Finally, on November 30, we went to KKI for the first time. We met with several experts at the same time: a nurse practitioner, a nutritionist, a behavioral therapist, and a speech and occupational therapist. We provided a detailed history, and then it was time to watch LM eat! We brought several of his favorite foods, and some puree as well. LM did his thing, chewing and spitting like there was no tomorrow. Both the behavioral and speech therapists were surprised that LM was so excited to eat, but just wasn’t swallowing. After his meal, the team met with one another to discuss their findings before giving us their recommendations. When the team came back, they were baffled that LM was so interested in eating. They had expected him to present more like some autistic children who do not want anything near or in their mouths, so they were surprised that he was so excited to eat and chew, but just didn’t swallow. The team wanted LM to have an upper endoscopy done to be sure that there were no obstructions before KKI started a treatment program. They didn’t want to be forcing food down his throat if it would hurt him. They said that they usually try an Upper GI first, but that it might be difficult to get him to swallow the barium solution because he never took a bottle, and wasn’t doing very well with the sippy cup at the time, either. We were referred to the gastroenterologist. The KKI team also advised that we start working on giving LM puree on a spoon, as that would be how they would start treatment. They suggested that we try giving him foods he liked on a spoon, to get him used to the spoon before trying purees again.
The first appointment with KKI was one of my worst days. I had pinned all of my hopes on leaving KKI with an answer. To hear that the experts had never seen anything like what LM was doing left me completely lost. I cried a lot after we left that day. I was really hoping that they would at least be able to say that they had seen something similar before, and this was how they previously solved it, but I felt like they had given me nothing. Big Man kept reminding me that at least we had a plan of action now, but I was pretty depressed, since the next appointment with KKI (which wasn’t even to start treatment yet) was for March 3.
Surprisingly, our appointment with the gastroenterologist was made for December 28. We thought things were moving along quickly, until we realized that the December appointment was only for an initial consultation with the GI doc. We had another pediatrician appointment in the meantime, and I brought some Cheerios with me to show him what LM was doing. The pediatrician was also surprised that he was not spitting because he didn’t like the food. I started carrying Cheerios to every doctor’s appointment, so I could show them firsthand what he was doing. Until they saw him eat, most doctors didn’t understand was I was saying when I tried to describe that he just wouldn’t swallow anything. They generally just kept recommending that I try different foods, but didn’t understand that he was spitting not because he didn’t like the food, but because he just thought that’s what he should do.
Back to Baltimore in the ice (again) on 12-27 to see the gastro doctor (Dr. K). He wanted to do an upper GI as well as an endoscopy, because the endoscopy would show any abnormalities in the linings of the esophagus and upper stomach, but a twist or a kink in the system would only be visible on an upper GI.
In the meantime, we had started trying to feed LM some food by spoon. We were giving him Cheerios and Rice Chex on the spoon, and he would take them, chew, and spit as usual. Eventually, we tried giving some puree with a Cheerio on top. He would not take the bite into his mouth if there wasn’t a Cheerio on top! We always had to have a bowl of puree and a bowl of Cheerios ready at every meal! Even with this trick, LM was spitting out everything on the spoon. Even the puree! While visiting my parents over the Christmas break, my mom tried feeding LM some puree and shoved the spoon way back over his tongue and dumped the puree down his throat. She was able to do this twice, but LM continued “eating” as normal after that.
On New Year’s Eve, LM did not want anything to do with dinner. Luckily, Big Man was feeding LM and he persevered after I would have given up. The first spoonful, only the Cheerio came out! We were stunned, but trying not to freak LM out by making a big deal out of it. We were quietly celebrating and watching LM eat spoonful after spoonful of puree and only spitting out the Cheerios! We were amazed! He finished a whole container of puree! What a celebration! From then on, at each meal, LM was eating containers of puree, with a Cheerio on each spoonful, with each Cheerio being spit out.
