Sunday, May 31, 2009

DAY 61

Faith has been sleeping all day, even without sedation. Her blood pressure dropped and she received a transfusion which did help.

It doesn't seem like all the medical team is on the same page as to what to do with Faith...essentially if there is hope or not. It is very confusing and scary. I say scary because of the bleeding issue and what her death could end up looking like. For those of you that know me and how my past year has been, you understand. I took care of my mom until her last breath and she did not pass peacefully. I have so much anxiety about having that happen again and I think it clouds my judgement.

If there is that inch of hope, how do you not hold on to that? However, if holding on to that means that she won't pass peacefully because of it.....because we waited to long.......i just don't know.

Monty is completely broken hearted and is really holding on to that bit of hope. Maybe I am feeling it is unrealistic, but what if I am wrong? I don't want to keep delaying the inevitable, but I don't want to turn my back on that little window of possible hope either. I am incredibly confused and so tired. I have never had this kind of exhaustion take over me since it is so many types of weariness. I pray for a clear answer. I pray for an answer soon. I pray I get it so I can do what is best for my baby girl.

Saturday, May 30, 2009

DAY 60- better explanation

So I just talked to Pediatric surgery and have a better explanation of what is going on. Unfortunately, I have not been well so haven't been able to hear it myself the past few days and have been getting second hand information.

I said that Faith is considered on "comfort care" and essentially that is true. We want to keep her as comfortable as possible. The other part that is true is that if Faith's blood pressure drops, they will not be using medication to bring it up due to the fact that it has too much of a negative effect on her digestive tract.

Now for the part that leads us to why she may be at the end of her stay here on Earth. She has had more blood coming out of her wound-vac and G-Tube site. Because of that, they did an exploratory scope which showed that 50-70% of her stomach was dead. Not good. However, the stomach has lots of vessels that bring blood supply to it, so there is still some hope (although small) that we can get the stomach to replenish itself. That is where hope and prayer come in.

The extremely concerning part is that output stopped out of her ostomy last night. That leads to concern that there is a hole that has developed in the stomach which leads to the even bigger concern that more of the intestine has now died (become necrotic). Surgery is not an option because all of her digestive tract is too fragile and the fact that we cannot give her blood pressure medication before, during or after surgery because it will cause more damage to the areas we are trying to fix. Again, going in that circle.

However, at this point we (and her doctors and surgeons) are not willing to throw in the towel because of two things: one is if the one of the vessels that goes to the stomach clotted and has now broken lose, maybe the stomach will gain the blood supply it needs to replenish itself. Two is that if there is a hole, if it is small enough, it has the potential of closing on its own. We will know if it starts closing if there is output out of her ostomy.

Only time will tell us if there is a hole. If there is she will get bacteria in her bloodstream and become septic. If she becomes septic, we cannot use the bloodpressure medication to help her get through it. Not to mention, she is already in multiple organ failure and sepsis causes more of that.

At this point, Faith is a DNR if her heart stops because we feel that is her way of telling us she is done. She is also DNR with blood pressure medication induced by the physicians.

When to say enough is enough: if her heart stops, if she bleeds more than we can give and/or she becomes septic. We just have to wait it out, which is the worst part of it all and why both mom and dad need to be here because things can change so quickly.

There is minimal hope, but still a small window. If fluid comes out of her ostomy we will be throwing a party! But, at this point there is none and she continues to have blood loss.

Hope that helps explain things a little better and I will let everyone know when we are 100% in full comfort care and have absolutely no hope left. Until then................we Keep Faith and pray, pray, pray.

DAY 60

I have the other children settled with family and friends and Monty and I are here until our time runs out. Faith looks so beautiful and peaceful. We have asked that they cut back some of her sedation so we can have more time with her awake. They are willing to do that and we will watch to make sure she is not uncomfortable. Obviously her comfort is our top priority so hopefully we can find a happy medium.

It is so frustrating to walk in her and see her looking well, only needed daily dialysis instead of continuous, not having blood pressure medication and having vent settings that are so close to being weaned......and yet it is almost the end? It is all stuff we just can't visibly see and makes it that much harder.

If nothing happens over the next week...meaning she doesn't declare that she is done by having another massive bleed or a major drop in her blood pressure or respitory status....they have said they will scope the stomach again and see if there is improvement. It is hard for the doctors because her stomach dying like that doesn't make any sense because it didn't look like that when they did the ERCP. Since the ERCP there hasn't been any major setbacks to cause it. They don't know why this has happened.

