Wednesday, May 20, 2009


Where to start??? I'm going to back track from my last email to keep you all updated in order! I know there are many stories going around, so those of you who read this, please inform all the others that this site will be the truth!!!
On Monday in the middle of the night, Braxton had made this cry that we had never heard before. I told Brad that it sounded like a 'hurt cry'. He agreed. Something did not sound right. It was the first time he actually acted fussy! So, we undo all the blankets, search him head to toe and call in the nurses to check his IV, but they say all is fine. On Tuesday morning we are told that the whole they thought was there is probably gone...but they would confirm it with an xray. Also during that time, they realized that his IV had come out!!!!!!! Gee...maybe mom and dad were right when they said something was hurting him! It showed that the IV was still in his skin, but the fluids were going in his tissue causing it to burn and hurt him...hmmm...maybe that's why he had the 'hurt cry'!?!?! So, they decided to leave his IV out while they did the xray, because if the xray showed the whole was shut, then we would head home and obviously an IV would not be needed!!! So, down to xray we go...unfortunately, the radiologist saw the whole yet he said. So, back up to the room, he remained on suction so no fluids would get to his stomach, and back in the IV must go. They poked and poked and poked and poked and poked and poked and that is no exaggeration. They tried in his hands, wrists, elbows, feet, legs...pretty much everywhere but his head. They then told us he would need a pic-line put in. Which didn't seem like a big deal to us...Norfolk made it seem like it was a common procedure although not common enough for them to perform it in Norfolk. We aren't sure why, but they do not do pic-lines in Norfolk. So, the next step was that we would have to go to another facility. So, then they come in and tell us we are going to Omaha to Children's Hospital. Sounded so scary to hear that, but by this point we are thinking that will be the best place for him!(and us) So, still thinking it isn't a big deal, they tell us that we can take him by car, or the ambulance will take him, then a bit later, we've got social workers in the room, case workers, drs, anesthesiaologist, nurses, the vice president of the hospital, (oh my goodness!) and they are telling us he is going by life net. Sounded so scary, but almost made me feel least we knew he would be getting there quicker. So, during all this, I just kept saying that I thought Norfolk knew more than what they were telling us...they reassured us that they didn't know anything else....
So, then we are told life net is coming from Omaha to Norfolk to get him, that way they have their own team in the helicopter if need by this point we were getting a little more scared than we already were...when life net did get to Norfolk, they were told they could not leave ground until they got the IV line put in. This was ordered by the Omaha Dr. At this time we did not understand why, but later I will explain that... So, needless to say, he got poked and poked and poked some more...the arms, legs, head :( and still no luck. At this point we are so frustrated!!! Although we had all the faith in the Omaha paramedics, it was frustrating to hear Braxton so sad from all the pokes...we finally got to the point where we could've been in Omaha a long time ago. The paramedics agreed and called the Omaha Dr. They were to try once more in the neck and if no luck, then they were to take off...well, no such at 5:15 Braxton headed for his first helicopter ride:( It felt like at that point that was the worst possible feeling ever...seeing your child go in a life net helicopter...
At 6:15 we received a call from the paramedics that he was there, checked in, and in the ER room. We got there by 6:45(thanks Neil for speeding a tad bit) and thanks to Tammy for comforting him til we got there!!!(family is AMAZING!!!) So, we get into the ER room to find them trying to put in an IV. WHAT?!?!? The whole point was to go to Omaha to get a pic-line put in...why are they messing with an IV? Well, this is where the truth all starts to come!!! Turns out, the only time you would want a pic-line put in is for long term use! Norfolk requested to Omaha a pic-line with the thoughts that he would need to be hospitalized for a long period of time! That was very upsetting to us! When Norfolk talked to us, they made it seem like a pic-line was no big deal and yet when Norfolk talked to Omaha, they made Omaha believe he was so sick!!! UGH!!! Anyways, they got a machine in and anesthsia came in to see if they could see veins to put the IV in, they tried a few times, but since it wasn't working they felt no need to keep poking him, they decided to just go in and put in a central line. They prepped him and did (what I call a small) surgery. They went in thru the side of his neck and put in 2 lines. One will be for the IV fluids and the next will be to take blood. This way they can STOP poking our son! He is bruised EVERYWHERE...I think they thought he was a pin cushion :( The surgery went well, we were back up in the room with him by midnight. They also at the time of surgery took out his ng tube. This tube was the one that was the suction tube getting everything out of his stomach. So, already he was looking better in appearance!
Also, back tracking, before they did do his surgery, they redid his xrays. They did revieew everything Norfolk did, but still felt it was in the best need to redo things and we TOTALLY agree!!! What Omaha was thinking is that the pin head size whole Norfolk was seeing was actually there since surgery. All the xrays Norfolk took, they sent to Omaha, and it showed that the leaking fluids were actually there since the first xray after was just that Norfolk didn't see the leaking fluid til Sunday....SO, that basically is telling us that the whole was put there during surgery. We understand that everyone is human, and we all make mistakes. There is no reason to be upset, it obviously wasn't done on purpose. More than likely, something somehow pinched him and it made the perforation (whole). No point in dwelling on it, what was done is done. So, it appeared that the perforation healed itself. Omaha is seeing no signs of a perforation anymore. We had to wait until 1pm this afternoon to feed him. Braxton is SO tough!!! He did not get fed absolutely anything for over a day...and he wasn't even fussy or crying!!! Just really attached to his pacifier!!! In Norfolk he was able to get 10ml of pedialyte, but the ng tube was suctioning it right back technically, he had not been fed since Friday. POOR THING!!! If I go for more than an hour I think I'm starving!!! Well, we fed him almost 2 ounces of pedialyte at 1, and they are just about to let us feed him again!!! If everything stays down and goes good we will then switch to formula and hope that goes good and then we are on the fast track to recovery!!! They have prepared us that he may get sick though. Which we totally understand. The poor little guy hasn't had anything in his stomach for so long... if he would get sick and remain sick then they would discuss surgery to figure out what is causing it...could mean a few things. Could mean the surgery in Norfolk wasn't done properly, or maybe there is a perforation somewhere...but they honestly do not think there is anything wrong!!! The Dr's here think that he looks healthy...actually when we got to Omaha, the Dr kind of gave us this weird look, like what are you doing here, your child is healthy! Which is good news!!! We have learned a lot also...Norfolk told the Omaha Dr's that Braxton has been throwing up for the past 5 days...which is NOT true! He got sick Friday night after surgery and that was the last time! It is so frustrating. A lot of what went on in Norfolk we are learning was either a lie or they just really don't have a clue!!! We have been informed that he did not have pnemonia, and possibly does not have a heart murmur!!!!!!!!!!!!!!!!!!!!!!!!!!! Which is FANTASTIC news, but is frustrating that we were told that!!!!!!!!!!!!! I know there is a lot I am probably forgetting, but this is what I can remember right now...
As for why Omaha Dr's would not let paramedics take flight without a IV line in, we learned once we got here, that Omaha was told by the Norfolk Dr's that he was so Omaha actually wanted him prepped for surgery. They were under the impression that he was so very sick, he was going to get here and need surgery! Nice that Norfolk told Omaha this, but we weren't aware of it!!!!!!! So it's been the things like this that are so very frustrating to us!!! But, it doesn't matter, we are in EXCELLENT hands here!!!!!!!!!!!!!!!!!!!! So, as of right now, things are really truly looking great! I will post as soon as we know more. THANK YOU to ALL of you who have been here, and those of you who have been praying!!!!!!!!!!! We KNOW how lucky we are to have all of you!!! Thank you for all of your continued prayers!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


