My update is going to be quick today because I am waiting for rounds with the doctors yet. I know that they are starting her on an antibiotic today because her white blood count is up to 13,000. They feel like it could be one of two things, but they are doing cultures to make sure. I will let you know what they find out, but please pray that it is NOT in her blood and that it will not effect her patch. We are praying protection over that patch of hers! She is feeling good right now, in pain still but loving her button. She looks a lot better because she does have her central line out and that is awesome!! Pray for her to have better bowel sounds. She still can not have anything by mouth for maybe another couple of days....and she is getting hungry!
I will post more later!
Wednesday, November 10, 2010
Tuesday, November 9, 2010
a new day!
Wow, what a long night, but productive! Kasi's chest Xray is looking better, praise God for that one along with us. I know we bring so many petitions before our God and sometimes on here it seems I am always asking for prayers for something. I just want to say, I try to balance it, but sometimes our immediate need seems so great that it even clouds my thinking and typing. Know that I am grateful throughout the day with her progress and her strength and I have moments of sadness knowing that she is in pain and it is a long road. I just want her to be better and I have to remember that this is going to be a long recovery. I am reminded by the doctors that this is a huge surgery that she has gone through and they are pleased with her recovery. It is also one they take very seriously. They are going to be taking out her central line and foley today because the longer they are in the greater chance of infection. That is not good because they really stressed in rounds this morning how NOT GOOD that would be. She is hanging on to a "higher" temp, but not one they would call a fever. They are keeping a very close eye on that. She is currently sitting in a chair, and is starting to joke around. I love it, her humor is coming back again and even the nurse stops and asks, "what did she just say?" I would tell her and she would laugh. It is great to see that once again.
So my prayer for today are this:
Fluid off her body, pain to lessen, no infection, no fever, and strength.
Also, being up here is a such a reminder of when we went through this 14 years ago when she was a baby. I see all of the babies up here and I just want to wrap up the moms and say it is okay just cry. It is so hard to watch. We have Hope, and we have to remember that some don't know the Hope we have or the peace we have in Jesus.
Kasi and I have been following a blog of a little guy who is up here. The blog is bowensheart, and for some reason Kasi feels a little connected to Bowen in her heart. We had the opportunity to meet his mom and dad the other day up here and they were looking forward to maybe being able to go home on Monday. Well, because of "stuff" of being a heart baby and all the things that go on up here it will be a while now before he goes home. This really made Kasi sad for Bowen and we have prayed for him a lot in the last couple of days. I just want to let you all know because I know that we have over 1,000 people reading this blog and if we pool all of our prayer warriors along side his it would be even louder before the throne of God on Bowen's behalf. So every time you pray for Kasi, and my buzzer goes off, which is so encouraging to Kasi, I know that Bowen's name will be mentioned too. Matt and Sarah, his mom and dad too! God knows every detail of these little ones and right now Kasi and I are praying for Bowen to fight just as Kasi is fighting. Be God strong!!
Thank you for all of your prayers, we are on the road, together. I am blessed to be Kasi's mom and she is a gift. I see God's goodness and blessings around all of the time.
Love to you all!
Jodi
So my prayer for today are this:
Fluid off her body, pain to lessen, no infection, no fever, and strength.
Also, being up here is a such a reminder of when we went through this 14 years ago when she was a baby. I see all of the babies up here and I just want to wrap up the moms and say it is okay just cry. It is so hard to watch. We have Hope, and we have to remember that some don't know the Hope we have or the peace we have in Jesus.
Kasi and I have been following a blog of a little guy who is up here. The blog is bowensheart, and for some reason Kasi feels a little connected to Bowen in her heart. We had the opportunity to meet his mom and dad the other day up here and they were looking forward to maybe being able to go home on Monday. Well, because of "stuff" of being a heart baby and all the things that go on up here it will be a while now before he goes home. This really made Kasi sad for Bowen and we have prayed for him a lot in the last couple of days. I just want to let you all know because I know that we have over 1,000 people reading this blog and if we pool all of our prayer warriors along side his it would be even louder before the throne of God on Bowen's behalf. So every time you pray for Kasi, and my buzzer goes off, which is so encouraging to Kasi, I know that Bowen's name will be mentioned too. Matt and Sarah, his mom and dad too! God knows every detail of these little ones and right now Kasi and I are praying for Bowen to fight just as Kasi is fighting. Be God strong!!
