Posted By Posting
Jan 26, 2002
Patti
Spencer's story
Spencer?s Story Spencer was born on Valentine?s Day, 1989. His entry into this world was far from how I had anticipated. Instead of having a quiet peaceful birth, his birth was surrounded by all kinds of medical technology. He had to be suctioned as soon as his head was out to avoid aspirating meconium. He was then taken to a warmer bed to be suctioned some more. He was in distress so he was just about immediately taken to the NICU where he spent the next 3 weeks recovering from an infection in his blood called sepsis. When they began to feed him, it was obvious that there were problems there as well. He had a difficult time taking formula and would spit up frequently. He was diagnosed with gastroesophageal reflux. I didn?t know much about it but thought it wasn?t too big of a deal as all babies spit up. After being at home for about 10 days, I learned otherwise. During a middle of the night feeding, Spencer refluxed and aspirated. He stopped breathing and turned blue. Again we were back to the hospital. This time with the diagnosis of aspiration pneumonia. He recovered well and came home. At home, I continued to do all that I knew. Every time he spit up, I refed what he spit up. Most of my day revolved around feeding Spencer. Fortunately, there weren?t any more episodes to scare me like that night. At about a year old, I noticed that Spencer had stopped spitting up! We were so happy. I thought that things were finally settling down. He had frequent ear infections and other respiratory infections but I didn?t think much about that nor did the pediatrician. As time went on, he started having symptoms that should have made all of us think some more. He started wheezing and coughing at night. I would go into his room an find him blue. I continually brought him to the ER and to the pediatrician but when he was there he was fine so they didn?t do anything. The doctor I worked for finally convinced Spencer?s pediatrician that there was something wrong that forced me to sleep sitting upright so Spencer could lean against me as he couldn?t sleep lying down. We then began home monitoring with an apnea monitor and pulse oximeter. The monitoring was recorded by the apnea monitor. It showed frequent oxygen desaturation. Oxygen saturation should be at or above 95%. Spencer frequently dropped into the 60s and 70s. He was then being treated for asthma but that wasn?t helping the problems at night. Spencer had his andenoids removed when he was 2 thinking that his respiratory problems were due to large adenoids. It didn?t help. He then had his tonsils removed when he was 3. Again, it didn?t help. Finally after recovery from the tonsillectomy, we saw a pulmonologist for his respiratory problems. Immediately, the pulmonologist suspected reflux as being his problem despite the fact that he didn?t spit up. His suspicions were confirmed when we saw a pediatric gastroenterologist. A pH probe was done which showed that Spencer was refluxing 25% of the time. He was immediately started on medication and an endoscopy was done. This showed that he also had esophagitis due to long term refluxing of acid. We tried different med combinations. We tried changing the meds and raising the doses. Nothing worked. Finally all he would eat was yogurt. He was losing weight and was miserable. I changed GI doctors and he almost doubled the meds. Things still didn?t get any better. Finally, after having three more endoscopies that showed worsening esophagitis, it was decided that due to the degree of esophagitis as well as Spencer?s ongoing respiratory problems, that surgery was the best choice at this time. Off the surgeon?s office we went. Determined and relieved that this was indeed the answer for my almost 4 year old. We saw the surgeon who explained that they would make an incision and take the top portion of the stomach and wrap it around the esophagus to tighten the sphincter muscle that wasn?t functioning and was allowing the reflux. The surgery, called a Nissen fundoplication, was done. Recovery was hard. Then it was time to let Spencer eat. He drank and vomited. He ate and vomited. This went on for several days. We couldn?t take him off IV fluids because he couldn?t get anything down. So, at almost 2 weeks after surgery, the surgeon did an upper GI to check things out. It was found that the ?wrap? was too tight. He only had a 1 mm opening for things to go through. It was barely adequate for saliva. So, the next morning, Spencer went back to the OR to have his wrap dilated. Almost immediately afterward he could eat. No problems at all. As time went by, it was