Xyler had a cardiologist appointment the other week. We took all of our kids to it so that they could get their blood drawn for a research study we are a part of. Xyler has a chromosome deletion so they want to see if anyone else in our family has it too. Xander and Nika did well with it and this made Xavian want to do it too since he has to do everything they do. He did fine until she put the needle in his arm and then he started to cry. I think he was very brave because he wasn't kicking or anything, just crying. She wasn't able to get a vein with him so his will have to wait for another day. The chromosome deletion that Xyler has they really don't know anything about it. So far in their research he is the first to have what he has so they don't know if it is going to cause any issues for him down the road. That scares me so I hope they find out with the research they are doing.
Dr Arrington was impressed with how well Xyler looked. Xyler was crawling everywhere and was super busy. The nurses even commented on how much better he looked than before his surgery. One talked about how blue he was. Dr. Arrington comes up to Logan once a month and uses the cardiology office in the hospital. These nurses don't deal much with little kids since the office is for adults. We are just so grateful that he comes up to Logan so that we don't have to drive down to Salt Lake every time. He told us everything looked good on Xyler's x-ray and that he didn't need to be seen until spring. That visit he will have an echo done at Primary Children's and then after that it will be yearly visits until he is needing his next surgery. This was great news for us! What a blessing it has been with him doing as well as he is. He is such a strong little boy. When you look at him now you would never be able to guess that he has had two open heart surgeries. He is our CHD Hero.
I talked to the dr about getting my other kids checked so he listened to their hearts to see if he could hear anything that didn't sound right. He said they all sounded great. This was good news too. Now we will just have to see what the blood tests show for all of us on if anyone else has the chromosome deletion. He is really interested to see what it shows for Xander since he had Meckles Divirticulum two years ago. He said that it is strange for a family to have a child with Meckle's and a chd. I guess I should explain what Meckle's is. When you are in the womb you have a little flap on your small intestine and it is fed by an artery. After you are born it disappears except for in 2% of people. And of that 2% only 2% have a problem with it. In Xander's case it caused his intestine to twist. He was really sick for a few days before and couldn't keep anything down. He also didn't have the strength to do anything, not even to watch tv. He just slept all day and night. It was scary! He was sent down to Primary Children's where they did exploratory surgery and found out the problem. They took out some of his small intestine and his appendix. I cannot say enough about how wonderful Primary Children's is and their wonderful doctors, nurses and staff. We absolutely love that hospital!
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