Results from Tyson's Appointment
You know what they say about a mother's intuition, I had a feeling something wasn't right and sure enough there is a problem. It isn't "life or death" news, but it's not "he's absolutely fine we'll see you next year" kind of news either.
As mentioned before in previous posts, Tyson's Pediatrician (Dr. Ciminello) believed that he still had a heart murmur, he was right. Tyson's Cardiologist (Dr. Pophal) indicated today that he does indeed have a murmur and that it needs to be addressed sooner rather than later. It is one that he will not be able to live with. The holes that were in his heart are fine and healing as they should, the murmur is actually coming from the Pulmonary Artery where the band was placed during his first surgery.
Dr. Pophal stated that he has RPA (Right Pulmonary Artery) Stenosis, which is where there is narrowing of the artery that causes the ventricle to pump harder to get blood through the blockage. If it is not corrected that can result in his ventricle to not work properly and to shut down leading to other problems with his stomach, kidney, liver and so on. He stated that his gradient score(s) from his Echo's since surgery have not been where they should be and even though they are below the mark (60), it's not getting any better as it should be if this were to be correcting on its own. His numbers have been 75 (immediately after surgery), 42, 20 (per the cardiologist, he believes this inaccurate) and 55 as of today. Unfortunately, there are no immediate signs, such as turning blue, that would indicate to us that his ventricle has stopped working. Most likely if that happens his liver would swell along with having additional intestinal problems in his stomach etc, so we are relying on the Echo's to monitor the problem. If his ventricle stops working it won't happen overnight so we don't have to worry that this will happen tomorrow and be rushed into surgery. He wants to see him in 6 weeks to determine what our next steps will be.
The ideal situation would be for Tyson to continue to grow and have the "kink" correct itself. If that isn't the case then they will attempt to correct the problem by using a cardiac catheterization to place a balloon into the artery and stretch out this so called "kink". This should hopefully keep the artery open and require no additional procedures and/or surgeries. If that procedure does not work, then they will look at putting a stint in to keep it permanently open. Although that is not their ideal procedure to do on babies, they will do it if necessary. He didn't discuss us how that procedure would be done, but I know that it can be done through catheterization. There is also that possibility that this may be scar tissue and unfortunately if that is the case then the catheterization to place the balloon in the artery will not work and we will have to go with another procedure which will be discussed at that time.
They also decided to stop his blood pressure medication but they are going to have him continue taking Lasix. The reason for continuing the Lasix is because we are a little concerned about his breathing. His breathing has been a little erratic, he'll breathe very fast and unsteady, then slow down and then stop and catch his breath. These breathing patterns would occur throughout the day, not just during fits but when he is calm as well. Breathing like this was expected after surgery due to the fact that his body had never had the proper circulation and his body would have to figure it all out once his heart was fixed. And, although this is not their main concern they want to take precautionary measures to avoid any extra fluid accumulating in and around his heart and lungs, which could lead to more serious problems on top of what's already going on. They did however check today to make sure there was no extra fluid in or around his lungs and heart and that came out to be true. We will stay on the Lasix until he begins to breathe more steadily while taking the medication and then we will begin the process of weaning him off.
My other concern going into this appointment was his incision. It definitely is healing from being on the antibiotics, but there is still a suture coming through which is causing the irritation. He has one more full dose of his antibiotic and then we are going to watch it and if it flares up again and/or has any more problems we are going to have to come in and have the Surgeon (Dr. Nigro) take a look at it. He will most likely have to go in and open his chest back up, find the problem area with the suture and remove/re-suture what ever is causing his incision to not heal properly. At first I was concerned with us just having to wait and watch it, but Beth indicated that they do not want to open him up just so they can "fish" around for the problem if they don't have to. We have to remember that going back in can cause infection(s), so they need to see what his body will do naturally before they open him back up. Not to mention he would have to be put back on anesthesia which always has its risks. For now we will just wait and watch.
On another note, now that he is on rice cereal that is adding extra calories to his already high calorie diet. With that being said, his weight gain has increased rapidly according to their growth chart for cardiac babies. The cardiology staff is just concerned that if his weight increases too rapidly he could end up having more problems later which is something he does not need on top of his heart problems. Now his Pediatrician has transitioned Tyson to a normal babies growth chart and feels his weight gain is right on track. So I am letting them battle it out and then tell me what they want me to do. Until I hear different, we are going back on a 20 calorie (what normal healthy babies are on) with added rice cereal to the bottle resulting him being on a 23 calorie diet as apposed to 24 plus the additional calories from eating rice cereal twice a day. We will also begin to add fruits and vegetables and reduce the number of times a day that he has rice cereal which will help reduce the additional calories from having the rice cereal throughout the day---it's quite confusing I know.
There was a lot of talk about watching and waiting and for us, as his parents, it is so hard to just sit back and wait. But after talking with them about us not being comfortable just waiting, they explained to us about why it is so important that they don't rush this, unless it is an emergency of course. They need to wait and give him ample time to fully heal from the surgery he just had in November because if they were to go in there too soon and proceed with the the balloon procedure they could rupture the artery leading to worse problems (i.e. possible valve transplants). This is something that we are not okay with so, we are perfectly fine with waiting until they are ready to move forward.
To be perfectly honest, this was not a very positive appointment, but at the same time it could have been way worse. I appreciate the Cardiology staff working so diligently and not letting this fall between the cracks, I can really tell that they care about Tyson and want what's best for him. Please keep praying for us that all goes well over the next 6 weeks and that whatever lies ahead for us that we have the strength to deal with and that Tyson will remain healthy and happy.
Thanks for reading all of this, I know it is a lot. And thank you for being there for Tyson and our family. We really appreciate it.
