As much as I would like to tell you all that I know the answer to this question, I don't. I have been thinking over the past few days about how to share our latest bit of news from MUSC. We did have a great report, but got very little more than that.
We arrived early Wednesday morning and checked in. We were sent to "same day", which is the holding area for outpatient procedures and preop visits. It was surprisingly quick this time around. They did his vitals checks and we spoke with the fellow and anesthesiologist. The only surprise was that they had to place a line in his neck this time because of the way he is hooked up right now. (I am not going to lie, I panicked a little when she said that.) He took his Versed (sedative) all by himself. We did get quite a chuckle out if his sweet little giggles and smiles before they took him back. This helped a little with mommy's anxiety of letting him go. He had no idea where he was going or what they were going to do, and he didn't care.
They did a sedated echo and then placed the catheters. He went through the procedure like a champ and we were able to be back by his bedside around noon. When you are back in same day it is a waiting game to see how well they come out of sedation. Most of the time they are extremely grouchy as the meds wear off and they start to wake up. This time was no different for Mac other than the fact that he had an incision in his neck where they ran one of his lines. They had already applied pressure to all three of his incision sites to allow them to clot, but when he started fussing he got choked up and started coughing. The coughs broke loose the clot and he started bleeding through the band aid on his neck. (This IS NOT uncommon for patients who have had this procedure done, but IT IS uncommon for me to see the bleeding from the incision.) The nurse quickly began to apply pressure to the incision and we had to re-sedate him to give more time for that area to clot. This was by far the scariest moment during this procedure. He never knew a thing, but the rest of us were a bundle of nerves. The precious nurse that was caring for him was fantastic. I cannot imagine what it would be like to care for these children day in and day out.
After all of the excitement died down we spent the rest of the day singing, snuggling, watching Daniel Tiger, and playing. When he woke the second time, I had him in my arms and the process went much more smoothly. He was more relaxed and we just rocked and woke up at his pace. When he woke up enough to eat he wanted "Hot Pancakes!" I can't even begin to tell you how excited I was to hear him asking for those.
There are hours of waiting in same day before you know if you are going home. During that time, we visited with our sweet nurse, played, and even got to visit with a few of our favorites from MUSC! I am not exaggerating when I tell you that the people who work in this hospital are THE BEST! When we are at the hospital it is like a family reunion where you get to catch up with all of your loved ones you don't get to see on a regular basis. They mean so much to our family.
Dr. Bandisode was finally able to come in and talk with us mid afternoon. The report she gave us was excellent. She said that he looked great, and she didn't need to intervene in any way during the catheterization. That means all she did was look around and take measurements. She said that she believes he could be ready for his next stage of surgery and then she blew our minds! She said that now the team needed to make the decision about which procedure they would be doing next. As far as we knew going into this procedure the only option was a single ventricle procedure called the Fontan. This would finalize his single ventricle set up and make it so that all of his blood flows into his lungs first to be oxygenated and then to his heart to be pumped out to his body.
Dr. Bandisode said, after looking at the images and taking the measurements she needed, she believed that it is POSSIBLE that he could have a two ventricle repair. This is a procedure that we didn't even realize was a possibility for him. This procedure would require a surgery now and another surgery as an adult. It would still use the artificial materials to make connections, but it would allow him to use his heart as a double pump instead of a single. This means that the blood would flow into his heart, his heart would pump the blood into his lungs. Then it would flow back into his heart and his heart would pump the blood throughout his body. The other procedure will only use his heart to pump blood out to his body. The flow into his lungs will not be supported by his heart.
After talking about pros and cons to this new option, we believe that it would be a great change, IF Dr. Bradley feels that this procedure would be successful. Dr. Bandisode said that patients with a Fontan are only about 70% compared to a person with a healthy heart. She also said that if the Fontan did not continue to work for him, he would require a transplant. If he is able to have a two ventricle repair he would not have limitations on activities and would be able to live a "normal" life. When I say normal that of course is relative to the fact that he would require a surgery now and another into adulthood.
We were able to go back to the CrossBridge house on Wednesday night and drove home Thursday. Mac bounced back amazingly well. He was playing with his buddy Caroline, and eating everything in sight. We are so blessed that we were able go home the same day.
With all of that being said, now all we can do is pray for the surgical team to make the best decision for Mac guided by the Holy Spirit. We know that the doctors study these cases and look at every possible option. They will most likely meet this week and then spend a week thinking and praying over the best option. They will then meet again and discuss to make a final decision on how to proceed. We don't have an exact date that we will get a response, and we are OK with that. We pray that the doctors will take their time and be sure that they are doing what is best for Mac. We did ask if they had an idea about the time of his next surgery and she said we could possibly be looking at May. We will not know anything definite until we hear back from Dr. Bradley's office. In the weeks ahead, please help us pray for the team as they review Mac's case and begin the difficult process of deciding on the best surgical option for Mac. Please pray for us as we wait. We are anxious to hear, but don't want to rush this process.
Thankfully while we wait, we are home, and Mac is doing a great job keeping up with his "homework." It is possibly the cutest thing he does at this stage. When Harlie sits down at the table to do her homework, he heads off to the coloring book or printer to get a piece of paper so he can do his homework too.
Thank you for taking the time to read this post and continuing to pray for our family.
