When a child is diagnosed with GROUP STEP B there are some other factors that can come into play. After Kaitrynn came home from spending a week in the hospital she came home on a PICC line. This is like an IV that is placed in the arm and then the top of the line is sitting right above the heart. This way when medication (Gyntamisian and Ampicillian) is administered through the IV it can go right to the areas that is needed. Kaitrynn came home from the hospital October28, 2007. It looked like a Pharmacy at our house. I was to give her the drugs 4 times a day through her PICC line. I was so scared and nervous at first to give my child drugs through a IV, let alone knowing that it was right on top of her heart. I would have to draw the Drugs up through a syringe and then waste it until it was the right dose for Kaitrynn. I was most scared for the 2 am dose when I was still half asleep. The first night I had my neighbor Rose who is a nurse come watch over my shoulder to see if I did it right. Of course I had :). Just when I was feeling like this was old hat Kaitrynn started to projectile vomit. Needless to say we were readmitted to PMCH on Halloween 2007. Yes Kaitrynn spent her first Halloween in the Emergency Room.
The next morning they came in and took her to have an ECHO Cardiogram done. Some children that have Group Step B the infection attacks the heart. How it does this is the infection is in chains in the body. The chains attack the heart and wrap it self around the heart,making it much more difficult for the drugs to fight the infection. She was given Rosephen through her PICC line once we were stabilized in her room. The echo cardiogram is an ultra sound of the heart. I was able to go with her as she had the test done. It was fun to see her little heart beating away. It took about an hour for them to ultra sound the areas of the heart that may have been affected by this infection. They finished the test and we were back up in our room in no time. I have to admit it was fun to be back with the same nurses we had a week before. If you are going to go through something like this it is great to have their great support team. Maryanne was one of my favorite nurses along with Meredith who is my neighbor. One of the Nurses that helped put the Picc line in was also in my ward. that was nice to feel like I had support all around me.
A few hours later Dr. Petco the Pediatric Cardiologist came in to give me the report on the ECHO. He said that the test came back normal that the infection had not gotten to the heart. Again I was most thankful and was confident that this admission they would get the infection under control. BUT was the next word out of his mouth. I them thought my baby can't have a heart problem? Yep she does. She has what is called Bicuspid Aortic Stynosis. What this means in a nut shell is that Kaitrynn is missing one blood vessel in her left aortic valve. You are suppose to have 3,but she only had two. What does this mean? Well her right side of her heart has to work a lot harder then her left side. He explained it to me this way. When you look at the left aortic valve it looks like the top of the Mercedes symbol is missing in her heart. Therefore it looks like a fish breathing when the heart is pumping. There is a scale that they measure to see if and when they need to do surgery on this valve. The range is 0 - 60. That day the level of her heart was 55. If if gets above 60 they would just take her to the heart cath lab and have the valve blown out, so the valve wouldn't have to work as hard. He said she was at a stable number and as time goes on this number could get lower. He said to treat her like a normal child with normal child activities with regards to sports etc. He said he would like to see her in 3 months from that visit. I felt very educated when he left. He took the time to make sure that it wasn't my fault. They are pretty sure that this condition happens around the 8Th week of pregnancy. They said there is no cure for it, but what this heart valve may wear out by the time she is 50 years of age and they would just do a heart valve replacement. Through this whole ordeal with Kaitrynn my faith has really been tested. I have been given two priesthood blessings from two different people. They have said that I will raise my DAUGHTERS until adulthood. I have felt such peace and comfort from those blessings.
Today Kaitrynn's heart is doing well. The photo above is from the last heart check up. Her EKG came back normal, so no ECHO was done. The last time she had an ECHO the number was down to 26. We felt grateful that it had come from 55 to 26. We continue to see the heart doctor every 6 to 9 months. This number can fluctuate at anytime. We just have to keep in the back of our minds that she may have to one day go to the heart cath lab, but until them she is doing well with her heart and continues to grow and thrive. I am grateful for all that I have learned through this experience. I have gained a wealth of knowledge. I have been able to help a friend with her child in a similar situation after I was through the toughest part with Kaitrynn. I am grateful for the chance I have to be the Mom of these 2 special girls. I love them dearly and hope the best for them both.
