Saturday, May 2, 2009
DAY 32
Faith has had a good day. The PICU is absolutely crazy right now with multiple kids on Ecmo and 4 rooms that need 2 nurses each, ours being one of them. So Faith needs to behave herself. I had a talk with her and told her that she has already had her turn getting all the attention and now she needs to be a good girl and allow the doctors time with other patients. So far, she seems to be listening. :) Knock on wood it continues!
Friday, May 1, 2009
DAY 31 - update
For those of you that know hospital life - things constantly change. Faith is not an exception. So, after her primary physicians here in the ICU consulted with Dr. Marr, a pediatric GI surgeon, a new plan has been set.
Dr. Marr works here at UCD and also at Sutter Memorial so many of you may know him and how great he is. He has a friend that does ERCP on adults that has worked on some of Dr. Marr's pediatric patients, as well. They would like to work together to do an endoscopic ultrasound to look at Faith's ducts and see if they are completely blocked or not. This is a non-invasive procedure that will give us a plan of action. If their is a complete blockage, then we need to go to one of the options I spoke of earlier. If there is flow, but it is compressed, they can put a tube in through her nose into the area (called a nasobiliary tube) to drain some of the fluid or put an actual stent in to create an opening for fluid to flow through.
This is much less risky, even with the tissue of the pancreas and they feel confident they won't disturb that tissue. Of course, there is always risk but it is much less than the other two especially when it comes to bleeding issues.
So, I feel good about this...well, as good as I could in this situation. They think they can perform this on Monday if they can coordinate with anesthesia. I think this is a safer, smarter route to go under these circumstances. Hopefully, the area is not fully blocked and can be simply and safely opened up. This is what I will be praying for.
Today she will be going to Interventional Radiology for a G-J tube. She has a gastric tube, but that area is partially blocked and feeding has not been successful. By going into the small intestine, we can hopefully get her fed. She has had a G-J tube before and they can be a pain, but this is what she needs right now. This procedure does involve anesthesia, as well, but it is very low risk. The poor girl hasn't been fed for a month, so it is necessary! Wish us luck.
Dr. Marr works here at UCD and also at Sutter Memorial so many of you may know him and how great he is. He has a friend that does ERCP on adults that has worked on some of Dr. Marr's pediatric patients, as well. They would like to work together to do an endoscopic ultrasound to look at Faith's ducts and see if they are completely blocked or not. This is a non-invasive procedure that will give us a plan of action. If their is a complete blockage, then we need to go to one of the options I spoke of earlier. If there is flow, but it is compressed, they can put a tube in through her nose into the area (called a nasobiliary tube) to drain some of the fluid or put an actual stent in to create an opening for fluid to flow through.
This is much less risky, even with the tissue of the pancreas and they feel confident they won't disturb that tissue. Of course, there is always risk but it is much less than the other two especially when it comes to bleeding issues.
So, I feel good about this...well, as good as I could in this situation. They think they can perform this on Monday if they can coordinate with anesthesia. I think this is a safer, smarter route to go under these circumstances. Hopefully, the area is not fully blocked and can be simply and safely opened up. This is what I will be praying for.
Today she will be going to Interventional Radiology for a G-J tube. She has a gastric tube, but that area is partially blocked and feeding has not been successful. By going into the small intestine, we can hopefully get her fed. She has had a G-J tube before and they can be a pain, but this is what she needs right now. This procedure does involve anesthesia, as well, but it is very low risk. The poor girl hasn't been fed for a month, so it is necessary! Wish us luck.
DAY 31
I have barely had a chance to post about the meeting yesterday as Faith has been awake so much. But here is what the results are:
Faith's heart and lungs are working well. Our main issues are stomach, liver and kidneys. From the CT scan, they do see there is a block within the ducts that connect all of these organs. This is not allowing her to be fed through her stomach and is making bile excrete in her system, creating liver failure and the jaundice. It is only a miserable, downhill slope if something is not done.
So, the procedure I spoke of that that is done with the machine they do not have at this hospital is out of the picture. Dr. Haight spoke to numerous specialist at different hospitals and it cannot be done. The end of Faith's pancreas has some breakdown and if the scope were to hit it and break it apart, it would be fatal. Apparently it could not open up the ducts with a stent, like originally thought.
Our next option, and the one everyone would like to see happen, is having Interventional Radiology go in through her liver from the side of her abdomen and open up the ducts. The problem with this procedure is that Faith is extremely high risk and she could bleed to death by going through the liver. Because of this, Interventional Radiology may refuse to do it.
