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.
Thursday, April 30, 2009
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.
Sunday, April 26, 2009
DAY 26
Faith is having a good day (per report from Monty). Monty said she watched an entire episode of Max and Ruby! She was also a good patient...squeezing the hand of her nurse when asked to do so and opening or closing her eyes when asked. That is my good girl!!
They will be starting feeds today. An extremely small amount to start with at only 2 ml per hour. But, better to be safe as starting feeds can draw blood into the GI tract. That is where most of our troubles have surfaced so I am nervous even at only 2ml per hour!
They are also trying to wean down on vent settings. We can't seem to get down on the Nitric Oxide, but that can be given via nasal canula...so lets get off the vent so I can hear my baby's voice!
On the downside, Faith's liver function is failing a bit more. The doctors are not too concerned as they feel it was from the blood that surrounded the liver and the abdominal pressure she has had because of the bleed. She is quite yellow, however, so I hope they are correct.
Still no CT results. I guess that is a good thing?????
They will be starting feeds today. An extremely small amount to start with at only 2 ml per hour. But, better to be safe as starting feeds can draw blood into the GI tract. That is where most of our troubles have surfaced so I am nervous even at only 2ml per hour!
They are also trying to wean down on vent settings. We can't seem to get down on the Nitric Oxide, but that can be given via nasal canula...so lets get off the vent so I can hear my baby's voice!
On the downside, Faith's liver function is failing a bit more. The doctors are not too concerned as they feel it was from the blood that surrounded the liver and the abdominal pressure she has had because of the bleed. She is quite yellow, however, so I hope they are correct.
Still no CT results. I guess that is a good thing?????
Saturday, April 25, 2009
DAY 24 and 25
Yesterday, the wound-vac was changed by the surgery team. They reported that the bowls looked pink and healthy and they did not see any active bleed. She does have a tear in her rectum, so they will be keeping her on antibiotics as a preventative measure and will not start her feeds for a few more days until it heals a bit.
The CT scan was not done yesterday, but will be done today. They did do an ultrasound of her neck and kidneys yesterday. Her kidneys are normal size and the neck did not show any blood clots. Woohoo! However, they don't understand why the neck is swollen and red and circulation to the arms is not adequate. The arms can look red and a bit purple at times.
Bloodwork still shows infection, although they can't find the source. Hopefully the CT will show something. Possibly pockets of fluid that are breeding bacteria that they can drain and culture. She will be having the CT later today, so I will come back and update once we have results.
9:00 pm: Sorry, but still no results from the CT. The Radiologist will read them and we will hopefully have a report tomorrow morning after rounds. Let you know then....
The CT scan was not done yesterday, but will be done today. They did do an ultrasound of her neck and kidneys yesterday. Her kidneys are normal size and the neck did not show any blood clots. Woohoo! However, they don't understand why the neck is swollen and red and circulation to the arms is not adequate. The arms can look red and a bit purple at times.
Bloodwork still shows infection, although they can't find the source. Hopefully the CT will show something. Possibly pockets of fluid that are breeding bacteria that they can drain and culture. She will be having the CT later today, so I will come back and update once we have results.
9:00 pm: Sorry, but still no results from the CT. The Radiologist will read them and we will hopefully have a report tomorrow morning after rounds. Let you know then....
Thursday, April 23, 2009
DAY 23
First of all, I want to thank our anonymous gifter today! We are honored and touched by your generosity. Your gift came as a huge surprise and is greatly appreciated by our family during this hardship. Thank you doesn't seem enough....but THANK YOU....from all of us in the Duarte family.
As for Faith, she is still staying strong. She has opened her eyes for a few minutes at a time. It is always so wonderful to see her big, beautiful brown eyes looking at us. Makes my heart melt.
She is recovering faster from this bleed as she is almost back to the settings she was at prior to it. The doctor was just in and is pleased at her progress, however still has no plan for how to deal with her stomach. They believe the bloating is due to blood clots being in the abdomen. If so, it is time that will break those clots and allow them to be reabsorbed into the body. Surgery will be in here tomorrow to change her wound-vac and look at her intestines and will hopefully allow for a plan to be made. It is frustrating for them to not have answers and without answers...it is hard to know the right thing to do.
The other concern at the moment is a growing redness around her neck and upper chest area. The area is warm, so the concern is an infection. They don't feel she is stable enough to go down for a CT today, but are planning on one tomorrow to look at a possible cause for it. Obviously they would like to know what it is in order to treat it effectively.
Tomorrow will be a busy day, so I will wait until evening to post so that I can be armed with information (hopefully :) ). Have a great day.
As for Faith, she is still staying strong. She has opened her eyes for a few minutes at a time. It is always so wonderful to see her big, beautiful brown eyes looking at us. Makes my heart melt.
She is recovering faster from this bleed as she is almost back to the settings she was at prior to it. The doctor was just in and is pleased at her progress, however still has no plan for how to deal with her stomach. They believe the bloating is due to blood clots being in the abdomen. If so, it is time that will break those clots and allow them to be reabsorbed into the body. Surgery will be in here tomorrow to change her wound-vac and look at her intestines and will hopefully allow for a plan to be made. It is frustrating for them to not have answers and without answers...it is hard to know the right thing to do.
The other concern at the moment is a growing redness around her neck and upper chest area. The area is warm, so the concern is an infection. They don't feel she is stable enough to go down for a CT today, but are planning on one tomorrow to look at a possible cause for it. Obviously they would like to know what it is in order to treat it effectively.
Tomorrow will be a busy day, so I will wait until evening to post so that I can be armed with information (hopefully :) ). Have a great day.
Wednesday, April 22, 2009
DAY 23
Faith has remained stable through the night and throughout the day. Her stomach still looks HUGE, but they believe the bleeding has stopped. There was concern yesterday that she had clotted in her IVC, but ultrasound today showed that is not the case. The IVC was being compressed by the abdominal pressure and was prohibiting adequate blood flow to the heart. Thank heavens!
We have good news amongst all of this craziness....our housing at Ronald McDonald will be able to continue. The only thing we have to do is change rooms on the 1st. What a relief to take something off of our stressload.
I will be back to the hospital tomorrow. Our schedule had to be tweaked a bit due to Monty's schedule. So, hopefully, the night will go well and I will be able to report progress tomorrow.
As always, thanks for your prayers and well wishes.
We have good news amongst all of this craziness....our housing at Ronald McDonald will be able to continue. The only thing we have to do is change rooms on the 1st. What a relief to take something off of our stressload.
I will be back to the hospital tomorrow. Our schedule had to be tweaked a bit due to Monty's schedule. So, hopefully, the night will go well and I will be able to report progress tomorrow.
As always, thanks for your prayers and well wishes.
Tuesday, April 21, 2009
DAY 22
Well, unfortunately the bleeding started up again and Faith's abdominal area continued to increase. Her vitals started dropping and she became very unstable and things got crazy. Flashbacks kept coming at me of the horrors of the first week.
Faith was brought back down to surgery after much discussion. Once again, they did not find the source of the bleed. What they ended up doing is taking the piece of artificial skin out to allow fluids to escape. The wound-vac was placed over the abdominal opening and fluid is draining at this point.
I am really nervous and scared, but trying to be as positive for her as I can. I know how strong she is and I have to remember that she has pulled through this before. However...prayers, prayers.
Faith was brought back down to surgery after much discussion. Once again, they did not find the source of the bleed. What they ended up doing is taking the piece of artificial skin out to allow fluids to escape. The wound-vac was placed over the abdominal opening and fluid is draining at this point.
I am really nervous and scared, but trying to be as positive for her as I can. I know how strong she is and I have to remember that she has pulled through this before. However...prayers, prayers.
