Craziness

Kevin called me at work saying Nathan threw up very bad. So bad in fact that he turned blue, and really scared the nurse. She even almost pushed the code blue button. After he was done, and they got him cleaned up, the doctors came in to check on him. They said they didn't want to wait any longer and decided to push his surgery to today. So I left work early to get up here, to be here for him. Finally after waiting forever, they came in to say they postponed it until tomorrow at 1pm. I was really not happy they postponed it, being they don't want anymore damage to the lungs. They are also moving us to another room. They want him closer to the nurses station, to keep a better eye on him. I will keep everyone updated on his progress.

Change of Plans

We got some news I am not happy about. Kevin met with the surgeons today, and they informed us, they will not being doing the surgery. They do not feel Nathan is strong enough to have the surgery, even though all the specialist think he is. SO instead they are going to be doing the J tube beginning of next week. They feel that this will help strengthen Nathan for the fundoplication surgery. So Nathan will have the J tube for about 2 weeks, and if he shows a daily weight gain, then they will proceed with the other surgery. And while he is under, they will change the J tube back to the G tube. I am sure this is what is best for him, but it pisses me off that they are now doing 2 surgeries. They advised us that if Nathan does well, and can keep his oxygen up to a decent level, we can take him home but on oxygen. So at least he does not have to stay in the hospital until the next surgery. Kevin also told them that they need to give him is own private room after he is out of ICU from bother surgeries. Kevin told them that he does not rest well if he hears another baby or child cry. They said they will do what they have to, and assured us it should not be a problem. They also told him that after the fundoplication he should only need the G tube in for a few weeks to a month. That makes me happy, so maybe EVERYTHING will be taken care of before his first birthday. (Man I hope so) Because I was not there to discuss this new plan, Kevin would not agree to the surgery. So the doctors and surgeons will be in tomorrow to talk to me, and get the go ahead. So as much as I don't agree with having both surgeries, I guess it is for the best, and I will give them the go ahead. I will keep everyone updated the best I can. Have a good weekend everyone.

We have ANSWERS!!!!!

This morning Nathan had his barium testing. As the testing was going on Kevin was texting me. He said they put the barium through the tube, and that he did not have to swallow any of it. Nathan did great, and we should have results soon. Kevin called me at work about 12:30pm and said the test showed the cause of his issues. When they put the barium in, they watched with the machine where his intake goes. They watched as it traveled up, up, up and right into his lungs. This test shows he has HORRIBLE reflux, and it goes to his lungs. Because of this they said he has lung disease. (they used the word diseased but they said his lungs are injured/damaged) I freaked when Kevin told me this. I mean think about it, this has been happening for 8 months. They did say once they get the reflux taken care of, the lungs will repair themselves. Which is good. They told Kevin that they want to treat the reflux aggressively. They were setting up a meeting with all the specialists and us today at 3pm, to go over a game plan. So I left work at 2pm, to make it up there in time.

3pm came and we headed to the conference room. There were about 10 doctors and us in this small room. And they got right down to business. They advised us they want to treat this aggressively so Nathan can heal. Both require surgery. Surgery option #1 is to change his G tube to a J tube. That is where they take the tube from the stomach and move it to his small intestine. That way the acid reflux cannot go anywhere. BUT here are the CONS: Because food will be pushed into this small intestine instead of his stomach, he will need to be on the feeding tube 24/7. Since you can't put as much food in the small intestine like you can into the stomach. Which means we would have to carry the feeding pump where ever we go. AND if he eats any foods by mouth, that reflux can still expel. Surgery option #2 is doing what is called Fundoplication Surgery. This is where they take the stomach and wrap it around the lower portion of the esophagus. This way the reflux or anything for that matter cannot come up. SO he will NEVER be able to throw up. (Weird HUH??) I asked them what happens if he ever had the flu, and felt the need to throw up. They said he would go through the motions, but would only dry heave, never to throw up. So basically it would come out the other end. They said this is the best option, to which Kevin and I agreed. (there is more info on the surgery below)

So it looks like it will happen the beginning of the week. We asked them about 5 times, if Nathan can handle the surgery. They assured us that yes he could, but it has to be done ASAP. After the surgery he will be in ICU for a day or two. That way he can be closely monitored. So we are thinking he will be in the hospital for at least a week to 10 days. But it all depends on how Nathan heals. We all really believe this will resolve his issues. Because without the reflux, the lungs will repair themselves, than Nathan can breath easier, and not as fast or hard, which would mean he would not use as much energy/calories to breath.

