Backing up... the surfacant wasn't given until today... They had to change the circuit again due to some issues they were having. Typically that happens every 7-10 days, but Averi is on day 12 of ECMO and has had two circuit changes.
Due to the circuit change, the ECMO weaning has been temporarily suspended to let her recover. Babies often have an inflamatory response to the new tubing and equipment that their blood is coming in contact with, so this is just a precautionary measure.
The dialysis machine has been switched. Praise God for Michelle, their favorite night nurse, who stood up for Averi and said that she just had no more fluid to give! Because of that, no fluid is currently being removed.
Showing posts with label fluid retention. Show all posts
Showing posts with label fluid retention. Show all posts
Wednesday, December 23, 2009
Tuesday, December 22, 2009
22 Days old (DAY 11 on ECMO)
Here's an update... I may need to clarify some of this later... as I was talking to Teresa, Kevin called her back in because there was an urgent issue he needed to discuss. I have no idea what that is, but you can be praying...
They were about to inject surfacant into her lungs. Pulmonary surfactant is an oily substance (a mixture of lipoprotein molecules) produced by the cells lining the alveoli. All parts of the respiratory system are coated with a thin watery layer. The surfactant coats this layer and reduces the surface tension within the alveoli. This helps keep the alveoli open for gas exchange.
The attending physician in the NICU would like to wean the ECMO tonight in hopes of doing the bridging tomorrow. They would like to see her come off of ECMO this side of 14 days. The doctors in the PICU differ with this decision and would like her to rest more before doing the bridging. Teresa & Kevin's prayer is that the two groups will come together and reach some consensus.
They will be doing an ECHO tomorrow to check on her pulmonary hypertension levels.
Averi's blood pressure is better today. The issue with the right side of the heart that I mentioned the other day is that the hypertension was stressing that side of the heart too much, and they didn't feel that her heart would be strong enough to handle being off of ECMO. That problem seems to have resolved.
Teresa has some concern about the dialysis. The doctors are saying she is still +4 liters from where she should be, (I start envisioning 2 2-liter bottles of soda...) and the nurses don't see how that's possible. We just don't want them to take too much fluid off!
As far as I know, Averi is stable, her lungs are continually expanding, and she is still on the high frequency ventilator with iNO. I didn't get a chance to ask her how the liver is doing. As Teresa said, our hope is NOT in the doctors, the hospital, the medications, or the machines. Our hope and faith is in the Lord, who uses all of the above (or not, if he chooses that!) to accomplish HIS purposes.
As always please pray for the doctors to have wisdom in the decisions being made for Averi... that everything will be done at precisely the right time and in the right order. Pray for Averi's little body to be strong and feisty as she fights! Pray for the entire family. As we head into Christmas, and the family is separated by a few hours, I am sure that their other children are having a really difficult time. Thanks, everyone! I'll let you know if I hear anything else!
They were about to inject surfacant into her lungs. Pulmonary surfactant is an oily substance (a mixture of lipoprotein molecules) produced by the cells lining the alveoli. All parts of the respiratory system are coated with a thin watery layer. The surfactant coats this layer and reduces the surface tension within the alveoli. This helps keep the alveoli open for gas exchange.
The attending physician in the NICU would like to wean the ECMO tonight in hopes of doing the bridging tomorrow. They would like to see her come off of ECMO this side of 14 days. The doctors in the PICU differ with this decision and would like her to rest more before doing the bridging. Teresa & Kevin's prayer is that the two groups will come together and reach some consensus.
They will be doing an ECHO tomorrow to check on her pulmonary hypertension levels.
Averi's blood pressure is better today. The issue with the right side of the heart that I mentioned the other day is that the hypertension was stressing that side of the heart too much, and they didn't feel that her heart would be strong enough to handle being off of ECMO. That problem seems to have resolved.
Teresa has some concern about the dialysis. The doctors are saying she is still +4 liters from where she should be, (I start envisioning 2 2-liter bottles of soda...) and the nurses don't see how that's possible. We just don't want them to take too much fluid off!
As far as I know, Averi is stable, her lungs are continually expanding, and she is still on the high frequency ventilator with iNO. I didn't get a chance to ask her how the liver is doing. As Teresa said, our hope is NOT in the doctors, the hospital, the medications, or the machines. Our hope and faith is in the Lord, who uses all of the above (or not, if he chooses that!) to accomplish HIS purposes.
As always please pray for the doctors to have wisdom in the decisions being made for Averi... that everything will be done at precisely the right time and in the right order. Pray for Averi's little body to be strong and feisty as she fights! Pray for the entire family. As we head into Christmas, and the family is separated by a few hours, I am sure that their other children are having a really difficult time. Thanks, everyone! I'll let you know if I hear anything else!