obvious that not only could Spencer eat. He could reflux too. It was very upsetting to watch this happening. The symptoms weren?t as bad as they had been but things weren?t pleasant. I took Spencer back to the doctor many times. The doctor told me he couldn?t be refluxing because he had just had a fundoplication. He had the pH probe and endoscopy repeated and the testing showed that he was indeed refluxing again. I think the doctors really took things to heart when Spencer had a GI bleed in December. Only 11 months after surgery. At only 4 yrs old, he came into my room at about 5 AM to tell me that he was burping up blood. My poor baby. All we went through to have the initial surgery done and here he was in horrible shape again. This time we went to a different surgeon who did a different type of surgery for this problem. Just 10 days short of a year after Spencer?s first abdominal surgery, he had his second abdominal surgery. This time it was an uncut Collis-Nissen fundoplication. He also had a pyloroplasty done to aid with stomach emptying. This surgery was longer and more difficult than the first. However, after he recovered, it seemed like the surgery was helping. Eating was difficult again but there was no anatomic reason. Things were progressing nicely until about 9 months after surgery when Spencer started having painful episodes of vomiting. This was very unusual and very different from anything I had ever seen with him. We went back to the GI. He did another endoscopy. When the doctor came out after the endoscopy, he told me that there was a 2nd hole from the stomach to the esophagus which allowed Spencer to reflux. There was a lot of inflammation around it since acid probably just sat there all the time. This needed to be corrected. We went back to the same surgeon who had done the 2nd surgery and Spencer had his 3rd abdominal surgery in less than 2 years. This time, he had also been losing weight so the doctor placed a feeding tube. Recovery was a little bit easier this time thanks to the feeding tube. We didn?t have to worry about Spencer?s eating as much. However, even with the G-tube, Spencer didn?t gain weight well. At 6 years old, he only weighed 36 lb. Spencer had several severe infections of the G-tube site during the first several months and was hospitalized 3 times for cellulites and once for a necrotic abcess and peritonitis thanks to a little boy who pulled his tube partially out. The doctor did an endoscopy while in the hospital about 5 months after the 3rd surgery and found that Spencer still had esophagitis. The 3rd surgery didn?t work at all. We then spent the next 2 years trying to figure out why fundoplications weren?t successful for Spencer. We were told that the success rate is typically >90%. Why didn?t Spencer fall into this category? We tried high dose steroids to see if it made any difference in his oral intake and then repeated an endoscpy to see if there was inflammation present while on steroids. There was. We also tried an elimination diet. Spencer had a couple of foods that we knew he wasn?t allergic to and was able to eat them. Otherwise, all he had was a formula called Neocate 1+ through his G-tube. We did this for several weeks and repeated the endoscopy. Still no improvement. Finally, the last thing I could think of was to go to the best Children?s Hospital in the country. I found Boston Childrens Hospital. I took Spencer there in June 1997. We met a GI doctor there who was very interested in Spencer. In a whirlwind week, Spencer had the full scope of GI testing done. He had lab work, an upper GI, pH probe, esophageal manometry, and an endoscopy. They found that his previous fundoplication was completely disrupted. His esophageal sphincter muscle was so far open the doctor could see out Spencer?s mouth with the scope while in the stomach. There continued to be reflux, esophagitis, and esophageal dysmotility. The GI doctor there suggested that we try medications for the dysmotility first in addition to the reflux meds he was already taking. We tried one which helped the dysmotility but made the horrible reflux worse. Then we tried another which had the same effect. When those medications failed, it was again time to consider surgery. The 4th abdominal surgery was done by a surgeon at Boston Childrens. He was kind and caring and explained the possible procedures he was planning. He wouldn?t know just what he would do until he was in the OR. After 12 hours in the OR, Spencer went to the ICU after having a partial esophagogastrectomy, new gastrostomy, and modified Belsey fundoplication. Recovery was more difficult than any of the other surgeries