Thursday, April 15, 2010
Wednesday, October 7, 2009
Temporary Change
Hi all.
For the time being, I am going to stop posting on our personal blog and just do it all on the givehopetobensonandclaire.blogspot.com. So for now, check there for updates. (For any of you who have checked both recently, you already know the updates are the same anyway). After things settle down a little bit, I may start updating this blog again....just one less thing for me to do right now!
Thanks!
For the time being, I am going to stop posting on our personal blog and just do it all on the givehopetobensonandclaire.blogspot.com. So for now, check there for updates. (For any of you who have checked both recently, you already know the updates are the same anyway). After things settle down a little bit, I may start updating this blog again....just one less thing for me to do right now!
Thanks!
Tuesday, October 6, 2009
Oct 6 p.m.
Definite signs of improvement today! It's been a quiet day, which is always good. They've still been able to pull a little bit of fluid off throughout the day, about 10-40 ml/hour. Still have a ways to go but at least she's starting to get somewhere.
Right now the breathing tube is doing all the work of breathing; so they decided to start to let her try to do some of the work on her own. They turned down the breathing tube just slightly so her lungs can start to do a little work. That means they also turned down the sedation. She has to be a little bit awake in order for her to do a little bit of breathing on her own. She's done well with that, still appears comfortable and doesn't seem to be in pain. She's been a champion today, as usual!
Oct 6 a.m.
We've had good night and morning here!
Things went really well last night with dialysis. Since midnight, they've been able to pull off 500 ml of fluid! That's great progress and the first day we've been able to really make some headway. She looks much better today and they have taken her off both the blood pressure "boosting" medicines! They really think moving that line from her groin to her neck made a great improvement for the circulation of her blood and of the medicine that was going through it. Her right leg is looking much better now that the line is out from it and the coloring in it has improved dramatically.
She is currently getting a very small amount of nutrition through her IV and they've talked about starting a little bit through her G-Tube within the next day or two when her stomach starts to wake up a bit. They've decided to keep the chest tube in till at least tomorrow. Yesterday it ended up draining 100 mls out from it! They'll evaluate that again tomorrow. The foli catheter for her urine will also come out today.
Good news all around for the princess! Still peacefully sleeping.
Things went really well last night with dialysis. Since midnight, they've been able to pull off 500 ml of fluid! That's great progress and the first day we've been able to really make some headway. She looks much better today and they have taken her off both the blood pressure "boosting" medicines! They really think moving that line from her groin to her neck made a great improvement for the circulation of her blood and of the medicine that was going through it. Her right leg is looking much better now that the line is out from it and the coloring in it has improved dramatically.
She is currently getting a very small amount of nutrition through her IV and they've talked about starting a little bit through her G-Tube within the next day or two when her stomach starts to wake up a bit. They've decided to keep the chest tube in till at least tomorrow. Yesterday it ended up draining 100 mls out from it! They'll evaluate that again tomorrow. The foli catheter for her urine will also come out today.
Good news all around for the princess! Still peacefully sleeping.
Monday, October 5, 2009
Oct 5 p.m.
Well, the good news is that there's not a lot to update on! We're happy when things are quiet around here. Her vitals have been great all night and they've been able to pull at least a little bit of fluid. 10-30 ml an hour is about what been able to get off. Slowly but surely it will come.
The only major thing that happened tonight was changing one of the lines that was in her right leg. It was causing her leg to swell and not get very much circulation, so they took that one out and have placed another one in on her neck. Not the most comfortable place to put a line, but you take what you can get on a little one. Everything has gone smoothly with that transition.
Benson went over to a friends house this afternoon. He was about ready to POP with ENERGY and needed to get some of that OUT of his system!! So he happily went! Jared will stay the night here again and I'll try to get some rest at home, as my cold doesn't seem to be getting much better.
They're really hoping things progress well tonight with a slow but steady fluid pull. Definitely one of the better days we've had.
It's interesting how even though we're with her all the time at the hospital, we still really miss her.
Oct 5th a.m.