On January 5, 2011, we went to our appointment at Johns Hopkins for the Upper GI. LM was not allowed to eat anything after midnight, and wasn’t allowed to have any breast milk after 4 or 6 AM (I think); the appointment was around 11 AM. First, they had to do an X-ray to get a baseline, which was very hard to watch. They use sandbags to hold down the baby’s arms and legs. They do not hurt the baby, but LM was confused, and it is very hard to watch your baby upset like that and not be able to help. After that, we had to do the actual upper GI, which involves the patient drinking a barium solution and then getting another X-ray. We had a different doctor than we had seen at the consultation. LM actually drank the solution (which we were a bit surprised about), but the X-ray machine is a bit like a CAT scan machine, where it is a small space that appears (to a baby inside) to be closed in on all sides. Big Man was in charge of holding LM’s legs, and I was in charge of holding his head still and feeding more barium. The barium solution was in a bottle, which LM had never successfully taken prior to this day. He was so hungry that he was drinking it, but he wasn’t terribly happy about being held down in the X-ray machine. He did OK during the time when he was on his back, but once we had to turn him onto his stomach and hold him down, he was really done with it. At one point, he was screaming and trying as hard as he could to get out of there. I was, in turn, trying to hold him still and keep him from banging his head on the machine. It was terrible. It’s important to stay calm in these situations because they say that the parent getting upset just makes the baby worse, but it was SO hard not to be crying myself. Eventually, they had to wait a minute for the barium to work its way to LM’s stomach, so I was able to hold him and feed a bit more barium, but it was a no-fun day. After the exam was over, I remember we had to ask the doctor if everything looked OK. I was surprised that he didn’t tell me anything without me having to ask, and I was a little put off by it. Either way, he said everything looked fine; there were no irregularities and no signs of reflux.
Since the upper GI was fine, I was hoping we wouldn’t have to do the GI endoscopy. Unfortunately, that was not the case. Dr. K still wanted to look at the lining of LM’s esophagus, which requires an endoscopy. The endoscopy was scheduled for January 18. We had to go in early and check in with Pre-Op. It was very sad to see the Little Man in his hospital gown. He’s so little, even the short-sleeved baby gown was like long sleeves on him! We were briefed by what seemed like 100 people, the nurse, the doctor who would do the procedure (a third GI doc), the anesthetist…. One parent was allowed to go back with LM while he was put to sleep. I was going to go, but Big Man kept suggesting that maybe he should do it. When the anesthetist came to get LM, he asked which parent was going to come. I asked, “Is it going to be bad?” He said it sometimes is, so we decided Big Man should go instead. I gave LM a big hug and tried not to cry. After they left, I realized I had forgotten to ask the anesthetist to take care of my Little Man. Big Man and I went to the cafeteria and got some lunch. We were supposed to be called when LM was done, but no call came, so we went to wait outside the recovery room. We waited for a few minutes, but I really had to go to the bathroom, so I went. While I was on the toilet (of course, the minute I leave!) they called and said he was in recovery and needed me. I rushed out of there as quick as I could wash my hands. I went into the recovery room, and poor LM was laying there on his little gurney. It is unbelievably hard to see your baby hooked up to a bunch of tubes and wires. He was just coming out of anesthesia, so he was crying and a little floppy. It was so sad! We just sat there for the longest time while LM woke up. Eventually, we tried nursing, and he woke up a bit more. Big Man had talked to the doctor, and said that she said everything looked fine, but the biopsy sites bled a bit more than expected. It would be a little while until we got all of the biopsy results back.
We had convinced ourselves that nothing would be wrong, that the biopsies would come back normal, and that the Little Man would just eventually grow out of his eating problems. I think it was the only way that I would not worry constantly. I was afraid that something would be wrong, but I just kept telling myself that everything would be normal. Then, we got the call from Dr. K with the biopsy results. My Little Man had been diagnosed with eosinophilic esophagitis. My first question was “How do you spell that?” Dr. K explained that eosinophils are white blood cells that appear in areas where there is an allergic reaction. For example, when you have asthma, there are eosinophils in your lungs, when you have hay fever, they are in your nose, and LM had eosinophils in his esophagus and upper stomach. I cried. A lot. I had convinced myself that there wouldn’t be anything wrong, and here was this big diagnosis right in my face. So I looked up EE, and found a great website: http://www.eosinophilicesophagitishome.org/. It’s a chronic condition that can be made better by avoiding the foods that cause the allergic reaction. The next step was to see the allergist at Johns Hopkins.
Part 3 in a few days, after we come back from seeing The Wiggles live!!
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