and perhaps harder than all 3 combined. However, the surgery was successful. After several months, Spencer was weaned from G-tube feedings and was doing well. The G-tube was removed 10 months after surgery. Spencer was medication free and we were thrilled! He started to experience some abdominal pain, diarrhea and dizziness about 15 months after the 4th surgery. He had had episodes of dizziness in the past as well which we could never find a reason for. The GI doctor in Boston tested Spencer for dumping syndrome which is when the stomach is emptying too rapidly. This happens frequently when the stomach is small which Spencer?s by that point was very small. That is what the problem was and we were able to easily treat it with diet and cornstarch which helps to control blood sugar. Things were good again. Spencer went to summer camp for the first time and loved it! He stayed 4 weeks. After camp however, he was burping and hiccupping which were always signs of reflux for him. We called the GI doctor and started Zantac. That didn?t help so he started Prilosec. Testing was done yet again. The pH probe shoed that despite not eating for most of the test, that Spencer was indeed refluxing and there was mild esophagitis. The doctor added medications. Things were under control for a while and summer came. Spencer went back to camp. This time for 8 weeks! I went to see him after 2 weeks. He looked horrible. Dark circles, hoarseness, coughing, and most of all, he didn?t want to eat even though we were taking him out for some fast food! I talked to the GI doctor who felt that it was probably time to consider surgery yet again. I thought and thought and thought some more. It just sounded so complicated. Much more complicated than any of the prior surgeries. I consulted with surgeons all around the country. There was one in LA, one in Salt Lake City, the surgeon who did Spencer?s 4th surgery was in Madison, WI, and we also consulted a very seasoned surgeon in Boston. The surgeon in LA wanted to remove Spencer?s stomach and attach it to his small intestine. The surgeon in Salt Lake City wanted to replace his esophagus with colon. The surgeon in Madison wanted to replace the bottom portion of his esophagus with small intestine since the small intestine has motility which would push anything that Spencer refluxed back into his stomach. However, he would only do it if the surgeon who trained him, flew out to help. The surgeon who trained him was the surgeon in Boston. The doctor in Madison suggested that we go straight to Boston as it would be better for Spencer to be in Boston. Shortly after Labor Day 2000, we went to visit Hardy Hendren, MD at Boston Childrens Hospital. We had spoken in early August so he was familiar with the case. He suggested the same surgery that his former protogee in Madison had suggested. Obviously that was going to be the procedure we would pursue. He also felt that he may take part of Spencer?s colon to enlarge his stomach as his stomach was ?tiny?. Dr. Hendren is a very busy man even though he is much older than your average pediatric surgeon at age 75. The first day he had an open day in the OR was December 13, 2000. Spencer was scheduled. Early in the morning on December 13th, Spencer?s prep for the surgery ended. It had started more than 12 hours earlier. At about 7:30 AM, Spencer, his father, and I went to the OR. Spencer went into the OR at about 8 AM. Dr. Hendren then came to talk with us. He writes his own consent forms so that nothing is ever left out. After that, Spencer was in Dr. Hendren?s hands. He remained there for almost 16 hours. At about 12:00 midnight, Dr. Hendren emerged from the OR and immediately told me we had done the right thing as our GI doctor had changed his mind and hadn?t been in agreement. Spencer?s esophagus had been ?destroyed?. He wasn?t able to do the stomach as he felt he?d already been there too long. I agreed. Obviously, this recovery was far more difficult. Spencer had problems with pleural effusions, pneumonia, a leak at the atastamosis where the esophagus and small intestine were joined, and a GI bleed. He remained in the ICU for about a week and was on a ventilator for the first 3 days. He continued to require oxygen for about 2 weeks. Things finally improved and he went home on G-tube feedings at the end of January. In February, Spencer told me he was refluxing a LOT. Back to the hospital we went where Spencer stayed for another 2 weeks. It was then decided that Spencer definitely needed the surgery to enlarge his stomach. We then went home again and tried it again. Things weren?t good and Spencer was losing weight so we went back again to have a new kind of feeding tube placed that although you could feed into the stomach it also had a port that bypassed the stomach. It took about 2 weeks to increase his feedings but once there, he gained weight like crazy! 