More options, all scary
I feel like I sent Teri to the wolves today. The idea was that I would stay home and she would go see the baby. The next echocardiogram wasn't scheduled until tomorrow, so it wouldn't be too exciting, no new information. The doctors had a different plan.
They decided to do another echo today instead. The reason for this was so that she could be talked about in the cardiologists staff meeting tomorrow morning. The doctor (Dr. Eldridge)came and talked to her and told her that the heart was worse than yesterday and that she had to prepare for surgical options. She talked to Teri about the Norwood procedure, about a heart transplant, about flying to Denver to have all this done. Teri was overwhelmed.
I raced down about 6:00 pm and tried to start gathering information. Of course nothing happened fast. I got there just in time for shift change and only was able to see Ellie for about 10 min. The nurse told me what she could, but it wasn't much.
After the shift change and dinner, we went back and the night nurse got the nurse practitioner (she's the head nurse on the floor) who in turn got Dr. Cam Arrington cardiologist. I have spoken with Dr. Arrington before and I have really liked his candor and ability to explain. I think he did a good job here tonight as well.
Dr. Arrington talked about our options. There are several pathways we can take. All of which seem to have good, very logical and viable conclusions. But each one also has a negative side.
I'll try to dump what he said.
Most of this will hinge on what comes out of tomorrow's meeting.
His opinion was that probably the first step they'll take is to take her off the prostaglandin (PGE's). This will allow the PDA (patent ductus arterialis) to close and the left side of the heart to start working on its own. If it is able to work at even 10% that might be enough. (He said that the number 10% is a bit misleading because normal is 60%. So if its able to do 1/6th of normal we could be ok). They would then try to get her off the ventilation, then the dopamine and melanone. The problem arises if she has a crash they may not be able to open the PDA back up because its been too long.
Having the PDA open this long is also very dangerous. After too much exposure to oxygenated blood the lungs can be damaged as well.
Another option is a modified version of the Norwood procedure. Basically, through a series of surgeries they would re-plumb her heart so that the right side was doing all the work. Ultimately with this procedure the right side of the heart would pump blood out through the body and straight to the lungs. The Superior and Inferior Vena Cava would be connected directly to the lungs. The blood would come out of the lungs to the right side of the heart and get pumped out to the body again.
This procedure would only lengthen the amount of time we have before a heart transplant. With transplants the problem is qualifying for them. If she has lung problems because of the PDA having been open for too long, it wouldn't work. There are several criteria that need to be met in order for this to work.
So our hopes are pinned on coming off of the prostaglandin and her little heart working properly.
They decided to do another echo today instead. The reason for this was so that she could be talked about in the cardiologists staff meeting tomorrow morning. The doctor (Dr. Eldridge)came and talked to her and told her that the heart was worse than yesterday and that she had to prepare for surgical options. She talked to Teri about the Norwood procedure, about a heart transplant, about flying to Denver to have all this done. Teri was overwhelmed.
I raced down about 6:00 pm and tried to start gathering information. Of course nothing happened fast. I got there just in time for shift change and only was able to see Ellie for about 10 min. The nurse told me what she could, but it wasn't much.
After the shift change and dinner, we went back and the night nurse got the nurse practitioner (she's the head nurse on the floor) who in turn got Dr. Cam Arrington cardiologist. I have spoken with Dr. Arrington before and I have really liked his candor and ability to explain. I think he did a good job here tonight as well.
Dr. Arrington talked about our options. There are several pathways we can take. All of which seem to have good, very logical and viable conclusions. But each one also has a negative side.
I'll try to dump what he said.
Most of this will hinge on what comes out of tomorrow's meeting.
His opinion was that probably the first step they'll take is to take her off the prostaglandin (PGE's). This will allow the PDA (patent ductus arterialis) to close and the left side of the heart to start working on its own. If it is able to work at even 10% that might be enough. (He said that the number 10% is a bit misleading because normal is 60%. So if its able to do 1/6th of normal we could be ok). They would then try to get her off the ventilation, then the dopamine and melanone. The problem arises if she has a crash they may not be able to open the PDA back up because its been too long.
Having the PDA open this long is also very dangerous. After too much exposure to oxygenated blood the lungs can be damaged as well.
Another option is a modified version of the Norwood procedure. Basically, through a series of surgeries they would re-plumb her heart so that the right side was doing all the work. Ultimately with this procedure the right side of the heart would pump blood out through the body and straight to the lungs. The Superior and Inferior Vena Cava would be connected directly to the lungs. The blood would come out of the lungs to the right side of the heart and get pumped out to the body again.
This procedure would only lengthen the amount of time we have before a heart transplant. With transplants the problem is qualifying for them. If she has lung problems because of the PDA having been open for too long, it wouldn't work. There are several criteria that need to be met in order for this to work.
So our hopes are pinned on coming off of the prostaglandin and her little heart working properly.
posted by paqogomez | 9:56 PM
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