  1. Praying for you guys and hope to see you soon.
    Cora Korus

  2. It is good to see how prayer can work. There were many, many people praying for Braxton as problems were occurring (and then no longer there). Whatever the reason (human error or divine intervention) prayers were answered and you are going to have a healthy, normal little boy to take home soon and finally enjoy. You have all been through so much, but you are so blessed! God is good and we are so happy for you and anxious to visit Braxton outside of a hospital setting :o) Love you! XXXOOO

  3. all frustrations aside, better to be on this side of things than have things be the total opposite! However, I do feel your pain :-)

    Braxton is a tough cookie, which he must get from somewhere - mom and dad! You two are doing a great job during all of this!

    Looks to me that room #404 is lucky for our family :-)

    we love you and miss you...can't wait to see you happy, healthy, and HOME!

  4. Sounds like Children's is taking good care of you. So glad to hear all the good news. Can't wait to hear that you are all coming home.
    Love Chuck and Janice

  5. Amanda - Just got your text and checked your blog right away - it wasn't all that long ago that we just talked and you mentioned him spitting up so much. Always trust your mommy's instinct. I will keep you and your little guy in my prayers. Hope you can head home with a healthy happy little guy soon. They are tough, aren't they - Love him up!!!!!!!!!
    Mandi Dahlkoetter

  6. Amanda~ I was just informed about Braxton being sick and all sorry to hear that but it sounds like he is a tough little guy and is getting better everyday!!! I hope all is great and hope u get to head home soon and that I get to see him too!!! I will keep Braxton and your family in my prayers!
    Heather Smutny

  7. Amanda & Brad-We're thinkg of you all. Glad to hear Braxton is doing better; we're also very proud of you. You're very strong and followed your instincts to assure that your son got the proper care. You're already great parents!!
    We love you and praying for you guys to come home soon!
    -Cindy Al and Sam Brandl