Good morning! This is Bethany again with an update on Miss Avery.
She had a much better night. She has started peeing a lot more and for that we are all SO very thankful!!! The plan for today is to possibly due a proceedure on Avery's SVC (Carissa has mentioned this in an earlier post and truthfully, I would not know where to begin when it comes to explaining it.) using a catheter. The cath. proceedure carries it's own set of risks and I know Shane and Carissa are worried about those. But, if it saves Avery Mae, then it must be done.
I know Shane and Carissa appreciate your prayers and support so very much. Please be praying for Avery today. She is truly the "Energizer Baby." I can't believe how much she has overcome. Prayers have been answered over and over again.
7.12.2009
7.11.2009
Avery is Very Sick Today
I just talked with Dr. Garcia and she is very worried about Avery right now. If she does not pee more, she is not going to survive. Dr. Garcia is almost to the limit of meds she can give and Avery has got to pee to make it through the night. If possible, they will do the catheter tomorrow. Things just don't look good right now.
Carissa
Carissa
7.09.2009
Gathering Info
I first want to say thanks to Bethany for updating for us. Beth is a dear friend who so sweetly volunteers to pass information when Shane and I are unable to do so. She has been down the CDH road and has been an absolute blessing to both Shane and me.
Both tests, the echo and renal(kidney) ultrasound, were done today. The kidneys appear to have some calcium deposits but nothing to be too worried about. They are understandably "diseased" due to all of the things Avery has been through, but that is to be expected. The damage at this point does not seem to be permanent. The kidneys are functioning correctly at this point. The echo shows that the heart function is good. The valves are working correctly and blood is getting to Ave's lungs. All of that is positive information. So, we are still left with the questions about why Avery is puffy. When Avery was born she had two superior vena cavas. Normally, we only have one. This is a common variation of veins and normally not a huge deal. Now during the echo one of the SVC's could not be seen. This could be for numerous reasons but long story short, this may be contributing to Avery's swelling. The plan for next week is to put a catheter in (not too sure about how all that works) and possibly clear up any obstruction in the SVC that may be contributing to the swelling.
So that is where we are at with everything. It is all extremely overwhelming and please forgive me if I have not called back or responded to emails. I love all of you and we feel all of your love but I am just low on energy right now. Shane and I are only able to get through all of this because of the support of ALL OF YOU! I (or Beth) will pass along any changes. We love our precious girl and are holding her hands as she fights for her life. Thank you for holding our hands as we support her.
Carissa
Both tests, the echo and renal(kidney) ultrasound, were done today. The kidneys appear to have some calcium deposits but nothing to be too worried about. They are understandably "diseased" due to all of the things Avery has been through, but that is to be expected. The damage at this point does not seem to be permanent. The kidneys are functioning correctly at this point. The echo shows that the heart function is good. The valves are working correctly and blood is getting to Ave's lungs. All of that is positive information. So, we are still left with the questions about why Avery is puffy. When Avery was born she had two superior vena cavas. Normally, we only have one. This is a common variation of veins and normally not a huge deal. Now during the echo one of the SVC's could not be seen. This could be for numerous reasons but long story short, this may be contributing to Avery's swelling. The plan for next week is to put a catheter in (not too sure about how all that works) and possibly clear up any obstruction in the SVC that may be contributing to the swelling.
So that is where we are at with everything. It is all extremely overwhelming and please forgive me if I have not called back or responded to emails. I love all of you and we feel all of your love but I am just low on energy right now. Shane and I are only able to get through all of this because of the support of ALL OF YOU! I (or Beth) will pass along any changes. We love our precious girl and are holding her hands as she fights for her life. Thank you for holding our hands as we support her.
Carissa
Avery Update, Prayers and a Special Request
This is Bethany and I have (temporarily) taken over the Keirsey's blog.
First of all, I am sure you are all wondering about little Avery Mae. The update I got this morning is that they are planning to do 2 ultrasounds today to check Avery's kidney function and how much blood flow she is getting to her kidneys. She will also have an echocardiogram today to check on her heart and how it is holding up. Shane said she is still very puffy. They are obviously beside themselves. Avery has come SO far and overcome SO much and this is just a very discouraging time. But, if we have learned anything through this journey with Avery, it is that she is a fighter!!! So, while Shane and Carissa are very concerned, they are not giving up hope.
