Ok so here's the update at this hour.
Jimmy is stable. They have elected to stop the surgery. The original fontan has gotten so large that it has actually fused with the sternum. That is why they had the trouble with nicking and causing bleeding. Jimmy has received 8 units of blood and 4 units of plasma. They had no emergent way in which to place him on the bypass maching due to the scarring of his femoral arteries. Had they not stopped, he would not have made it through the surgery. I am very disappointed.
The options now are that we let him recover for a few days, then try again -OR- they can try to manage him medically until he is no longer managable then place him on the transplant list, if he would even be accepted to the transplant list-OR-part of the problem is that he is extremely overweight for his frame size. So they have said that perhaps he should be put on a very strict weightloss program over the next year and try again.
The surgeon wants Jimmy to participate in this decision making process. So the goal is to wake him up, get him off the ventilator, and ask him what he wants to do.
This is absolutely the hardest, most difficult situation I have or ever want to be in.
I wish I had better news for you all. That's all for now. Thank you all for your well wishes.
Wednesday, December 16, 2009
Day of Surgery: 2:40pm
Ok, so new developments... The PA reports that they continue to work on the scar tissue. In the mean time they have had additional bleeding, "a lot" she said, they have had to give more blood. But blood gases, brain sats, blood levels and vital signs are currently stable. They have had to cardiovert a "few times". She assures me that the scar tissue battle was anticipated. My mind is racing with thoughts of "what if".
That's all I have to add for now. I think I better go find something to eat.
That's all I have to add for now. I think I better go find something to eat.
Day of surgery: 1:43pm
So, the PA just came out again. As it stands now, they were unable to use the femoral artery for the bypass machine because they are too small. So now they are back at the chest working to free the sternum from the scartissue beneath. You understand correctly if you are thinking..."they don't even have his chest open yet?!" The PA said they expect it will take at least 2 more hours to get through the scar tissue. She states that his vitals continue to be normal last BP was 120's systolic. HE is doing ok, it's the scar tissue that is causing the delay. They said he is continuing to bleed, "a slow trickle" is how she put it. They are giving him blood and using a cell saver (a device that collects his blood to reinfuse). So they feel like it is gonna be an additional 8 hrs from now before they are finished. That's right, 9:00pm tonight. Again, that "family anesthesia" idea I had earlier sounds pretty good right now.
We plan on having anothe update around 2:30pm. In the mean time, Jimmy's parents have taken off, not sure where to, they are stressed and having a difficult time sitting still. My parents have just left to go find something to eat down the street, Jake has decided to tag along. I think he finds it hard to sit as well. And obviously, here I sit writing. Maybe I will venture down to subway and grab a salad.
We plan on having anothe update around 2:30pm. In the mean time, Jimmy's parents have taken off, not sure where to, they are stressed and having a difficult time sitting still. My parents have just left to go find something to eat down the street, Jake has decided to tag along. I think he finds it hard to sit as well. And obviously, here I sit writing. Maybe I will venture down to subway and grab a salad.
Day of Surgery: 11:59am
The PA just came to update us. She assures us that everything is going just fine. However, as they were dissecting away the scar tissure they nicked the original fontan circuit vessel and thus there has been a lot of bleeding. Blood pressure and sats remain good and he has received a lot of fluid due to the bleeding. Due to this little snafu ( I think that is how to spell it...), they have had to abandon the scar tissue dissection to try and get him placed on the bypass machine via femoral artery.... Sounds easy, right? Hopefully. See last March when we were here for his heart cath they were unable to access either the left or right femoral arteries. They found out that they were both occluded as a result of multiple caths throughout his lifetime.
The plan from here is to get him placed on the bypass machine via femoral artery and return to dissecting away the scar tissue so that they can get to the repair part of the surgery. As you might imagine, this delays things a bit. I told them to take all the time that they need. I'm in no hurry. Of course, that was mostly a lie... but she did assure me that there is no panic stricken doctors at this moment. I hope that is the truth. :-)
I did ask the question: "What if you are unable to access the femoral artery?" and the response was, "We'll just try the other one." Ok. Then what? What if? But then again, I can "what if" my self crazy!
Jimmy's mom said," You know if he (Jimmy) knew what was going on right now he would be giving them heck." That is true. I can hear him now..."What do you mean you nicked the large vessel? I thought you all had done this before! You gotta be kidding me....explicatve, explicative, explicative!!" At least the thought of what he'll say makes me smile.
