I say complicated because it wasn't a simple insertion of a new stent. I have grown to realize that the Millers don't do simple things. If it is unusual, we have a much higher chance of being in that category. Elizabeth and Ri seem to want to fit into our family in everyway! :)
When they went into the surgery, they were prepared for one stent to be repaired. We had known that a peice had come off and traveled into his lung with no need to do anything about that piece. I asked the nurse on the phone if there was any concern that a peice would break off in the future and travel into his heart. She said it would never do that because it would have to swim upstream. The only way for it to go was into his lung. I reminded her that his blood flows back into his heart since he is missing that pulmonary artery valve. She assured me that it wouldn't happen because the stent is so far out in the artery. So....being the concerned mom, I asked the doctor the same thing. He was much more realistic. He said it is a possibility, but a very small chance. And if it did travel into his heart, it was not concerning. The heart would do the same as the lung, grow tissue around it once it embedded into the wall. There was no danger, but we shouldn't be concerned because it probably wouldn't ever happen. Guess what? Yep.... it had happened! When they showed us the pictures of his heart, he showed us the peice that was embedded in his lung. Then he showed us another piece that was, "sure enough", in the chamber of his heart! I couldn't help but giggle (silently). Praise God that He has made our bodies so amazing! I sit in awe thinking of how He has protected our son!
Anyway.... why was it so complicated? I really can't explain all that the doctor explained. The just of the matter was that his left stent had nearly collapsed. His left pulmonary artery, which had been so nicely ballooned and stented just over a year ago, had narrowed (right through the stent). The stent had no longer been effective. It appears that the artery had narrowed right through the stent, leaving a large portion of the stent not even touching his artery (the artery had narrowed so much). I can't really describe it in words. The doctor seemed rather shocked that it had happened and even more shocked that it had happened so quickly after his last surgery. They believe that the stent had been fractured clear back in August (when I first took him to the ER because of the problems with breathing). That would have been just over 7 months. What Ri was facing now was an area that "bottlenecked" causing the blood flow to have to travel through a very narrow area before it could get into his lung. Whenever he exercised or increased activity and his heart pumped blood faster, it would build up and not be able to travel out of that artery quick enough because of the narrowing. I put the pictures of his heart here. The first one is before his new stent was placed. Look at how it is pinched near his heart on the right side. Then compare it to the 2nd picture which was taken after the new stent was placed.
Things became quite complicated because with the narrowing of the artery, a larage amount of scar tisse had built up around the artery between the artery and the stent. It needed to be removed. Normally the doctor would insert a balloon that has four small blades on it that are inserted and used to cut up the scar tissue. In Ri's case, because of the damage to the stent and the way everything bent at that point, it was too risky for Ri. The doctor had to make a decision and do things a bit differently. I can't remember how he did it, but it was different then he normally would have done. And because of how Ri's kissing stents are and how the fractures were, the doctor made a decision to place a different type of stent into his artery. It is a stent that is generally not used in the pulmonary artery, making it much more challenging to place; but much better for Ri.
I could tell that his case was a challenge for the doctor by the way he described everything to us. He was wonderful in explaining it all. I am so very thankful for having him as Ri's surgeon. Ri's cardiologist was the attending cardiologist on the floor last night. He stopped in just to say hi. He was the one who has been telling us all along that this problem with his breathing was not heart related. He came in and smiling and telling me that he "understood that Dr. Cheatham had quite a day today"; implying (and me assuming what he meant) that this was not a typical stent insertion. It is funny. When Ri had just been given his meds to help him be calm before the surgery, I all of a sudden thought "is this surgery even necessary?". I hadn't thought about it before. I had just assumed. I had never asked. For a brief moment, I panicked thinking that maybe we were putting him through all this, all the risks, for nothing; thinking that maybe fractured stents aren't always repaired and maybe I had pushed for things to be done and they were just complying with an overbearing/overprotective mom. I had been pushing the cardiologist since August, insisting that this was just not normal. I took him to the ER when symptoms first began, had an x-ray of his lungs, with no results other then a high suspicion that he might have TB and to follow up with the cardiologist. We then went to the cardiologist and had an EKG and echo on his heart, only to be told that his heart was great and the stents were working fine. But after a month of it getting worse, I scheduled an appointment with a pulmonary specialist who could not see us for 2 months. In the meantime, I pushed things and got our regular doctor to see him. They scheduled a breathing test and an x-ray of his lungs (again). The x-ray showed everything normal and he passed his breathing test with flying colors. Then Uncle Paul ended up with blood clots in his lungs and a heart procedure done. I ran into his cardiologist and asked about Ri's situation. He was extremely concerned, wanting us to take him to the ER that day! So, I began pushing our cardiologist harder. I think because the cardiologist at Riverside was so concerned, our cardiologist began looking a little deeper and began to question if his symptoms might be because of him missing a pulmonary valve and causing Ri to have to have an MRI only to find out that it was not his heart. So we had had 2 xrays of his lungs, an EKG, echo of his heart, and now an MRI and still had no answers. We were told his heart was totally fine and that we needed to pursue pulmonary. I got into the pulmonary doctor and discovered that both he and the cardiolgist thought I hshouldn't be there, but really should be at an allergist. But an x-ray had been done and a breathing test was done. It was then that we discovered that he had fractures in his stents. This was the 3rd x-ray. At this point it was determined that the fractures had probably been there back when it all began (August... it was now January). Again, up to this point, Ri had had 2 prior x-rays, an EKG of his heart, an echo of his heart and an MRI of his heart. NONE of which had shown any problems! I am sitting in a PULMONARY specialist office and discover that my son's stents in his HEART are fractured! What if I had not pushed? Still, at this point, they did not believe his breathing was heart related. The cardiologist insisted that it was not because of his heart. The pulmonary doctor was very baffled by Ri's breathing problems. His lungs were in perfect shape, so he couldn't figure out what was going on. He decided to give him a maintainance type therapy, an inhaler to be used on a daily basis. He wanted to try that for a month to see if there was any improvement on his breathing during exercise. In the meantime, he informed me that the cardiologist was baffled with Ri's fracture and would be consulting with Dr. CHeatham (the surgeon who placed the stents in originally) and with the chief of cardiology.
Since then, Ri has had a few times when his breathing has brought him to his knees during increased activity and a time when his chest was hurting so badly that he stopped playing and told the gym teacher. I called the cardiologist on both occasions and was told not to be concerned.
I was a bit frustrated when we were talking to the surgeon afterwards. I asked him if this could happen again and how we would know. He told me that if he were having symptoms then they would do testing but not to be concerned about it. I explained all that we had done and all that we were told. I found out that the test that would show problems with his stents was never ran. Instead of an MRI, a CAT scan is the test that shows the stents the best.
So.... the end result is that God was holding Ri and working it all out. He would't allow Mark or I to be at peace with the test results. I guess I was thrilled to know that we know our son best! It made me happy to realize that we weren't imagining things and that our gut feeling that something was wrong was really the right thing. Pushing things (at least in this incident) was needed and I am thankful that we didn't just decide that this is how Ri was going to have to deal with life.
God is faithful. He has a mightly plan for Ri..... and that is something I am very confident about!
