The last few days have seen much improvement for Stasik. He is getting stronger every day and is now starting to keep more food down consistently. Over the last week we have learned a lot of new information, but yesterday was the most revealing day to this point.
It is so difficult for adoptive parents when they bring their children home from another country. The adjustment is tough for both parties, but unlike bringing home a birth child from the hospital, there are so many unknowns with adopted children. All of the medical records we received from the Ukraine were in Cyrillic. This left us with the inability to answer questions about his previous condition and also with a lot of questions ourselves. Because of this, people in the medical profession tend to be a lot more cautious and conservative when checking Stasik out. Although I am glad they are taking precautions as they run tests and gather information, it certainly creates a longer timeline to reveal the answers we are anxiously looking for. We have a long list of questions and concerns and slowly we are getting answers and starting to learn more about our new son.
Yesterday we took Stasik to the Texas Children’s Cardiology Unit to try and determine what and if anything was wrong with his heart. The last doctor Debbie spoke to in the Ukraine told her that the problems were too severe for him to have a prolonged life. We obviously wanted a second opinion.
It seems that the doctor we met on the plane followed through with his promise and I believe he went a little higher than we expected into the administrative chain of command. We were asked a few times who it was that we knew to get Stasik in so soon. We told them we met a doctor on a plane, but I believe that God played the biggest part.
It was a tough day for Stas. He went through the gauntlet of cardiac tests and was very stressed at the end of the day. We hated to put him through all of that, but we knew we had to have answers. We spent most of the day going from room to room and driving to and from Houston. In the end, though, we got answers to medical questions and our prayers. The doctor in charge of Stasik’s case came in and explained that based on the translation of his medical records and the tests that were run, they were able to piece together his past and his current condition. Stasik had a double aortic arch, a hole in his upper left chamber of his heart, and a Patent Ductus Arteriosis (PDA) that did not close on its own. We have had experience with the PDA as it was a concern with our first son Carter as well. Fortunately, his closed weeks after birth and no further medical attention was needed. The other issues we were not familiar with, but learned more about while visiting with the cardiologist. What we found out was that all of these issues had been treated and repaired appropriately......Chalk one up for the doctors in the Ukraine. As the doctor continued to talk, I kept expecting a but….., it never came. Stasik was given a clean bill of health; we were told that we should not have any more concerns from a cardiac standpoint and to come back for a follow-up in a year. I literally wept right there in the hospital, tears of joy and relief. I thanked God for his mercy and for guiding the hands of the Ukrainian physicians. Our prayers had been answered and it was one more thing we would be able to move past and focus on our next item of concern.
One other bit of information we found out was that Stasik is in the bottom 3% for size. We knew he was small, but even with the weight he has put on in the last two weeks he still has a lot of catching up to do. The cardiologist, only with prompting, finally gave us an internal referral to see a GI specialist. After telling us where Stasik ranks statistically we would have thought he would be more concerned about his lack of size and perpetual vomiting. He wanted us to get a referral from out pediatrician first. After we told him that had been done already, he told us to follow-up on that referral and try to get in as soon as we could. I told him that I needed a referral from him and that it was the only way we would be able to get an appointment in a timely manner. He finally agreed and hopefully we will hear something soon. I know that doctors have to follow protocol and go through an order of operation, but with his extreme diminutive body size, I would think that a doctor would maybe place a larger priority on getting him in immediately. I know that they deal with a lot of kids that are probably much worse off, but this is the father coming out in me and my boundless concern for my son. That is one thing that will never change.
Stasik just seems so happy right now. He is always smiling and kicking his feet. He loves being held and like most toddlers is starting to become pickier about the food that he eats. When we first got him home we thought he would eat dirt if we put it on a spoon. Now he turns his nose up at some of the unflavored foods that we feed him to get him some extra calories. To me this is a good sign that he understands he has choices and that there is always more where that came from.
He is such a busy body and is all over the place. He hates to sit still and is constantly in motion. He army crawls all over the house and is starting to follow us around. He used to stay in one place, but now he seems to want to be where the rest of his family is. We started putting him in an activity jumper with a bunch of little toys around it. He has to stand up in order to reach them and play with them. Our hope was he would begin to stand more and strengthen his legs. The first few days he would just lean from side to side and we had to place a small pillow in front of him so he did not fall over. After a couple of days we were able to remove the pillow and he was able to almost sit up by himself. Today, he actually started jumping while pushing up and down with his legs. He did this for half an hour until he finally wore himself out. He is having so much fun and once again he surpassed our original expectations.
Watching Stasik achieve and progress every day is just so rewarding. You can tell he wants so badly to be like his brother and I have no doubt that as he gets stronger and healthier he will do just that.
My kids have various GI issues (mostly undiagnosed), and we've been to quite a few GI doctors. I'm glad you did get a referral to get in more quickly, but the truth is, the doctor is not likely to be overly concerned (probably why they wouldn't get you in quickly to begin with). I would guess a majority of their patients are below the 3rd percentile in weight. Vomiting is also pretty common. As long as they can retain enough food that they are gaining weight you're not likely to get a GI doctor very concerned (or eager to do things quickly). (Losing weight is the one thing that will get them concerned and on the ball.)
ReplyDeleteMy guess is they'll tell you to try thickening his liquids to help with the vomiting, and to keep a food journal to try to determine if it's a particular food causing it (it sounded in another post like you're already doing that), and run some basic tests to rule out a few serious concerns (like inability to absorb fats, etc). If those tests come back negative and he's able to gain weight in my experience they'll stop trying to diagnose and just make sure the issues are somewhat manageable and send you on your way. But maybe you'll have an awesome GI who will work with you to figure out exactly what's going on -- I hope so!
Oh, and I'm so glad to hear his heart is healthy! How awesome!
I am surprised that one of those huge children's hospitals in Texas doesn't have a clinic for adopted children. Maybe you should try taking photos of his vomit and emailing it to some doctors/hospitals. I don't think that tiny little thing should be losing so many calories. You go, Papa Bear!
ReplyDeleteGreat news about Stas's heart. I'm sure he will start gaining weight and growing soon. We will have to see how he likes my Gumbo before too long. Hope ya'll have a wonderful blessed weekend.
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