Life as a Wife

Rashell and I flew to Philadelphia this morning, arriving at about 3:30 in the afternoon. My uncle lives in nearby Drexel and he met us at the airport and took us over to the hospital. Robert had his own room and was doing really great.

The doctors at Children’s decided to take Robert off the dopamine he had been receiving at UMC and he was awake while we were there. It was great to see him with his eyes open and looking at us, but he was pretty fussy because he had been used to bottle feeding and the doctors here don’t want anything in his stomach because of the upcoming surgery. We tried to give him a pacifier, but it frustrated him because he wasn’t getting anything out of it. Because he has a catheter in his umbilical arterty, we can’t pick him up because dislodging the catheter could cuase bleeding and other problems. It’s hard, especially for Rashell, to watch the baby crying and not be able to hold him and comfort him.

I checked us into the Philadelphia Ronald McDonald House. It is really an incredible program they have here. It feels home-like and everyone is very nice here.

I went back to the hospital and got to talk with one of the doctors that is handling Robert’s case. The plan is to do the balloon valvuloplasty Monday afternoon. The anesthesiologists set their schedule on Sundays so we will know tomorrow what time the procedure is most likely to be done. The pediatric cardiologist I spoke with said they are keeping their eye on Robert’s aortic arch. The EKGs they have done indicate that there could be some narowing of the arch, but they can’t tell because there is already a blood “bottleneck” at the ventricular valve which makes any potential narrowing of the arch insignificant.

In connection with this, the doctors decided to take Robert off the prostaglandin they had been administering to keep his ductus arteriosus open. The ductus is essentially a natural shunt that developing babies have so that their hearts can develop without having the pressure of the blood causing problems. The ductus closes on its own within a few days of birth and in Robert’s case, the doctors at UMC felt it was best to keep it open to minimize the effects of the constricted valve. The doctors here now feel that it is best to go ahead and let the ductus close to remove the artificial help so they know exactly what they are dealing with. The doctors feel Robert will be just fine when his ductus closes so they took him off the prostaglandin.

The doctor I spoke with said it is his personal opinion that Robert will do very well with the balloon procedure and that he will have a good recovery because he is strong and otherwise very healthy. He said it is possible that the precedure could result in blood leaking back through the valve (which is supposed to let blood out, but not in), but that he would probably be just fine with this, even if it occurs for a year or two. He also reminded us that this procedure will not make an abnormal valve normal. Robert will always have an abnormal valve, but the doctor said that if things go well, Robert will be a normal kid, will be fine with normal playground activities, and can play sports and the like. He did indicated that he might need another surgery down the road, but that’s a bridge we will cross later.

The main thing now is to get his valve opened up in a way that will allow it to do its job and not cause any damage to it. The doctors are optimistic that they can do this. We know God can do this and so we ask everyone to keep praying. It really is making a difference.