Showing posts with label CDH. Show all posts
Showing posts with label CDH. Show all posts
Monday, December 28, 2009
URGENT...
Head guy is changing ET tube and is afraid she won't survive it. Please stop what you're doing and pray for Averi right now! ♥
She's gonna need a new nickname!
Kevin saw an x-ray of Averi's lungs, and it is NOT walnut-sized. It is now HALF the size of the other lung! The doctors are very happy with this, and so are Kevin & Teresa! They have not changed the ETT yet, just a connector so far, and she is taking time to recover from even that. The worry in changing the ETT tube is that the lungs will collapse from being extubated, and then they'll have to start the reinflating thing all over again. They have ruled everything out except something clogging the ETT that the suctioning tube can't get.
28 days old...
SPECIFIC PRAYER REQUEST... Pray for the equipment... machines, hardware, software, tubing, wires, etc. that are being used on Averi. Just as progress is being made, it seems that another equipment failure happens.
Averi's sats are currently in the 80s. They think something is partially blocking the ET tube. They've been avoiding changing it, but it looks like they may have to!
Continue to pray for Teresa, who now has a cough and sore throat. It's hard for her to be away from Averi and not getting first hand reports. That goes a lot like the game of telephone.
An ET Tube is a tube that is inserted into the baby's trachea down to just above where the lungs bifurcate. (So it doesn't actually go into the lungs...) The top of it sticks out of the baby's mouth and is attached to the ventilator.
Here's a diagram...
After intubation they usually use an x-ray to be sure the tube is placed in the correct spot.
Averi's sats are currently in the 80s. They think something is partially blocking the ET tube. They've been avoiding changing it, but it looks like they may have to!
Continue to pray for Teresa, who now has a cough and sore throat. It's hard for her to be away from Averi and not getting first hand reports. That goes a lot like the game of telephone.
An ET Tube is a tube that is inserted into the baby's trachea down to just above where the lungs bifurcate. (So it doesn't actually go into the lungs...) The top of it sticks out of the baby's mouth and is attached to the ventilator.
Here's a diagram...
After intubation they usually use an x-ray to be sure the tube is placed in the correct spot.
Sunday, December 27, 2009
I'm not feeling well...
It is so hard not being able to go and see Averi. I was concerned that I was coming down with something, so I didnt go in her room yesterday. The discoloration in her belly is way better. The doc said she is doing better. They tend to be very conservative with comments like that. I am just thanking the Lord for my children.
Not being able to hold Averi or even hear her cry at all since she was born has been hard. We continue to take things one day at a time, though.
Not being able to hold Averi or even hear her cry at all since she was born has been hard. We continue to take things one day at a time, though.
27 days old...
Averi is still critical, but stable. It takes her a bit to recover from things like x-rays and dialysis circuit changes, but as days go by it seems like it is taking her less time to bounce back. They now think that one of the hematomas in her liver is stable, and the other has only grown minimally.
The kids got to see Averi briefly on Christmas Day, but they and Teresa are now showing signs of being sick, so they are all staying away. (Kevin is with Averi.)
...and GREAT news! The left lung has expanded! Kevin heard "good left lung" from one of the residents during rounds last night, and that there are equal upper chest breath sounds.
Pray for Teresa to be healthy, for the other kids to be healthy, and for Averi not to pick up any germs that might be in the air. Pray for continued lung expansion/growth, and increased stability.
The kids got to see Averi briefly on Christmas Day, but they and Teresa are now showing signs of being sick, so they are all staying away. (Kevin is with Averi.)
...and GREAT news! The left lung has expanded! Kevin heard "good left lung" from one of the residents during rounds last night, and that there are equal upper chest breath sounds.
Pray for Teresa to be healthy, for the other kids to be healthy, and for Averi not to pick up any germs that might be in the air. Pray for continued lung expansion/growth, and increased stability.
Saturday, December 26, 2009
26 days old...
(This is as of about 11:15am today) Averi has hematoma in her brain, not actively bleeding and not worse since yesterday. It is on the part of brain that controls motor, but she is still moving/responding. She is too critical to do MRI at this point, though. They have put her on antiseizure meds, and she is being weaned off of Milrinone (a med that was to help with blood flow to extremeties.) BP, HR, sats are good, blood gases have been good.
The Gaynors had a nice time yesterday spending time with their older kids.
Thanks for your prayers! Please continue.....
