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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