The nerves are a jumpin' though. I did relax enough to take a little rest. Mom has gone to Mass to pray. Dad and Jake are out roaming around the hospital because it is hard to sit still. Jimmy's parent's are looking out the window watching the cranes building a new addition to the hospital across the street. The tension of silence and worry surround us all. We have a long, long day ahead of us. If only they could give us all anesthesia to get through this, wouldn't that be great! "Hey now, wake up it's all over and everything went fine." Of course, that would add a lot to the final bill I am sure of it.... and I am sure that insurance would have something negative to say about paying for all of that comfort. Alas, I digress. We plan to know more in a couple of hours. Til then...
The plan from here is to get him placed on the bypass machine via femoral artery and return to dissecting away the scar tissue so that they can get to the repair part of the surgery. As you might imagine, this delays things a bit. I told them to take all the time that they need. I'm in no hurry. Of course, that was mostly a lie... but she did assure me that there is no panic stricken doctors at this moment. I hope that is the truth. :-)
I did ask the question: "What if you are unable to access the femoral artery?" and the response was, "We'll just try the other one." Ok. Then what? What if? But then again, I can "what if" my self crazy!
Jimmy's mom said," You know if he (Jimmy) knew what was going on right now he would be giving them heck." That is true. I can hear him now..."What do you mean you nicked the large vessel? I thought you all had done this before! You gotta be kidding me....explicatve, explicative, explicative!!" At least the thought of what he'll say makes me smile.
The nerves are a jumpin' though. I did relax enough to take a little rest. Mom has gone to Mass to pray. Dad and Jake are out roaming around the hospital because it is hard to sit still. Jimmy's parent's are looking out the window watching the cranes building a new addition to the hospital across the street. The tension of silence and worry surround us all. We have a long, long day ahead of us. If only they could give us all anesthesia to get through this, wouldn't that be great! "Hey now, wake up it's all over and everything went fine." Of course, that would add a lot to the final bill I am sure of it.... and I am sure that insurance would have something negative to say about paying for all of that comfort. Alas, I digress. We plan to know more in a couple of hours. Til then...
Day of surgery: 10:05am
Dr. Fraser just spoke with me. He wanted to answer any questions I might have before they get started on the actual surgery. I didn't have any questions. He states that they will be in surgery all day. Ugh, am I ready for this? I guess I have to be. Let the nerves begin! I will update as I am updated.
What is this surgery anyway?
Since I know not everyone reading this has heard my explanation of what they are going to be doing in this surgery, I figured that I would do my best to write a description.
Normal blood flow through the heart:
Vena cava, Right atria, tricuspid valve, right ventricle, pulmonary artery, lungs, pulmonary vein, left atria, mitral valve, left ventricle, aorta to the body and then back to the vena cava.
Jimmy's circulation at birth:
Vena cava,right atria, left atria, mitral valve, left ventricle,right ventricle, then both the pulmonary artery and the aorta exited the right atria. soooo, that means that blood went out to the body and the lungs from the same chamber. This made him what is termed, a "blue baby" cause he wasn't oxygenating all the blood that was sent out to the body.
As an infant he had multiple surgeries to create shunts and route the blood to the lungs before going out to the body. Then at age 7 he had a corrective surgery, called a "Fontan" to "fix" the circulation.
Over time all the patients that had a Fontan end up requiring heart transplants due to the dilation of the right atria that is made to be the only pumping chamber on the right side of the heart as well as failure of the created connections. That was until about 15 years ago. Now I am not sure when they actually started performing this corrective surgery the new way, but due to the "new" way of correcting the circulatory pathway the patients do not have the same complications and failure of the created circulatory pathway. In other words, the outcome are better and fewer longterm complications occur.
So what's the "new" way of fixing this problem? Basically, they connect the vena cava directly to the pulmonary artery bypassing the right side of the heart all together. Then the blood flows to the lungs back to the left atria, throught the mitral valve, into the left ventricle, and out the aorta to the body and back to the vena cava.
So now to the nitty gritty of what they are doing today. First they have to undo what was done when Jimmy was 7. Then they will create the connection from the vena cava to the pulmonary artery with a synthetic material called gortex. Because one of the longterm complications that develop from the "old" way of doing this surgery is atrial arrythmias (or fast heart beat), they are also going to do a "maze procedure". This is a procedure where they "burn out" the natural electrical pathways that trigger the heart to beat. Because they are "burning out" the trigger they have to create an artificial trigger; this is done by placing a pacemaker. It is also possible that they may have to "debulk" the right atria. Since the right atria has become gigantic over the years from all the pressure that it has had to endure by being the pumping chamber to the lungs, they may have to cut part of it away (debulk).
So, that's it in a nutshell...sounds prety straight foreward right? I hope this helps you all to understand this a little better and answer any questions that you might have.
