With August being right around the corner it amazes me that 14 years ago in August was Kasi's last major heart surgery. She was in the hospital for a few months and she was just not thriving anymore so the Dr.'s had to do something to help her. Her narrowed aorta and collateral's that she had grown were not bringing enough blood flow to her lower body and her upper body had extremely high pressure that was getting out of control. She was on every kind of medicine and it just wasn't helping her any longer. She was in extreme congestive heart failure. The only solution was to go in and repair her narrowed aorta, but they really didn't know how. 3 very smart Dr.'s went in and actually rebuilt her aorta with her own tissue because they used the collateral that her body had built. This repair was and still is amazing. Never had something like that been done on such a young baby. I am talking NEVER. So amazing is all of that, but what else is amazing is that this whole case was written up in one of the most well known medical journals.
Now here we are 14 years later walking into a room of Dr. Stanley, who is the best of the best in the world when dealing with these type of issues. He is why U of M is known for their pediatric cardiothorasic surgery. And not only that only 1 of 2 in this nation that would have a clue in Kasi's case. Dr. Stanley walked into the room and looked at Kasi and said "I know your insides better than you". We all looked a little puzzled, but he explained that he has been following her case ever since she was a baby. He was so intrigued with it because it was his specialty and it had never been done on someone so little. And now 14 year later we are sitting in his office intent on what he has to say about her aorta issues.
It has been a week since my last conversation with Dr. Stanley. The last conversation leaving room for remembering, and looking ahead. What they found in the heart cath/angiogram, was two narrowings. The normal coarctation would be hour-glass shaped, so wide to a narrowed spot and then wide again. Kasi's narrowing, coarctation, is much different than that. Her first narrowing indents a little bit right after her aortic arch and then stays narrow through her diaphram to a second narrowing which narrows and stays narrow again. In order to fix this Dr. Stanley will have to open her aorta up the whole narrowed part, and then put a patch on her aorta. This means she will have an incision down her chest and across it as well. She will have to go on a bi-pass machine because of the length of time the surgery will take. They will slowly let the blood flow back into her aorta and make sure there are no leaks, and then they will close. She will be in the hospital at U of M for a week and a half to two weeks. Before she leaves she will have to have another heart cath done to double check how her blood flow is and check her pressure. She will then have 6 weeks at home for recovery and then go back to school 1/2 days.
Now to the part that I am pondering and processing. All of this "stuff" I just wrote about is very factual and doesn't show my heart in things. That is not the reason for this blog. This is a Journey in Faith and that is what I ponder and process. God has been calling me to read and re-read the story of Rack, Shack, and Benny....okay for all of you who don't watch veggie tales, it is Shadrach, Meshach, and Abednago. (no comment on spelling because I am not going to look it up right now) I have been pondering parts of this that have brought me to different places. First when I read it I think, wow, God calls us to this type of Faith in every part of our lives. And yes I am not about to get dumped into a firey furnace, phew. Or am I? Are we? Not a physical furnace, but a place where we could loose a life as we know it. Yes, process that. So I read on, and I see that not only were they prepare to go in the furnace for their Faith they went in saying, If God's saves us that is His will and if He doesn't they were still not ever going to serve any other god but the only One True God. Hmmmmm....more pondering. I have to remember that yes, Dr. Stanley is the best of the best, but if it is God's will for her to be saved He will save her, and if it is not His will, I will praise Him for freeing her completely. Yes, I write that with tears in my eyes, but the truth is our time on this earth is so very short compared to eternity. And Kasi loves God more than anything, her faith is amazing! So, I read on, and in the middle of the firey furnace, when it is 7 times hotter than normal, who is with them. Jesus. And that my friends is the peace that can transend all understanding.
Yes, we are looking ahead and praying for miracles to happen in this little ladies life. I believe in miracles!! I also know that our God is Sovereign. He is the same yesterday, today, and tomorrow, so in all of this I look at our yesterday even if it was 14 years ago. He changed my life then and is still growing me up in Him. I praise Him for Kasi and for the refining fire we have been through together. She has felt the hand of God is ways most people will never know until the actually see Him face to face. She has held Jesus hand as she fell asleep as a young child. (I know this because she told me to move) She has felt His presence on her in the middle of an MRI going way wrong and His peace laid on her. And when she was in kindergarten, I would ask who she played with and sometime she would just say "Jesus". Yep, and that God is the same God we turn to now. He loves her more than I could ever imagine loving a person. He holds her when I can not, and even tells me to move out of the way. Kasi is God's child, and in that we trust.
I will write more later, I just had to get this one out :-)
I will leave you with this verse that Kasi always claimed as a child.
"My heart and flesh may fail, but God is the strength of my heart and my portion forever"
Ps 73:26
Jodi
I love the fact that people pray for us. This is not our journey alone, but to be shared with all of you the body of Christ! May He bless you too in ways that you know can only be from Him!
Thursday, July 29, 2010
Saturday, July 17, 2010
What a week!