...and here's a picture of the ECMO machine being wheeled away:
The Gaynors had a nice time yesterday spending time with their older kids.
Thanks for your prayers! Please continue.....
...and here's a picture of the ECMO machine being wheeled away:
Thursday, December 24, 2009
More...
I don't want to be a pest, but I know how much you all care for this family.
Averi's carbon dioxide level is way too high, and her color isn't good. They've been making small changes here and there to figure out the right combo.
They are also giving her a blood transfusion.
Please pray for her little body to be able to exchange oxygen and carbon dioxide. Breathing... one of those simple things that most of us do without thinking, and probably take for granted at least most of the time.
Averi's carbon dioxide level is way too high, and her color isn't good. They've been making small changes here and there to figure out the right combo.
They are also giving her a blood transfusion.
Please pray for her little body to be able to exchange oxygen and carbon dioxide. Breathing... one of those simple things that most of us do without thinking, and probably take for granted at least most of the time.
Updates on Decannulation...
11:11am--They came out and told us she is not doing well and then came and said she was doing a little better.
11:18am--Surgeon just came out. She made it through, but she is just ok. Sats are a little low and BP is low.
12:40pm--They are trying to find the perfect position for the ET tube. They changed her head position and such. Things still seem rocky though, but maybe it is just her getting stable again.
I don't want anyone to panic, as it can take some time after getting off of ECMO to figure out what the baby is "liking," but by the same token, I don't want to diminish what is going on either. Coming off of ECMO was a huge step, but Averi is still in critical condition. As Teresa said, "PRAY, PRAY, PRAY!"
11:18am--Surgeon just came out. She made it through, but she is just ok. Sats are a little low and BP is low.
12:40pm--They are trying to find the perfect position for the ET tube. They changed her head position and such. Things still seem rocky though, but maybe it is just her getting stable again.
I don't want anyone to panic, as it can take some time after getting off of ECMO to figure out what the baby is "liking," but by the same token, I don't want to diminish what is going on either. Coming off of ECMO was a huge step, but Averi is still in critical condition. As Teresa said, "PRAY, PRAY, PRAY!"
A setback...
OK, prayer warriors... one minute after I posted that last update, Teresa said that Averi's blood pressure was way low and that her pulmonary pressures are high. I don't know why the sudden change. We know she doesn't like to be messed with...
Bye bye ECMO!
They are bridging right now! Averi did well overnight. Teresa says, "Michelle [her nurse] was 'freaking-out-excited' because her blood gases were coming back soooooo good last night." She was down to 150 and then down to 120 with NO oxygen from the ECMO. The only oxygen Averi was getting was from the ventilator! It's looking like they will proceed with the REMOVAL OF THE ECMO a little after 10!
This is Averi's 3rd surgery. It usually doesn't take long. Once she is removed from the ECMO, she is certainly not out of the woods. She is still critical. But removing ECMO and all that heparin is a HUGE HUGE thing. Praise God! (And pray for Averi while she's in surgery! -- Though I'm sure I didn't need to say that!)
This is Averi's 3rd surgery. It usually doesn't take long. Once she is removed from the ECMO, she is certainly not out of the woods. She is still critical. But removing ECMO and all that heparin is a HUGE HUGE thing. Praise God! (And pray for Averi while she's in surgery! -- Though I'm sure I didn't need to say that!)
Wednesday, December 23, 2009
The "p" word...
When our family went through this CDH battle, we would (and actually still do) talk about the "p" word. We got to the point where we didn't really want to say the word "plan" out loud anymore, because most assuredly it would be changed umpteen times between the time the plan was uttered and when the final action was executed. We also ended any timeframe with the "-ish" ending. (i.e. today-ish, soon-ish, noon-ish, etc.) The Gaynors are experiencing a bit of that now.
So since my last post, here is what was "decided" upon:
• Averi would be decannulated (with no bridging) if she tolerated the ECMO setting being at 150 tonight. She would remain on dialysis, which entails putting a dialysis cannula in place of the ECMO cannula in her neck. This would require a smaller amount of anticoagulants than the ECMO circuit did, because it is a lower amount of blood used. Additionally, they can switch to a different drug that would anticoagulate the machine... not Averi.
• Nurse said they would bridge tomorrow or the next day. The head doc will be in tomorrow and will make the call, so maybe the decannulation won't happen at 10am.
• Nurse definitely thinks the decannulation will happen at 10am if Averi does well overnight because the surgeon had already talked to the head doctor.
