GI Stas

Well I have tried very hard to update this blog more than once a week, but it is very difficult. There are so many details I want to include and sometimes that just takes a little time. Stasik is still doing very well and we have received more information that has been very positive for the most part.
In the last blog we had recently had his heart checked out and all signs indicated that it was healthy. Since then we have had no changes in that condition, however, we have still had a lengthy list of other items to get checked out. Almost everything we were given from our facilitators had a Ukrainian document and one that was translated to English. The “important documents” that were not translated were of course the medical information and history. We asked several times to have them translated when we were there, but we were just told that we would need to get it done when we were stateside. To me this was like taking a skydiving lesson where they tell you how to put the chute on and get in the plane, but don’t tell you how to pull the cord until you are 1,000 feet above ground. This health information was very important to us; more important than some of the other papers we received. If there were any major concerns, we sure did not want to miss them or be too late getting them resolved. For us it was like starting from scratch. We could not answer any questions about him at all; in a sense it was like he was a new born that had unexplained surgeries in the womb…geesh! We just had faith in God and prayed that we would get to everything in a timely and safe manner.
While we were at the cardiologist’s office, we found a nurse that spoke Ukrainian and asked her to try and decipher the medical documents we had received. We soon figured out why no one in the Ukraine would help us out. She determined that some of the medical documents were in fact written in Ukrainian, but most of them were in Russian. All that she could really determine is that Stasik needed all of his shots. Beyond that she could not say anything for sure. We left copies of the documents with the office and hoped that someone would be able to figure it out a little later. In the mean time we went to our pediatrician to get a full round of shots; 3 in one leg and 3 in the other. Poor guy! Wouldn’t you know it; he cried…I have to say that on this one, though, I don’t blame him. I am not a fan of shots either.
With a heart check and a full round of shots, we waited for our referral to go in for our GI appointment. We finally saw a doctor last Thursday. Unfortunately, we had to make two trips to Houston for this one. Thursday turned out to be a consult visit, but we did get to meet with a nutritionist that gave us some good information. The original thought based on surgical scars and vomiting regularity and intensity was that we were dealing with reflux (GERD). Reflux is usually gone when infants hit 11 months of age, but with children that have DS, the doctor said it is very common to see it last longer. That sounded great, but we wanted to know for sure as soon as possible. We were told that we would come back in a few weeks, but with a little sweet talking, I was able to get that changed. One of the nurses (Betsy) hooked us up with an appointment the very next morning. I had to get up early, but worth it so that we could get some answers.
Earlier in the week, Stasik and Debbie were at a friend’s house when Debbie was changing a dirty diaper. Our friend’s niece, who is an EMT, noticed that the poop had a very strange, but familiar smell. She had worked in and been around a lot of nursing homes and the smell was the same. She asked if we had gotten it checked out and Debbie told her not yet. We had some concerns about it, but were still waiting to see the GI doctor to ask. When we went in on Thursday, I made sure I transported a sample with us just in case they could use it. We wanted them to check for Giardia and C. Diff (Clostridium Difficile). These are two species of bacteria that cause intestinal disease and are very common in kids coming to the U.S. from Eastern European countries. C. Diff is caused by spending a lot of time in a hospital and taking antibiotics. It can cause diarrhea and release toxins that can be life threatening if not dealt with. Giardia is most common in animals, but is seen in humans when they come from poor sanitary conditions. Based on the smell, which is similar to mothballs, we think it is C. Diff, but we are still awaiting those results. Either one can be treated with medication and will clear up rather quickly.

On Friday, me and Stas got up at 4:30 and hit the road by 5:00. We had to be in the doctor’s office by 7:15 and I wanted to make sure there was no way we could be late. We arrived around 7:00, found our office, and checked in. Stasik was not allowed to eat before the tests and I was really concerned about this whole lack of food situation. Lucky for me it was so early in the morning that he just slept the whole way. By the time he began to get hungry, we were in the x-ray room sucking down barium contrast out of a bottle. The doctor had scheduled an upper and lower GI test to try to determine if there were any obstructions or narrowing’s in the GI tract that might be causing the food to come back up. Worst case scenario was surgery and best case was medication for GERD. We had to stay in the office until the contrast solution made it all the way through his digestive system into his colon. This required a lot of waiting and taking new x-rays every 30 minutes or so. Stasik was a trooper!! He did not cry much and did not seem to get really hungry.
You know when you take your car to the shop because it has been acting up for weeks? Then, when the mechanic is looking at it, the symptoms never even occur the entire time he is examining it. Then you drive away and go home, only to see the exact same symptoms the very next morning. I do not know what this “Car-shop mechanic fallacy” is called, but it happened to us that day in the doctor’s office. I argued up and down that Stasik would probably throw up the barium and would be upset because he was starving. I just knew that it would be a tough day and only hoped that we would be able to do all of the tests without any issues. Well of course, I was wrong (Don’t tell Debbie I said that). He never cried once about food and did not throw up a thing the whole day.
The doctor doing the x-rays saw a few inconsistencies, but said overall it looked good. He wanted to consult with our GI and heart doctor to rule out any questionable issues. We drove home and fortunately got the results back that afternoon. Dr. Wong said that there were no functional or acute GI issues at all to be concerned about at this time. There was some narrowing, caused probably by the recent surgery, but that was it. The doctor hoped that it would correct itself over time and we would see how things are in a couple of months. He said he believed it was reflux and gave us a prescription to help with that. We were very excited with the news…of course on Friday he threw everything up again…how surprising is that? We are supposed to be getting his poop results back very soon and that should conclude the testing for awhile; now we can focus on the teaching and therapy that we have really been anxious to do.
On a non-medical note, Stasik is outgrowing his clothes and now weighs 17 pounds. Pretty soon he will be able to sit forward in the car and watch Mickey Mouse with his brother. We were in Central Texas this weekend and took some time to get some pictures in the bluebonnets that take over the texas roadways this time of year. Stasik was mesmerized by them. I do not think he has ever just been able to sit out in the sun and just be free and surrounded by such a beautiful sight. After his fascination subsided a bit, in true Stasik fashion, he tried to see how a couple of them tasted. Maybe that was what was on his mind all along and he just did not know where to start. Still trying to figure out what goes on in that mind of his sometimes. He met his Nana (my mom) this past weekend and hopefully in the next month will finally meet the full gamut of family he has here in Texas. I am sure they are all anxiously waiting and they will get to see the new improved version we have been working on the last several weeks. Praise God!!