So, I promised an update and here it is. This is a hard one to write because it comes after a long week of dealing with things that were a result of her heart cath/angiogram. On Tuesday evening we ended up in the ER at DeVos because of a hematoma in her belly that came from her procedure. She was in a lot of pain and after a very long night, they found that it was not bleeding anymore which was a blessing, but she will also have to live with the pain for a bit until it dissolves back into her body. We were sent home with instructions which included "if you have a fever of 99.5 or greater" you should return to the ER. Well, wed. night Kasi had a fever of 101. We didn't take her back into the ER that night though, I know, I know....but she was fine! :-) We did end up back at U of M though on Friday to check everything out. Of course when the Dr.s saw her hematoma they couldn't believe that it was were it was at. I guess these things don't ever happen in this place in the body. Well, never say never! We always say, only Kasi. She is already on restrictions so there was nothing really new for her to do or not do.
While we were there Dr. Stanley came in and talked to us to so we wouldn't have to have another trip up there on Monday. YAY!!! What he told us and what we saw in the images were what we saw in the ones from DeVos, but maybe a little better defined and detailed. The narrowings themselves are not super bad, but the pressure difference is the great cause of concern. Her kidneys are kicking out a hormone to boost her blood pressure so they get enough pressure to them. To give her blood pressure meds would be like a dog chasing his tail. It effects the blood pressures everywhere so the kidneys would kick out more hormone and it would go up even more. After a period of time this does do damage to the kidneys. Dr. Stanley did tell us that in order to do this surgery Kasi would have to be open all the way down her belly and across it as well. This surgery has very high risk involved and it seems a long recovery. Dr. Stanley will be talking with her cardiologist on Monday and I will then get a call from him.
Please pray for Kasi as she tries to process all of this. For Ron and I as we try and figure out how we will be doing this. Our family as we all process this. And mostly, for the Dr.s that they will be given wisdom to know absolutely what they are doing before they go in. This is everything BUT routine.
This week has been full of tears for us. Now we look to the future of uncertainty, knowing what is uncertain to us, is certain to God. As for my heart, I trust, believe, and have faith. I am also, still a mom and know that God shares my heart, because He too watched His son suffer.
Kasi is remaining strong, although it is starting to break her down too. This is okay though, she has alot in front of her that she has to think about.
I will update again later......when there is more to update!
Jodi
While we were there Dr. Stanley came in and talked to us to so we wouldn't have to have another trip up there on Monday. YAY!!! What he told us and what we saw in the images were what we saw in the ones from DeVos, but maybe a little better defined and detailed. The narrowings themselves are not super bad, but the pressure difference is the great cause of concern. Her kidneys are kicking out a hormone to boost her blood pressure so they get enough pressure to them. To give her blood pressure meds would be like a dog chasing his tail. It effects the blood pressures everywhere so the kidneys would kick out more hormone and it would go up even more. After a period of time this does do damage to the kidneys. Dr. Stanley did tell us that in order to do this surgery Kasi would have to be open all the way down her belly and across it as well. This surgery has very high risk involved and it seems a long recovery. Dr. Stanley will be talking with her cardiologist on Monday and I will then get a call from him.
Please pray for Kasi as she tries to process all of this. For Ron and I as we try and figure out how we will be doing this. Our family as we all process this. And mostly, for the Dr.s that they will be given wisdom to know absolutely what they are doing before they go in. This is everything BUT routine.
This week has been full of tears for us. Now we look to the future of uncertainty, knowing what is uncertain to us, is certain to God. As for my heart, I trust, believe, and have faith. I am also, still a mom and know that God shares my heart, because He too watched His son suffer.
Kasi is remaining strong, although it is starting to break her down too. This is okay though, she has alot in front of her that she has to think about.
I will update again later......when there is more to update!
Jodi
Thursday, July 8, 2010
today
Well, as today comes to an end we are still not sure if we are staying here at U of M or leaving. My assumption is that we are staying, but they do things differently over here so I am not quite sure. I do have to say I am extremely thankful for DeVos. We are spoiled!!! That is an understatement. The care here is great and the Dr.'s are the best. I am sure it will all change when they get their new children's hospital complete, but that won't be for another year. So, here we are in a room with 4, yep 4, other patience. One of which is a baby and well the lights have been off since about 8.
Kasi is doing well, she just ate for her first time in over 24 hours. She was hungry. She is in some pain this time. They went in up higher than usual. I am thinking it is because she just had a heart cath. in April so they choose a different sight. I am not sure though. She keeps having "hot flashes" or something because she will break out into and extreme sweat which is also weird. Well, we know she is one of a kind.
I am amazed right now at how strong she is. We have a girl next to us who 2 years older than Kasi and she had rods put in her back yesterday. Well, she can't get enough pain meds because she is just in sooo much pain. Her mom came over across the room, about 3 feet, to our side of the curtain, to talk. Kasi started talking on her own which was awesome to see her give out information about recovery. What the mom didn't understand was that Kasi had no pain. It might be a subject to discuss tomorrow :-)
What we have learned the is all the stuff we already kind of knew. She has two narrowings in her aorta. This we kind of knew, but never heard it explained that way. Her kidneys look good and her renal vessels look good too. What is happening is that her kidney are producing a hormone to try to get the correct blood pressure to them. It just so happens that raises her blood pressure all over and that is why she is in hypertension. So, we will see what the Dr. has to say about all of this and see what he is thinking to correct it.
