We are currently sitting in day medicine watching blood drip ever so slowly into our baby girl. Dr. R came over to discuss the details of the day, and reminded me again that transfusion is really our only option for alleviating Lucy’s cardiac symptoms. On Christmas Eve we received a call from Lucy’s cardiologist. The results from Lucy’s Holtor monitor revealed what we suspected. Lucy is tachycardic (high heart rate), and her tachycardia increases even more with changes in position (orthostatic). Lucy’s heart rate issues are as a result of her autonomic dysfunction, which is affecting her sinus node. They have diagnosed Lucy with sinus tachycardia, and postural orthostatic tachycardia syndrome, POTS. We discussed medications, specifically the use of beta blockers to help control Lucy’s cardiac symptoms; unfortunately, the side effects of the medicines would exasperate many of Lucy’s mito symptoms. Beta blockers are heavy duty meds for “normal” people, but for a kiddo like Lucy they are very risky.
Last week we learned, after several discrepancies, that Lucy’s blood type is not the same as mine or Drew’s. Lucy is A negative, one of the rarer blood types in Caucasian people, leave it to Lucy to be different. Because of this, we were unable to do a directed donor blood donation. Lucy is receiving packed A negative red blood cells from the Delmarva blood bank, many thanks to those of you who donate blood!
After several attempts, IV team placed a peripheral IV line in Lucy’s left foot. It’s not pretty, but it gives us a point of access to transfuse the blood. We are able to keep Lucy’s TPN running at the same time as the blood, which helps us avoid the whole hypoglycemia issue.
Everything went as well as could be expected today. Lucy’s body appears to have tolerated the whole procedure. It’s too early to say for sure, but it looks like her heart rate has come down slightly, we have not seen too many numbers above 170. We will monitor her closely for the next few days so that we can get a better idea of where her numbers fall.
Many thanks to all of you for your thoughts and prayers, we feel so supported! We would especially like to thank the brigade of loving friends who watch over our three other children so that Drew and I are able to sit bedside with Lucy. Your love and unwavering support means the world to us!