Fri., Feb. 11th

Lucy started causing us to age rapidly again last night and through today. Starting last night at 11 PM, then 5 AM this morning, 7 AM and 6 PM this evening she had SVT's. After the 7 AM episode the cardiologist talked to us about adding a second medication to treat this condition. They started the medication in the middle of the day. So far neither Grant or I have actually been right there by her bed when these have happened. During the day they brought me a stethoscope and showed me how to check her heart rate. We are supposed to take her heart rate twice a day. If her heart rate spikes we are supposed to get a cold bag of something out of the freezer like peas and put it on her face. This technique has never worked to convert her at the hospital. Then we can also try tipping her upside down. If after 20 min. it has not gone down we call the cardiologist and then calmly drive her to an ER that treats pediatrics. They will give her adenison, which aside from one incident is the only thing that has converted her. The one time that something else worked was when they gagged her. This drug has to go right into the blood and it works instantly.

So this evening when it happened again I was right there about to change her diaper. This was the first time she had woken up all day. During the early morning episode they had given her morphine to try to stop it before the adenison. She was out all day long until the evening SVT. I did take advantage of her drowsiness and cut her nails. Morphine makes nail cutting a breeze. So there is still some figuring out to do as far as the right medication for her. Dr. Cheng said if this combo didn't work there is a single drug that is more powerful that they would try.

They are back to thinking that this was probably the cause of her hydrops. Normally if it is a heart problem that causes the fluid accumulation it is from a cardiac arrest which will show major heart tissue damage. They know that Lucy did not have a cardiac arrest. They are thinking the same affect could have happened if she was in SVT for days continually.

Grant and I were talking about the many things that were coming to our minds about how we need to adjust or do things in our life to make sure we are prepared for Lucy's heart arythmia. If we were traveling somewhere we always need to know where a hospital is that has pediatric care. No long air plane trips like Hawaii, which we were planning on this summer. We needed to laugh apparently mostly because we are really scared about handling this ourselves. We talked about the Sun River trip we took over Christmas break. We thought that could work with Lucy because all we would have to do if she started into one is gag her, then tip her upside down and stick her head in the snow and hope no one reports us to CPS.

A few of the nurses in the NICU have already volunteered to fill the position of nanny for Lucy if a position opened up. It seems like we will at least need to get a nurse to go on a date.

Dr. Cheng has said this is not an uncommon problem with infants usually through age 1. The reason it causes a little more concern is that she was so sick with hydrops. He said we will probably be working with this until 1 or 18 months at which time they usually grow out of it but it can sometimes come back around puberty.

We love Lucy so much, thank you for keeping her in your thoughts and prayers.