Rob and Ashley
As mentioned before in previous posts, Tyson's Pediatrician (Dr. Ciminello) believed that he still had a heart murmur, he was right. Tyson's Cardiologist (Dr. Pophal) indicated today that he does indeed have a murmur and that it needs to be addressed sooner rather than later. It is one that he will not be able to live with. The holes that were in his heart are fine and healing as they should, the murmur is actually coming from the Pulmonary Artery where the band was placed during his first surgery.
Dr. Pophal stated that he has RPA (Right Pulmonary Artery) Stenosis, which is where there is narrowing of the artery that causes the ventricle to pump harder to get blood through the blockage. If it is not corrected that can result in his ventricle to not work properly and to shut down leading to other problems with his stomach, kidney, liver and so on. He stated that his gradient score(s) from his Echo's since surgery have not been where they should be and even though they are below the mark (60), it's not getting any better as it should be if this were to be correcting on its own. His numbers have been 75 (immediately after surgery), 42, 20 (per the cardiologist, he believes this inaccurate) and 55 as of today. Unfortunately, there are no immediate signs, such as turning blue, that would indicate to us that his ventricle has stopped working. Most likely if that happens his liver would swell along with having additional intestinal problems in his stomach etc, so we are relying on the Echo's to monitor the problem. If his ventricle stops working it won't happen overnight so we don't have to worry that this will happen tomorrow and be rushed into surgery. He wants to see him in 6 weeks to determine what our next steps will be.
The ideal situation would be for Tyson to continue to grow and have the "kink" correct itself. If that isn't the case then they will attempt to correct the problem by using a cardiac catheterization to place a balloon into the artery and stretch out this so called "kink". This should hopefully keep the artery open and require no additional procedures and/or surgeries. If that procedure does not work, then they will look at putting a stint in to keep it permanently open. Although that is not their ideal procedure to do on babies, they will do it if necessary. He didn't discuss us how that procedure would be done, but I know that it can be done through catheterization. There is also that possibility that this may be scar tissue and unfortunately if that is the case then the catheterization to place the balloon in the artery will not work and we will have to go with another procedure which will be discussed at that time.
They also decided to stop his blood pressure medication but they are going to have him continue taking Lasix. The reason for continuing the Lasix is because we are a little concerned about his breathing. His breathing has been a little erratic, he'll breathe very fast and unsteady, then slow down and then stop and catch his breath. These breathing patterns would occur throughout the day, not just during fits but when he is calm as well. Breathing like this was expected after surgery due to the fact that his body had never had the proper circulation and his body would have to figure it all out once his heart was fixed. And, although this is not their main concern they want to take precautionary measures to avoid any extra fluid accumulating in and around his heart and lungs, which could lead to more serious problems on top of what's already going on. They did however check today to make sure there was no extra fluid in or around his lungs and heart and that came out to be true. We will stay on the Lasix until he begins to breathe more steadily while taking the medication and then we will begin the process of weaning him off.
My other concern going into this appointment was his incision. It definitely is healing from being on the antibiotics, but there is still a suture coming through which is causing the irritation. He has one more full dose of his antibiotic and then we are going to watch it and if it flares up again and/or has any more problems we are going to have to come in and have the Surgeon (Dr. Nigro) take a look at it. He will most likely have to go in and open his chest back up, find the problem area with the suture and remove/re-suture what ever is causing his incision to not heal properly. At first I was concerned with us just having to wait and watch it, but Beth indicated that they do not want to open him up just so they can "fish" around for the problem if they don't have to. We have to remember that going back in can cause infection(s), so they need to see what his body will do naturally before they open him back up. Not to mention he would have to be put back on anesthesia which always has its risks. For now we will just wait and watch.
On another note, now that he is on rice cereal that is adding extra calories to his already high calorie diet. With that being said, his weight gain has increased rapidly according to their growth chart for cardiac babies. The cardiology staff is just concerned that if his weight increases too rapidly he could end up having more problems later which is something he does not need on top of his heart problems. Now his Pediatrician has transitioned Tyson to a normal babies growth chart and feels his weight gain is right on track. So I am letting them battle it out and then tell me what they want me to do. Until I hear different, we are going back on a 20 calorie (what normal healthy babies are on) with added rice cereal to the bottle resulting him being on a 23 calorie diet as apposed to 24 plus the additional calories from eating rice cereal twice a day. We will also begin to add fruits and vegetables and reduce the number of times a day that he has rice cereal which will help reduce the additional calories from having the rice cereal throughout the day---it's quite confusing I know.
There was a lot of talk about watching and waiting and for us, as his parents, it is so hard to just sit back and wait. But after talking with them about us not being comfortable just waiting, they explained to us about why it is so important that they don't rush this, unless it is an emergency of course. They need to wait and give him ample time to fully heal from the surgery he just had in November because if they were to go in there too soon and proceed with the the balloon procedure they could rupture the artery leading to worse problems (i.e. possible valve transplants). This is something that we are not okay with so, we are perfectly fine with waiting until they are ready to move forward.
To be perfectly honest, this was not a very positive appointment, but at the same time it could have been way worse. I appreciate the Cardiology staff working so diligently and not letting this fall between the cracks, I can really tell that they care about Tyson and want what's best for him. Please keep praying for us that all goes well over the next 6 weeks and that whatever lies ahead for us that we have the strength to deal with and that Tyson will remain healthy and happy.
Thanks for reading all of this, I know it is a lot. And thank you for being there for Tyson and our family. We really appreciate it.
Rob and Ashley
Comments
~With love,
Whitney
Love,
Kaylin
I will keep you all in my thoughts! Let me know if you need anything at all!
Love you all!
Tiffany