First of all, thank you all for your thoughtful words of encouragement...and most of all for your prayers. We truly appreciate the strength we feel from your love and support.
Claire had an okay night last night. About 5:00 this morning the CRRT (continuous dialysis) clotted off in the machine and they had to stop dialysis and dump the blood that was in the tubing. A lot of blood for her to lose. They started it back up again this morning and primed the machine with blood. So far things have gone smoothly. Her blood pressure, heart rate, and temp have thankfully remained quite stable this morning. The CRRT is mostly what is making her cold, so she is still covered in warming blankets to keep her temp up. She is a lot more puffy today than she was yesterday. We're really Really REALLY hoping to be able to pull some fluid off today, but so far, her blood pressures have allowed us to only pull a little. If the CRRT continues to go well (and doesn't clot off again) they hope to pull more fluid off as the day goes on.
The chest tube has pretty much done it's duty and they plan on pulling that out tomorrow. The cardiologist came in and said from a heart stand point, everything looks great. It's all this other stuff that's getting in the way. Since things are good from a heart standpoint and they'll be pulling the chest tube tomorrow, they plan to move us down to the third floor tomorrow to the PICU.
Overall, this morning has gone smoothly. Really hoping for a day full of fluid removal. She currently has 2.3 Liters of extra fluid on her.
Benson is hanging in there. He's a little more emotional and just feels the instability of his life right now; but we did get him to go to preschool today. Many have offered to watch him while we're here day or night, but he just wants to be with us. And he's done great being here. He has his chair, drink, desk, and portable DVD player and he's pretty much good to go. A snack every 15 minutes or so helps out too (he eats a lot...and loves snacks and desserts!). Whatever makes him happy now is what we're going for. And he's very accustomed to the hospital setting and is so very good being here. His questions about Claire have started to slow down. He mostly just wants to know why she still sleeps, even when it's light outside.
We all have a minor cold trying to creep up on us. Our noses are a little stuffy/runny...sometimes it's hard to tell the difference! But overall, we're feeling good today and have hopeful, healing thoughts for the rest of the day!
Claire had an okay night last night. About 5:00 this morning the CRRT (continuous dialysis) clotted off in the machine and they had to stop dialysis and dump the blood that was in the tubing. A lot of blood for her to lose. They started it back up again this morning and primed the machine with blood. So far things have gone smoothly. Her blood pressure, heart rate, and temp have thankfully remained quite stable this morning. The CRRT is mostly what is making her cold, so she is still covered in warming blankets to keep her temp up. She is a lot more puffy today than she was yesterday. We're really Really REALLY hoping to be able to pull some fluid off today, but so far, her blood pressures have allowed us to only pull a little. If the CRRT continues to go well (and doesn't clot off again) they hope to pull more fluid off as the day goes on.
The chest tube has pretty much done it's duty and they plan on pulling that out tomorrow. The cardiologist came in and said from a heart stand point, everything looks great. It's all this other stuff that's getting in the way. Since things are good from a heart standpoint and they'll be pulling the chest tube tomorrow, they plan to move us down to the third floor tomorrow to the PICU.
Overall, this morning has gone smoothly. Really hoping for a day full of fluid removal. She currently has 2.3 Liters of extra fluid on her.
Benson is hanging in there. He's a little more emotional and just feels the instability of his life right now; but we did get him to go to preschool today. Many have offered to watch him while we're here day or night, but he just wants to be with us. And he's done great being here. He has his chair, drink, desk, and portable DVD player and he's pretty much good to go. A snack every 15 minutes or so helps out too (he eats a lot...and loves snacks and desserts!). Whatever makes him happy now is what we're going for. And he's very accustomed to the hospital setting and is so very good being here. His questions about Claire have started to slow down. He mostly just wants to know why she still sleeps, even when it's light outside.
We all have a minor cold trying to creep up on us. Our noses are a little stuffy/runny...sometimes it's hard to tell the difference! But overall, we're feeling good today and have hopeful, healing thoughts for the rest of the day!
All the meds she's on (sorry, I can't turn the picture)
Sunday, October 4, 2009
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