Monday, April 20, 2009
DAY 21
The bleeding from last night has subsided, but her abdominal area is now quite enlarged. The Pediatric GI surgery team does not want to intervene at this time. They want to continue to wait it out and see if it is fluid that her body will reabsorb or leak out through her wound-vac. I hope that is the case, but I will be sick with worry until it is resolved. I am so scared of her bleeding again.
Intermittent Dialysis did not work. She was back to a marshmallow within 24 hours. She is back on continuous Dialysis for the time being and they may try again to wean her towards the end of the week.
The latest on her feet are that most of the foot seems to be dead tissue. She is not bothered by people touching them, so it does seem to be the case. We continue to wait to see how far up it will go. As it looks now, it is back to probably mid-shin level. Ortho. explained that they have to amputate far enough up to have healthy tissue at the end of the stump. So, we will continue to wait it out and see.
Please think positive thoughts that these abdominal issues will be resolved quickly!!
Intermittent Dialysis did not work. She was back to a marshmallow within 24 hours. She is back on continuous Dialysis for the time being and they may try again to wean her towards the end of the week.
The latest on her feet are that most of the foot seems to be dead tissue. She is not bothered by people touching them, so it does seem to be the case. We continue to wait to see how far up it will go. As it looks now, it is back to probably mid-shin level. Ortho. explained that they have to amputate far enough up to have healthy tissue at the end of the stump. So, we will continue to wait it out and see.
Please think positive thoughts that these abdominal issues will be resolved quickly!!
Sunday, April 19, 2009
DAY 20
Faith is having some bleeding issues again. Blood was coming out of her wound-vac and so a surgeon was called to check it out. It was a scheduled day for the wound-vac change, anyways. They thought the bleeding might be coming from the stitches from where they placed the artificial skin. However, in true Faith fashion..it was not. They thought about taking her to the OR and doing exploritory surgery again, but have opted to wait it out through the night and see if her body will heal on its own. Aaaahhhhh!!! Monty and I are freaking out! Her vitals remain stable, though, and she has a great nurse today. Guess we just have to pray harder and hope she will heal without intervention. Keep positive thoughts going, right? Keep Faith.
I forgot to share a strange story. Faith has been going to preschool over the past couple of years. This last school year she has been at is Headstart and the staff and children made a get-well card for her. It is a beautiful, sweet card with everyone's picture on it that Faith will LOVE. When Monty went to pick it up, one of the teachers also gave him a plant. The plant was from a day that all the kids planted beans. Apparently, according to the teacher, all the other childrens plants died and Faith's was the only one that lived! Is that weird, or what? And, not only did the plant live...it flourished!!! They potted it in a pretty pot and we have it at home now. Hmmm....
Dominic and Jessica got to see Faith yesterday. Faith opened her eyes a few times for them, which made them very happy. I am hoping hearing her siblings voices gave her more strength for today. She loves them so much!!!!
I am back to the hospital tomorrow and will hopefully be able to report the bleeding has subsided and she is doing well!
I forgot to share a strange story. Faith has been going to preschool over the past couple of years. This last school year she has been at is Headstart and the staff and children made a get-well card for her. It is a beautiful, sweet card with everyone's picture on it that Faith will LOVE. When Monty went to pick it up, one of the teachers also gave him a plant. The plant was from a day that all the kids planted beans. Apparently, according to the teacher, all the other childrens plants died and Faith's was the only one that lived! Is that weird, or what? And, not only did the plant live...it flourished!!! They potted it in a pretty pot and we have it at home now. Hmmm....
Dominic and Jessica got to see Faith yesterday. Faith opened her eyes a few times for them, which made them very happy. I am hoping hearing her siblings voices gave her more strength for today. She loves them so much!!!!
I am back to the hospital tomorrow and will hopefully be able to report the bleeding has subsided and she is doing well!
Saturday, April 18, 2009
DAY 19
Faith has been running a slight fever and her white cells are elevated. Back to checking all sources for more infection. Preliminary blood work will be available tomorrow to know if she needs additional antibiotics.
The rest of her vitals and blood work are coming back acceptable and she was able to tolerate being off dialysis last night. We were so happy to get that Dialysis machine out of her room because it was HUGE. With it out, we were able to get one of the more comfortable chairs back. For those of you that have spent a lot of time in ICU, you know exactly what I mean!
I am back home now and Monty has started his two day shift. We have until the 30th to continue that way and then may have to figure something else out. Our stay at Ronald McDonald house ends on the 30th. When it ends, you have to go out for 7 days and then can reapply to get back in. So, for those 7 days we are trying to get into another housing system with UCD because the hotel near the hospital runs about $100 night. Expensive! We may end up just switching every 24 hours during that time. Then, we can come home and get a litte rest after 24 hours being bedside and that will enable us to get a shower. I don't know about you guys, but I can handle not getting enough rest... but I can't stand not getting a shower!!!! Yuk!
Other than that, things are moving along. Hopefully, the elevated white count is due to her body trying to respond to working harder and NOT more infection. Guess we will find out tomorrow. Love to all and a huge thank you to Hearts of Hope that has been bringing meals by the hospital every other day!!!
The rest of her vitals and blood work are coming back acceptable and she was able to tolerate being off dialysis last night. We were so happy to get that Dialysis machine out of her room because it was HUGE. With it out, we were able to get one of the more comfortable chairs back. For those of you that have spent a lot of time in ICU, you know exactly what I mean!
I am back home now and Monty has started his two day shift. We have until the 30th to continue that way and then may have to figure something else out. Our stay at Ronald McDonald house ends on the 30th. When it ends, you have to go out for 7 days and then can reapply to get back in. So, for those 7 days we are trying to get into another housing system with UCD because the hotel near the hospital runs about $100 night. Expensive! We may end up just switching every 24 hours during that time. Then, we can come home and get a litte rest after 24 hours being bedside and that will enable us to get a shower. I don't know about you guys, but I can handle not getting enough rest... but I can't stand not getting a shower!!!! Yuk!
Other than that, things are moving along. Hopefully, the elevated white count is due to her body trying to respond to working harder and NOT more infection. Guess we will find out tomorrow. Love to all and a huge thank you to Hearts of Hope that has been bringing meals by the hospital every other day!!!
Friday, April 17, 2009
DAY 18
Faith has been sleeping most of the day. Guess her body needs the rest from all the hard work it has been doing!
They are changing her wound-vac right now and after that they will be stopping dialysis. If she can tolerate it, they would like to only give her Dialysis for 3-4 hours every other day. Time to see if her kidneys will get to work on their own.
Other than that, no other changes for now.
They are changing her wound-vac right now and after that they will be stopping dialysis. If she can tolerate it, they would like to only give her Dialysis for 3-4 hours every other day. Time to see if her kidneys will get to work on their own.
Other than that, no other changes for now.
Thursday, April 16, 2009
DAY 17
Faith looked great when I came in today! The fluid is coming off and she no longer looks like something you put in a smore. She let me sing songs to her and read her books. She even tried to turn the pages of the book! She points to the tv when she wants it on and points to the telephone when it rings. When one of her machines beep, she will point to her nurse. She is fighting off being suctioned, too. All of these are great signs that Faith is getting back to her old self. Woohoo!!!!!
Wednesday, April 15, 2009
DAY 16
Faith ended up needed surgery instead of just a wound-vac change today. Her wound from the incision to the abdomen is not healing, so they put in an "artificial" piece of skin to close the gap. Basically, it is a piece of pigskin. Faith will love that one! The procedure took about 2 hours and she did well. I was a nervous wreck, but Faith did fine. That is all that matters.
Her Nitric Oxide levels, unfortunately, had to be turned back up. The gas is what helps expand her lungs. The gas helps the flow between heart, lungs and body and it just shows her body is not ready to take on the full load yet and that is ok. Sometimes I think Doctors try to do things too fast anyways. Just slow down a bit when the patient is in a good spot and leave them alone for awhile!
