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Noah's Reflux and Fundo Story
Noah was delivered at thirty-five weeks after a very turbulent pregnancy. I was on bed rest from sixteen weeks, with premature rupture of membranes at thirty two weeks. Noah weighed three pounds even and was a whopping fifteen inches long at birth. He was beautiful, nursed well, and held his body temperature well. So, after six days in the hospital, they sent us home.
From the start, we noticed problems with him and very odd behaviors. He would stay awake for nine to ten hours at a time at only a couple of weeks old. He acted as if a motor were running constantly. Several trips were made to the E.R. to have him sedated to sleep. He also rubbed his feet together constantly even while sleeping. By the time he was three months old, we had made a total of seventeen E.R. visits and too many visits to his pediatrician to count. The E.R. would treat the symptoms and refer us back to our pediatrician, who would then tell us he was just neurotic. We were so desperate we even took him to a podiatrist to have his feet checked for fungal infections because he rubbed them constantly. He always had to have shoes on them because he would rub them until they were raw and bleeding. He also would always scream if you laid him down.
At four months of age, Noah began retracting and wheezing severely. Breathing treatments never brought any relief to his symptoms, nor did any medication for asthma that we tried. Noah would retract so badly that his rib cage was bruised on the outside for what seems now like forever. The oddest thing was that when he would wheeze, his O2 level was always over 98% and the medications they used for the treatments caused his heart rate to accelerate too high. It became a vicious cycle. The pediatrician finally referred us to a pulmonary doctor who never figured anything out either, and who said that his symptoms were concerning, but since his stats were always so good he would probably outgrow it. He said that since he reacted so overtly to the medications, he was better off with the symptoms than the treatments for the symptoms.
By then, as parents, we felt defeated. We felt so helpless. Noah was our third child, and we had done everything the same with him as with the other children, and we just couldn't bring ourselves to think like the doctors wanted us to think--that there was nothing wrong with him but bad behavior. We continually were told it was behavioral; we heard that a lot over his lifetime.
Noah was never really comfortable being held. It was as if he were overly sensitive to everything. To nurse him I had to prop him up on pillows and dare not move or he would go into a terrible crying spell. By five months old, all you would have to say was "night-night baby," and he would scream. By the time he was ten months old, I was lying to everyone we knew that he was sleeping through the night because I was so tired of people saying he was just spoiled or strong-willed.
I decided to wean Noah off the breast at thirteen months of age. By fourteen months of age, Noah began vomiting every time he was laid down and was suffering from severe diarrhea and weight loss. Still, no matter how much we pleaded with our pediatrician, we never got anywhere but frustrated. Noah's symptoms continued to worsen over time. By eighteen months of age, I would have about sold my soul for a full night's rest or a day without changing an average of ten diapers and washing bed clothes. At this time, our family had decided to intervene and show us that he was just spoiled and that he could be broken. He could be taught to behave nicely. He could be taught to sleep through the night. And, he could be taught to not throw up every time you laid him down.
That intervention was very short-lived because after turning eighteen months old, Noah began vomiting blood. After a trip to the E.R., referrals were made and every diagnostic test for GI symptoms was performed. Noah was finally diagnosed with severe silent gastro intestinal reflux, bleeding lesions in the esophagus, and motility problems. Noah was also diagnosed with failure to thrive and began months of extensive testing and treatment of his symptoms. Immediately, we began running into problems with the reflux medications prescribed for him. If his eyes weren't crossing and he went a day without some strange facial ticks, it was another day closer to resolving his problems. He suffered and struggled with the medications and diet changes for months and months. Noah's body refused to accept the medications and diet modifications we were giving to him. Noah's blood work was always way off, with the strangest being his IgG anti-gliaden (found in people with celiac's) being always over 100. (Normal range is around twenty.) Noah never, however, tested positive for celiac's disease through biopsies at any time over the course of almost three years. Noah's GI doctor, to this day, still says he could have sworn the first time he saw Noah that he was a Cystic Fibrosis baby. All the tests came back negative, even a special genetic blood test to check for the mutating gene that causes C.F.
Just shy of Noah's third birthday, we decided that the only way to get his esophageal lesions under control was to have the Nissen Fundoplication surgery. It was performed laparoscopically the summer before he turned three years old. His recovery was typical of most children with problems with initial gagging and retching, lower nutrition intake, dehydration, and dumping syndrome. Three months after the procedure, with steady weight loss, we choose to have a G-tube inserted for nutritional supplementation. Things began to steady out for Noah and he began to hold his weight for a short time. The following February, Noah began having terrible pains in his chest, along with weight loss and little tolerance for the tube feedings. Noah would tell us his heart was black and that he needed to go to the doctors to get a new blue heart so he could feel better. He would also wake up crying at night begging us to ask Jesus to move out of his heart because he was making it hurt. It took us about three weeks of complete persistence to get the surgeon and GI to agree to perform another endoscopy to check the status of his Nissen wrap. By that time, I had learned to be very aggressive with the doctors because of going so long with no one listening to us. After a lot of humming and hawing, both the surgeon and GI doctor came out of that lab with apologies on their tongues. Noah's wrap had slipped and was sliding up and down in the esophagus. Less than a week later, Noah was admitted into the hospital for his second Nissen fundoplication surgery. This time it had to be preformed as an open surgery versus laparoscopic.
