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.
Showing posts with label dialysis. Show all posts
Showing posts with label dialysis. Show all posts
Sunday, December 27, 2009
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. :)
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!
Friday, December 18, 2009
Friday morning (18 days old-DAY 7 on ECMO)
When Teresa and Kevin got to the hospital this morning, Averi's color was very bad. She is also continually awake, despite the fact that they are giving her sedatives that should be helping her rest. The doctor is now saying that things aren't going well and that he wants to consult with some other doctors. The main issue right now is the hematoma in the liver. It is still bleeding, but there is nothing they can do about that while she is on ECMO because of the heparin.
Please stop right now and pray for these doctors as they meet... that the Lord would give them wisdom and understanding. That He would cause them to seek advice outside of the hospital if there are experts out there that can help with this situation.
And lastly, pray for Teresa and Kevin. Pray that they would be given strength beyond measure and peace that passes all understanding.
Please stop right now and pray for these doctors as they meet... that the Lord would give them wisdom and understanding. That He would cause them to seek advice outside of the hospital if there are experts out there that can help with this situation.
And lastly, pray for Teresa and Kevin. Pray that they would be given strength beyond measure and peace that passes all understanding.
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