They decided not to stop Dialysis. Again, things were working well, why change it? The dialysis is finally being able to take off some of the fluid and they want to continue with that a bit longer. I definitely agree with that decision.
I did enjoy my time at home with the other kids. It was a bit hectic with gymnastics, LaCrosse, and my board meeting. But that is our "normal" life and it was time for me to be back in it for awhile.
*just want to say a special thank you to all who post on the blog. We love reading it and it will be a very special thing to keep forever for Faith!
Her Nitric Oxide levels, unfortunately, had to be turned back up. The gas is what helps expand her lungs. The gas helps the flow between heart, lungs and body and it just shows her body is not ready to take on the full load yet and that is ok. Sometimes I think Doctors try to do things too fast anyways. Just slow down a bit when the patient is in a good spot and leave them alone for awhile!
They decided not to stop Dialysis. Again, things were working well, why change it? The dialysis is finally being able to take off some of the fluid and they want to continue with that a bit longer. I definitely agree with that decision.
I did enjoy my time at home with the other kids. It was a bit hectic with gymnastics, LaCrosse, and my board meeting. But that is our "normal" life and it was time for me to be back in it for awhile.
*just want to say a special thank you to all who post on the blog. We love reading it and it will be a very special thing to keep forever for Faith!
Tuesday, April 14, 2009
DAY 15
Today is my day to go home. I wouldn't have been able to do it a few days ago. Faith was just too unstable. But since Faith has had 3 fairly good days, I am pretty excited about seeing the other kids and will enjoy them 100%. I am going to have them all climb in bed with me, eat some popcorn and snuggle all night!
Faith is my little drugie today. She was being too fiesty and reactive, so now is on a continuous drip of Versed. It is better for her...I know...but I miss seeing her "real" personality shine through.
Faith met her goal on the Nitric Oxide of 5 and now we are going to hold at that level for awhile and work on lowering some of the Vent settings.
They were able to finally get fluid off last night. 400cc's and are hoping to do that again over the next 24 hours! If so, they may try to take her off dialysis tomorrow and see how it goes.
Her feet look incredible. I wish everyone could have seen what they looked like last week to see what they look like today. Last week, they were literally a dark purple, almost black, up to mid-shin. That is why initially that is where they thought they would have to amputate from. Today, they are only marbled with some purple. Most of the tissue is pink and lookes like it is healing. The toes still hold that dark purple look, so we'll have to see about those. But, I am really hopeful about the rest of it! It has been such a crazy thing to watch the transformation. Dr. Choy has only seen this once in his career and not to this extent. Really incredible.
Tomorrow they are going to be changing the wound-vac and attempting to stop dialysis. It will be a busy day for my baby. Once I get a report from Monty, I fill everyone in on how her day went.
Take care.
Faith is my little drugie today. She was being too fiesty and reactive, so now is on a continuous drip of Versed. It is better for her...I know...but I miss seeing her "real" personality shine through.
Faith met her goal on the Nitric Oxide of 5 and now we are going to hold at that level for awhile and work on lowering some of the Vent settings.
They were able to finally get fluid off last night. 400cc's and are hoping to do that again over the next 24 hours! If so, they may try to take her off dialysis tomorrow and see how it goes.
Her feet look incredible. I wish everyone could have seen what they looked like last week to see what they look like today. Last week, they were literally a dark purple, almost black, up to mid-shin. That is why initially that is where they thought they would have to amputate from. Today, they are only marbled with some purple. Most of the tissue is pink and lookes like it is healing. The toes still hold that dark purple look, so we'll have to see about those. But, I am really hopeful about the rest of it! It has been such a crazy thing to watch the transformation. Dr. Choy has only seen this once in his career and not to this extent. Really incredible.
Tomorrow they are going to be changing the wound-vac and attempting to stop dialysis. It will be a busy day for my baby. Once I get a report from Monty, I fill everyone in on how her day went.
Take care.
Monday, April 13, 2009
DAY 14
Faith has been a fiesty little one this morning. She is not liking to be messed with and really does not enjoy all the tubing and bandages all over her body! Just a sign that she is getting back to her normal self. :)
The only medical change today is to go down on her Nitric Oxide. They want to wean her off over the next 4 days. One step closer to getting her off the ventilator and getting to hear her sweet voice.
That's it for today. Hope everyone had a nice Easter. (Monty and the kids had a great meal courtesy of Mr. Ken D. Such a generous man.)
The only medical change today is to go down on her Nitric Oxide. They want to wean her off over the next 4 days. One step closer to getting her off the ventilator and getting to hear her sweet voice.
That's it for today. Hope everyone had a nice Easter. (Monty and the kids had a great meal courtesy of Mr. Ken D. Such a generous man.)
Sunday, April 12, 2009
DAY 13
Faith did very well with her surgery. They didn't find anything significant, but I think it was a blessing in disguise. The wound vac they put over the site is helping things improve. Fluid is not draining all over her skin and entry sites. The nurses can actually sit down for awhile and chart instead of having to change soaked pads every 15-30 minutes!
They have been able to lower her vent settings and go down on more of her medications. Faith has been alert a lot more and trying to communicate. Dr. Raff suggested getting child life to make communication cards to help her out. He is such a great guy...going beyond his specialty which is the heart...to the entire well-being of his patient. We are blessed to have him!
They do not think infection is in the lungs and there has not been growth in her bloodwork regarding the sepsis. It scares me to even say anything like that, though, because I am afraid to jinx it. Bottom line, is that we are making great progress but still have to remember that she continues to remain in critical condition at this point in time. We can just pray that we continue on this path without any major setbacks.
Monty will be going home later today to start our shifting of 2 days on, 2 days off. Time to be there for the other kids, as well, and I know they will be so happy to see their daddy today. I am here at Ronald McDonald getting some laundry done before he leaves and then will be heading over to see my beautiful, strong, inspirational little girl.
I want everyone to enjoy their families on this Easter Day. Please try to concentrate on being fully engaged with the ones you love. HAPPY EASTER!
They have been able to lower her vent settings and go down on more of her medications. Faith has been alert a lot more and trying to communicate. Dr. Raff suggested getting child life to make communication cards to help her out. He is such a great guy...going beyond his specialty which is the heart...to the entire well-being of his patient. We are blessed to have him!
They do not think infection is in the lungs and there has not been growth in her bloodwork regarding the sepsis. It scares me to even say anything like that, though, because I am afraid to jinx it. Bottom line, is that we are making great progress but still have to remember that she continues to remain in critical condition at this point in time. We can just pray that we continue on this path without any major setbacks.
Monty will be going home later today to start our shifting of 2 days on, 2 days off. Time to be there for the other kids, as well, and I know they will be so happy to see their daddy today. I am here at Ronald McDonald getting some laundry done before he leaves and then will be heading over to see my beautiful, strong, inspirational little girl.
I want everyone to enjoy their families on this Easter Day. Please try to concentrate on being fully engaged with the ones you love. HAPPY EASTER!
Saturday, April 11, 2009
DAY 12
Faith is in surgery again. The leaking is still out of control, they need to know the source of the air in the stomach and her intestines have started to come visibly come out of the first abdominal surgery incision. They are going in there to put them back inside and explore to hopefully find source of these problems. Of course, when we got here her blood pressure numbers, oxygen and all the rest of her numbers we looking very positive, so this will be a set-back. With the sepsis, this adds to all of her risks. Need lots of prayers today and for Faith to continue to be the strong little fighter she is.
I'll update you later when we know how things went. Obviously, things will be a bit crazy when they are complete, but I will try my best to fill you in as soon as I can.
I'll update you later when we know how things went. Obviously, things will be a bit crazy when they are complete, but I will try my best to fill you in as soon as I can.
