Surgery Details

We had our surgery consultation Thursday, so we decided to tell Maddox and Emmy about the operation on Wednesday. We were going to be taking a tour of the surgery unit, so we thought this was a good time to tell them. I read Franklin Goes to the Hospital on Tuesday just to introduce the topic to Maddox in a positive way. I didn't tell him anything about him having a surgery until the next day. He knows he has a special heart, so we told him the doctor was going to fix some things and make them work better in his special heart. I think he understood it as best as a 4 year old can. He wanted to know why his heart was special but not Emmy's, and was I going to be there the whole time. I reassured him I wouldn't be leaving. He wanted to know how I would sleep there. I told him there was a bed for me right next to him. After we told him, I read him some children's hospital books. 

The Surgery Book: For Kids was by far the best one. It takes you through the whole process from a child's point of view. It introduces hospital terminology and eases fears at the same time. Maddox liked reading the books and kept saying, "Hey, that's what I'm going to do."

We will continue to talk about everything, pretend play, and read books to reassure him. 

Thursday afternoon, we had our surgery consultation with Dr. Mendeloff. We brought Emmy and Maddox, but Uncle Chris played with them in the lobby while we talked to the surgeon. Chris being there was such a big help! We would not have been able to have a successful consultation without him. As soon as we got to Dr. Mendeloff's office, he started explaining the surgery process. He was very informative. Most of my questions were answered as he explained the procedure. He showed us a mechanical and pig valve and explained the differences in the two. He then started explaining the Ross Procedure and why it was the better choice for someone Maddox's age. 

He drew this picture to explain the Ross Procedure. He went over how he does it, what to expect afterward, and some of the potential complications. 

How the surgery is done: The anthestisiologist will spend about an hour getting Maddox to sleep and set-up for the surgery. Maddox will be opened up along his chest. The breast bone will be cut to get to the heart. Dr. Mendeloff will put Maddox on a heart lunge machine so the blood can bypass the heart and puts the heart to "sleep" for the repairs. He then will take out the Aortic Valve. This is the valve drawn above that is not working efficiently. He will take out the Pulmonary Valve and put it where the Aortic Valve was. He sews this in and makes two holes for the for the Coronary Arteries that are connected to the Aortic Valve. When this step is complete, he attaches a donor tissue valve to the Pulmonary Valve's place. The chest is closed up, and they do an echocardiogram to ensure the heart is working properly. Obviously, the surgery is very complex, and I'm sure I've left out some details. This is the basics of what will happen. Dr. Mendeloff's part of the surgery is around 4 hours. The total surgery time should be around 8 hours. 

What to expect afterward: He will go straight to the Congenital Heart Surgery Unit(ICU). This facility is designed to specifically care for these types of surgeries. He will be there for 2-3 days. He will spend the first 24 hours mostly asleep. He will have a drainage tube at the bottom of his chest for a couple of days. After the first 24 hours, he will become more alert and start to have some liquids. I'm guessing during this time he will be very groggy and uncomfortable. He will be hooked up to many things, so it will be scary for him and hard for him to move. They did say a physical therapist will come in to help him start moving around. After the first 48 hours, he will start walking around and should feel better. There is a couch that pulls out into a bed in his room that I will sleep in. The showers are on a different floor, so I'll have to figure that out once I get there. About day 4, he should move to the pediatric unit. This room can take more visitors, he will get to wear his own clothes, and he will be prompted to play with the toys they have. We should be going home around day 5-7. Once we are home, he shouldn't be on any pain meds aside from Motrin. His discomfort should be minimal and will be from the broken breast bone. It will take the breast bone 6-8 weeks to heal completely. His only restrictions will be no climbing, wrestling, or picking up below the arms. All of these are to allow the breast bone to heal. The doctor said kids are good about restricting themselves and usually won't do things that are uncomfortable. He said we will probably be most surprised with how active he is once we get home, to not expect him to just be laying around. He wants us to let him act like a normal kid. 

His scar will basically be from the top to the bottom of the chest. The surgeon needs ample room to complete this surgery. 

Potential Complications- With this type of surgery, there are many things that could happen and multiple "what if" scenarios. The surgeon talked about a few, but I was thankful he didn't go into a lot of detail with these. I can't spend my time focusing on this. We will figure it out as we go if a complication arises. 

The negative to this procedure: He will have to have another surgery to replace this pulmonary valve once he outgrows it. The timing on that can't be predicted. A good guess would be anywhere from 5-10 years. He will be closely monitored by our cardiologist and any problems will be detected through a echocardiogram. 

I was very thankful Dr. Mendeloff was so thorough. I had a long list of questions, and he answered almost all of them without me having to ask. He was very supportive and helpful. I feel comfortable and thankful he will be our surgeon. I did ask him how many Ross Procedures he had done. This is not a common surgery for children and not many surgeons do it. I was worried the number would be below 10, and we would be finding another surgeon. He said he's done 100-150, which made me feel much better. 

Now we have about 5 weeks to play hard, give lots of hugs and kisses, and reassure Maddox up until the surgery.