Thank you for all of your prayers, we are on the road, together. I am blessed to be Kasi's mom and she is a gift. I see God's goodness and blessings around all of the time.
Love to you all!
Jodi
Monday, November 8, 2010
The end of a long day....again!
Tonight as I look at Kasi she is finally sitting up in bed watching a little TV. I believe after a long process of figuring out that Kasi doesn't tell you when she hurts she actually just copes, they have her pain a little more under control. Kasi is extremely strong as I have said before and it most-likely is because she has been exposed to so much pain over her life and especially as a baby. Her body and brain kind of take over and she has things she does naturally to cope with the pain. As good as that could be, it is also not nice when her body is in real pain and she doesn't know how to feel it or explain it. Which can cause you not to breath deep and can cause you not to wake up. I have to say, Kasi is awake right now and is breathing pretty good. It has been a really long day though. God is good and He is working in this room. There were times today that Kasi sats were dropping in the 70's and she just couldn't breath very well. They have been turning up her O2 and now they finally have it set at 6 liters and 50%. What that all means I am not sure, but it is a lot more than before when she was on a nose thing at .5 liters. The fluid wants to take up residents in her lungs, and we are praying against that! I have prayed over her silently and together. We have had many answers to prayers and we have a buzzing going on that I love because it is giving me peace to know that people aren't forgetting to pray. This is a long process and it is looking like we will be in the PICU until Thursday. On Thursday she will have a angiogram to check her repair. She will once again be put under and have a breathing tube. Pray that her belly starts working before that, that her lungs won't be lazy, and that the fluid is GONE! In Jesus Name!
I am kind of scattered with all of my thoughts of the day and there is not really anyway to sum them all up. I found myself in the PICU pleading with the Father again as I saw Kasi not gaining. I saw her is such pain I would look out the window and say "Lord give me the strength to show her Your strength and that she CAN do this". Kasi has fought all day! She has worked through the worst pain you could probably ever feel and try to get strength from muscles that have just been cut through. She is amazing, but God's strength in her was so awesome to see today. She now feels good about her day and I am very proud of her. She has fought and now it is time for rest. A little anyway, she will still be getting up every hour and maybe even have to lay on her vibrating thing every 1/2 hour.
Keep up the praying, we love you all!
Jodi
I just asked Kasi if she wanted to tell you all something and she said, through coughs and pain....my chest! So, Please pray for her chest. This is her plea to you all!
I am kind of scattered with all of my thoughts of the day and there is not really anyway to sum them all up. I found myself in the PICU pleading with the Father again as I saw Kasi not gaining. I saw her is such pain I would look out the window and say "Lord give me the strength to show her Your strength and that she CAN do this". Kasi has fought all day! She has worked through the worst pain you could probably ever feel and try to get strength from muscles that have just been cut through. She is amazing, but God's strength in her was so awesome to see today. She now feels good about her day and I am very proud of her. She has fought and now it is time for rest. A little anyway, she will still be getting up every hour and maybe even have to lay on her vibrating thing every 1/2 hour.
Keep up the praying, we love you all!
Jodi
I just asked Kasi if she wanted to tell you all something and she said, through coughs and pain....my chest! So, Please pray for her chest. This is her plea to you all!
requests/update
This morning has been full of excitement already. Starting at 6:20 of course they doctors were in here assessing how Kasi was doing after a long over night of waking up every hour. Well, what they are finding is the fact that her left lung has air on it, but now her right lung looks "fuzzy". This could be from all the fluid they gave her plus her pain not allowing her to take deep breaths to keep it off/out. So, today they are going to work on different pain management plus she will be doing even more breathing "things" to help expand her lungs. They are going to try and get her up out of bed and talking a couple of steps today. They will have to call in PT to help with this because she is hooked up to so much yet. I guess they have a system and it does work really well. Kasi's blood pressure has gone up some, but that is from taking quicker shallower breaths instead of being restful. She also has more pain in her belly and side. This is from her incision which is massive. Her incision goes from underneath her shoulder blade in her back down following her ribs to her middle front and continues straight down her belly to about 4 inches below her belly button. She has had all her tummy muscles cut and her diaphragm plus they went in between her ribs. Yep, she does have pain and rightfully so. She is doing great though with that, and just really wants to sleep. Her mask on her face does bother her some just because she has a really hard tube going into her nose to her belly because her tummy isn't working yet. Her kidneys seem to be stable right now which is great news! Until she is moving around and stuff we won't know fully what her "normal" will be.