Normal blood flow through the heart:
Vena cava, Right atria, tricuspid valve, right ventricle, pulmonary artery, lungs, pulmonary vein, left atria, mitral valve, left ventricle, aorta to the body and then back to the vena cava.
Jimmy's circulation at birth:
Vena cava,right atria, left atria, mitral valve, left ventricle,right ventricle, then both the pulmonary artery and the aorta exited the right atria. soooo, that means that blood went out to the body and the lungs from the same chamber. This made him what is termed, a "blue baby" cause he wasn't oxygenating all the blood that was sent out to the body.
As an infant he had multiple surgeries to create shunts and route the blood to the lungs before going out to the body. Then at age 7 he had a corrective surgery, called a "Fontan" to "fix" the circulation.
Over time all the patients that had a Fontan end up requiring heart transplants due to the dilation of the right atria that is made to be the only pumping chamber on the right side of the heart as well as failure of the created connections. That was until about 15 years ago. Now I am not sure when they actually started performing this corrective surgery the new way, but due to the "new" way of correcting the circulatory pathway the patients do not have the same complications and failure of the created circulatory pathway. In other words, the outcome are better and fewer longterm complications occur.
So what's the "new" way of fixing this problem? Basically, they connect the vena cava directly to the pulmonary artery bypassing the right side of the heart all together. Then the blood flows to the lungs back to the left atria, throught the mitral valve, into the left ventricle, and out the aorta to the body and back to the vena cava.
So now to the nitty gritty of what they are doing today. First they have to undo what was done when Jimmy was 7. Then they will create the connection from the vena cava to the pulmonary artery with a synthetic material called gortex. Because one of the longterm complications that develop from the "old" way of doing this surgery is atrial arrythmias (or fast heart beat), they are also going to do a "maze procedure". This is a procedure where they "burn out" the natural electrical pathways that trigger the heart to beat. Because they are "burning out" the trigger they have to create an artificial trigger; this is done by placing a pacemaker. It is also possible that they may have to "debulk" the right atria. Since the right atria has become gigantic over the years from all the pressure that it has had to endure by being the pumping chamber to the lungs, they may have to cut part of it away (debulk).
So, that's it in a nutshell...sounds prety straight foreward right? I hope this helps you all to understand this a little better and answer any questions that you might have.
Day of Surgery: 9:23am
Well, Jimmy went off to surgery about an hour and a half ago. Jimmy was joking with the nurses and docs this morning.
The PA just came out to update us. All the lines are in and Jimmy is doing well. Next update should be around 10:30-11:00. They anticipate that they will be working on dissecting away the scar tissue at the next update.
The PA just came out to update us. All the lines are in and Jimmy is doing well. Next update should be around 10:30-11:00. They anticipate that they will be working on dissecting away the scar tissue at the next update.
Day of surgery: 4:50am
Well, I am awake, dressed and ready (kind of), with coffee in hand for the day ahead. Jimmy is laying in bed watching TV, Jake is still asleep as is Max, the puppy. Let me just say that your thoughts and prayers are already helping, I am not as nervous at this point as I thought I would be. Jimmy, of course, is as cool as a cucumber.
We had a lovely dinner all together last night at Pappadeaux's Seafood Kitchen. Since we are near the coast we just HAD to have some fresh seafood. It was yummy!! Jimmy and I tried oysters on the half-shell for the first time. (I might add, only because my dad ordered 2 dozen!) They weren't bad at all. A little slimy, but otherwise tasteless, unless you pack on the sauces. Nothing like a little horseradish to clear the sinuses! Jimmy's parents and Jake just sat and watched us eat them. Mom even had a few. We laughed and Jimmy joked, much to my and his mother's dismay, that we should all sit on either side of him cause it's his last supper. If you can get past the blasphemy of it and if you know Jimmy at all, it was quite funny. Unsettling, but funny.
So, sit tight. I will be updating throughout the day.
We had a lovely dinner all together last night at Pappadeaux's Seafood Kitchen. Since we are near the coast we just HAD to have some fresh seafood. It was yummy!! Jimmy and I tried oysters on the half-shell for the first time. (I might add, only because my dad ordered 2 dozen!) They weren't bad at all. A little slimy, but otherwise tasteless, unless you pack on the sauces. Nothing like a little horseradish to clear the sinuses! Jimmy's parents and Jake just sat and watched us eat them. Mom even had a few. We laughed and Jimmy joked, much to my and his mother's dismay, that we should all sit on either side of him cause it's his last supper. If you can get past the blasphemy of it and if you know Jimmy at all, it was quite funny. Unsettling, but funny.
So, sit tight. I will be updating throughout the day.
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