Kasi is doing good. She is need of prayer for her blood pressure. For the first time it is too low. Yep! They are trying to get more fluids in her to help her kidneys, but it seems like she just wants to get rid of all the fluid they give her.
She looks very puffy and pale. She has many many tubes in her body. The ones in her nose are driving her nuts. When she is awake that is. She is still struggling to wake up. Her belly hurts and she coughs once in a while which cause a lot of pain. I would put pics on here, but it is not for all to see, just because it is troubling.
Please pray for her blood pressure to be stabble. For them to figure out what is going on with all of that. Please pray that her heart rate stays down too.
I will update again in the morning. I am tired, but I will stay by her side!
Jodi
PS....God knows what is going on, but I need to ask you to pray for the kids that are being taken here on the hilocopter. It is landing on here once again, and that is the second time in a 1/2 hour. So, someone life is changing....God please give wisdom, guidance, peace, and healing to the kiddos that are coming in!
Thursday, November 4, 2010
Dr. Stanley's report
Dr. Stanley just got done updating us on what they did in the OR. They were successful with what they did, they ended up patching the aorta from the top down to the kidneys. He did leave her aorta alone just past her kidneys and he said he is not worried about that right now. He is hoping that will grow a bit after it has good pressure to it. Her aorta had grown some alternate routes around it and that is why she did not have as many symtoms as the normal coarctations. There was turbulance though and that was taken care of by this surgery which is a great thing. They will try to have her off the vent when she gets out of surgery and into the PCTU. She might need blood yet tonight too, but we will see. She is not going to look good, but he is very happy with her progress. It will be after 6:00 before we see her and I will update more then. Just know that now is the critical part. He was confident about the surgery, recovery is big. BUT, as we know God is bigger.
I will type more later, we are getting ready to move!
Love to you all!!
Jodi
I will type more later, we are getting ready to move!
Love to you all!!
Jodi
they are closing
We just got the update that Kasi is doing great, the patch is done, and they are starting to close. It will about 90 more minutes and then we will talk to the doctor. From there we will be able to see her, but not for a bit. She will be going to the PCTU from surgery and we will be able to see her there. I will let you know what Dr. Stanley says when we talk to him.
Sing Praise!
Sing Praise!
update....
We just got an update and she is doing good. They are just starting to put the patch in place. Kasi has been in for 5 hours and the surgery has been going on for about 4 hours. If they are just starting the repair it will be a while yet before she is out. Please pray for guidance of Dr. Stanley's hands and for the patch to "take" with no leaks. May God fill Dr. Stanley's mind with wisdom and keep his hands steady. May Kasi's spinal cord be protected and her kidneys keep functioning. Lord, hold her in your Mighty Hand!
a non-update
Why am I saying a non-update, well it is because they haven't started yet. The rods in her back are making it hard for positioning on the table. Please pray for wisdom that they are able to start soon. This is going to be a LONG haul!! Really long, and the fact that they haven't started yet is meaning that she will be under even longer.
Also, many people are letting us know about the rainbow in the sky! Remember God keeps His promises. His promise to us it that NO ONE can snatch us from His hand. It means we have comfort that our forever is with Him. Pray for Kasi to fight with the strength of God!!!
One more thing, one of our prayer warriors said that she was listening on the radio to MOODY out of Chicago and well, they stopped this morning on prayed for Kasi. God is good! And it is loud before His throne on her behalf.
This is my song for Kasi
You Dance over me
while I am unaware
You sing all around,
but I never hear the sound
Lord I amazed by you
Lord I amazed by you
Lord I amazed by you....
how you love me
You paint the morning skies,
with miracles in mind
my hope will always stand,
for you hold me in your hand
How wide, how deep, how great is your love for me!!!
They just called out and they made the incision...
bowing to the Father,
Jodi
Also, many people are letting us know about the rainbow in the sky! Remember God keeps His promises. His promise to us it that NO ONE can snatch us from His hand. It means we have comfort that our forever is with Him. Pray for Kasi to fight with the strength of God!!!