If they refuse, the next option is to ask Pediatric GI surgery to open her back up and try. They too may refuse since they have already opened her up 3 times. Doing the procedure through Interventional Radiology is a better choice because they can see better by using cat scan and xray going through the liver than the naked eye by Pediatric Surgery.
Both procedures have the risk of her bleeding to death. However, she already has this risk as she has shown us numerous times. Monty and I have decided that we would rather have her die from us trying to help her...than to not do anything at all. Not doing anything leads to death, as well, and not a pleasant one.
If someone agrees to help us and Faith were to make it through the surgery, it would give us hope that her organs can start to make a comeback. We could get her fed and things could start to heal. The primary thing that needs to heal is her abdomen. At this point, with all of our organ troubles, the open abdomen is not going to heal. Everyday that it is open, increases the risk of infection that can be fatal as well. She would still need her feet amputated at some point too. Bottom line is that even if the surgery is succesful, we would still have a long, scary road ahead of us.
We feel that Faith is worth taking the risk. She has shown us over and over how strong she is. We have to give her the chance. For us, we can't live with not doing anything and that is obviously something to be taken into account....what Monty and I could live with. We fully understand the risks, but there are no good options here. We would rather her go with us knowing that we tried everything we could to keep her here. That is what we can live with.
Faith's heart and lungs are working well. Our main issues are stomach, liver and kidneys. From the CT scan, they do see there is a block within the ducts that connect all of these organs. This is not allowing her to be fed through her stomach and is making bile excrete in her system, creating liver failure and the jaundice. It is only a miserable, downhill slope if something is not done.
So, the procedure I spoke of that that is done with the machine they do not have at this hospital is out of the picture. Dr. Haight spoke to numerous specialist at different hospitals and it cannot be done. The end of Faith's pancreas has some breakdown and if the scope were to hit it and break it apart, it would be fatal. Apparently it could not open up the ducts with a stent, like originally thought.
Our next option, and the one everyone would like to see happen, is having Interventional Radiology go in through her liver from the side of her abdomen and open up the ducts. The problem with this procedure is that Faith is extremely high risk and she could bleed to death by going through the liver. Because of this, Interventional Radiology may refuse to do it.
If they refuse, the next option is to ask Pediatric GI surgery to open her back up and try. They too may refuse since they have already opened her up 3 times. Doing the procedure through Interventional Radiology is a better choice because they can see better by using cat scan and xray going through the liver than the naked eye by Pediatric Surgery.
Both procedures have the risk of her bleeding to death. However, she already has this risk as she has shown us numerous times. Monty and I have decided that we would rather have her die from us trying to help her...than to not do anything at all. Not doing anything leads to death, as well, and not a pleasant one.
If someone agrees to help us and Faith were to make it through the surgery, it would give us hope that her organs can start to make a comeback. We could get her fed and things could start to heal. The primary thing that needs to heal is her abdomen. At this point, with all of our organ troubles, the open abdomen is not going to heal. Everyday that it is open, increases the risk of infection that can be fatal as well. She would still need her feet amputated at some point too. Bottom line is that even if the surgery is succesful, we would still have a long, scary road ahead of us.
We feel that Faith is worth taking the risk. She has shown us over and over how strong she is. We have to give her the chance. For us, we can't live with not doing anything and that is obviously something to be taken into account....what Monty and I could live with. We fully understand the risks, but there are no good options here. We would rather her go with us knowing that we tried everything we could to keep her here. That is what we can live with.
Thursday, April 30, 2009
DAY 30
This is insane....Faith looks really good today. All of her vitals are great, her color looks better, they were able to take off Epinephrine (that had been started again), and her eyes are open and she will squeeze your hand or close her eyes when asked. All I can say, is there is NO WAY they can talk me into pulling plugs. Everytime they give up on her, she shows us that they shouldn't. She is so strong and has such a will to survive. There is no doubt in my mind that she should be given the chance to continue her journey. She is not done. I am not done.
With that being said, here is where we are at:
The team of her physicians will be meeting at 3pm to discuss what they feel is the best plan for her. They want to all be on the same page with that.
We are supposed to go in with them at 4:00pm.