We are praising God for all of the good things and praying to God for all of these other issues. It is amazing to watch people up here to really don't know Him and it is sad to see there great pain and anguish because of the uncertainties and unknowns. We have seen people collect in the family room only to see their child for the last time to what I am thinking to be a single mom here with her baby and her pain almost to much to bear. I know all of you are praying for Kasi and for us, and we love that and praise God for that, but being here makes life a little real to the fact people go through this daily/weekly/monthly. Yes this is our journey and we are going through it too, but with a Hope that some don't have. I praise God for claiming us, for writing our name in His book and for loving us beyond all measure. I pray that I will be able to show that love to those we see in our family waiting area of the PICU/PTCU. They are people from all over the country, with life changing events happening right now. There are tears being shed every moment of every day, some for rejoicing and some for sorrow. Please remember all the families in these moments of life.
I will update you all tonight about her progress of the day! Keep posting on her facebook wall if you are her friend! I read them to her and it gives her a smile!
Love you all!!
Jodi
We are praising God for all of the good things and praying to God for all of these other issues. It is amazing to watch people up here to really don't know Him and it is sad to see there great pain and anguish because of the uncertainties and unknowns. We have seen people collect in the family room only to see their child for the last time to what I am thinking to be a single mom here with her baby and her pain almost to much to bear. I know all of you are praying for Kasi and for us, and we love that and praise God for that, but being here makes life a little real to the fact people go through this daily/weekly/monthly. Yes this is our journey and we are going through it too, but with a Hope that some don't have. I praise God for claiming us, for writing our name in His book and for loving us beyond all measure. I pray that I will be able to show that love to those we see in our family waiting area of the PICU/PTCU. They are people from all over the country, with life changing events happening right now. There are tears being shed every moment of every day, some for rejoicing and some for sorrow. Please remember all the families in these moments of life.
I will update you all tonight about her progress of the day! Keep posting on her facebook wall if you are her friend! I read them to her and it gives her a smile!
Love you all!!
Jodi
Sunday, November 7, 2010
Here and now!
As I sit here time after time and hear the doctors tell us how great it is that Dr. Stanley did this surgery, I started to think on it all. What I was thinking is how awesome our God is in the middle of all of this. I know you have heard me explain how this surgery is one that no one else in the world has ever done before. There are no support groups, or things to look up online that will help us understand what was and is going to happen with healing. Well, something one doctor said to me today kind of really made me think about this. He said that if Kasi were to have any more surgeries on this or complications it would most likely be Dr. Aliason that would be following up on her. Why? Because Dr. Stanley is 72 and he is the best in the world, but Dr. Aliason has been training under him for years and is looking to take over when he retires. All of this to say, that if Kasi wouldn't have had this surgery done now, we wouldn't have had the experience of Dr. Stanley to do this and who knows what it would be like for her. Well, God knows, and He knew!
Back in 2008 we were wondering what her back surgery would do to her aorta. It was a very stressful time as you remember and it was going to be a long, rough, road with lots of pain. If you also remember God spared her from pain and the long rough road. She did amazing with her back surgery and rebounded so well she was back to school a month ahead of schedule. It did though make this surgery happen sooner rather than later. It caused her to grow 4.5 inches in a very short amount of time which her aorta couldn't handle. Dr. Stanley said the surgery was inevitable it was just pushed up a bit because of the quickness in which she grew. All of that to say, God is so good!!! Why? If you look at this, if Kasi wouldn't have had the back surgery to speed along this heart surgery, wouldn't we have had the man God had prepared for this surgery. No matter how we look at this, it was Gods plan for her to go through this, because His Glory is bigger through what we are seeing and experiencing than if we have not had any of this. He is being seen by many many people because of answers to prayer and by His power being shown. Kasi too is seeing Him and is feeling His power through her, and because of that people up here at U of M are seeing God's amazing Grace through a 14 year old young woman. I just thought I needed to share this because it shows God's sovereignty in and through ALL things!