One more thing, one of our prayer warriors said that she was listening on the radio to MOODY out of Chicago and well, they stopped this morning on prayed for Kasi. God is good! And it is loud before His throne on her behalf.
This is my song for Kasi
You Dance over me
while I am unaware
You sing all around,
but I never hear the sound
Lord I amazed by you
Lord I amazed by you
Lord I amazed by you....
how you love me
You paint the morning skies,
with miracles in mind
my hope will always stand,
for you hold me in your hand
How wide, how deep, how great is your love for me!!!
They just called out and they made the incision...
bowing to the Father,
Jodi
Here we are...
It is hard to begin these sometimes because there is so much to say and I never know where to begin. Yesterday I told you about what was going to happen to the best of my knowledge. Now I will update you on where we are at in the process.
Last night was tough. I "slept" with Kasi in her bed, but she had to get up every 10 mins to use the bathroom because of the medicine she was on. They wanted her belly to be completely empty and I think they succeeded. We did sleep from about 1:30-4:00 am and then it started over again. She is very tired that is for sure.
This morning she was preped in a pre-op room where we all had the opportunity to pray with her. She was very very strong! She was smiling and talking to the Docs and nurses as they came in to ask questions and explain the day. When the time came for her to go down they gave her sleepy meds and that is when she broke down. She is such a special young lady who has to go through so much! She knows God's peace, but they are very real about her long haul in front of her.
One thing has changed from yesterday, and that is she will not be having the epidural. Her back still has a significant curve to it and with the rods and screws they feel they could not take the risk at this time. Although, they might revisit it later. That means she will have to have a pain pump where she pushes the button for pain. The problem with this is it is not ideal because the meds go through the whole body which can make it lazy. It will be harder to get off the breathing machine with this pump. In fact it seems like it is probable that she will be on the vent. They also have to use a different kind of vent for this because they will have to inflate only one lung so they can move the other out of the way for surgery.
We are doing okay right now. We are at peace right now, with a few tears of course.
I will update more later.....surgery will start officially at 9:30
love you all!!!
Last night was tough. I "slept" with Kasi in her bed, but she had to get up every 10 mins to use the bathroom because of the medicine she was on. They wanted her belly to be completely empty and I think they succeeded. We did sleep from about 1:30-4:00 am and then it started over again. She is very tired that is for sure.
This morning she was preped in a pre-op room where we all had the opportunity to pray with her. She was very very strong! She was smiling and talking to the Docs and nurses as they came in to ask questions and explain the day. When the time came for her to go down they gave her sleepy meds and that is when she broke down. She is such a special young lady who has to go through so much! She knows God's peace, but they are very real about her long haul in front of her.
One thing has changed from yesterday, and that is she will not be having the epidural. Her back still has a significant curve to it and with the rods and screws they feel they could not take the risk at this time. Although, they might revisit it later. That means she will have to have a pain pump where she pushes the button for pain. The problem with this is it is not ideal because the meds go through the whole body which can make it lazy. It will be harder to get off the breathing machine with this pump. In fact it seems like it is probable that she will be on the vent. They also have to use a different kind of vent for this because they will have to inflate only one lung so they can move the other out of the way for surgery.
We are doing okay right now. We are at peace right now, with a few tears of course.
I will update more later.....surgery will start officially at 9:30
love you all!!!
Wednesday, November 3, 2010
We are here
Well, where do we start, this is the first post of many to come. I will start by saying that your prayers are being answered and there is a since of peace in my heart. This is good because in the last two days I have come down with a bad case of the hives. YUCK! I am sure it is because of stress, but I know everything will be okay and God is in control, even though I like to try sometimes. I should have learned this by now you would think. Sometimes what seems so simple to say is so hard to practice. This is one of those things for me.