Dr. Haight, the GI specialist, does feel there is a blockage between her liver and her intestines based on her CT scan. The simplest procedure is the one I discussed yesterday, however the doctor that performs the procedure only comes the first 3 Wednesdays of the month. So, we would have to wait until Wednesday. He comes from UCSF and can bring the equipment. Otherwise, the only other hospitals that have the equipment available are UCSF or Stanford. I asked about a transfer and they were not sure she is stable enough. (But that was yesterday).
They may have to fix it surgically which is high risk, of course. However, her main problem right now is her liver. She is not a candidate for a transplant and there is no cure for a failed liver other than transplant. So, if we can try to get her liver functioning better by removing the blockage....I feel it is worth the risk. Your liver is what clots your blood, so by getting her liver functioning better, we could possibly stop these bleeds as well.
So, I am open to a transfer and/or surgery. Obviously, Faith continues to show her will to survive. I think we should give her that chance...even if these things come with high risk. I can't pull plugs. I just can't. I would much rather lose her trying to keep her than just giving up.
That is where we are at today in this insane journey of "keeping Faith". I will check back in after the meeting and let you all know what the plan will be.
Keep praying. Keep Faith.
With that being said, here is where we are at:
The team of her physicians will be meeting at 3pm to discuss what they feel is the best plan for her. They want to all be on the same page with that.
We are supposed to go in with them at 4:00pm.
Dr. Haight, the GI specialist, does feel there is a blockage between her liver and her intestines based on her CT scan. The simplest procedure is the one I discussed yesterday, however the doctor that performs the procedure only comes the first 3 Wednesdays of the month. So, we would have to wait until Wednesday. He comes from UCSF and can bring the equipment. Otherwise, the only other hospitals that have the equipment available are UCSF or Stanford. I asked about a transfer and they were not sure she is stable enough. (But that was yesterday).
They may have to fix it surgically which is high risk, of course. However, her main problem right now is her liver. She is not a candidate for a transplant and there is no cure for a failed liver other than transplant. So, if we can try to get her liver functioning better by removing the blockage....I feel it is worth the risk. Your liver is what clots your blood, so by getting her liver functioning better, we could possibly stop these bleeds as well.
So, I am open to a transfer and/or surgery. Obviously, Faith continues to show her will to survive. I think we should give her that chance...even if these things come with high risk. I can't pull plugs. I just can't. I would much rather lose her trying to keep her than just giving up.
That is where we are at today in this insane journey of "keeping Faith". I will check back in after the meeting and let you all know what the plan will be.
Keep praying. Keep Faith.
Wednesday, April 29, 2009
DAY 29 - update
The team met and no decisions have to be made today. Dr. Choy is not ready to give up yet, nor are we. A liver specialist is supposed to talk to us this afternoon and there is talk of another procedure to see if there is a block between her liver and pancreas. It is not common for children to have this, but it is a possibility and could possibly be what is making the liver have so much trouble. It is a non-invasive procedure, so they feel fairly safe in going ahead with it. I don't know when it will be scheduled for. I doubt today, but maybe tomorrow.
So, we have bought some time and can hold off going to "the room" for now. The music lady, Kathy, came by today and sang songs to Faith which Faith loved. She had her eyes open for all her favorite songs. It was beautiful.
We need more answers and more clarity before making any choices. I don't want her to suffer, I really don't, but I am not there yet and they are keeping her comfortable. We will see what the specialists have to say and go from there.
Thank you for all the prayers....they are desperately needed.
(By the way, Desiree, if you would like to come by with your pastor tonight, I would welcome it.)
So, we have bought some time and can hold off going to "the room" for now. The music lady, Kathy, came by today and sang songs to Faith which Faith loved. She had her eyes open for all her favorite songs. It was beautiful.
We need more answers and more clarity before making any choices. I don't want her to suffer, I really don't, but I am not there yet and they are keeping her comfortable. We will see what the specialists have to say and go from there.
Thank you for all the prayers....they are desperately needed.
(By the way, Desiree, if you would like to come by with your pastor tonight, I would welcome it.)
DAY 29
Faith made it back from the OR last night and once again, they could not find the bleed. They are saying her kidneys and liver are too damaged and this is not something she can recover from. They want us to make decisions and at some point today...we will be back in "the room". How do you make choices like this? She is still opening her eyes, she is still fighting....how do you give up on that? I don't want her to suffer. She deserves better, but I just don't know what to do. This is a horrible day.
Tuesday, April 28, 2009
DAY 28 - A Miracle needed
Faith has another bleed. She is back in the OR. We are so sad and feel so helpless. She is strong, but how much can she endure? Please pray for her.
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