Today as I look back at our little journey so far at U of M I can see the amazing people of God listening and obeying the call of being faithful. Faithful to each other and working together because of Kasi. There were no denominational boundaries or differences, just people loving God and loving Kasi. At the fundraiser there were more than 1,000 people there at some point. As overwhelming as that night was it gives me great assurance at the amount of people that are making it loud before the throne of our Father. What a gift! How awesome for Kasi and how humbling for me. This prayer buzzer going off at all times is crazy to think each represents people praying Kasi's name before the Creator of all things!
That brings me to yesterday and the challenges we faced. They were so hard to be in the middle of and to feel like I was watching from a distance. My body and mind go into help her mode and I don't even think to cry until I have a moment to release at the end of the day. Today I can look at yesterday and I almost can truly see all of the angels and them singing all around, but we didn't hear the sound. Lord, I am sooo amazed by you. Prayers answered from the time my buzzer started going off and He relieved her pain and gave her peace and joy.
Today again was a day full of pain and relief. She dealt with a severe pain in her chest/throat which was almost unbearable. Now it is less severe and she is sleeping. She has had her bath and her hair has finally been combed. I know, not a big deal, right? It is a big deal if your hair was all stuck in your tape for your central line. Not fun! She did get her chest tube out, but now they found out she has some air around her lung where the chest tube was. Her oxygen has dropped so they have put her on more O2 now to try and increase her oxygen to get this out of her. She was actually just put on 100% oxygen with a mask. They will be waking her up every hour and the hour to do her breathing too, so she will be exhausted!
Her output today is less then they would like too and her BP is starting to go up. That just means her kidneys are still trying to adjust to "real" blood pressure and they are trying to recover after no blood for a while in the OR. Her belly still doesn't have anything going on inside, so still no food. She will start receiving nourishment through her IV if she goes much longer with out eating. She is a tough girl and she is fighting. I am so happy to know that she is not fight alone, but with many people on their knees for her.
This is our journey, and it is one we do with each step taken in Faith. Our God is healer, awesome in power...OUR GOD! Yes, I could just shout it right now. I have a joy, even through these struggles and tears, knowing that the same God holds her. It was nice to see another family up here who is also experiencing God's glory all around. I praise Him for their testimony too, so others can see the work of God, love of Jesus, and comfort of the Holy Spirit.
Please continue to pray. We see a lot of doctors in here a lot of times. And well, we are doing good, we still are on one on one care because she is still not "out of the woods". But His glory is here and now!
---Jodi
Back in 2008 we were wondering what her back surgery would do to her aorta. It was a very stressful time as you remember and it was going to be a long, rough, road with lots of pain. If you also remember God spared her from pain and the long rough road. She did amazing with her back surgery and rebounded so well she was back to school a month ahead of schedule. It did though make this surgery happen sooner rather than later. It caused her to grow 4.5 inches in a very short amount of time which her aorta couldn't handle. Dr. Stanley said the surgery was inevitable it was just pushed up a bit because of the quickness in which she grew. All of that to say, God is so good!!! Why? If you look at this, if Kasi wouldn't have had the back surgery to speed along this heart surgery, wouldn't we have had the man God had prepared for this surgery. No matter how we look at this, it was Gods plan for her to go through this, because His Glory is bigger through what we are seeing and experiencing than if we have not had any of this. He is being seen by many many people because of answers to prayer and by His power being shown. Kasi too is seeing Him and is feeling His power through her, and because of that people up here at U of M are seeing God's amazing Grace through a 14 year old young woman. I just thought I needed to share this because it shows God's sovereignty in and through ALL things!
Today as I look back at our little journey so far at U of M I can see the amazing people of God listening and obeying the call of being faithful. Faithful to each other and working together because of Kasi. There were no denominational boundaries or differences, just people loving God and loving Kasi. At the fundraiser there were more than 1,000 people there at some point. As overwhelming as that night was it gives me great assurance at the amount of people that are making it loud before the throne of our Father. What a gift! How awesome for Kasi and how humbling for me. This prayer buzzer going off at all times is crazy to think each represents people praying Kasi's name before the Creator of all things!