IF the stomach looks better...I still don't know what that will mean for Faith. If it does not look better, we are going to have to start thinking of stopping some support because we don't want the tissue to start disinegrating and cause a massive bleed, essentially bleeding out. It is ugly.

So, for now, we are in a holding pattern for the week unless she declares herself beforehand. All I know, is that I don't want her to suffer. All I know is that I want her to pass peacefully with mom and dad by her side. All I know is that I will love her FOREVER.

Friday, May 29, 2009

DAY 59

We have had to switch to "comfort care" for Faith today as there is nothing left the doctors can do to save her. They will continue to use dialysis each day for comfort (so she doesn't fill up with fluid) and she will continue to be on pain medication and sedatives. If a bleed were to start and her blood pressure drops, they are refusing to give any more vasopressures since they damage the gutt so much. It is just a viscous cycle that we have been chasing these past two months that doesn't want to stop.

I came home tonight to talk to my other children about what is going on. They did pretty well and just want Faith to be free of pain. We are all happy we were her chosen family and talked about how lucky we were to have had her for 5 years. I also had to ask family and friends to watch them since Monty and I will be bedside until the end.

I really wanted to be able to bring Faith home with hospice, but I guess that may not be a realistic plan. It is unrealistic because of the possible bleeding issues that we would not want other children to see. All they need to remember is their cute little sister that loved her family to no end.

For those of you that were very close with Faith that would like to visit....I can't give a time frame of how long she will be here....so I would come as soon as you can. We are at UC Davis Hospital. 7th floor in the PICU. Buzz in to say you would like to see Faith Duarte. We are in bed 10 which is at the very end.

Thank you to everyone for all your encouragement, love and prayers.

Thursday, May 28, 2009

DAY 58

Faith is off her Dopamine and they are trying intermittent dialysis.

The scope was done of her stomach and it was not good news. Half of her stomach is necrotic (dead). Dr. Haight isn't sure what are options are and is going to review things and he will be part of our meeting tomorrow.

So, basically, almost her entire digestive tract is not working well or at all. She does get nutrition through TPN, but it is not a great long term solution, but it may be our only one. They still do not want to put in a J-tube because all of her intestinal tissues are too fragile. I don't know if that is something that can improve or not. Guess that is a question for the team tomorrow.

I feel better and am going to head to bed pretty soon to ensure I can make it tomorrow. It's not like I even WANT to be there, but I know I need to be. Time to face the music.

Wednesday, May 27, 2009

DAY 56 and 57

I'm so sad. I was supposed to go switch with Monty at the hospital today to see my baby, but I feel really sick and couldn't go. I think that I just didn't get on top of a migraine headache soon enough. I hope it is that and I will feel fine in the morning after getting some rest and can go be with her. I miss her so much!!!

So, apparantly they have been able to wean some more on her vent settings as well as her blood pressure medication over the past few days. The antibiotics they have been using for her infections seem to be helping and keeping things at bay.

She has been more awake and fiesty again. She does not like her ET tube and is pushing hands away from her. That's my girl!

Tomorrow they are going to scope her G-Tube to see if they can find a reason why our first attempt at feeding her through it failed. Let's hope it produces an answer.

Friday we have a meeting to discuss with her physicians where we are at and what the overall plan is and how well they think they can get her. I don't like having these meetings, but this one isn't quite like going in "the room". It is still in that room, but more of a discussion instead of the gloom and doom talks we have had in the past. One of the topics will be at what point do we consider a trach. for her if she can't wean completely off her ventilator.

For me, the most important thing is to get her home. Even if being at home is not for a long period of time, and could possibly mean hospice, I just want her home. I want to be able to crawl in bed with my girl and hold her and try to enjoy as many moments as I can in the comfort of our home. Whatever it takes to make that happen, is what we will do! Not to mention, that over the years of doing foster care and taking in fragile children, I have seen the miracles of what can happen to children when they are out of a hospital setting and are with people that love them.

