Tuesday, January 12, 2010

Keeping NG Tube for now!!

The GI's docs nurse called this morning and left a message. Mackynlee does have a significant amount of reflux going on. This means she needs the more complicated surgical procedure where they take part of her intestines and wrap them around her esophagus. This is what I copied about this procedure.

Also referred to as the 'wrap' or 'fundo', a surgery called the nissen fundoplication is the final option for controlling very severe GERD. Because of the possible complications that can accompany this surgery, it is typically done as a last resort. It is by no means a cure for GERD and is only performed when severe symptoms and complications persist. It involves wrapping the upper portion of the stomach (fundus) around the lower portion of the esophagus.

There are different types of fundos performed: the Nissen fundoplication refers to wrapping the fundus all the way (360°) around the esophagus. As well, partial wraps can be performed. A 180° wrap is known as a Thal or Toupet fundo and a 90° wrap is known as an anterior partial wrap.
Fundoplication surgery can be performed as an open procedure or a laparoscopic procedure. The operation is basically the same but the way the surgeon gets to the stomach and esophagus is different. A laparoscopic fundoplication means that the surgeon will use several small incisions, and special instruments, with the aid of a videoscope and TV monitors to perform the fundoplication. The recovery time from a laparoscopic fundoplication is shorter than the open procedure. There is also less post-operative pain and a less visible scar. Not all fundoplications can be done laparoscopically because of adhesions from previous operations, excessive bleeding obscuring vision, too much fatty tissue or other problems, in this case, the standard method called an open fundo would be required. Great care should be taken in finding a surgeon capable of doing the laparoscopic method.

The patient is put under general anesthesia. In the laparoscopic method five tiny incisions are made in the abdomen if the method being used is open, one much larger incision is made. With the laparoscopic method, one incision is used for the laparoscope and the other four are used to insert special devices with which to perform the surgery. Many surgeons will perform a gastronomy at the time of the fundo to place a g-tube. The decision to place the g-tube is made based on the surgeon's preferences, medical condition, the child's age and eating habits prior to surgery. Some surgeons insist on placing a g-tube when doing a fundoplication while others don't routinely place a g-tube. This will likely be in place for a few months to insist with feeding and gas bloat problems. Some children may require the g-tube be in place longer than that.

When the fundo is completed successfully it works by keeping the lower esophageal sphincter closed enough to prevent reflux while still allowing food to pass through the esophagus and into the stomach.

Children with motility disorders don't do as well after a fundoplication as children with normal gastric motility and are at greater risk of complications. Children with delayed gastric emptying will sometimes have a pyloroplasty (or pylormyotomy) done when the fundoplication is done. The pyloroplasty involves cutting the pyloric muscle (the muscle at the bottom of the stomach). This allows the food to move out of the stomach faster. The pyloroplasty comes with the risk of dumping syndrome (the stomach empties too quickly) so it isn't routinely done for every child having a fundoplication.

Indications For Reflux Surgery

Esophageal stricture
Barrett’s esophagus (an absolute indication as this may end up in cancer )
Life-threatening apnea (cessation of breathing) and recurrent aspiration pneumonia
Large hiatal hernia
Failure of maximal medical therapy to reduce severe symptoms
Severe esophagitis (esophageal inflammation)
Recurrent pneumonia, chronic lung disease, bronchospasm
Failure to gain weight

Possible Complications Of The Fundoplication
Every surgery comes with risks from the anesthetic, infection and bleeding. The fundoplication surgery can have other complications as listed below.

Inability to burp or vomit, gas bloat syndrome (gas has to pass through the gastrointestinal tract causing gas pain and bloating....this can be severe for some children)
Retching (dry heaves)
Difficulty eating after surgery because of swelling at the fundo site or food aversion (may require tube feeds until the swelling decreases)
Dumping Syndrome (the stomach empties too quickly causing nausea, abdominal cramping, retching, pale skin, hypoglycemia, and sweating. Diet changes or the use of uncooked cornstarch may help alleviate the symptoms)
Small bowel obstruction (scar tissue adhesions form in the abdominal cavity causing parts of the small bowel to stick together)
Disruption of the wrap (stitches come undone and the stomach returns to 'normal' position causing the return of original problems)
Post-op dysphasia (swallowing problems including food getting stuck at the wrap site)
Hiatus hernia (the esophagus and the stomach slide up above the diaphragm and into the chest cavity)

Not all children who have a fundoplication will have these complications but many children have at least one of them. In most cases they will improve with time. If your child is facing a fundoplication read about what you can expect before and after surgery.

New research indicates that most children will still experience reflux symptoms or require medical treatment after having a fundo. According to a report in the November 2004 issue of Clinical Gastroenterology and Hepatology about two thirds of the patients in the study were seen within two months after their surgery with symptoms of reflux or received treatment for reflux.

HEART MOMS: What do you suggest for me to do now. My heart doc says to wait a few months. That is our plan for now, but in a few months if we still need a feeding tube, what do you advise us to do? Have any of your babies had this along with the PEG tube?

HEART MOMS: One more question for my heart mom friends, I have watched many of your cool videos. I know how to make a video on movie maker. How do I put that on my cp or blog? Or, what other way could I make a video to post? Remember I am not a computer whiz. You may have to walk me through step by step. Poor Ani Karg gets too many of my questions. By the way Ani, please make my blog three columns. I want to put other people's buttons on my page.

When we worship the Lord, let’s remember that He is in control. Nothing alarms Him, or takes Him by surprise. Nothing is too big for Him to handle, or so small it escapes His attention. When the winds of my world begin to blow, He remains seated. When raging waves surround me, He governs their temper…I need not be moved … Because the Lord is seated and sovereign…He alone is sovereign.

