Eli's Story

Eli's Mom
January 2005

Eli is our third little boy. He was born August 23, 2002. He weighed 10 pounds. He was busting out of his little newborn outfit we got him for the hospital. I knew something was wrong right from the beginning. He cried and arched and acted like he had a tummy ache right from the beginning with nursing. Around 3am his first night in the hospital after being born he threw up breastmilk and seemed to feel better after that. I told them I didn't want to take him home but they made me anyway :).

After we got him home he seemed happier. For the first 7 months of life he caught every illness you could imagine and had a difficult time getting over them. Ear infections that lasted through 3 treatments of antibiotics, pneumonias, RSV, sinus infections, bronchitis, chronic colds and coughs. And, through all this he was vomiting everything and he would vomit old food. Like we would feed him green beans. Well, the next night if he didn't vomit that day (which was rare) he would vomit green beans from yesterdays dinner. He would vomit old curdled milk at 4am or the next morning. He would wake up vomiting whatever he had had the night before. But, I assumed it was from being ill and that something was wrong with his immune system.

Our pediatrician decided to send us the Children's hospital to see an immunologist. After some tests we found he did have a low immune system. His immunoglobulins and fighter T cells were low. Because both were low he was considered immunodeficient. He was also tested for CF because of his symptoms (big scare) but it came back negative, Thank the Lord! Our immunologist sent us to the GI because of the vomiting and told us he would see us back in 2 months and his immune system would be tested again to see if it was deteriorating or building.  We went to the GI. He diagnosed him with reflux immediately and put him Zantac which did not work. Eli was actually worse. Then began the different meds. We ended up on Prilosec which was a miracle drug for Eli, his drug of choice.

The Upper GI he had done showed significant reflux, and while we were watching the fluids going up and down his throat they noticed on the screen his tummy wasn't emptying at all so they had us walk around the hospital and come back in a half hour to see if he had emptied. He had not so they scheduled an emptying study.

After an hour of being held down with sandbags on the table his little tummy was still full. So, we were put on Bethanechol and Erythromycin as well for the next 9 months, 3 times a day. Not fun.

Well, needless, to say the vomiting continued. And, the drugs for his DGE (delayed gastric emptying) weren't helping. His immune system did go back once we started treating the GERD. He was getting sick less often so all that was left was the GERD. The painful swallowing, red eyes, discomfort, esophagitis, vomiting and retching.

Our GI finally sent us to meet with a surgeon to see what he thought. I will also mention that our GI has his own surgery team but thinks they don't do a good enough job (scary). So, he sent us to UCLA. They are 3rd in the country and #1 in the west with there specialty being GI surgeries. I went into this with all kinds of questions about what kinds of tests and things he would want on our son, and if we could see their GI since our GI couldn't remember drugs or procedures Eli had had. So, my husband I were extremely surprised when he told us our son needed a fundo and pyloroplasty right away. We were stunned.

He told us that based on looking at his test results that the significance was so bad that he needed the surgery or could develop problems like barretts, erosions, bleeding and major damage or cancer to the esophagus. We told him no, that we had read to many horror stories and new to many families with failed Nissens. And, we didn't want our son retching and not able to function properly. He assured us that this was not the case. He was our second opinion. We went home thought on and talked to people and sent some statistic numbers to him and he was quick to reply with reassurance and statistic #s that were "more accurate" which calmed our fears. We are Christians and had been praying throughout all of this. And, felt at this point the Lord had lead us to this surgeon. We liked him and trusted him. I could not make this decision because I was just torn over the what ifs. Two weeks later my husband scheduled it at work without my knowledge and told me when he got home, February 11, 2005 was the date, a Friday. He also put in that he thought this was the right choice and that we just needed to trust the Lord. So, we are trying.

We went into pre op scared to death with my mom at our side. This was the worst part for those of you who will be going through this. They gave him this med that was supposed to knock him out (Eli does not do oral). I told them he wouldn't take it so he fought it and got half down. So, needless to say he was half knocked out. And, they had to pull him off my husband's body screaming and reaching for us all the way into the operating room. It was heart wrenching. Definitely the worst moment of my life, we are still not over it, that was 2 weeks ago.

While in the waiting room we got a call from the surgeon. He told us they weren't finished yet but that he wanted to let us know that the fundo went great and he didn't expect it to be too tight because he went ahead and dilated it while he was in there since that was my biggest fear. Eli is a 36 pound 2 year old at this point, and loves to eat more than anything. Then he began to tell me that when they went to do the pyloroplasty (open the bottom so he could empty faster) they found that his pyloric sphincter muscle (the one that pushes food out) was still attached to the side of his stomach and had never separated during development, it was held to the side of the stomach in an upward position with bands of tissue and hadn't been able to work properly. I immediately began laughing, that sounds crazy, but you have to understand that I wasn't sure he needed this surgery and this was my confirmation. We would have never found this if we hadn't done the surgery. My next question was couldn't that have caused him to look like he had reflux and did he still need the fundo after finding that? Well, I still have those questions. He assured me that he has severe GERD as well. I am not so sure but try to be.

I went in to post op scared to death expecting him to look bad. He looked better than expected. I lifted the hospital blanky to see the reality that had been done to him. Five, smaller than I had imagined, incisions were there. Phew, I got that over. Then I sat and stared at him. The nurse came by and told me he would probably sleep for hours. Of course right then he began waking up. He was crying so I lifted him over with all those tubes and irritating thing stuck to him and held him close crying. He had tubes everywhere and it was difficult. After an hour and a half the nurse came by and asked if I would like a chair with arms, I immediately replied YES! We finally got a room after that and went up to the children's hospital.

Well, the rest of the day and night Eli was either begging for a drink with his horribly chapped lips or in a drug induced sleep. He only had morphine 2 times that day because the new young nurse told us we shouldn't ask unless he was in excruciating pain. He was crying in pain and my husband, I, and Mom were in tears because it was so awful. The older night nurse came on and we like her much better because she gave him what he needed to get him through it. He finally peed at 11:30 that night which was a big deal to the Docs. They had to Bolus him.
Next day he was in a lot of pain. But, after one more good dose of morphine he began asking to walk after and interesting ride down the hall in a wagon that seemed to make him realize life could go on. Before the wagon I think he thought he was going to die in that room. And, he began to get better after that. He had finally had a drink, had some jello, and some broth. He was sucking down the beloved Capri-Suns.

We took him home Sunday. His surgery was Friday and began the soft food diet. He was eating pancakes, pastas, hot cereals, green beans, and other foods. Then Sunday, 8 days after surgery, he was munching on a soggy breadstick and swallowed a big bite. He began choking, retching, slimy stuff coming out his nose and mouth, it was horrible. It lasted about 10 minutes. Scared us. We gave him liquids the next few days, then tried feeding him after that and he couldn't eat, he retched up whatever was fed to him. Since that day, it has been a week and a half he has only eaten one good meal, pasta squooshed, and green beans, and he had pancakes once and he held these down fine. He is now unable to swallow jello and anything thicker.

We took him back to UCLA and had another upper GI done yesterday. His tummy was draining (yeah) and we could see his new valve (fundo) was intact. Not sure that is what I wanted. And, they said it looks a little swollen. They put him back on a liquid diet for 2 weeks. And, that is where we are as of writing 'Eli's Story'. I am still unsure about this fundo and I told them at the hospital yesterday that I am not happy and this is definitely not a improvement on his quality of life. I am hoping these doctors are smarter than I think they are and am going to give it these two weeks before I become and anti-fundo person like most are. So, hope that this will pass as I hope.