Friday, April 10, 2009
DAY 11
I am sitting in the waiting room right now because they are switching Faith over to a conventional vent...again...so we will see if she can tolerate this time. Cross your fingers she is strong enough now!
As you saw in the picture, she is much more alert today. It is wonderful to see her eyes open and have more clarity to them. However, when she is more alert, she starts pulling at all of her tubes and a sedative has to be given. Whatever it takes to help her heal.
She is leaking from every site there is and dressings are having to be changed every 1/2 hour. Things are leaking all over her lines and creating skin breakdown, which is another source for infection to enter. Faith is making these poor nurses work for their money!!! She has two nurses at all times and neither one get to sit down very often. I don't know how their poor feet do it for 12 hours straight! Like I have said before, everyone here is amazing.
They tried to start feeds via her G-Tube last night, but had some problems. There is a great amount of air in her stomach and they are not sure why. Surgery came in this morning to discuss it. Again, they are going to wait it out since she doesn't seem to be in distress from it which does not make it an emergency at this point. If she had a large hole in the bowels or somewhere else, we should have known by now. The drainage is thin and primarily clear so as long as it doesn't change, they would like to avoid opening her up. Us too!
I wanted to go home and see the other kids yesterday but a couple of them are sick so I was not able to. We can't take the risk of bringing something back to Faith. They were so understanding and seriously deserve awards for being the best siblings ever AND just being the greatest kids in general. We are so lucky to have them!!
As you saw in the picture, she is much more alert today. It is wonderful to see her eyes open and have more clarity to them. However, when she is more alert, she starts pulling at all of her tubes and a sedative has to be given. Whatever it takes to help her heal.
She is leaking from every site there is and dressings are having to be changed every 1/2 hour. Things are leaking all over her lines and creating skin breakdown, which is another source for infection to enter. Faith is making these poor nurses work for their money!!! She has two nurses at all times and neither one get to sit down very often. I don't know how their poor feet do it for 12 hours straight! Like I have said before, everyone here is amazing.
They tried to start feeds via her G-Tube last night, but had some problems. There is a great amount of air in her stomach and they are not sure why. Surgery came in this morning to discuss it. Again, they are going to wait it out since she doesn't seem to be in distress from it which does not make it an emergency at this point. If she had a large hole in the bowels or somewhere else, we should have known by now. The drainage is thin and primarily clear so as long as it doesn't change, they would like to avoid opening her up. Us too!
I wanted to go home and see the other kids yesterday but a couple of them are sick so I was not able to. We can't take the risk of bringing something back to Faith. They were so understanding and seriously deserve awards for being the best siblings ever AND just being the greatest kids in general. We are so lucky to have them!!
Thursday, April 9, 2009
DAY 10 (4-9-09)
Today we have been on a slow and steady course. No progress, yet no setbacks and we are fine with that.
They are concerned about yeast in her lungs, but the cultures have not come back yet to let us know.
She is in a lot of pain and they are having a hard time controlling it. It is great that she is waking up and wanting to fight us, but we don't want her to be so uncomfortable.
As for her feet, a physician from Shriners burn unit came to look at it. She wants to wait it out to see how much damage is done. The outer tissue was removed and the right foot looks like it may be ok. The left foot has clots in the veins and probably won't fare so well. Only time will tell and they may not make a choice for a month or so as long as no infection sets in.
A mom from Georgia called and shared her story of her miracle daughter, Megan. She heard about Faith and wanted to make sure I heard the story of her inspiring daughter defeating all odds. It meant a lot for her to share her story and give us more hope. Thank you.
I will check in tomorrow.
They are concerned about yeast in her lungs, but the cultures have not come back yet to let us know.
She is in a lot of pain and they are having a hard time controlling it. It is great that she is waking up and wanting to fight us, but we don't want her to be so uncomfortable.
As for her feet, a physician from Shriners burn unit came to look at it. She wants to wait it out to see how much damage is done. The outer tissue was removed and the right foot looks like it may be ok. The left foot has clots in the veins and probably won't fare so well. Only time will tell and they may not make a choice for a month or so as long as no infection sets in.
A mom from Georgia called and shared her story of her miracle daughter, Megan. She heard about Faith and wanted to make sure I heard the story of her inspiring daughter defeating all odds. It meant a lot for her to share her story and give us more hope. Thank you.
I will check in tomorrow.
Wednesday, April 8, 2009
FEET
Just a quick note to let you know that now they are questioning amputating her feet. They don't know which way to go because of the concern of putting her through another surgery with her blood pressure already so low. So, once I have a definitive answer I will let everyone know. It makes me feel good to know that they really trying their best to make choices. They are such a great team and I have never once questioned Faith's care here. The UCD PICU team are the best!
WEDNESDAY
Faith had a rough night. They took her off the Oscillator and put her on a regular vent. She did well at first, but then things started crashing so she is back on the Oscillator. She just wasn't ready.
The other part of the night was that the Vascular surgeon came in and Faith will be losing her feet. We cannot risk infection. Because of the poor circulation and damage, they will more than likely be amputating at about mid-shin down. It sounds awful but it may actually help because then her body doesn't have to try to heal her lower extremeties.
The good news is that Faith was completely opening her eyes this morning!!! She was trying to smile and trying to talk. She was raising her right hand for yes and squeezing our hand for no. It was very exciting!
Right now, she is sedated and has pain medication in her which they did before they messed with her feet. It has got to be very painful and they didn't want to do that to her. She will more than likely be sleeping for quite a few hours, but I am praying she will be opening her eyes again when she wakes up. It was wonderful!
I slept last night and Monty is sleeping right now. I know we have to start thinking about how we are going to manage this long term, but we haven't even had a chance! Dr. Raff said that if things continued going in this direction, that we should expect to be here until at least the end of May. This will be very challenging since we have so many children and extracurricular activities to manage. It is going to take some serious planning and organization. But, how do you complain when it could mean that we would be bringing Faith home?
Thanks to all for all the kind and encouraging words.
The other part of the night was that the Vascular surgeon came in and Faith will be losing her feet. We cannot risk infection. Because of the poor circulation and damage, they will more than likely be amputating at about mid-shin down. It sounds awful but it may actually help because then her body doesn't have to try to heal her lower extremeties.
The good news is that Faith was completely opening her eyes this morning!!! She was trying to smile and trying to talk. She was raising her right hand for yes and squeezing our hand for no. It was very exciting!
Right now, she is sedated and has pain medication in her which they did before they messed with her feet. It has got to be very painful and they didn't want to do that to her. She will more than likely be sleeping for quite a few hours, but I am praying she will be opening her eyes again when she wakes up. It was wonderful!
I slept last night and Monty is sleeping right now. I know we have to start thinking about how we are going to manage this long term, but we haven't even had a chance! Dr. Raff said that if things continued going in this direction, that we should expect to be here until at least the end of May. This will be very challenging since we have so many children and extracurricular activities to manage. It is going to take some serious planning and organization. But, how do you complain when it could mean that we would be bringing Faith home?
Thanks to all for all the kind and encouraging words.
Tuesday, April 7, 2009
APPRECIATION
I appreciate everyone's positive thoughts and prayers because guess what.....they are working!!!! In my darkest hour, a miracle was shown. At about 11:45pm, Faith's nurse checked her pupils and there was no response. Prior to that, Faith had done a bit of what looked like twitching. I asked how that was possible with no brain function and she said that she did not know.
About a half hour later, I was talking to to Faith and told her she was my pretty princess and she SMILED! From that point on, Faith has continued to smile on occasion and is moving her feet and her hands. Auntie Glenda and daddy, along with nurses and doctors got to witness these miracles. Faith is also opening her mouth on her own to be suctioned! After an hour or so of some responsiveness, they were able to take her completely off the epinepherin, her blood pressure went up and they were able to lower the levels on her pacemaker because she was overriding it!!