Monday, December 21, 2009
Three weeks old... (DAY 10 on ECMO)
I thought I typed some of this out earlier, but I guess I didn't! So this will be a longer post!
Teresa reported earlier today that Averi was doing better today--a lot better--with the change of the ECMO machine. The cardiologist came in and also said she is doing better. The attitude of everyone is more upbeat, but they continue to take things one day at a time. Her right lung is more open. The ventilator settings have been increased. They are not taking her off of ECMO today as previously discussed in the "72 hour plan."
Averi has continued to improve today on the new ECMO circuit. Her lungs have expanded more, the ECMO pump has now been weaned to 250, and the ventilator has been turned up. They are now talking about ECMO bridging (some hospitals use the term cross clamping.) in the next few days. They clamp the tubes so that the machine stops doing the work for her, leaving Averi and the ventilator for a few minutes. They see how she does, and usually clamp and unclamp several times. The blood gasses will tell them how she is doing with just the ventilator. Being at 250 is really good! Again, my only frame of reference is our daughter, who went from 270-140 on the day they did her cross-clamp test. If Averi does well with this, then they will take her off of ECMO soon after that.
Another thing is that she is now finally fluid negative! This will help give her lungs more room to expand.
In all of this, they are learning (again) that Averi does not like change, and that making minute changes and taking longer to do something is much better than rushing her and eventually starting all over again.
Pray for a quiet, peaceful night for Averi. Pray for their other kids... Alex, Kylie, and Ian. This has been really rough on them, as you can imagine!
Teresa reported earlier today that Averi was doing better today--a lot better--with the change of the ECMO machine. The cardiologist came in and also said she is doing better. The attitude of everyone is more upbeat, but they continue to take things one day at a time. Her right lung is more open. The ventilator settings have been increased. They are not taking her off of ECMO today as previously discussed in the "72 hour plan."
Averi has continued to improve today on the new ECMO circuit. Her lungs have expanded more, the ECMO pump has now been weaned to 250, and the ventilator has been turned up. They are now talking about ECMO bridging (some hospitals use the term cross clamping.) in the next few days. They clamp the tubes so that the machine stops doing the work for her, leaving Averi and the ventilator for a few minutes. They see how she does, and usually clamp and unclamp several times. The blood gasses will tell them how she is doing with just the ventilator. Being at 250 is really good! Again, my only frame of reference is our daughter, who went from 270-140 on the day they did her cross-clamp test. If Averi does well with this, then they will take her off of ECMO soon after that.
Another thing is that she is now finally fluid negative! This will help give her lungs more room to expand.
In all of this, they are learning (again) that Averi does not like change, and that making minute changes and taking longer to do something is much better than rushing her and eventually starting all over again.
Pray for a quiet, peaceful night for Averi. Pray for their other kids... Alex, Kylie, and Ian. This has been really rough on them, as you can imagine!
Saturday, December 19, 2009
♥ ♥ ♥ Update ♥ ♥ ♥ (19 days old, day 8 of ECMO)
Averi seemed to stabilize yesterday. They are still trying to get some fluid off, but are only able to get 10mL/hr using the dialysis. She seems to be tolerating that more than she was the 20mL/hr setting. Teresa doesn't think she looks that swollen compared to some other ECMO babies she's seen. Most of the swelling is from her liver.
They did an x-ray this morning, and her right lung has opened up a lot more. Praise God!
Another concern that Teresa has had is Averi's eyes. She said that they were open pretty much all day yesterday, but not blinking or anything. They asked them to tape them shut, and they put this gel patch on her last night, and her eyes are almost all the way closed today. So that's better, too.
I asked Teresa for very specific prayer requests. I really feel that we need to pray very specifically! This is what she said:
• Stable blood pressure as they remove fluid. We know from previous experience that Averi doesn't tolerate things when her fluid levels get too low too fast. Pray for wisdom for the doctors and nurses as they make decisions concerning fluid.
• Expansion of lungs. The right lung has expanded quite a bit, but so far the left lung has not. Pray for that little lung to be full of air.
Teresa & Kevin have decided to take things one day at a time and celebrate each day that they have with their daughter. Keep them and their other kids in your prayers, too. I know that they appreciate each and every one of you!
They did an x-ray this morning, and her right lung has opened up a lot more. Praise God!
Another concern that Teresa has had is Averi's eyes. She said that they were open pretty much all day yesterday, but not blinking or anything. They asked them to tape them shut, and they put this gel patch on her last night, and her eyes are almost all the way closed today. So that's better, too.
I asked Teresa for very specific prayer requests. I really feel that we need to pray very specifically! This is what she said:
• Stable blood pressure as they remove fluid. We know from previous experience that Averi doesn't tolerate things when her fluid levels get too low too fast. Pray for wisdom for the doctors and nurses as they make decisions concerning fluid.
