Thymus and Surgery

Sorry for the delay between posts. Here's a general update on how things have been going.

First, the support continues to be not only overwhelming (in an amazingly good way), but also life changing. Hopefully I'll get an opportunity to explain more later.

Second, Becky got to spend a few days at home this week. Grahm and I had been missing her very much, and I know she was getting terribly homesick. We spent Saturday night and most of Sunday back in K.C. Grahm will spend the rest of the week in K.C. with Becky.

Third, Ema gave me the biggest smile while I was holding her this morning. Thank you for the prayers, and please keep them going this week. We will need them.

Here is the medical update from Becky:

The last couple of weeks have brought both good and bad news for Ema.

The good news is that we got Ema's immunology results back, and they showed almost normal levels of T-cells, the cells that fight infections. This means that Ema's immune system is slightly compromised due to her DiGeorge syndrome, but is not life-threatening. She will have more infections than most other kids, but other than that it will be manageable. This alone is great news for all of us, and definitely an answer to prayer.

The bad news is that the echo-cardiogram that Ema had on Monday of last week showed that the valve that connects her aorta to her heart is still on the small side for what the cardiac surgeons would like. This means that Ema will have to have the valves that connect her aorta and pulmonary veins (the veins that lead to the lungs) to her heart combined into one valve that leads only to the aorta, and an artificial valve put in place to lead to the pulmonary veins. The reason why this is not good news is that it will mean several additional surgeries in several years to replace the artificial part that won't grow with her as she grows. Doctors think she will need to have it replaced in about 1-2 years, and than again in about 8-10 years. This will, however, allow them to fix all of her heart defects and should return her heart function to normal.

During that same echo the doctors noticed that the blood flow through Ema's ductus (the special duct that is currently supplying Ema's lower body with blood) was not as good as they would like it to be. This meant that on Friday, Ema's medication that keeps the ductus open (Pros tins) was increased to open the ductus further. This medication increase makes it more likely that Ema will have breathing problems, so her team has to keep an extra careful watch on her breathing to make sure she doesn't need any assistance. It also made them temporarily hold Ema's feedings for Friday, but as of Saturday they resumed them.

Aside from the other things that have been going on, Ema has been doing very well. She has been getting regular feedings and they are beginning to have the desired effects, because Ema already weighs 6 pounds 9 ounces! This is great weight gain for the amount of food that she is allowed to have, so her team is very happy with this gain.

Ema's surgery is scheduled for sometime on either Thursday or Friday of this week. We are hoping it is on Thursday! The sooner that Ema's heart is fixed, the sooner we can take her home and introduce her to all the people who have been thinking and praying for her recovery.