My son, Andrew, is one of those people. He had an extremely rough first year. There was one point of hospitalization that they were not sure he would make it. He was a very sick little boy. He went into a good foster home and shortly after into our home for permanency. Andrew had a broviac (a central line) for nutrition of TPN and lipids. He also had a G-tube. He was failure to thrive. Andrew is now a 7 year old active little boy with no central line and no G-tube. I am 100% confident it was the feeling of love and permanency that did it.

I am not unrealistic in that love will save everyone. We do not have full control and there are other plans for some of us to be brought home to God sooner than wanted. All of us are on loan. There is no forever. But, I can still have the hope that being in a good, loving home environment can make a huge difference because I've seen it with my own eyes.

So, whatever the long-term plan is for Faith....I don't know. I just know that for now, I want it to be that she can come home to us and give us the chance to see what happens. Keep Faith.

Monday, May 25, 2009

DAY 55

No changes for today due to the infection. Vent settings will remain the same, we will try to stay even on her dialysis and maintain blood pressure. She has not had a fever all night, but she has had a few drops in blood pressure. They did start her on two different antibiotics that will hopefully do the trick. All cultures will be repeated again, today, out of all her lines. Her Dialysis line has been in a long time and if that is the source, they will have to move it. That is the scary part since we cannot use Faith's upper body for lines. I think Dr. Raff said the next spot would be in her back and I can't even imagine that. I pray for that not to happen.

Otherwise, she is looking ok. I was very excited to see her moving both hands! She has not moved her left side for a few weeks now, so I was extremely happy to see that. She is slightly jaundice, ok with her fluid retention and alert for short periods of time.

As it has been from the beginning...we wait it out and see what Faith does and continue to do things on her time.

Sunday, May 24, 2009

DAY 54

More output of blood last night so Peds surg. came this morning to change out her wound-vac and see if they could see any source. When the wound-vac was off, they said that her bowels looked great! They believe the excess blood is coming from the granulation tissue that is forming under the wound-vac. Granulation tissue is new tissue growth...the growth we want to allow her belly to close. When you have a wound that is trying to heal, more blood goes to that area to allow healing. So that was very encouraging news and now we know not to be so concerned. They will have to watch her blood levels closely while this is happening and she may need platelets and blood often, but at least we know why. Phew.

Just found out she does have a strep infection in her blood. They are talking to pharmacy to figure out how to treat it. It is complicated because of her being on dialysis and her liver function. They have to find out the best medication for her to metabolize. Due to this infection, her heart rate is still a bit elevated and her temp is slightly as well.

Everything else remains the same and she is looking better today than yesterday. Mentally I feel a litte better, so will be able to rest better and stay more positive for my little girl that we have nicknamed "fighter faith".

Saturday, May 23, 2009

DAY 53

Ups and downs were the choice of the day. Can't have too long of a good streak, now can we???

Goods: Still were able to wean a bit more on the vent.

Bads: Bit of a fever, elevated heart rate, intolerance to G-tube feeds and another source of bleed. The bleed is not large enough to need Factor 7, but enough to need platelets and blood.

Overall, she just didn't look like she felt good today. A lot of old blood came out of her G-tube site after stopping feeds. I think it was between 150-200mls. So, that is enough to make you feel pretty lousy. The fresh blood is coming out of her wound-vac. Her crits dropped from 37 to 28 today...hence the need for blood.

At this point, not tolerating G-tube feeds is frustrating because that means more time on TPN, which is hard on your liver. They don't want to do a J-tube because they fear another perferation could happen in her bowels. I don't know how this will play out and am concerned.

The unit is extremely busy again which adds to my stress levels. Faith only gets one nurse, when you are supposed to have two when you are on Dialysis. Other children are more critical and it is becoming hard to find someone when you need them. I feel like I need to be here 24/7 and I have no sleeper chair in my room since one won't fit. That means I would be awake pretty much all the time. My mind, body and soul will go crazy. Maybe it already is???

So, yes, bummer after my post yesterday. Unfortunately, this is how it has been for all of these 53 days. Guilt is consuming me tonight, as it has multiple other nights, for even having this surgery done. I think I am just tired.

Hopefully tomorrow will be a better, more positive day. I've got to maintain good thoughts...I think I can, I think I can, I think I can..........

Friday, May 22, 2009

DAY 52

After being gone for a few days and newly walking in, Faith looks really good . Her color looks better as does her fluid retention. She has been awake some and although her eyes still have some jaundice color, they look brighter and more alert. She is continuing to wean on her vent settings and is now breathing over the vent which is very promising!

