continue to pray for you all and so will my friends. I send you tons of love from Charlottesville--your son is such a trooper, and such an inspiration for the rest of us on how to overcome obstacles in life.
:wink:

Rev
08-30-2009, 12:01 AM
Brother, as soon as I can get a break, I am going to come and see yall.

surveyorshawn
09-16-2009, 02:12 AM
Hey guys, Benaiah is doing great! His cardiologist is amazed! He is in physical therapy now so he can catch up on all the things he missed out on (like rolling over & sitting up) since his heart was too weak to allow him to try anything the least bit strenuous. When they did the surgery, they opted not to cut across his valve, since that could mean valve repair and replacements throughout his life, as the technology doe not currently exist to repair or replace valves without them leaking. The repairs they do on infants do not allow for growth, and he would need replacements as he reaches certain stages of growth. This left a slight blockage, as the valve is a little small. They hoped that in leaving it, it will eventually grow, reducing the blockage. The pediatric cardiologist said they should know in about 6 months if he will require further surgery, and I will certainly keep you guys updated! Additionally, we should know in November if and when he will need eye surgery. I'm sorry I have not updated in a while, but we are having internet problems, and a tech is supposed to come out tomorrow. As soon as I can I will post some pictures so all of you can see how big and strong he has gotten!!! Also, I found a site by a guy who has written a book (the first in a series) about the Biblical Benaiah, who is the source of my son's name. I bought the book, and it is really good so far! They are also making a movie based on the book. It is called "Day of War." The link is: http://lionofwar.com/ The series is "Lion of War", and it is about King David and his mighty men.
Thanks for all the prayers!!!!!

VCURamFan
09-16-2009, 02:23 AM
Shawn, that is awesome, man! We're all so happy for you & your family. Praise God!!!

Llamafighter
09-16-2009, 03:53 PM
Hey guys, Benaiah is doing great! His cardiologist is amazed! He is in physical therapy now so he can catch up on all the things he missed out on (like rolling over & sitting up) since his heart was too weak to allow him to try anything the least bit strenuous. When they did the surgery, they opted not to cut across his valve, since that could mean valve repair and replacements throughout his life, as the technology doe not currently exist to repair or replace valves without them leaking. The repairs they do on infants do not allow for growth, and he would need replacements as he reaches certain stages of growth. This left a slight blockage, as the valve is a little small. They hoped that in leaving it, it will eventually grow, reducing the blockage. The pediatric cardiologist said they should know in about 6 months if he will require further surgery, and I will certainly keep you guys updated! Additionally, we should know in November if and when he will need eye surgery. I'm sorry I have not updated in a while, but we are having internet problems, and a tech is supposed to come out tomorrow. As soon as I can I will post some pictures so all of you can see how big and strong he has gotten!!! Also, I found a site by a guy who has written a book (the first in a series) about the Biblical Benaiah, who is the source of my son's name. I bought the book, and it is really good so far! They are also making a movie based on the book. It is called "Day of War." The link is: http://lionofwar.com/ The series is "Lion of War", and it is about King David and his mighty men.
Thanks for all the prayers!!!!!

This kid just keeps on impressing me with his strength!. Go Benaiah!!
God Bless your family, Shawn

Rev
09-16-2009, 04:30 PM
thank God dude

Twinsmama
09-16-2009, 04:41 PM
Your son is so awesome. He is such a strong fighter. You guys have been on such a roller coaster. Glad to hear everything is slowing down. Good luck with everything and definately keep us posted.

surveyorshawn
09-17-2009, 01:35 AM
Look what a big boy! Sitting up by himself in his high chair!!

http://i634.photobucket.com/albums/uu62/akshunter70/09-16-09a.jpg

Bonnie
09-17-2009, 03:16 AM
He looks so good, Shawn! Does he have teeth yet? I can't remember when their first teeth start coming in.

surveyorshawn
10-20-2009, 12:31 AM
Hey guys, sorry I haven't posted in a while. Benaiah is doing great! Yes, Bonnie, he now has his first tooth! In fact, another one is starting to come through as well! Here are a few recent pics of him. The first one is an attempt to see his tooth, but he wouldn't be still, and would not keep his mouth open unless food was being put in, so his face is a little messy! Lol

http://i634.photobucket.com/albums/uu62/akshunter70/10-18-09aBenstooth.jpg

Here he is at a high school football game in his little rain suit:

http://i634.photobucket.com/albums/uu62/akshunter70/10-9-09b.jpg

And playing in his bouncer toy with his fireman's hat on:

http://i634.photobucket.com/albums/uu62/akshunter70/9-29-09b.jpg

It is so hard to believe he is going to be a year old in 3 weeks!!

Neezar
10-20-2009, 03:58 AM
It is good to see that he is doing well.

donaldbreland
10-20-2009, 04:37 AM
Isn't it amazing what God will do if you accept him in your life. Great looking little man. God Bless.

flo
10-20-2009, 06:35 AM
Babies are so incredible, to come back so strong is amazing! He is a beautiful boy, I love his name.

God Bless.

VCURamFan
10-20-2009, 02:25 PM
Shawn, that's so fantastic, man. I'm so thankful that Benaiah's been able to pull through like that!