We made it here on time today and had a nice lunch. When meeting with Dr. Stanley we have learned that he will do what he needs to do when he is in the OR. He has 2 plans, but he said he might be up to plan 7 or 8 by the time the surgery is done. In other words, her body is very different from the "normal" coaractations and since she has had this done before and with this being her complete aorta, taking into consideration her screws and rods, this will be a challenge. He is pretty confident though that surgery will go okay, but he doesn't take it lightly. It is after surgery that most problems occur. So these prayers need to keep going for Kasi to be a fighter. She has a fight to fight that is for sure. She needs strength, not just strength of her own, but God's strength.
Her day will look a little like this tomorrow. They are going to start an IV at midnight tonight and give her fluids and start some antibiotics. She is on clear liquids now and a medicine to clean her out. At 6:00 am we will start coming along side her for prayer and at 6:30 she will be moved back to the CVC for her surgery. They will start all of her lines over there. She will have a central line going in at her neck, a Art line going in her wrist, several IV's, NG tube, and a chest tube when she comes out. She might still be on a ventilator too. This surgery will be a long one and the nurse will report every hour to hour and a half. She will be moved from surgery to the pediatric cardiovascular intensive care unit. ( PCIC ) and she will remain in there for about 6 days. Not 6 for sure days, but around that many. They are hoping to be able to put in a epidural for pain, but they are not sure if they will be able to because of her rods. There is a lot they are going to figure out tomorrow because of those rods. Positioning is another thing, they usually roll the patient in surgery onto their side a bit, but she might not be able to be moved in that way. So, we are back to the fact that she is just different.
Please pray for wisdom for the doctors, Dr. Stanley in the main Dr. in charge, but all of the nurses and staff that help with this whole process. We know that she is in the best hands, in the world and beyond with God on our side. Pray for peace tomorrow too. Pray for the mind, hands and eyes of Dr. Stanley. May they be guided by God Himself! God is our strength, Jesus our love, and the Holy Spirit our comforter....resting in Him!
Love to you all!
Jodi
We do have a prayer beeper up here...474-0246 is the number. When you pray you can call it and it will beep on our end.
We made it here on time today and had a nice lunch. When meeting with Dr. Stanley we have learned that he will do what he needs to do when he is in the OR. He has 2 plans, but he said he might be up to plan 7 or 8 by the time the surgery is done. In other words, her body is very different from the "normal" coaractations and since she has had this done before and with this being her complete aorta, taking into consideration her screws and rods, this will be a challenge. He is pretty confident though that surgery will go okay, but he doesn't take it lightly. It is after surgery that most problems occur. So these prayers need to keep going for Kasi to be a fighter. She has a fight to fight that is for sure. She needs strength, not just strength of her own, but God's strength.
Her day will look a little like this tomorrow. They are going to start an IV at midnight tonight and give her fluids and start some antibiotics. She is on clear liquids now and a medicine to clean her out. At 6:00 am we will start coming along side her for prayer and at 6:30 she will be moved back to the CVC for her surgery. They will start all of her lines over there. She will have a central line going in at her neck, a Art line going in her wrist, several IV's, NG tube, and a chest tube when she comes out. She might still be on a ventilator too. This surgery will be a long one and the nurse will report every hour to hour and a half. She will be moved from surgery to the pediatric cardiovascular intensive care unit. ( PCIC ) and she will remain in there for about 6 days. Not 6 for sure days, but around that many. They are hoping to be able to put in a epidural for pain, but they are not sure if they will be able to because of her rods. There is a lot they are going to figure out tomorrow because of those rods. Positioning is another thing, they usually roll the patient in surgery onto their side a bit, but she might not be able to be moved in that way. So, we are back to the fact that she is just different.
Please pray for wisdom for the doctors, Dr. Stanley in the main Dr. in charge, but all of the nurses and staff that help with this whole process. We know that she is in the best hands, in the world and beyond with God on our side. Pray for peace tomorrow too. Pray for the mind, hands and eyes of Dr. Stanley. May they be guided by God Himself! God is our strength, Jesus our love, and the Holy Spirit our comforter....resting in Him!
Love to you all!
Jodi
We do have a prayer beeper up here...474-0246 is the number. When you pray you can call it and it will beep on our end.
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