So, obviously, I am happy and it was such a relief because I was mentally having a hard time this morning on my way over here. I am just very concerned about her liver and still am...but this helps lift my spirits and helps me to try to stay positive. They did a very extensive blood panel this morning, so I will wait for those results before I get myself worked up again. And even then...it is Faith, so you just never know.....

Thursday, May 21, 2009

DAY 50 and 51

Faith successfully switched to the conventional vent!!!!!! Yahoo!!!!! She is doing so well that they are going to continue to lower settings on the vent today and see how it goes. I really think she can do it and we won't have to worry about a trach! Come on Faithy!!!

She is now off all her antibiotics except the antifungal that she may never be off of. They will keep a close watch on her temperature and white counts to be on top of any other infection should something start again. Hopefully it won't be an issue.

All of her vitals have been stable and she is getting close to being off her last blood pressure medication. They have almost weaned off Versed, as well, and are continuing with ativan and methadone for pain and anxiety. She does not seem to be in any pain, though, and when she is awake, has been able to listen to a story or two. Also, her brothers and sisters and friend, Drew, have made her pictures and they are right where she can look at them. Her favorite thing right now is for Monty and I to point each one out and talk about them and read what the kids wrote on them to her. She can focus on each one and then is worn out (there are 6 of them). Very cute!!!!

So it looks like Team: KEEP FAITH is starting to turn some corners. We are still being cautious and are still very nervous, but are more than happy with the way things look at this moment. Thank you everyone for your continuing support!!!!!!!!!!

Tuesday, May 19, 2009

DAY 49

Still continuing to have a nice, stable day. We were moved out of our room due to a toilet overflowing, but were lucky enough to get the best room in the ICU...bed 10. It is at the end and is the quietest, calmest and offers the most privacy. Faith has been in this room before, very sick, and made it through. I am hoping this is a sign of good fortune.

I just want to say that I am so HONORED by a certain individual checking in on our blog. I miss seeing you guys and I hope you are finding some sort of peace and healing. I know exactly what you meant by being scared to check in....unfortunately you know all too well how things can change. Thank you for being brave enough to do so. It means so much to me. I think of you daily and wish the best for you and your family. Love to you all.

Monday, May 18, 2009

DAY 48

Cautiously....today was a good day. We are off epinephrine now and have gone considerably down on her Dopamine (both medications for her low blood pressure). Vent settings have been lowered, as well. They may try again tomorrow to go to the conventional vent.

Ativan and methadone have been started intermittently to get Faith weaned off the Versed, since versed is harder on the liver. It is nice to see her awake more and she does not seem uncomfortable. At times she gets a worried frown, but that is a nice, normal reaction to her situation!

Her wound-vac was changed and the bowel still looks decent. They are using a different method with the wound-vac to try to get the site to start to close. They don't want to use the artificial skin again since they have ended up having to go back in so many times. So, we will see if she can heal on her own. The opening is so large that I asked how long it would take. From the size of it I thought it would take 10 years! But, they assured me that it will be much faster than that. More like a month. It's Faith...so we shall see.

Tonight I will continue to pray for healing and a miracle ending to this story of Keeping Faith.

Sunday, May 17, 2009

DAY 47

I just watched Marley and Me....and I am bawling. That movie shows how I feel. When he says that Marley is not like other dogs when they are discussing surgery or not....that is Faith! You just can't go off statistics or what is "normal". And, like the movie, no one in this world has made me feel more special...just like Marley did for them...Faith does for us. I just can't imagine my world without her. My mind is swirling with images of all the other parents I have watched lose their children and I ache for them. I ache for them and am also scared to be one of them. I shouldn't watch anymore sad movies!!!!

As for Miss Faith, she is doing ok. They have gone down on her Versed, which I think is a good thing. When she is not as sedated, her blood pressure is much better...I think because she is more aware which gives her more will to be here!!! Blood pressure numbers become much more stable when she is awake. So, they are going to wean the Versed and have added Ativan as a PRN.

We had a scare with her illeostomy. The hospital ICU doctors were concerned the tissue was dying. GI specialists came to look at it and said it was fine and that it was just old, dried blood on top of the tissue and was nothing to worry about. What a load off my mind! I wanted to do a flip! If I could have, I would!