We are a little concerned though, because the surgeon came in last night to talk with us, and he made it sound like they will not do the surgery. That he doesn't have reflux. But clearly we have proof it is. So I think once they consult with the doctors, it will be a go. I will keep everyone posted when the surgery is scheduled and on his progress. We really think this will heal Nathan, and he can be a kid again.

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The purpose of surgery is to repair the stomach valve that is allowing acid to leak into the esophagus. Certain tests will be performed prior to surgery to ensure that the patient's condition is likely to be helped by surgery.

Patients are generally evaluated using endoscopy, 24-hour pH studies, manometry or barium X-rays.

Fundoplication Surgery

In most cases, the operation performed to correct gastroesophageal reflux is a procedure called fundoplication. The upper portion of the stomach (the fundus) is wrapped (plicated) around the lower portion of the esophagus and anchored securely below the diaphragm.

As a result:

• The physical barrier that allows passage of material in or out of the stomach is strengthened.



• A flap valve is created at the entrance of the stomach.



• The wrap "inflates" as the stomach fills; a full stomach has a tighter valve than an empty one.



• All the factors that normally create valve pressure (esophageal muscle, the diaphragm and abdominal pressure) are superimposed on each other for maximum effect.

The operation is effective long term in stopping esophageal reflux and relieving symptoms.

More than 90 percent of patients who have fundoplication surgery are able to leave hospital the next day, eating a soft diet. Most people are able to return to their normal activities, work or school within one to two weeks after surgery. The satisfaction rate with this procedure is 96 percent at one year.

Fundoplication has undergone several improvements. Using a laparoscope and several very small incisions, the surgeon can operate without making a large incision to open the abdomen. The operation is the same, but the patient is spared the long hospital stay and prolonged recovery time of open surgery. There is also less pain after surgery, less chance of wound infection and smaller scars because of the smaller incisions.

Five small abdominal incisions are used for laparoscopic fundoplication. Each incision is .5 to 1 centimeter (less than 1/2 inch) long.

What Can I Expect if I am Referred to a Surgeon?

The gastroenterologist will work closely with the surgeon in deciding about the best options for treatment. Generally, four tests are performed prior to anti-reflux surgery. These include endoscopy, contrast radiography (X-ray), esophageal and sphincter manometry (testing of pressures generated at different points in the esophagus) and 24-hour esophageal pH monitoring (to demonstrate abnormal acid concentrations in the esophagus). These tests will determine whether your symptoms are due to reflux, the extent of damage to the esophagus and whether a defective valve is the main cause of the problem.

Potential Complications

Surgical complications occur in 2 to 4 percent of patients who undergo laparoscopic surgery. The risk of death after this operation is less than one in 500. Complications specific to fundoplication usually concern the stomach wrap.

The benefits generally outweigh the risks for patients who have symptoms requiring surgery.

Nathan loves his feet rubbed

Nathan just loves his feet rubbed. It is SO adorable. Anytime he wants them rubbed, he will lift his leg, and push his foot against your hand or arm to get your attention. And after you rub them, if he wants more, he lets you know it. The nurses at the hospital think it is SO adorable, and each nurse passes along that tip to the next nurse. He gets their attention by putting his feet up on the top of the railing, then wiggles them around until you start rubbing. He definitely gets that from his mommy.

Just a little FYI

Hi everyone!!! I just wanted to let you know, that I am trying to update his site daily. I want to make sure everyone knows what's going on with our little Naters. If you don't see a daily update on this journal, it will be under fun facts w/his weight. Thanks to everyone for being here for us. We love you all!!!

Nathan's first wagon ride

Nathan had his first wagon ride today. For his 1 hour break, we loaded him into the wagon, grabbed the oxygen tank, and took a walk. He walked him around the 5th floor, then onto the 1st floor, and up to the 6th floor. We were gone for about 45 minutes. He loved every minute of it. He was clapping, and bobbing his head up and down. Then he would laugh. It was great!!!!

Nathan learned how to make clicking noises

Okay, I don't really know what its called. But when you make a clicking noise with your tongue on the roof of his mouth, is what Nathan learned. It is SO adorable, and only took him today to learn it. We were all cracking up. Now he does it all the time.