That brings me to yesterday and the challenges we faced. They were so hard to be in the middle of and to feel like I was watching from a distance. My body and mind go into help her mode and I don't even think to cry until I have a moment to release at the end of the day. Today I can look at yesterday and I almost can truly see all of the angels and them singing all around, but we didn't hear the sound. Lord, I am sooo amazed by you. Prayers answered from the time my buzzer started going off and He relieved her pain and gave her peace and joy.
Today again was a day full of pain and relief. She dealt with a severe pain in her chest/throat which was almost unbearable. Now it is less severe and she is sleeping. She has had her bath and her hair has finally been combed. I know, not a big deal, right? It is a big deal if your hair was all stuck in your tape for your central line. Not fun! She did get her chest tube out, but now they found out she has some air around her lung where the chest tube was. Her oxygen has dropped so they have put her on more O2 now to try and increase her oxygen to get this out of her. She was actually just put on 100% oxygen with a mask. They will be waking her up every hour and the hour to do her breathing too, so she will be exhausted!
Her output today is less then they would like too and her BP is starting to go up. That just means her kidneys are still trying to adjust to "real" blood pressure and they are trying to recover after no blood for a while in the OR. Her belly still doesn't have anything going on inside, so still no food. She will start receiving nourishment through her IV if she goes much longer with out eating. She is a tough girl and she is fighting. I am so happy to know that she is not fight alone, but with many people on their knees for her.
This is our journey, and it is one we do with each step taken in Faith. Our God is healer, awesome in power...OUR GOD! Yes, I could just shout it right now. I have a joy, even through these struggles and tears, knowing that the same God holds her. It was nice to see another family up here who is also experiencing God's glory all around. I praise Him for their testimony too, so others can see the work of God, love of Jesus, and comfort of the Holy Spirit.
Please continue to pray. We see a lot of doctors in here a lot of times. And well, we are doing good, we still are on one on one care because she is still not "out of the woods". But His glory is here and now!
---Jodi
Saturday, November 6, 2010
Where do I start
What a day!! I don't even know where to start because I feel like I have lived a whole week in one day. Kasi woke up this morning looking better than before because she lost some of the water weight that was around her face. We thought this day was going to be an awesome day! It started out smoothly, but then Kasi seemed to be a little less awake or "smart" this morning. I wasn't sure what it was until the doctors started to collect outside her door and we had a "talk". This was about the fluid that was building up around her lungs and making it hard for her to breath. Plus they didn't want these fluids to start to collect inside her lung tissue. She was told she would have to start and take deep breaths and the morphine knocks her out so that was hard to do because she was struggling to stay awake. They cut back on her morphine so she would wake up more and at the same time she would have to start doing some deep breathing things to get the phlegm out of her chest. Well, the result was awful for her. She started to cough and it is so thick because she is not able to take anything by mouth. It was extremely hard on her not to mention she couldn't breath 3 or more times and she just looked up at me with fear in her eyes mouthing "I can't breath". For me that is a moment that I will never forget. It was an awful, gut wrenching, hard thing to see and take. As a mom I wanted to just get it out, but there was nothing I could do. The pain she was going through was so much that her little body just wouldn't do it. Kasi was really tried, her body just didn't listen. She almost had tears running down her cheeks and she had an incredibly desperate face. One I don't ever need to see again. I was helpless. The nurse stepped in and suctioned her out and that made her gag. She would have her moments of peace in between, but they were not very peaceful. She was scared.
The doctors came by again a little after noon and said they really wanted her to sit in a chair. This would help the fluid around her lungs to drain or loosen up. Kasi has a central line hanging from her neck, a chest tube in her side, an artline, foley, NG tube, and oxygen all connected to her. This moving her thing was going to be a challenge and I was a little nervous about her pain. Well, it did hurt. It hurt alot! The doctors explained to Kasi how good this would be for her, so Kasi was the one who said, "Okay" and started wanting to sit up. She is amazing. The pain it caused what unimaginable, but she endured. She showed grace to all of her care givers, even when they couldn't get her central line that is connected to her neck to stay up. It was hanging, kind of from her and causing discomfort. She also wasn't able to get comfortable so the nurses asked what else they could do for her, she just said, "I am fine, I will deal with it". What? She is 14? I have tears every other moment, some of awe of this little lady, and some of extreme pain in my heart because I can't take hers away. And yet through all of this, we can see a little bit of Kasi through a joke or a smile.