Immediately after the surgery, we noticed something seemed terribly wrong with him. We were assured over and over that we were just worried about him because he was having more pain the second time around, and that Noah would feel better if we took him home. Five days after his second surgery, home we went for less than 24 hours. He was rushed back into the hospital with severe fluid retention, inability to swallow his own saliva, and total malnutrition. After hurried testing and lots of questions, the surgeons found that some how when the hiatal hernia was being repaired, the stitches had been run through the vagal nerve, thus, causing complete paralysis of his stomach along with swelled fusion of the upper esophagus. Noah was taken back in to surgery about 24 hours after we had taken him home. Many hours later, Noah came out of surgery after a complete redo of his Nissen, a pyloroplasty to aid in the emptying of his paralyzed stomach, yet another G-tube site, an NJ tube for drainage during what would turn out to be a very long recovery, and also a PICC line for administering total nutrition thru his blood stream to allow the stomach and esophagus to rest and recover. Forty-five days after being readmitted into the hospital for his 3rd Nissen Fundoplication surgery, we were able to bring him home.
Since that surgery, Noah has had an uphill battle to keep his head above water, both with managing his pain and his nutrition. He has been from G-tube feeding to J-tube feeding, and ultimately wound back on TPN with a Central Line placed in his chest during the year following his 3rd surgery. We will never know exactly what went wrong with his 2nd surgery; all we know is that it has changed his life completely.
Over the next 2 years we were very cautious when it came to any GI treatment for our son. We had sought out treatment for his chronic pain through alternative treatments. When Noah was four and we were desperate for a much deserved break for Noah and ourselves, we chose to have him medicated with a mild mood-altering drug, Seroquel. It was out of desperation and fear of over-treating his GI problems. We choose to take him off of the medication after a little over a year of use, as the doses required to keep him out of pain were too high for his body to be able to handle. Almost immediately we noticed a change for the worse in him. His pain came back, his dysphasia worsened, and his chest pains returned stronger than ever, along with the rapid heartbeat. We knew putting him back on the medication was not an option. We had spent an entire year keeping him medicated to give him a break from medical procedures, and the medication he was taking is not a "safe" long-term alternative for anyone. We did, however, not expect for his symptoms to come back much at all, let alone so quickly. We knew that it meant we were left with really no other choice but to seek surgical treatment for his symptoms after an endoscopy showed weak areas in the Nissen wrap. His GERD symptoms came back as well, along with the sleeplessness, and slowly but surely, the behavior changes also began to rear their ugly head.
Finally, after many more treatments had failed and almost two years to the date after his third reflux surgery, Noah underwent yet another revision for his fundoplication. The surgeon found lesions that stretched from the outer part of the wrap all the way down to the liver. Noah's recovery was long, but smoother than the other surgeries.
Four surgeries later and still refluxing above normal via Bravo Ph Study, Noah really is in the same boat he floated in on. Noah's severe reflux and the side effects of surgical treatments used as attempts to control the reflux have altered his life and ours greatly.
Noah has suffered with pretty much all of the side effects that can arise with GERD and Nissen Fundoplications: ear infections, lack of repressurization of the ear drums, complete loss of tooth enamel, chronic cough, sinus infections, reactive airway disease, rapid heart beat associated with pain, decaying of the back teeth so badly they had to be removed, obstructive sleep apnea, sleep disturbances (Noah is now seven years old and has yet to sleep through the night unless medicated), chronic loose stools, now dealing with constipation and poor motility issues, dumping syndrome, failure to thrive, weight loss, feeding problems, dysphasia, speech delays and problems, behavioral issues, emotional outbursts, aggressive responses to pain, mild sleep apnea, chronic illness, chronically impacted sinuses, blood stream infections, plus many more problems.
Recently, Noah's health has taken a traumatic turn for the worse. Noah has been suffering from extreme failure to thrive for the past ten months. This has taken a toll on his entire body and all of his vital organs. Out of our comfort zone, we decided to try and give Noah's body a break and treat him via a PICC line with Total Parental Nutrition. (Loosely explained, this means feeding the body through the blood stream.) Unfortunately, at the placement of the line, it became infected, thus, sending a raging infection throughout Noah's entire body, from his brain to his toes. Noah would have died if the line hadn't had been accessed at the hospital where they were able to treat him immediately and give him the support he needed to stay alive instead of us accessing it at home as planned. Once again, our Lord above was watching over him and spared his life.
Noah is now seven years old, and our doctors tell us we are lucky to still have him. We don't feel it's luck--it's life and our God is with him every step of the way. Noah is not well enough to attend school with his siblings anymore, so he is home schooling and receiving services through our local public school. It's so hard watching him be alone each and every day. Each day we look deep inside his eyes and search for the little boy that used to smile through all of this like nothing could stop him--the little boy who stuck scissors in electrical outlets and climbed everything in sight--the little boy who just a year ago was attending school full-time and doing well--the little boy who drove his little sister crazy and loved her more than life itself--our little boy--the one we long for more and more each day. We keep hoping that morning will come and out will bound Noah from his room and climb in our bed like he used to, chiming, "Sun's up, moon's down, it's time to wake up!" We haven't given up hope.
Through all of the above Nissen surgeries, it has failed each and every time to control Noah's reflux well enough for him to not need anti-reflux medications. At this time, all we can do is trust: trust the Lord above that he indeed has a plan for our son, trust the GI doctors that have worked endless hours to keep our son alive and well, listened to all of our concerns, and answered each and every one of our questions to the best of their ability, and to trust ourselves as his parents that we are making the best decisions for our son. Never in our life time had we ever expected to endure what he has been through. To watch our son go through this has been very humbling to us as parents and humans alike. It is our wish to be constant advocates of increasing the awareness of the damaging effects of untreated GERD and the impact that the treatments can have on a child.
Written by: Katy, raising-angels
Read more about Children's Stories:
Eli's Reflux and Fundo Story
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