It was truley a miracle and the entire hospital staff had tears in their eyes and renewed hope on so many levels. Like I said, I appreciate everyone's prayers soooo much because they HAVE to be working!!!! I will never again question a higher power and this was life changing.
Of course, there are still many concerns so we still met at 11:00 to discuss where we go from this point. Obviously she is not going to be declared braindead and we will continue to proceed. There are serious concerns about her liver, kidneys and feet. They did an ultrsound on her liver today, but I haven't found out the results. Her kidneys are being supported by dialysis and she may not be able to go off dialysis. That is concerning because we don't have access on her upper body due to her cardiac anatomy. Her feet, like I have said before, are awful and they are worried about gangrene setting in. They are consulting with a Vascular surgeon and ortho to discuss a plan. More than likely, we will lose some part of the feet. She is septic , has internal yeast and possible other infections that are being cultured and that is the reason for isolation.
But, at least FINALLY some good news. So sorry everyone is being dragged along on this crazy ride, but thank you for sticking with us and continuing to give us strength. Lets keep our fingers crossed this is the turn we needed to continue on a stable path. I'm not sure how much more OUR hearts can take!
About a half hour later, I was talking to to Faith and told her she was my pretty princess and she SMILED! From that point on, Faith has continued to smile on occasion and is moving her feet and her hands. Auntie Glenda and daddy, along with nurses and doctors got to witness these miracles. Faith is also opening her mouth on her own to be suctioned! After an hour or so of some responsiveness, they were able to take her completely off the epinepherin, her blood pressure went up and they were able to lower the levels on her pacemaker because she was overriding it!!
It was truley a miracle and the entire hospital staff had tears in their eyes and renewed hope on so many levels. Like I said, I appreciate everyone's prayers soooo much because they HAVE to be working!!!! I will never again question a higher power and this was life changing.
Of course, there are still many concerns so we still met at 11:00 to discuss where we go from this point. Obviously she is not going to be declared braindead and we will continue to proceed. There are serious concerns about her liver, kidneys and feet. They did an ultrsound on her liver today, but I haven't found out the results. Her kidneys are being supported by dialysis and she may not be able to go off dialysis. That is concerning because we don't have access on her upper body due to her cardiac anatomy. Her feet, like I have said before, are awful and they are worried about gangrene setting in. They are consulting with a Vascular surgeon and ortho to discuss a plan. More than likely, we will lose some part of the feet. She is septic , has internal yeast and possible other infections that are being cultured and that is the reason for isolation.
But, at least FINALLY some good news. So sorry everyone is being dragged along on this crazy ride, but thank you for sticking with us and continuing to give us strength. Lets keep our fingers crossed this is the turn we needed to continue on a stable path. I'm not sure how much more OUR hearts can take!
Monday, April 6, 2009
PRAYERS NEEDED!!!!!!!!!!!!!!!!!!!!!!!!!!!
Neurology was called in today and they did a series of test and feel that Faith is brain dead and it just didn't show up on the CT. Supposedly sometimes brain injury doesn't show up on a CT for a few days. Monty and I had to go to a private room with a team of doctors and be told there is little to no hope. It was horrifying. I couldn't even look at them.
Luckily, Dr. Choy has not given up yet and still carries some hope along with us. We are also fortunate to have our favorite ICU doctor here tonight that has been the most positive out of everyone about her hope of recovery. They have asked for the tests to be repeated tomorrow. They will repeat the tests tomorrow at 11am and then will be bringing us back in to that stupid room to talk again.
Meanwhile, we are stuck here feeling sick and wondering how to get through the night. We know we have to be somewhat realistic, yet this is our little girl. It is so hard to know what is the right thing to do. The chaplin was called in...again...and said more prayers. We are saying prayers and are hoping tomorrow will bring more clarity.
Please, please, please pray extra hard for her tonight and tomorrow morning. She is just too special to lose.
Luckily, Dr. Choy has not given up yet and still carries some hope along with us. We are also fortunate to have our favorite ICU doctor here tonight that has been the most positive out of everyone about her hope of recovery. They have asked for the tests to be repeated tomorrow. They will repeat the tests tomorrow at 11am and then will be bringing us back in to that stupid room to talk again.
Meanwhile, we are stuck here feeling sick and wondering how to get through the night. We know we have to be somewhat realistic, yet this is our little girl. It is so hard to know what is the right thing to do. The chaplin was called in...again...and said more prayers. We are saying prayers and are hoping tomorrow will bring more clarity.
Please, please, please pray extra hard for her tonight and tomorrow morning. She is just too special to lose.
MONDAY
I'm sorry to have to say this, but we are asking for absolutely no visitors during the next few days. The ICU will actually turn visitors away at this time. Faith has a very elevated white count and they will be taking numerous blood draws to find the source of infection to effectively treat it. All precautions are being made and we are going in with scrubs and gloves. It will take a few days to get the true results back and until then....we have to be very careful about introducing any new germs into her room and in turn, to her.
Her blood work from last night did show yeast in the abdomen so they are already treating that. They are trying really hard to get her off the epi. because her feet are horrible. She has open multiple wounds on them and they are working on figuring out a way to isolate them and avoid infection entering through them (if it hasn't already).
Otherwise, her heart rate is stable as is her blood pressure. They are not able to remove more fluid from her right now because getting her off the epinepherine has become priority due to her feet. Once we wean her off that, we can concentrate on the fluid retention again. One step at a time.
Thank you for your understanding. Love you all and really enjoy the posts back to us!
Her blood work from last night did show yeast in the abdomen so they are already treating that. They are trying really hard to get her off the epi. because her feet are horrible. She has open multiple wounds on them and they are working on figuring out a way to isolate them and avoid infection entering through them (if it hasn't already).
Otherwise, her heart rate is stable as is her blood pressure. They are not able to remove more fluid from her right now because getting her off the epinepherine has become priority due to her feet. Once we wean her off that, we can concentrate on the fluid retention again. One step at a time.
Thank you for your understanding. Love you all and really enjoy the posts back to us!
Sunday, April 5, 2009
SUNDAY
Today has been a hard day emotionally. Honestly, I had a hard time getting out of bed and joining the fight today. I wanted to pull the covers over my head and pretend this wasn't happening. I am a pretty private person and I am tired of people watching my emotional roller coaster. I feel like crap, look like crap and am ready for this crap to be over. But....as the day has gone on, I have gotten better and realize I can't lose hope. If I lost hope then I am not helping Faith at all. We all need to try to be strong. Faith continues to be strong, so we need to be as well.
As far as Faith goes, we got our bubble burst a bit today. We were on such a high last night from the CT scan and this morning we were told it was grim again due to high acid levels. Also, her feet are so very purple and are cracking, blistering and draining fluid from them. However, if we lose the feet but keep Faith, I will be forever grateful. We can deal with that outcome.
It is 5:30pm right now and Faith has held at a stable level all day. That is all we can ask for at this moment. They were able to wean off one of her medications, wean off some of the oxygen and her blood gases have been looking good. That is the positives of the day and we will take all we can get.
It was wonderful to see the other kids and the Ronald McDonald house put on a nice Easter Egg hunt. I think seeing them is ultimately what helped my mood. They are such awesome kids!!!
I hope tomorrow's post will be a more positive one. Please keep up the prayers and positive thoughts. We still need them!
**By the way, this was not meant to get sympathy. It was simply sharing the true feelings of this ordeal. I am making this blog to share with everyone what is going on, but also as a chronical of the events both medically and emotionally for us to keep and look back on. We know we are going to have our good days and bad....that is the roller coaster ride that all of us with special needs kids unfortunately have to endure.