This will be a hard week for me, mentally, because I have to be home for 5 nights in a row. Since I have Karen (my 16 year old who is total care) I need to be here because my aunt is on vacation. Monty does not do care for her as a precaution since she is female. My only other caregiver for her is my aunt and since she is out of town...it is me. I haven't been away from Faith that long and it will be a huge challenge. I can go down and see her while the kids are at school, but need to be home in the evenings. It will be extremely difficult, but what can I do? It is what it is. Right? So, if I am a bit more crazy this week...you will know why.

Saturday, May 16, 2009

DAY 46

They tried to switch Faith over to the conventional vent, but were unsuccessful. They discussed the possibility of her needing a tracheostomy since she has been vent dependent for so long. Everyone was so hopeful she would have been weaned off the vent by now, but unfortunately that has not happened. It is discouraging because her heart and lungs were the organs that had been doing so well. If a tracheostomy is needed, they need to clear it with cardiology. I am not sure why, but something with her anatomy and making sure it is even a possibility. I just pray she turns the corner and gets off without intervention.

Other than that, things remain the same today. Still having ups and downs with our blood pressure and fluid retention. They are doing more bloodwork to see where we are at with liver function and insulin production. So, we'll see. Tomorrow is a new day.

Friday, May 15, 2009

DAY 45

I cannot believe it has been 45 days. So many things have happened, so many emotions have been felt. And we still have a long, unknown road ahead of us. But, we have made it this far, so let's keep pushing on!

A lot of progress pulling off excess fluid and being able to maintain blood pressure while doing so. Infectious disease came in a few days ago and switched up some of her antibiotics and they seem to be working. She has not had a fever the past two days, her blood work has been improving and her color looks much better.

So, overall, Faith is doing pretty well and you can feel medical personnel having more hope for her. That helps a tremendous amount with our mental status, as well. And, boy, do we need it!!

Thursday, May 14, 2009

DAY 44

Steady progress being made today. Thank heavens!

Wednesday, May 13, 2009

DAY 43

This is not an easy journey. As was a concern on the last post with her blood pressure, fluid retention did become a huge issue. Because of it, her lungs filled up with fluid and they were having a hard time ventilating her. A doctor came in and let us know that if she got to the highest settings on the Oscillator, there would be nothing more they could do. Monty came down and we kept vigil for the night...again. Faith did reach the top settings and then....she turned it around...again. What is this child doing to all of us????

So, today they have been able to pull off some fluid and maintain a decent blood pressure. The wound-vac was changed and that looked good. Her blood gases have been good and they have been able to wean down on the Oscillator settings. I am Praying for it to continue this way.

I don't even know how to explain the series of emotions we go through. I will say that Monty is doing better than I am right now. The first few weeks, I was handling things better and now he is. Guess that is a good partnership, right? So, I came home tonight to catch my breath and sleep. It doesn't matter how much sleep I get, I am always tired. I assume it is depression. I am hoping I feel better by Friday morning when my shift begins. And I better NOT get called in beforehand!!! Faith, you behave!

Happy Birthday wishes are due to my son Dominic. He turned 12 today! He got to spend the day with my cousin Nicole and her husband, John, who are visiting from New York. That was his birthday wish, so I let him play hookie from school and enjoy the day with them. They had a blast having a nice lunch and then going for go-cart rides. Dominic was even sweet enough to share the day with his sister, Jessica. He said he wanted more brother/sister time with her. Aawww. He is the sweetest kid. After that, we went to Game Stop and he picked out his birthday present and he ate at one of his Favorite places: Mel's Diner that has the BEST milkshakes! Good day for a good kid. Happy Birthday Dominic! I love you!!!!!!!!

Tuesday, May 12, 2009

DAY 42

Faith's blood pressure has a mind of it's own and is therefore not allowing any progress to be made. They have gone up on both blood pressure medications and have had to go up on her oscillator settings. They have also given her a paralysis so she won't fight the oscillator. So, pretty much a depressing day. One of the doctors just feels Faith needs a few days of rest, which is probably true. She had a very hard week last week and she is always one that is slow to recover. Unfortunately, when she is given the rest we end up with other problems to contend with such as the fluid retention. Back to baby steps and taking one day at a time.