25 lb in 3 months! Spencer went back to school in mid April. He managed to pass all of his 6th grade advanced classes and was allowed to progress to all 7th grade advanced classes! In late July, after being able to enjoy several baseball games, a trip to the Jersey shore, and a trip to Fredericksburg, VA, we headed back to Boston to have the gastric augmentation. I wasn?t feeling very good about things. I had no clue if the surgery would work or not but I knew that Spencer could stay on his J-tube feedings forever. So, another huge surgery prep begun. Spencer went into the OR this time at about 11:00 AM and was out by midnight. His surgical recovery was smooth this time! He and I were very excited! However, when it was time to start feeding, it didn?t go well. Spencer wasn?t hungry and wouldn?t take anything orally. They tried his G-tube at a low rate. However, what was left after 3 hours of feeding was more than what had gone in! With medications added and time, things got good enough that Spencer could be fed and we could go home! Remarkably, Spencer was able to start school on time and is doing well enough to be on the honor roll! He even got a B+ in Algebra! He continues to have problems with gastric emptying but is now on a new medication which is helping much more than anything else has. He continues to require tube feedings but happily eats orally as well and almost never forgets to ask for lunch money in the morning! We have traveled a long, bumpy road and I?m sure we aren?t at the end. Spencer?s experiences in life, appear to be shaping his future. He has very high goals set for himself. He wants to be just like his surgeon! Dr. Hendren told him that he can do better than that! Spencer certainly has the potential to be a pediatric surgeon. He?s a very bright and assertive young man. However, I tell him that as long as he?s a happy and productive human being, I will be more than proud! I sing Dr. Hendren?s praises wherever I go. I can?t even begin to think about where Spencer would be today without Dr. Hendren.
Jan 27, 2002
Susan Gunther
Message for Patti
Patti, I had NO IDEA what you have been thru with Spencer. I completely feel for you and for your son. There is light at the end of the tunnel when you say he is doing so well in school and wants to be a ped surgeon. Despite the medical complications from the reflux and all the operations he has had, he is an inspiration to us all. I'm in amazement just how strong and bright that young man must be. You must be very proud of him. You should be voted Super Mom for having the strength and courage to see him through all Spencer has been through. I can only wish I find the same strength you have had when Spencer has needed all those surgeries. Thank you again, Spencers story is an inspiration to us all! - Susan Gunther email: mgharway@aol.com
Jan 28, 2002
Michelle Kennedy
You Give Me Strength
Patti: I thought life had been hard for us -- we thought it was difficult dealing with reflux since Evan's birth nine months ago. What an absolute testiment to your faith and Spencer's strength and will that you could deal with the many complications of this vicious disease for so many years. I don't know how you do it, but you must clearly be made of stronger stuff than many of the rest of us. Just when I'm feeling depressed about Evan's circumstances and cheated out of many of the early experiencies I wanted to have with my son, I will think of your example and know that we can get through anything together. It should be enough that he is with us, that we can support him and love him, and that the complications from reflux, while frustrating,have been manageable so far. Thank you for sharing your story and giving us all strength. You have an amazing child and Spencer has an amazing mother. Michelle
Feb 01, 2002
Chelle
dear Patti
And I thought we had been through a lot! Man, what a road you all have had to travel. Thank you so much for sharing about your dear Spencer. I am glad that Dr. H was able to help Spencer so much. How frightening this must have been for both of you. Chelle
Feb 20, 2002
Sandra Ringelstein
Spencer's Story
What an incredible story! There are no words that describe how I felt reading about Spencer's story. Your family is remarkable and I am so happy to hear things are looking better in the end. Best of luck to you an your family.
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