During this time, which was lasting most of the afternoon and early evening, we sent out prayer requests. Well, here it the rest of the evening.
After Kasi sat for about 2 hours, yes, 2 hours!!!! She went back down in bed. She has some more coughing spells and couldn't get the "stuff" out yet. The nurse gave her a little Tylenol and her very own suction. Oh, and in the middle of everything above, Kasi got a fever. Well, within about 1/2 hour to an hour she took a huge jump forward. Seriously! Her fever was gone, she sucked everything up, she could breath, her oxygen sats went up, her coughing was productive but minimal because she didn't really have anything to cough up and she actually watched a little TV. She smiled and talked tonight and she gave the nurse a hard time. She is still using her button for meds, but they turned them way down.
My heart has been on this roller coaster ride today, from being a helpless mom watching my child suffer to a over joyed and thankful mom who wants to do a happy dance before God.
I don't know if you all read my post from last night, but I posted something my friend sent to me about God being all over in this room. I will tell you that I didn't need to see His visual presence because I saw the result of Him. Like a wave of prayers going before the throne of our Father on Kasi's behalf. My daughter, God's child. It is so humbling to know that you all stormed up there with your pleas while I prayed silently over her while helping her breath, just holding her hand and kissing her forehead as the nurse suctioned her out all the way down her throat. Watching her gag and look through those eyes at me as if to say "help" and I just turn to the only One who can and He did. God has done amazing things for her. I am excited to say! Please pray for a good nights rest for her tonight. It has been an extremely long day. She needs rest to get better too.
Praising our Father with all of you!!
Jodi
PS.....she still has a fight to fight, she is beginning to win this round!
The doctors came by again a little after noon and said they really wanted her to sit in a chair. This would help the fluid around her lungs to drain or loosen up. Kasi has a central line hanging from her neck, a chest tube in her side, an artline, foley, NG tube, and oxygen all connected to her. This moving her thing was going to be a challenge and I was a little nervous about her pain. Well, it did hurt. It hurt alot! The doctors explained to Kasi how good this would be for her, so Kasi was the one who said, "Okay" and started wanting to sit up. She is amazing. The pain it caused what unimaginable, but she endured. She showed grace to all of her care givers, even when they couldn't get her central line that is connected to her neck to stay up. It was hanging, kind of from her and causing discomfort. She also wasn't able to get comfortable so the nurses asked what else they could do for her, she just said, "I am fine, I will deal with it". What? She is 14? I have tears every other moment, some of awe of this little lady, and some of extreme pain in my heart because I can't take hers away. And yet through all of this, we can see a little bit of Kasi through a joke or a smile.
During this time, which was lasting most of the afternoon and early evening, we sent out prayer requests. Well, here it the rest of the evening.
After Kasi sat for about 2 hours, yes, 2 hours!!!! She went back down in bed. She has some more coughing spells and couldn't get the "stuff" out yet. The nurse gave her a little Tylenol and her very own suction. Oh, and in the middle of everything above, Kasi got a fever. Well, within about 1/2 hour to an hour she took a huge jump forward. Seriously! Her fever was gone, she sucked everything up, she could breath, her oxygen sats went up, her coughing was productive but minimal because she didn't really have anything to cough up and she actually watched a little TV. She smiled and talked tonight and she gave the nurse a hard time. She is still using her button for meds, but they turned them way down.
My heart has been on this roller coaster ride today, from being a helpless mom watching my child suffer to a over joyed and thankful mom who wants to do a happy dance before God.
I don't know if you all read my post from last night, but I posted something my friend sent to me about God being all over in this room. I will tell you that I didn't need to see His visual presence because I saw the result of Him. Like a wave of prayers going before the throne of our Father on Kasi's behalf. My daughter, God's child. It is so humbling to know that you all stormed up there with your pleas while I prayed silently over her while helping her breath, just holding her hand and kissing her forehead as the nurse suctioned her out all the way down her throat. Watching her gag and look through those eyes at me as if to say "help" and I just turn to the only One who can and He did. God has done amazing things for her. I am excited to say! Please pray for a good nights rest for her tonight. It has been an extremely long day. She needs rest to get better too.
Praising our Father with all of you!!
Jodi
PS.....she still has a fight to fight, she is beginning to win this round!
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