Lily is down to 120 flow. They are planning on taking her off of ECMO tomorrow!! Yipee!!
This is such good news. I will be staying down in Indy until at least Friday as long as everything is going ok.
Prayers work!!
Love to all,
Barb
Tuesday, September 2, 2008
Monday, September 1, 2008
Holding steady
Lily had a great night! She is holding steady at an ECMO flow of 300. They are going to keep her there at that level until tomorrow. She is still peeing, her blood pressure is holding and her heart rate is good. Let's hope that tomorrow is as good as today.
Love to all,
Barb
Love to all,
Barb
Sunday, August 31, 2008
ECMO flow down to 300!
More good news! Lily's ECMO flow has been lowered from 400 to 300 and she is tolerating it!! And she's still peeing!! Yipee!!
At first, when her flow was at 320, they had to raise it to 400 to get her kidney's to work. But now that her kidneys have recovered, she is able to go down on her flow. They will keep her at this level for the rest of the night to make sure everything is ok.
Her blood pressure and heart rate is also keeping up with the changes. Just one more indication that all your thoughts and prayers have been helping! Thank you so much.
Love to all,
Barb
At first, when her flow was at 320, they had to raise it to 400 to get her kidney's to work. But now that her kidneys have recovered, she is able to go down on her flow. They will keep her at this level for the rest of the night to make sure everything is ok.
Her blood pressure and heart rate is also keeping up with the changes. Just one more indication that all your thoughts and prayers have been helping! Thank you so much.
Love to all,
Barb
Happy Sunday!
Lily keeps amazing us all. Since she is peeing so well, and since her blood pressures are staying up, they have decided to start to wean her pressures down on the ECMO. They want to take her from 400 down to 300. This will be a very SLOW progression, but it is a step or three or four in the right direction.
I am home for a couple of days enjoying my own house, cooking in my kitchen, sleeping in my won bed and enjoying some time with my family. Also, Danny's Mom, Dad, and Grandmother are visiting from Nevada/California and it has been nice visiting with them.
Again, thank you for keeping Lily in your thoughts and prayers. She is a strong little baby and is making progress a little at a time with all of your help.
Love to all,
Barb
ps...hello to all you lurkers out there....post a comment and say hi!
I am home for a couple of days enjoying my own house, cooking in my kitchen, sleeping in my won bed and enjoying some time with my family. Also, Danny's Mom, Dad, and Grandmother are visiting from Nevada/California and it has been nice visiting with them.
Again, thank you for keeping Lily in your thoughts and prayers. She is a strong little baby and is making progress a little at a time with all of your help.
Love to all,
Barb
ps...hello to all you lurkers out there....post a comment and say hi!
Thursday, August 28, 2008
Grumpy Thursday
Ok...I'm a grump today. Grrrr.......
First, I was rudely awoken to the smell of cigarette smoke at 7am. Yuck! Then we had to get up early so they could "deep clean" our room. Then we find out that they upped Lily's anti-seizure medicine and didn't tell us!! Argh.....
Ok...I feel better. Dr. Rodefeld just came and talked to us about everything that is going on. He feels that Lily has turned the corner. Her urine output is doing well and her heart function is stronger than two days ago. The only thing that is a little concerning is that they raised her phenobarbital level because they picked up some "background" seizure activity. What this means, I have no idea. The neurologists have not spoken with us yet. However, Dr. Rodefeld is not concerned about this and is in total support of the change in medication level. So, since I trust him, I won't worry about it anymore.
Tomorrow morning they are going to change Lily's ECMO circuit. They are giving her a dose of steroids beforehand which will help with her transition to a new machine. However, this does raise her chance of infection. Lily may have a rough day and they are expecting her values to drop, and for her to become swollen. This may not happen, but they prepared us for it. The change will happen around 9am. It shouldn't be a big deal, but we are going to be here just in case.
This weekend, Dr. Rodefeld wants Lily to rest, and continue to work on getting the rest of the fluid off. Once this happens, they will start to more actively wean her from the ECMO. He is shooting for her being off by next weekend. But, as we all know, things can change quickly.
Another good thing is that he is optimistic that she is getting better and will be able to come off ECMO. I was really glad to hear that.
I am going to go out and take pictures later today and will be posting them later. I really haven't shown you where we are staying or what the hospital looks like on the inside. So, look for that on tomorrow's post.
