Well, that didn't happen today.
After Kamdyn's echo, the cardiologist came into the room and examined Kamdyn, as they always do. But this time, he asked questions, lots of questions. I could sense from the number and types of questions that something seemed a little off. When he sat down to review everything, I really started to feel it. It was like a dark cloud in the room. Like the air suddenly got thick. I'm not even really sure what he said, but I knew whatever he was saying meant that Kamdyn's heart was not doing as well as our previous appointments. Finally, I couldn't hold it in anymore. It felt like someone had punched me in the stomach. I couldn't breathe. The only way to catch my breath was to cry, sob. I cannot believe this is happening. We were past this. We had moved on. This can't be.
Kamdyn is a great eater, and she appears very healthy. She has a round tummy and cute little baby rolls on her arms and legs. Months ago, she required medication to help her breathe, because she had fluid in her lungs from the extra blood flow from the heart. She currently has no breathing issues, and she is not on any medications right now. Those are all good things that are working in her favor.
The doctors are concerned about her, because she has not gained any weight in the past couple of months. She has fluctuated up and down between 14 and 15 pounds for about 2 months now. At the same time, many babies with Down syndrome are just slow weight gainers as babies. She has also had numerous ear infections and 3 sinus infections this winter, and increased blood flow in the heart can cause additional infections. But children with Down syndrome often have narrow ear canals and nasal passages, and Kamdyn is one of those. These things may just be factors of Down syndrome, or they could be more of a problem due to her heart.
In addition to those issues, Kamdyn's left ventricle is showing increased enlargement since her last echo cardiogram. She also has fluid around her heart, which is probably from the extra blood flow. The large hole in heart has also not decreased in size any since her last echo. These three things, in particular, are the most concerning. Since the hole is still too large to let it go, they are pursuing the thought of open heart surgery. We are told that these factors cannot be left as they are long term.
So, next Tuesday morning, a group of doctors from Penn State Hershey Medical Center will review Kamdyn's case and decide what the best coarse of action is. The cardiologist told us that Kamdyn's case is tricky, because there is no clear cut answer at this point. There is no obvious choice. I am glad that there will be many minds, much smarter than my own, meeting to decide what is best. And while they have their minds, I have my God.
My God who told me.....
Psalm 34: 15-19
The eyes of the LORD are upon the righteous, and his ears are open unto their cry. The righteous cry, and the LORD heareth, and delivereth them out of all their troubles. The LORD is nigh unto them that are of a broken heart; and saveth such as be of a contrite spirit. Many are the afflictions of the righteous: but the LORD delivereth him out of them all.
Please pray that the doctors have wisdom as they make their decision and peace for our family. Thank you.