We are asking for your prayers today for Avery's continued healing. Also, please pray for Shane and Carissa. They are tired, overwhelmed and scared to death.
I (or one of them) will update if there is any new news later today.
----------------------------------------------------------------------------
While I'm here...
Shane and Carissa are not the type to ask for help, but obviously there comes a time when it's needed.
They have been away from home since early May. They have commuted back and forth...a seven hour round trip. Shane has switched jobs. They are trying to sell their house. Carissa isn't working so that she can be with Avery.
So, I am calling your attention to the "donate button" on the upper side bar of their blog. Any donation would be greatly appreciated and it doesn't have to be much. I realize that in these tough economic times people don't have a lot to give, but even the smallest donation would be appreciated.
Thank you for caring about the Keirseys. I know they appreciate it more than they could ever convey.
First of all, I am sure you are all wondering about little Avery Mae. The update I got this morning is that they are planning to do 2 ultrasounds today to check Avery's kidney function and how much blood flow she is getting to her kidneys. She will also have an echocardiogram today to check on her heart and how it is holding up. Shane said she is still very puffy. They are obviously beside themselves. Avery has come SO far and overcome SO much and this is just a very discouraging time. But, if we have learned anything through this journey with Avery, it is that she is a fighter!!! So, while Shane and Carissa are very concerned, they are not giving up hope.
We are asking for your prayers today for Avery's continued healing. Also, please pray for Shane and Carissa. They are tired, overwhelmed and scared to death.
I (or one of them) will update if there is any new news later today.
----------------------------------------------------------------------------
While I'm here...
Shane and Carissa are not the type to ask for help, but obviously there comes a time when it's needed.
They have been away from home since early May. They have commuted back and forth...a seven hour round trip. Shane has switched jobs. They are trying to sell their house. Carissa isn't working so that she can be with Avery.
So, I am calling your attention to the "donate button" on the upper side bar of their blog. Any donation would be greatly appreciated and it doesn't have to be much. I realize that in these tough economic times people don't have a lot to give, but even the smallest donation would be appreciated.
Thank you for caring about the Keirseys. I know they appreciate it more than they could ever convey.
7.08.2009
Need prayers!!!
We just got done talking with Dr. Garcia. She is our go to gal these days. She is seriously concerned about Avery's kidneys. She cannot afford to go into kidney failure. There is not much that can be done if that happens. I am really scared right now that we might lose her. Maybe I am over reacting but Shane and I are both really scared right now. The doctors can't really explain why Avery is so swollen. I really don't like it when doctors don't have answers. She has come so far and we hate to consider that we might lose her. I want normal back. I am tired and very worried. Please pray for us tonight.
7.06.2009
Getting Better
Well as of yesterday, Avery's fluid was negative...which is a good thing. Basically, she peed out more than the amount of fluid that was put in. She needs to be "negative" for a little bit in order for her swelling to go down. The surgeons were in this morning to put a wound vac on the area where Avery had her silo. The silo wound could not be closed completely because there was not enough skin. Slowly over time, the wound vac will pull the skin together. At least that's how I think it works. For those of you how have been through issues with CDH, I thought I would just update you on some of Avery's numbers. Her blood pressure is in the 70's and her heart rate is paced at 140. Her O2 saturation is in the high 90's. Vent setting is at 40% oxygen and rate is 38. Her last CO2 came back at 40. I know all that is confusing and honestly I can't really explain well what all those numbers mean, but most of them are really good.
I am feeling better today. I am slowly crossing things off my list of things to get done. Lots of phone calls and just keeping up with details. Shane is helping a lot and we are hoping to get the house on the market soon. Pray it sells! Kaitlyn has a fever so she is taking it easy today. I am off to the grocery store and then home.
I'll let you know if anything else changes. Thanks for supporting us!
Carissa
I am feeling better today. I am slowly crossing things off my list of things to get done. Lots of phone calls and just keeping up with details. Shane is helping a lot and we are hoping to get the house on the market soon. Pray it sells! Kaitlyn has a fever so she is taking it easy today. I am off to the grocery store and then home.
I'll let you know if anything else changes. Thanks for supporting us!
Carissa
7.04.2009
I'm Panicked
I promise I have tried to post for the past couple days and for one reason or another, I have not been able to do it. There are so many things running through my brain right now, I am not even sure where to begin.