- Ronald James

Many times, we feel like we are in control, but God reminds us that He is in charge.

In the Old Testament book of Job, Chapter 38, God answers Job in short, to the point sentences. I particularly like verse 4 "Where wast thou when I laid the foundations of the earth? declare, if thou hast understanding."

I believe in this Chapter, God reminds Job (and us), that though we don't understand sometimes, we can trust the One who made everything.

I need to reread this once in awhile.

We are steadly working on plans to celebrate our miracle's first year. The date is still tentative. I will let everyone know the details as they come together. We are very excited about this. Thanks so much to my friends Kathryn Lowery and Susan Reagan. They are both so on the ball about this event. We are asking that everyone wear red to promote CHD awareness. How cool is that? That is Kathryn's brain working overtime!!! I love my party planner friends.


Monday, January 11, 2010

Birthday Party Ideas?

Mackynlee is doing great. I still have not heard from the doctors concerning the peg tube. We have increased Mackynlee's formula intake from 4 ounces every 3 hours to 6 ounces every 3 hours. She is not throwing up and seems to be much more satisfied. We were having to hold her all of the time. Talk about wear you out!!

Mark's Uncle Charles is still in the hospital. Doctors will be running test today to figure out what exactly is going on with him.

Okay, the real reason for this post: HEART MOMS I need ideas. We are cosidering having Mackynlee a first birthday party on Valentine's weekend. I am planning to do a heart theme of coarse. I would like to somehow pull in chd awareness. Any ideas? The only thing that is coming to my mind is having children bring riding toys and having signs already made with defect facts to hang on their riding toys. Maybe a parade to promote awareness?

Saturday, January 9, 2010

Lots of Prayer Requests

Mackynlee's appointment Wednesday with heart doc went great. Her heart is doing fine. She got taken off of one of her meds!! YAY Still not sure about peg tube surgery. Heart doc and GI doc are deciding for us. We should hear something soon.

Seems like everytime I get a phone call, check face book, or get a text, it is bad news. Please pray for the following who is in need.

Our Uncle Charles Montgomery was flown from Wesley Medical Center to Tulane yesterday. His liver is not functioning properly. There is concern about his kidneys shutting down. This is Mark's mother's sister's husband. He lives in Sumrall. His amonia level has gone from 300+ to now around 50. This is a good thing. His son told me this was a good level for him. Doctors are running test to find out more info. Uncle Charles has a shunt in his brain from previous surgeries.

Misty McNabb's neice(less than 2 years old) is in Tulane. I copied the following from Misty's fb page:

Our sweet Avery has been diagnosed with A.L.L. T-Cell Leukiemia. We are heartbroken. The docs are very positive and say 85 to 90 percent Avery can be cured! The 1st month is the hardest for Avery - she began last night with her "induction chemotherapy". Please pray for Avery each and everyday and also strength for Ashl...ey and Aj to get through each day as they learn how to take care of her.

This family has been through so much already with the "sick children" world. Misty's son Myles has been sick since he was born and has had surgeries himself.

Mary Nell Livingston's brother Forrest Danton had a brain anurism. He is in critical condition. Pray for him and this family. Mary Nell is a teacher at WMP. I have just recieved an email stating that he has passed. Please pray for this family.

Wishing Angel Ethin a Happy 1st Birthday. He was born January 9, 2009. He met Jesus on June 27, 2009. His life was cut short due to congenitial heart disease. Please lift his family up in your prayers today.

I am asking all of you to go to the following website: http://www.ipetitions.com/petition/chdfight/. Please sign this petition. It is "Fight For Newborns Who Can't Speak For Themselves". This is free. You do not have to donate. After clicking Sign, you do not have to do anything else. Your signiture is ...valuable and makes a real difference. Think about my Mackynlee. The doctor's first option for us was to abort.

One of my high school teachers sent me the following email this morning. I wanted to share it with all of you.


When I was a kid, my mom liked to make breakfast food for dinner every now and then.

I remember one night in particular when she had made breakfast after a long, hard day at work.

On that evening so long ago, my mom placed a plate of eggs, sausage, and extremely burned biscuits in front of my dad.

I remember waiting to see if anyone noticed, yet all my dad did was reach for his biscuit, smile at my mom and ask me how my day was at school.

I don't remember what I told him that night, but I do remember watching him smear butter and jelly on that biscuit and eat every bite.

When I got up from the table that evening, I remember hearing my mom apologize to my dad for burning the biscuits, and I'll never forget what he said.

He smiled at her and said, "Honey, I love burned biscuits."

Later that night, I went to kiss my dad good night and I asked him if he really liked his biscuits burned.

He wrapped me in his arms and said, "Your mom put in a hard day at work today and she's real tired. And besides, a little burnt biscuit never hurt anyone."

Life is full of imperfect things and imperfect people. I'm not the best at hardly anything, and I forget birthdays and anniversaries just like everyone else, but what I've learned over the years is that learning to accept each others faults, and choosing to celebrate each others differences, is one of the most important keys to creating a healthy, growing, and lasting relationship.

And that's my prayer for you today. That you will learn to take the good, the bad, and the ugly parts of your life and lay them at the feet of God, because in the end, He's the only one who will be able to give you a relationship where a burnt biscuit isn't a deal-breaker.

We could extend this to any relationship. In fact, understanding is the base of any relationship, be it a husband-wife or parent-child or friendship.

Don't put the key to your happiness in someone else's pocket, keep it in your own.

God bless you today and always.

So, pass me a biscuit, and yes, the burnt one will do just fine.

And pass this along to someone who has enriched your life . . . I just did.