So she could quite possibly maybe be decannulated at 10am tomorrow-ish. Stay tuned on that. (But pray at 10am PST just in case she's in surgery!)
On a fun note, Averi has a couple of new nicknames! Her left lung is the size of a walnut, so she has been called "walnut" on more than one occasion. Hey, if people can call their kids "peanut," I think "walnut" is perfectly acceptable! A couple of the nurses around there have "adopted" Averi and have taken to calling her "Snookums." Averi even got her first little heart barrette the other day. :)
So since my last post, here is what was "decided" upon:
• Averi would be decannulated (with no bridging) if she tolerated the ECMO setting being at 150 tonight. She would remain on dialysis, which entails putting a dialysis cannula in place of the ECMO cannula in her neck. This would require a smaller amount of anticoagulants than the ECMO circuit did, because it is a lower amount of blood used. Additionally, they can switch to a different drug that would anticoagulate the machine... not Averi.
• Nurse said they would bridge tomorrow or the next day. The head doc will be in tomorrow and will make the call, so maybe the decannulation won't happen at 10am.
• Nurse definitely thinks the decannulation will happen at 10am if Averi does well overnight because the surgeon had already talked to the head doctor.
So she could quite possibly maybe be decannulated at 10am tomorrow-ish. Stay tuned on that. (But pray at 10am PST just in case she's in surgery!)
On a fun note, Averi has a couple of new nicknames! Her left lung is the size of a walnut, so she has been called "walnut" on more than one occasion. Hey, if people can call their kids "peanut," I think "walnut" is perfectly acceptable! A couple of the nurses around there have "adopted" Averi and have taken to calling her "Snookums." Averi even got her first little heart barrette the other day. :)
Scratch that...
They just did another x-ray, and I guess the results of the x-ray were good, so they're saying that if she tolerates 150, they're decannulating her tomorrow! No bridging/cross-clamp.
Teresa said that the x-ray showed that the right lung has opened up more and is clearer than it has been. She said the left lung has had no activity and that she couldn't even see it. Pray for that lung to expand! Everybody go blow up a balloon for Averi! ♥
Teresa said that the x-ray showed that the right lung has opened up more and is clearer than it has been. She said the left lung has had no activity and that she couldn't even see it. Pray for that lung to expand! Everybody go blow up a balloon for Averi! ♥
More news!
I'm sooo thrilled to report this latest news!! Averi did great with the circuit change, so they have weaned her down to 200 on the ECMO. They are hoping to wean do to 150 and bridge (cross-clamp) tomorrow to see if she's ready to be off of ECMO!
23 days old (DAY 12 on ECMO)
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.
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.
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!
Sunday, December 20, 2009
20 days old (DAY 9 on ECMO)
I don't have much of an update. They changed the ECMO circuit today, and they have been having some very important talks with doctors as to next steps. Things are very, very tenuous, and your prayers are needed more than ever.
A "circuit change" is when they replace all the tubing and primer blood used in the ECMO. They remove baby from ECMO for like a minute and reconnect her with the new stuff. Sometimes it can cause a baby to get a little worse before she gets better, since they often have an inflamatory response to the new tubing and equipment that her blood is coming in contact with. In Averi's case, her oxygen levels were better since the circuit change. Usually a circuit change is necessary every 7-10 days.
One additional tidbit is that her lungs are looking better. She is having blood pressure and heart issues. (Something to do with the right side of the heart, but I don't know any more than that!) Additionally, the liver continues to be a concern.
A "circuit change" is when they replace all the tubing and primer blood used in the ECMO. They remove baby from ECMO for like a minute and reconnect her with the new stuff. Sometimes it can cause a baby to get a little worse before she gets better, since they often have an inflamatory response to the new tubing and equipment that her blood is coming in contact with. In Averi's case, her oxygen levels were better since the circuit change. Usually a circuit change is necessary every 7-10 days.
One additional tidbit is that her lungs are looking better. She is having blood pressure and heart issues. (Something to do with the right side of the heart, but I don't know any more than that!) Additionally, the liver continues to be a concern.
Saturday, December 19, 2009
Pictures with Mommy & Daddy
Kevin with Averi when she was 2 days old...
Teresa holding her little one's hand. It is so hard on (especially) a Mommy's heart, knowing that there is absolutely nothing she can do but hope, pray, and hold a hand...
♥ ♥ ♥ 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!
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