As far as Faith goes, we got our bubble burst a bit today. We were on such a high last night from the CT scan and this morning we were told it was grim again due to high acid levels. Also, her feet are so very purple and are cracking, blistering and draining fluid from them. However, if we lose the feet but keep Faith, I will be forever grateful. We can deal with that outcome.
It is 5:30pm right now and Faith has held at a stable level all day. That is all we can ask for at this moment. They were able to wean off one of her medications, wean off some of the oxygen and her blood gases have been looking good. That is the positives of the day and we will take all we can get.
It was wonderful to see the other kids and the Ronald McDonald house put on a nice Easter Egg hunt. I think seeing them is ultimately what helped my mood. They are such awesome kids!!!
I hope tomorrow's post will be a more positive one. Please keep up the prayers and positive thoughts. We still need them!
**By the way, this was not meant to get sympathy. It was simply sharing the true feelings of this ordeal. I am making this blog to share with everyone what is going on, but also as a chronical of the events both medically and emotionally for us to keep and look back on. We know we are going to have our good days and bad....that is the roller coaster ride that all of us with special needs kids unfortunately have to endure.
Saturday, April 4, 2009
SATURDAY PM
Today has been crazy busy. Our dialysis lines got clotted a few times, so she was off for quite a few hours and we lost some ground with her fluid retention. She is still a human marshmallow. They have it working now and we are crossing our fingers we don't continue to have problems. It is such a key component in getting her better.
Faith's lungs have also filled with fluid and we had to switch to a different kind of vent called an oscillator. It expands the lungs better and will work more effectively for her. However, she was fighting the machine so they had to give her a drug that acts as a paralysis to put her on it. At first that freaked me out, but the Dr. said it was a good thing because it will make her completely relax which would help out her organs in their recovery. That does make sense.
We also had a CT today. I got the feeling we went in because they were wondering if they should work so hard to keep Faith going. I was an emotional wreck and , wow, what a process to get her down to the CT with all her machines she is hooked up to! Eight people, including two doctors, went with her on this journey and it was quite the task. However, it was worth the effort! The CT scan showed that she does NOT have any significant brain damage. Hooray!!!!! There is a small bleed at the base of the skull, but not anything that needs to be drained. So, I think this has made the medical team here feel better about continuing her care and it sure made Monty and I feel like we have hope again!!! The neurologist feels like the lack of dialation of the pupils is due to the swelling and the pressure it is putting on the brain stem which controls our vitals. So, again, we are back to this swelling issue and how critical it is to bring it down.
A funny thing that happened today is that Faith lost a tooth! She lost one of her front teeth, which actually makes a perfect little gap for her vent tubing. I am sure it was knocked out by the vent and suctioning, but no harm was done so no big deal. Now, I just get to carry a little piece of her in my purse. :)
Tomorrow the other kids are coming down to see her and the Ronald McDonald house is putting on a Easter Egg hunt. So, we will take a little time away to spend with them over there. They should enjoy it and we will enjoy seeing them.
Take care and I'll fill you in tomorrow.
Faith's lungs have also filled with fluid and we had to switch to a different kind of vent called an oscillator. It expands the lungs better and will work more effectively for her. However, she was fighting the machine so they had to give her a drug that acts as a paralysis to put her on it. At first that freaked me out, but the Dr. said it was a good thing because it will make her completely relax which would help out her organs in their recovery. That does make sense.
We also had a CT today. I got the feeling we went in because they were wondering if they should work so hard to keep Faith going. I was an emotional wreck and , wow, what a process to get her down to the CT with all her machines she is hooked up to! Eight people, including two doctors, went with her on this journey and it was quite the task. However, it was worth the effort! The CT scan showed that she does NOT have any significant brain damage. Hooray!!!!! There is a small bleed at the base of the skull, but not anything that needs to be drained. So, I think this has made the medical team here feel better about continuing her care and it sure made Monty and I feel like we have hope again!!! The neurologist feels like the lack of dialation of the pupils is due to the swelling and the pressure it is putting on the brain stem which controls our vitals. So, again, we are back to this swelling issue and how critical it is to bring it down.
A funny thing that happened today is that Faith lost a tooth! She lost one of her front teeth, which actually makes a perfect little gap for her vent tubing. I am sure it was knocked out by the vent and suctioning, but no harm was done so no big deal. Now, I just get to carry a little piece of her in my purse. :)
Tomorrow the other kids are coming down to see her and the Ronald McDonald house is putting on a Easter Egg hunt. So, we will take a little time away to spend with them over there. They should enjoy it and we will enjoy seeing them.
Take care and I'll fill you in tomorrow.
SATURDAY 4-4-09
Today Faith's pupils are not responding to light so they are concerned there is swelling in her brain. Her breathing has become more rapid which could be an indication of swelling as well. An EEG has been ordered.
Dialysis is being tolerated, with the exception of a clot that resulted in having to change out all the lines. Usually heprin is used with dialysis, but they can't use it since Faith had all that bleeding and due to the fact her platelets are low. Unfortunately, this could happen often.
They are trying to get her off Epinephrine today because it is greatly affecting circulation to her extremeties. Both feet are extremely blue and there is concern of losing the feet.
TPN and lipids have been added to her daily routine to give her more calories and fat.
I wish there were more to say, but there is not. It is a waiting game and only time will let us know what we are truly dealing with here. Thank heavens she keeps holding on, though, and I keep hearing encouraging stories of others that have defeated all odds. They help.
I miss my other kids, but obviously Faith takes priority right now. They are amazing kids, though, and are holding up well. They know how to step it up when necessary. I love them so much!!!!! I can't wait for the day I can have my family back together again!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Dialysis is being tolerated, with the exception of a clot that resulted in having to change out all the lines. Usually heprin is used with dialysis, but they can't use it since Faith had all that bleeding and due to the fact her platelets are low. Unfortunately, this could happen often.
They are trying to get her off Epinephrine today because it is greatly affecting circulation to her extremeties. Both feet are extremely blue and there is concern of losing the feet.
TPN and lipids have been added to her daily routine to give her more calories and fat.
I wish there were more to say, but there is not. It is a waiting game and only time will let us know what we are truly dealing with here. Thank heavens she keeps holding on, though, and I keep hearing encouraging stories of others that have defeated all odds. They help.
I miss my other kids, but obviously Faith takes priority right now. They are amazing kids, though, and are holding up well. They know how to step it up when necessary. I love them so much!!!!! I can't wait for the day I can have my family back together again!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Friday, April 3, 2009
FRIDAY
We had a very active day today. Basically, nothing that the medical team had been doing was working to reduce the swelling. Because of that and the fact that she is in renal and kidney failure, dialysis was started. Drainage tubes were also placed in the left lung and the abdomen to extract fluid and relieve pressure on her organs.
She has tolerated all of these things well and I am feeling like the dialysis is really what was needed to start turning things around. She is already looking pinker and not as cold on her extremeties. No changes in blood pressure, temp or other vitals.
I am feeling like we will have a good day tomorrow. Of course, I will let you all know.
She has tolerated all of these things well and I am feeling like the dialysis is really what was needed to start turning things around. She is already looking pinker and not as cold on her extremeties. No changes in blood pressure, temp or other vitals.
I am feeling like we will have a good day tomorrow. Of course, I will let you all know.
LETTER TO FAITH
To Faith,
You are the most beautiful spirit I have ever met. I am the luckiest person in the world to be your mommy and get to observe your amazing strength. I love everything about you - even the challenging parts - because that makes you YOU! I can't even imagine life without you nor do I want to. You make my life so much better, happier and entertaining. It is so much fun to take you places and watch you draw everyone to you. You are magical.
I don't understand why God has made you have to go through so much and I wish I could take it all away for you. But I suppose there has to be some reason. Maybe it is to watch you...someone who could so easily give up...yet never does. To realize how precious life is through you. How to learn to smile and thank people even through rough times.