Monday, May 11, 2009

DAY 41

Today they are going to try to wean Faith off the oscillator. Faith's co2 levels have been stable, so we will hopefully get her back on the regular vent by tonight or tomorrow. All of her labs have been good and she has been very alert over the past couple of days. Liver levels are dropping, which is a good thing, so it is looking like the stent is helping! We still have a lot to work on, like maintaining blood pressure levels, extubating, closing her stomach, amputation, etc....but, lets hope we can maintain a slow, but steady pace. It is Faith, however, so I guess we always have to be prepared for a U-turn, but I am really praying she will allow us to breathe easier from this point on.

I had a very nice mother's day, although it was the first one without my mom. However, I got to spend it with most of my favorite people: my dad, my aunt and uncle, all my kids (minus Faith), my cousin Nicole and her hubby AND 2 month old baby...Taylor Judith Reilly....who is ADORABLE and looks just like her daddy, and my best friend and her family. We had a nice time.

It made me reflect, though, on how lucky I was to have my mom and how I really do feel like we end up exactly where we are supposed to go. My mom couldn't have children, so God found a way to get me to her. I KNOW we were meant to be together. Just like Lacey, Andrew and Faith were meant to be mine.

Adoption is such a special gift. Whether a birth family decides to unselfishly give their child to someone who can provide better for them or the state decides on behalf of a child that they deserve better....adoption is all about love in some form.

People have asked me how I can love a child that is not mine. All I can think is....how could you not????? And, guess what, they ARE mine! They were meant to be mine they just had to get to me through another way.

I am so grateful for adoption because of the fact that I got to be raised by the greatest woman ever. She was compassionate, loving, smart, funny, selfless and had a zest for life beyond compare. It is a tribute to her and the love she gave me that I have adopted as well. Adoption is one of God's greatest gifts. HAPPY MOTHERS DAY JUDY MOON!!!!!!!

Sunday, May 10, 2009

DAY 40

Nothing new to report. So, I want everyone to have a VERY HAPPY MOTHERS DAY!!!!

Saturday, May 9, 2009

Poem: Special Child

You weren't like other children
and God was well aware
You'd need a caring family
with love enough to share.

And so He sent you to us
and much to our surprise
you haven't been a challenge
but a blessing in disguise.

Your winning smiles and laughter
the pleasures you impart
far outweigh your special needs
and melt the coldest heart.

We're proud that we've been chosen
to help you learn and grow
the joy that you have brought us
is more than you can know.

A precious gift from Heaven
a treasure from above
a child whose taught us many things
but most of all - "Real Love".

(author: Sharon Harris)

DAY 39

Unfortunately our nice, stable evening did not last. I can't believe the ups and downs of this! We hardly get a step forward before she takes 5 back. Why????

Faith's lungs have some blood in them and are acting stiff. Her CO2 levels are extremely high. She got put back on the Oscillator, which is discouraging. She is on two blood pressure medications, one of which is very hard on her GI tract. Her fluid retention is alarming. She is positive 2 liters. Needless to say, I am very nervous.

However, she has pulled through this situation before. We shall see if she can do it again.

Friday, May 8, 2009

DAY 38

Faith has been doing well today. She did go down to OR to have her wound-vac changed. They did it as a precautionary measure because of surgery the other day. They flushed around the bowels and cleaned it all up before replacing the wound-vac. She tolerated it very well. Her bowels are fairly inflammed from all the times they have been moved around and traumatized, but her new stoma site for her ostomy looks good.

She seems pretty comfortable and numbers are good post OR visit. Hopefully it continues through the night! Write more tomorrow. Have a nice evening.

Thursday, May 7, 2009

DAY 37

Faith is running a fever of 103 and her heart rate is elevated to 195. I suppose it is expected for something like this to happen after such an extensive surgery. Disrupting the bowels creates a lot of bacteria to be released. In fact, they did end up taking out some of the bowel that was damaged and I forgot to post that part yesterday. But...still... I can't help but be an absolute nervous wreck. My anxiety is worse because I am at home. It is extremely difficult to be torn between two places and not know where the right place to be is. My kids at home need me and I have responsibilities to be taken care of here too. In a situation like this, I guess there is no good answer. I'm going to try to get some things done here (like pay bills) and I will call Monty and see what is happening afterwards and make a choice at that point. Maybe luck will be in our favor and they will have the fever under control by then. I'll let you know.