Avery update first. She is still EXTREMELY swollen. This has turned out to be a fairly significant setback. The doctors have tried numerous drugs to help her pee more and she just isn't responding. I am freaking out. She looks absolutely horrible and there is no progress being made. It is really hard for me to see her right now and quiet honestly, I dread walking in her room every morning. I leave feeling disappointed and out of hope. I don't know why this is hitting me so hard and I cannot explain my reasoning for being so depressed about the whole thing. I cry every time I walk out of the room. Due to the swelling, they have stopped her feeds and gone up on all her ventilator settings so that sucks. Now, all that being said, she has some good things happening. Her heart rhythm seems to be under control, she is completely off nitric oxide, and up to this point has been tolerating her feeds really well. I would probably be a lot happier about all the other stuff if I could get my mind off the swelling.
So on to other stuff. Many of you may have read Shane's recent post about his job change. This has been a really good thing for him and the rest of our family. He is working hard but much more relaxed overall and much more available for helping me through all this mess. I love him to death and am so thankful for his constant support. So as a result of all of the complications with Avery, we are in the process of moving so that we can be closer to the hospital. This is a huge undertaking and I am having a hard time working through all the details. First things first, we have got to either sell or rent our home in Fayetteville. Then we need to find a house to rent around here somewhere. So I just want to make a note here (for all you who know me well), that I AM ASKING FOR HELP!! If any of you know of someone who would be interested in renting or buying our house, please contact me either through a comment or email. If anyone knows of an appraiser who could appraise our house, that would be good. Eventually we will need help packing, cleaning, and moving so I will keep you posted on that. If any of you have connections in the Maumelle or Conway area as far as rental homes are concerned, let me know. So far, we have gotten a huge outpouring of help and I although I can't tell you all exactly what we need right now, I can give you an idea that these are some of the things we are dealing with. I don't have an exact timeline for all this stuff, but it would be nice to get the house stuff taken care of ASAP.
Please know that we so appreciate all that everyone is doing for us. We realize that we will never be able to thank you enough and hope to pay it all forward someday. Please please pray that Avery will get over this issue with her swelling...her kidneys are being asked to work much harder than they should so shout out some words of encouragement for them.
Carissa
Avery update first. She is still EXTREMELY swollen. This has turned out to be a fairly significant setback. The doctors have tried numerous drugs to help her pee more and she just isn't responding. I am freaking out. She looks absolutely horrible and there is no progress being made. It is really hard for me to see her right now and quiet honestly, I dread walking in her room every morning. I leave feeling disappointed and out of hope. I don't know why this is hitting me so hard and I cannot explain my reasoning for being so depressed about the whole thing. I cry every time I walk out of the room. Due to the swelling, they have stopped her feeds and gone up on all her ventilator settings so that sucks. Now, all that being said, she has some good things happening. Her heart rhythm seems to be under control, she is completely off nitric oxide, and up to this point has been tolerating her feeds really well. I would probably be a lot happier about all the other stuff if I could get my mind off the swelling.
So on to other stuff. Many of you may have read Shane's recent post about his job change. This has been a really good thing for him and the rest of our family. He is working hard but much more relaxed overall and much more available for helping me through all this mess. I love him to death and am so thankful for his constant support. So as a result of all of the complications with Avery, we are in the process of moving so that we can be closer to the hospital. This is a huge undertaking and I am having a hard time working through all the details. First things first, we have got to either sell or rent our home in Fayetteville. Then we need to find a house to rent around here somewhere. So I just want to make a note here (for all you who know me well), that I AM ASKING FOR HELP!! If any of you know of someone who would be interested in renting or buying our house, please contact me either through a comment or email. If anyone knows of an appraiser who could appraise our house, that would be good. Eventually we will need help packing, cleaning, and moving so I will keep you posted on that. If any of you have connections in the Maumelle or Conway area as far as rental homes are concerned, let me know. So far, we have gotten a huge outpouring of help and I although I can't tell you all exactly what we need right now, I can give you an idea that these are some of the things we are dealing with. I don't have an exact timeline for all this stuff, but it would be nice to get the house stuff taken care of ASAP.
Please know that we so appreciate all that everyone is doing for us. We realize that we will never be able to thank you enough and hope to pay it all forward someday. Please please pray that Avery will get over this issue with her swelling...her kidneys are being asked to work much harder than they should so shout out some words of encouragement for them.
Carissa
Subscribe to:
Posts (Atom)