You have taught me how to have more patience, love deeper and care more. Our family is stronger and closer because of you. I thank God for every minute I have shared with you. Adopting you was the best decision your dad and I ever made.
As I watch you tonight, I pray you find the strength to continue your fight. You have done it before and I can only hope you can do it again. You are an extremely special little girl. I don't know why someone up above thought I should be lucky enough to be your mommy, but I am extremely grateful they did.
Hang in there my angel. I know you have more to give to this world. I love you baby girl, so so much. Stay strong and try to come back to us soon. I am very proud of you.
I love you Faithy.
Mom
You are the most beautiful spirit I have ever met. I am the luckiest person in the world to be your mommy and get to observe your amazing strength. I love everything about you - even the challenging parts - because that makes you YOU! I can't even imagine life without you nor do I want to. You make my life so much better, happier and entertaining. It is so much fun to take you places and watch you draw everyone to you. You are magical.
I don't understand why God has made you have to go through so much and I wish I could take it all away for you. But I suppose there has to be some reason. Maybe it is to watch you...someone who could so easily give up...yet never does. To realize how precious life is through you. How to learn to smile and thank people even through rough times.
You have taught me how to have more patience, love deeper and care more. Our family is stronger and closer because of you. I thank God for every minute I have shared with you. Adopting you was the best decision your dad and I ever made.
As I watch you tonight, I pray you find the strength to continue your fight. You have done it before and I can only hope you can do it again. You are an extremely special little girl. I don't know why someone up above thought I should be lucky enough to be your mommy, but I am extremely grateful they did.
Hang in there my angel. I know you have more to give to this world. I love you baby girl, so so much. Stay strong and try to come back to us soon. I am very proud of you.
I love you Faithy.
Mom
Thursday, April 2, 2009
Hearts of Hope
Andrea- There are a few cardiac families in the ICU right now. Barb told me that she would like cards for the support group to hand out. When you have some time, maybe you could drop some by clinic for her or give some to me and I will get them to her. Thank you! Shelly
THURSDAY PM
Wow, do I feel so much better after getting some rest! My brain feels like it is working again and I am actually able to process information...which was not happening yesterday! Dr. Raff even told me to go take a shower yesterday! I thought it was hilarious and asked him if I really looked that bad. He just said that I looked the way he felt. He has always been honest with me, so I'm sure he will be happy to see I am rested and have gotten that shower. :) Monty is off getting his rest and will be back in the morning.
Right before I left, alarms started beeping and there was a rush of activity. However, it was good news....Faith's heart has kicked in and is beating at a good rate ON ITS OWN!!!!! This is very exciting and it has continued throughout the day without a drop in her blood pressure. They have kept the pacer on, but it will only kick in if her rate drops below a certain level. Go Faith!!!
The plan for tonight is on the more aggressive side. We have a new doctor on board tonight with a fresh perspective. I like his plan because we have got to get her organs to start doing their job! Time is of the essence to ensure recovery. Faith looks like a marshmallow, she is incredibly puffy due to fluid retention. Her abdomen keeps getting larger and they have talked about the possibility of adding another drain for fluid in that area. So to work on this problem, they are going to cut her vasopressin dosage in half. Vasopressin is a blood pressure medication that can have a negative effect on your kidneys. Faith is retaining all this fluid and not having urine output, so this is the first step in solving this. After two hours of tolerating it, they will turn this medication off. This is in hopes that she can maintain her blood pressure while getting her kidneys to do their job of urine output. If Faith is able to have this medication discontinued and there is still not much improvement in the outflow of fluids, the Dr. will start a drip of the diuretic Lasix. All of this fluid retention is creating pressure on her organs and we have to address it ASAP!!
Her saturation levels remain good and they are able to lower her oxygen vent settings from 100% to 70%. They are still giving her nitric oxide every 2 hours. Her ammonia levels remain high, but are starting to lower, but still may need some medication help to flush it out. Bleeding is at normal post-op output. They are continuing with steriods and a few antibiotics as precautionary measures.
Neurologically, there is not much change with the exception of producing a cough when they suctioned her earlier. We were really happy with that! Her pupils are still responding to light, however extremely slowly. But, they are responding. We'll take it!
At this point, there are a few good things happening, but we have to be careful about how excited we get because she is still a very sick little girl. She remains in a critical state and we need to take things hour by hour. The main thing is though.........she is still here and she is still fighting!!!!!!!!!!!!!!!!!!!!!!! Keep up the prayers. I know they are helping!!!
Right before I left, alarms started beeping and there was a rush of activity. However, it was good news....Faith's heart has kicked in and is beating at a good rate ON ITS OWN!!!!! This is very exciting and it has continued throughout the day without a drop in her blood pressure. They have kept the pacer on, but it will only kick in if her rate drops below a certain level. Go Faith!!!
The plan for tonight is on the more aggressive side. We have a new doctor on board tonight with a fresh perspective. I like his plan because we have got to get her organs to start doing their job! Time is of the essence to ensure recovery. Faith looks like a marshmallow, she is incredibly puffy due to fluid retention. Her abdomen keeps getting larger and they have talked about the possibility of adding another drain for fluid in that area. So to work on this problem, they are going to cut her vasopressin dosage in half. Vasopressin is a blood pressure medication that can have a negative effect on your kidneys. Faith is retaining all this fluid and not having urine output, so this is the first step in solving this. After two hours of tolerating it, they will turn this medication off. This is in hopes that she can maintain her blood pressure while getting her kidneys to do their job of urine output. If Faith is able to have this medication discontinued and there is still not much improvement in the outflow of fluids, the Dr. will start a drip of the diuretic Lasix. All of this fluid retention is creating pressure on her organs and we have to address it ASAP!!
Her saturation levels remain good and they are able to lower her oxygen vent settings from 100% to 70%. They are still giving her nitric oxide every 2 hours. Her ammonia levels remain high, but are starting to lower, but still may need some medication help to flush it out. Bleeding is at normal post-op output. They are continuing with steriods and a few antibiotics as precautionary measures.
Neurologically, there is not much change with the exception of producing a cough when they suctioned her earlier. We were really happy with that! Her pupils are still responding to light, however extremely slowly. But, they are responding. We'll take it!
At this point, there are a few good things happening, but we have to be careful about how excited we get because she is still a very sick little girl. She remains in a critical state and we need to take things hour by hour. The main thing is though.........she is still here and she is still fighting!!!!!!!!!!!!!!!!!!!!!!! Keep up the prayers. I know they are helping!!!
THURSDAY
Hello all. Faith has remained stable throughout the night, so our goal for today is to start weaning her off some of the medications. They are going to do this ever so slowly and it will be a long process, but little by little we hope to accomplish this. Monty and I are going to be smart today and try to get some rest. Starting tomorrow, we are going to our usual hospital plan of 2 days on and 2 days off. To be honest, I don't know if I will be able to leave. So while he is here I am going to do the first shift of rest and go over to the Ronald McDonald house. I won't be any good to Faith if I continue on this path of exhaustion and end up sick. When Monty goes home...it is all me...so time to get some shut eye (with my cell phone on the pillow). Monty will rest up tonight and go home tomorrow to take care of the other kids and coach the LaCross game on Saturday.
Dominic and Jessica were able to see Faith yesterday. Dominic is 11 and Jessica is 10, so it was felt they were mature enough to handle it. Child life and a social worker talked them through it and it went beautifully. We all sang songs to her which I think the whole ICU got to hear them. :) It was very sweet. They are such close siblings!
I haven't posted a picture since the kids check the blog, but now that they have seen her I feel better about posting one. Quite a few people have been asking so I am more comfortable with that now.
Well, I am off to get some rest and will write again this evening. Love ya!
