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
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5 comments:
hang in there Barb...
I think you have every right to be crabby once in a while, so enjoy it ; )
How are you feeling? Lexa woke up with a cold Tuesday, me today. Hope we didn't leave any cooties behind.
Have you heard about littlehearts.com? (I think that's what it's called) Lots of inspirational stories of ecmo babies out there. Hopefully Lily's story will be added to it someday.
Some bad news, but more good and hopeful news.
I had a dream about Lilly--she was about 5 and laughing, playing with a stuffed bear.
I think it's going to come true. :D
No kidding you are allowed to be grumpy... even saints struggle in their lifetimes so who are you to expect otherwise of yourself? ;)
All thoughts and good wishes are flowing your way...
here's a link to another good story:
http://rileychildrenshospital.com/parents-and-patients/programs-and-services/ecmo-treatment.jsp
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