That is all for today unless we hear something different. I am really trying to keep my composure and be patient, but sometimes it gets hard. :)
Love to all,
Barb
First, I was rudely awoken to the smell of cigarette smoke at 7am. Yuck! Then we had to get up early so they could "deep clean" our room. Then we find out that they upped Lily's anti-seizure medicine and didn't tell us!! Argh.....
Ok...I feel better. Dr. Rodefeld just came and talked to us about everything that is going on. He feels that Lily has turned the corner. Her urine output is doing well and her heart function is stronger than two days ago. The only thing that is a little concerning is that they raised her phenobarbital level because they picked up some "background" seizure activity. What this means, I have no idea. The neurologists have not spoken with us yet. However, Dr. Rodefeld is not concerned about this and is in total support of the change in medication level. So, since I trust him, I won't worry about it anymore.
Tomorrow morning they are going to change Lily's ECMO circuit. They are giving her a dose of steroids beforehand which will help with her transition to a new machine. However, this does raise her chance of infection. Lily may have a rough day and they are expecting her values to drop, and for her to become swollen. This may not happen, but they prepared us for it. The change will happen around 9am. It shouldn't be a big deal, but we are going to be here just in case.
This weekend, Dr. Rodefeld wants Lily to rest, and continue to work on getting the rest of the fluid off. Once this happens, they will start to more actively wean her from the ECMO. He is shooting for her being off by next weekend. But, as we all know, things can change quickly.
Another good thing is that he is optimistic that she is getting better and will be able to come off ECMO. I was really glad to hear that.
I am going to go out and take pictures later today and will be posting them later. I really haven't shown you where we are staying or what the hospital looks like on the inside. So, look for that on tomorrow's post.
That is all for today unless we hear something different. I am really trying to keep my composure and be patient, but sometimes it gets hard. :)
Love to all,
Barb
Wednesday, August 27, 2008
Poopie Wednesday!
Yay!! Lily pooped!! This is good because it means that enough blood is flowing to her intestines to make them work. Yipee! The nurse told me this morning that she almost overfilled her diaper. hee hee
Lily is also continuing to pee. Her goal today is to pee more out than what is put in. So, happy pee pee thoughts to Lily.
They also did an EEG and an echocardiogram on her this morning. I will update you all when I get the results. Grandma is hanging out at the Ronald McDonald house today because she has a sniffly nose. I'm not sure if it is my allergies or a cold and I'm not going to take a chance.
Thank you all for the birthday wishes and the gifts. Wendy, the chocolate cake was the best I've ever had. Yum!!
Love to all,
Barb
Lily is also continuing to pee. Her goal today is to pee more out than what is put in. So, happy pee pee thoughts to Lily.
They also did an EEG and an echocardiogram on her this morning. I will update you all when I get the results. Grandma is hanging out at the Ronald McDonald house today because she has a sniffly nose. I'm not sure if it is my allergies or a cold and I'm not going to take a chance.
Thank you all for the birthday wishes and the gifts. Wendy, the chocolate cake was the best I've ever had. Yum!!
Love to all,
Barb
Tuesday, August 26, 2008
It worked!
The pee-pee dance worked! Woo hoo!! Lily is peeing! Yipee!!
She looks so much better today. Yesterday she was so swollen. I'm glad to see her little nose again and they can actually open her eyes.
She is also breathing better. They have turned up her vent settings a bit and they are giving her breathing treatments. You can see her chest going up and down now. You really couldn't see that before.
Also, she is becoming more pulsatile. That means her heart is coming out of the stunned state and starting to beat more strongly on it's own. That is also good news.
The swelling should take about four days to go back down totally. Once her kidneys are working better they will start to wean her off of the ECMO.
It has been a great day so far.
Love to all,
Barb
ps..thanks for the birthday wishes! :)
She looks so much better today. Yesterday she was so swollen. I'm glad to see her little nose again and they can actually open her eyes.
She is also breathing better. They have turned up her vent settings a bit and they are giving her breathing treatments. You can see her chest going up and down now. You really couldn't see that before.
Also, she is becoming more pulsatile. That means her heart is coming out of the stunned state and starting to beat more strongly on it's own. That is also good news.
The swelling should take about four days to go back down totally. Once her kidneys are working better they will start to wean her off of the ECMO.
It has been a great day so far.
Love to all,
Barb
ps..thanks for the birthday wishes! :)
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