Dominic and Jessica were able to see Faith yesterday. Dominic is 11 and Jessica is 10, so it was felt they were mature enough to handle it. Child life and a social worker talked them through it and it went beautifully. We all sang songs to her which I think the whole ICU got to hear them. :) It was very sweet. They are such close siblings!
I haven't posted a picture since the kids check the blog, but now that they have seen her I feel better about posting one. Quite a few people have been asking so I am more comfortable with that now.
Well, I am off to get some rest and will write again this evening. Love ya!
MIDDLE OF NIGHT
Monty is finally getting some rest and I am sitting here with my girl. She is still unresponsive but things are improving some. Her blood pressure has risen and her temperature is down, both good things. Her blood gases have stabalized, as well, so Dr. Raff has not had to open her back up. Phew.
The main issues now are still that the heart continues to be stiff and has not improved which is putting a lot of stress on her lungs. She is using a pacemaker to keep her heart rate where it is optimal for recovery. Her liver and kidney function are also compromized from so much trauma. She is not having much urine output and that is concerning with how much fluids they have been pushing into her. Her blood sugars are low so she is receiving insulin. Her platelets are also low and she has received numerous transfusions and every antibiotic and steriod in the book. If things remain stable over the next few hours, they will try cutting back on some of her medications and see how she does.
Faith is still not responding, but she has had a lot of sedating medications in her....and with her liver compromised....it is really hard to know if she has suffered any neurological damage. I guess that is the least of our worries at the moment. We just need to get her organs working properly and get her breathing on her own! For awhile there, it was not looking possible (chaplin even came to do prayer), but it is turning around and hope is building. She looks better. It is amazing that she is still with us, such a miracle. But that is Faith in a nutshell........a miracle.
The main issues now are still that the heart continues to be stiff and has not improved which is putting a lot of stress on her lungs. She is using a pacemaker to keep her heart rate where it is optimal for recovery. Her liver and kidney function are also compromized from so much trauma. She is not having much urine output and that is concerning with how much fluids they have been pushing into her. Her blood sugars are low so she is receiving insulin. Her platelets are also low and she has received numerous transfusions and every antibiotic and steriod in the book. If things remain stable over the next few hours, they will try cutting back on some of her medications and see how she does.
Faith is still not responding, but she has had a lot of sedating medications in her....and with her liver compromised....it is really hard to know if she has suffered any neurological damage. I guess that is the least of our worries at the moment. We just need to get her organs working properly and get her breathing on her own! For awhile there, it was not looking possible (chaplin even came to do prayer), but it is turning around and hope is building. She looks better. It is amazing that she is still with us, such a miracle. But that is Faith in a nutshell........a miracle.
Wednesday, April 1, 2009
UPDATE 4-1-09 at 12:00pm
Monty and I have left the room long enough to grab something to eat and sit down. Faith's room is very crowded with people and equipment that we don't even have chairs to sit in. We have to stand the whole time, which is a challenge! Sorry for ignoring phone calls and texts, but it is close quarters in there and we have been focused on Faith.
So let me fill you in on what we know...which still isn't that much. Basically, the next 18 hours are a critical recovery time. Her heart already had trauma from the surgery and then another trauma with the bloodloss. Her blood pressure continues to remain low and they are using every tool they have to keep it at an acceptable level. She continues to have the breathing tube and vent and they have added gases to help her lungs and heart relax. The right and left ventricles are extremely stiff right now so they are not doing their job properly, but that is common after cardiac surgery and that is why the next 18 hours or so is so critical. If they can get her over this hump, then hopefully her heart will begin to relax and work the way the surgery intended it to. They considered using BiPass, but her heart is such an irregular shape that it would be very difficult, but it remains an option if things don't improve. They have discussed other options as well, but are first trying the simplest solutions and hoping those will work.
Faith has incisions now down her entire bodice and is so bruised and swollen. I would post a picture, but it is too sad. She is running a fever and is unresponsive at the moment. To me, it seems like her color has improved a bit since the morning and I am hoping that is the case and it is not me just wishing it to be so. (I don't think it is)
Obviously, we are concerned, but Faith has a wonderful medical team behind her and we trust them to do everything they possibly can. They are putting in a PICC line at the moment so she has stable access and they continue to discuss her recovery options. As soon as there is something more concrete in her condition, I will let you know. All of you that know Faith, know she can endure quite a bit and get right back up. So, I am confident it will be the same this time...it just will take more time than we would like.
Thank you to all who are checking in and for the good thoughts and prayers.
So let me fill you in on what we know...which still isn't that much. Basically, the next 18 hours are a critical recovery time. Her heart already had trauma from the surgery and then another trauma with the bloodloss. Her blood pressure continues to remain low and they are using every tool they have to keep it at an acceptable level. She continues to have the breathing tube and vent and they have added gases to help her lungs and heart relax. The right and left ventricles are extremely stiff right now so they are not doing their job properly, but that is common after cardiac surgery and that is why the next 18 hours or so is so critical. If they can get her over this hump, then hopefully her heart will begin to relax and work the way the surgery intended it to. They considered using BiPass, but her heart is such an irregular shape that it would be very difficult, but it remains an option if things don't improve. They have discussed other options as well, but are first trying the simplest solutions and hoping those will work.
Faith has incisions now down her entire bodice and is so bruised and swollen. I would post a picture, but it is too sad. She is running a fever and is unresponsive at the moment. To me, it seems like her color has improved a bit since the morning and I am hoping that is the case and it is not me just wishing it to be so. (I don't think it is)
Obviously, we are concerned, but Faith has a wonderful medical team behind her and we trust them to do everything they possibly can. They are putting in a PICC line at the moment so she has stable access and they continue to discuss her recovery options. As soon as there is something more concrete in her condition, I will let you know. All of you that know Faith, know she can endure quite a bit and get right back up. So, I am confident it will be the same this time...it just will take more time than we would like.
Thank you to all who are checking in and for the good thoughts and prayers.
CRAZINESS!
Faith did pull a Faith...........stumped everyone once again. She made it through exploratory surgery and is on her way back to PICU, however with no explanation of where the bleeding came from. The doctors are scratching their heads and Monty and I have aged 100 years. She is on coagulation medication right now and that will hopefully prevent future bleeds. Basically, the doctor said that Faith almost bled to death without any explanation. Is that crazy or what? But, you know, yesterday just went too smoothly for my little Faith. We should have known better. Lets just cross our fingers this is the LAST scare and we are heading down the road of recovery!!!
KEEP HER IN YOUR PRAYERS
We took a turn for the worse last night. Faiths blood pressure started dropping and she has been losing a lot of blood. Dr. Raff was called and he reopened her chest in her PICU room. However, nothing was found wrong with her heart from surgery. She is losing blood faster than they can put it in her and cannot seem to find the source of the bleed. She is in the OR right now with Dr. Raff beside her and a team of other surgeons. They are going to open her abdomen to see if the bleeding is possibly coming from the liver or the spleen. If either of those, that would be best case scenario. If they find it is coming from the artery they placed her central line in, that would not be good for her as it would be hard to stop the bleeding. They said that this is a grave situation and that time is of the essence. They have moved Monty and I into a private room while we wait, which concerns me even more.
I am hoping that this is just Faith being "Faith"...always keeping us on our toes...and that she will pull through this just as she has everything else in the past. She is a beautiful little fighter and brings so much to our lives. I am hoping my mom (her mima) is with her right now, holding her hand and giving her strength.
Please pray for my little girl.
I am hoping that this is just Faith being "Faith"...always keeping us on our toes...and that she will pull through this just as she has everything else in the past. She is a beautiful little fighter and brings so much to our lives. I am hoping my mom (her mima) is with her right now, holding her hand and giving her strength.
Please pray for my little girl.
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