• Expansion of lungs. The right lung has expanded quite a bit, but so far the left lung has not. Pray for that little lung to be full of air.
Teresa & Kevin have decided to take things one day at a time and celebrate each day that they have with their daughter. Keep them and their other kids in your prayers, too. I know that they appreciate each and every one of you!
Friday, December 18, 2009
The new plan...
The current plan is to put Averi back on the HFOV (it's already been done) in hopes of getting her off of ECMO within 72 hours. She is still on diureic drugs and a low setting of dialysis to work on getting the excess fluid out. Once they get to the point where she is off of ECMO, they will not put her back on. It will be up to Averi, the ventilator, and most importantly God. Thank you for your continued prayers!
Thursday, December 17, 2009
Teresa just texted. The roller coaster continues... Averi's blood pressure has dropped again, and the pulses in her extremities were weak, so she is back on the dopamine and they are pushing fluids. The doctors told them that this might happen immediately following the connection of the dialysis, but of course Averi didn't read the play book, and she decided that a few hours later was better!
Just before her BP dropped, they had reached the "fluid negative" goal. So the dialysis was working, but for some reason Averi isn't tolerating it.
Now they are looking at the ECMO machine itself. (Both of her nurses, the doctor, and the ECMO perfusionist have been in the room trying to see if the ECMO machine itself is causing the flow problem.)
Teresa is concerned and would ask people to pray that Averi is not in pain. She said that Averi has had an eye open this entire time. Also, WISDOM for the doctors and all involved in making decisions. Thanks, everyone!
Just before her BP dropped, they had reached the "fluid negative" goal. So the dialysis was working, but for some reason Averi isn't tolerating it.
Now they are looking at the ECMO machine itself. (Both of her nurses, the doctor, and the ECMO perfusionist have been in the room trying to see if the ECMO machine itself is causing the flow problem.)
Teresa is concerned and would ask people to pray that Averi is not in pain. She said that Averi has had an eye open this entire time. Also, WISDOM for the doctors and all involved in making decisions. Thanks, everyone!
Dialysis is in place...
This update is a couple of hours old, but I thought I'd go ahead and report it anyway. (Sorry! I was away from the computer)
They have the dialysis set to remove 20mL fluid/hr. When I last heard from Teresa, it was working well, and they even took her off of lasix (the diuretic). The doctor assured them that Averi's kidneys are FINE, and that she would only need this for a couple of days to take the stress off of her kidneys. All of the excess fluid is making it difficult for the lungs to expand. The hope is that once all that puffiness is gone, the lungs will have more room!
What I found interesting, as I was trying to figure out how this contraption worked, is that it is actually (somehow) removing urine from her blood. I was amazed to learn that. I guess it makes sense, since that is the job of the kidneys!
Keep praying!
I will leave you with pictures of her new technology...
This is the new dialysis machine that they basically add on to the ECMO circuit.
And THIS is Averi's "stuff." Believe it or not, all of that equipment is for her! The lightened area in the middle is Averi's bed.
They have the dialysis set to remove 20mL fluid/hr. When I last heard from Teresa, it was working well, and they even took her off of lasix (the diuretic). The doctor assured them that Averi's kidneys are FINE, and that she would only need this for a couple of days to take the stress off of her kidneys. All of the excess fluid is making it difficult for the lungs to expand. The hope is that once all that puffiness is gone, the lungs will have more room!
What I found interesting, as I was trying to figure out how this contraption worked, is that it is actually (somehow) removing urine from her blood. I was amazed to learn that. I guess it makes sense, since that is the job of the kidneys!
Keep praying!
I will leave you with pictures of her new technology...
This is the new dialysis machine that they basically add on to the ECMO circuit.
And THIS is Averi's "stuff." Believe it or not, all of that equipment is for her! The lightened area in the middle is Averi's bed.
Wednesday, December 16, 2009
Wednesday night (16 days old-Day 5 on ECMO)
Averi started peeing again, but she's not fluid negative yet. The doctor said the plan is to adjust the ventilator and see what her lungs do. They also plan to do an ultrasound on Friday to check her pulmonary hypertension.
Averi did not have a quiet night...After all the progress she made yesterday, she stopped peeing. She is now on a steady drip of lasix instead of separate doses. Her blood pressure fell again, so she is back on dopamine. The good news is that she is back down to 70% oxygen! She was at 100% yesterday. Keep praying for her to pee and that we get to that "fluid negative" place. Her belly has a lot of fluid in it within the tissues, and they are keeping a close eye on it.
Even being as sedated as she is, Averi still has to keep an eye on everything that's going on!
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