UPDATE: Fever is down to 100.4 and heart rate is down to 160. So, improvement from this morning. (sigh of relief). I think I gained 10 pounds just in one day at home eating for comfort and out of nervousness! To help you understand what it has been like in the PICU is that Nurses that have been working at the hospital for 20 years, do not remember a time when things were this crazy with so many REALLY sick kids. Since we have been there, 5 children have passed away. That is a lot when we have only been there 37 days. When we watch things like that happen around you, it increases your own stress and concern. When you are not with your sick child...it increases your stress and concern. However, I did have a nice day with the kids at home and am grateful for the time with them. They, too, are extremely strong...just like Faith. I have so much admiration for all of them. I am a very proud mommy.

Wednesday, May 6, 2009

DAY 36

Faith is back in the operating room. Her wound-vac has continued to leak and an order is present that smells like dead tissue. They are going in to explore. Prayers, prayers. This feels like a make it or break it situation. I'll update when I am able. PRAY!

UPDATE: Faith is out of surgery and I am happy to report they actually found something this time! There was a hole in her Ileum, which is the final section of the small intestine. They repaired it and then created an ostomy for Faith. The ostomy consists of pulling part of her intestine through the abdominal wall. An ostomy bag will be used over the site and her bowel can be eliminated through that. It is something she can have long term. She did well during during surgery and we will see how the night goes. Hopefully uneventful.

I pray this is the answer to all of these gut issues that we have been having that have created so many problems. Only time will tell.

Obviously, I didn't get to go home today. I may leave late tonight if she seems stable or wait until the morning. We will see how things go. Monty would stay here. I miss the other kids so much and need to see their sweet faces.

*** Drew - so many people have commented how much they LOVE your beautiful picture to Faith! Thank you so much for it. Faith will be very happy to see it when she is awake enough to look at it.

Tuesday, May 5, 2009

DAY 35

This place is starting to get to me. I am going home tomorrow and I think that is a good thing. Just so much stress and emotion is in here and it is hard not to take it on. I need a break and need to see the other kids to recharge.

Faith is starting to look like a marshmallow again. They haven't been able to pull off excess fluid without it affecting her blood pressure. She also had fluid that was pouring out of her wound-vac and they aren't sure if it is bile or old blood. They are assuming it is old blood. So, we are still dealing with this bleed coming from somewhere that keeps creating these set-backs. Honestly, it is hard to stay positive with these things happening and with the atmosphere in here. There were 4 attendings here today and when the fluid was coming out of the wound-vac and her blood pressure was dropping, it was hard to get anyone because they were all busy with other patients. I thought I was going to lose it. (I actually did a little)

I am hoping tomorrow is a better day for Faith. I hope they can start pulling off fluid so it doesn't compromise her lungs. I hope this bleed will go away forever. I am watching people lose their children and it is scaring the heck out of me. I don't know how these doctors and nurses do it. Something positive needs to happen. I pray that Faith can be that miracle that makes all this worth it.

Monday, May 4, 2009

DAY 33 and 34

Faith behaved herself on Sunday and now it is Monday. I am soooooo nervous!!!! The procedure is scheduled for 1:30. Today is my birthday and my only birthday wish is for this to be successful. That would be the best present I could ever get! I will post later when the procedure is complete. Keep Faith.

UPDATE: Faith did very well with the procedure. They were able to use the ERCP to put a stent in! My birthday wish came true. Now it is just a waiting game to see if the bile starts to drain and allows her liver to function more effectively. We will know this through blood tests.

Another thing they saw with the ultrasound is this pocket that comes out of her intestines that they do not know what it is. Of course Faith always has to throw some kind of curveball. She wouldn't be Faith if she didn't do that! They are wondering if this is where our source of bleeds have been coming from. They want Dr. Marr to look at it and see what he thinks should be done. She also has some dead intestinal wall tissue from having low blood pressure that they need to look at.

But, she looks good right now and is stable. Dr. Raff said this was going to be a marathon and I should be prepared. I told him that Faith has been preparing me for this for the last 5 years. I've got my running shoes on!!!

I want to give a big THANK YOU to my dad and aunt for allowing both Monty and I to be here today and tomorrow. We were both so nervous that neither one of us could stay away. They have been wonderful this whole time with my other kids (and my best friend, Nancy) and deserve some recognition. Thank you and I love you!!!

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.

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.