I am tired and wiped out. I will write more later. My emotions wiped me out. Seriously!! This is all too real once again. The smell hit me square in the face when I walked in the door. Too much to handle at times. She is an incredible woman and I am really proud of her! Keep praying for her and for answers....
Love to you all!
Jodi
Kasi is doing well, she just ate for her first time in over 24 hours. She was hungry. She is in some pain this time. They went in up higher than usual. I am thinking it is because she just had a heart cath. in April so they choose a different sight. I am not sure though. She keeps having "hot flashes" or something because she will break out into and extreme sweat which is also weird. Well, we know she is one of a kind.
I am amazed right now at how strong she is. We have a girl next to us who 2 years older than Kasi and she had rods put in her back yesterday. Well, she can't get enough pain meds because she is just in sooo much pain. Her mom came over across the room, about 3 feet, to our side of the curtain, to talk. Kasi started talking on her own which was awesome to see her give out information about recovery. What the mom didn't understand was that Kasi had no pain. It might be a subject to discuss tomorrow :-)
What we have learned the is all the stuff we already kind of knew. She has two narrowings in her aorta. This we kind of knew, but never heard it explained that way. Her kidneys look good and her renal vessels look good too. What is happening is that her kidney are producing a hormone to try to get the correct blood pressure to them. It just so happens that raises her blood pressure all over and that is why she is in hypertension. So, we will see what the Dr. has to say about all of this and see what he is thinking to correct it.
I am tired and wiped out. I will write more later. My emotions wiped me out. Seriously!! This is all too real once again. The smell hit me square in the face when I walked in the door. Too much to handle at times. She is an incredible woman and I am really proud of her! Keep praying for her and for answers....
Love to you all!
Jodi
Wednesday, July 7, 2010
The start of another Journey
Here it is 10:30 the night before a very important trip to U of M hospital. A trip that will hopefully reveal to Dr.'s what they can do to help Kasi live. Yep, I said live, because they way she is right now is not really living. We have been down many roads together and this is a start of yet another journey in her life, and a Journey In Faith.
Right now I am anticipating the things I always do, seeing her lie on the bed, laughing instead of crying. This is because we are very funny people :-) And those of you that know us well, know that we do truly laugh at life. I tell the girls it is a way I can extend their life. We do have fun together. All of that will run through my head and I will then look at her and see a brief tear in her eye through all of mine and give her a kiss and start (continue) to pray for God's hand to go in with her. How silly it must seem to our King that I ask Him and tell Him what I think would be best for her. I long for the day that she can be free from all of this "stuff" and live a normal life as a teenager now. I have said that prayer from birth each time she hits a new milestone of life I thank God for her and praise Him for what He has done for her. As I sit here I wasn't going to write because I felt like "this is sooo not fair" and "why does this always have to be her". Then I think, why not? God will NOT give her or me anymore than we can handle. This is a promise from our Creator. I will live into that promise and we will march forward declaring His goodness of the past and His promise to always love us. He holds her so close, it makes my heart so happy for her. I know God's love for her is so amazing because I have seen the change in her, at times almost like Moses when his face shown because He was in God's presence. I know she doesn't realize it, but it does give me comfort.
So, tomorrow, we will take her in to have another heart cath/angiogram done and pray that it will reveal a way to "fix" her. A way to give her life that she can actually live. We will pray for her safety as this procedure does hold new risks because of how many times she has had this done in the past. We will pray for peace for her heart and mine. We will pray for Ben, yep Ben who has had to have ice cream with the whole family tonight, had to go swimming with the family, and just be with the family tonight. He also asks to see Kasi tomorrow at the hospital, just because he "needs to be with her". His passion for his sister and his wanting to protect her is amazing. I love, love, LOVE to watch my kids together. They truly are a blessing, all of them. I pray that this is the final journey in which we have to travel. I pray we learn all that there is to learn to make us even stronger in Him. I pray that God will get ALL the Glory for the great things He has done and is about to do.
Love to you all,
I will update this tomorrow!
Jodi
One more thing. Please pray for my heart too. This is extremely hard road and knowing what is to come is crazy hard. I am up for any verse that you might have for us.....I know I got one from a dear friend. Be strong and courageous do not be terrified for the Lord YOUR God goes with you where ever you go.....now I will go to sleep singing that song.
Right now I am anticipating the things I always do, seeing her lie on the bed, laughing instead of crying. This is because we are very funny people :-) And those of you that know us well, know that we do truly laugh at life. I tell the girls it is a way I can extend their life. We do have fun together. All of that will run through my head and I will then look at her and see a brief tear in her eye through all of mine and give her a kiss and start (continue) to pray for God's hand to go in with her. How silly it must seem to our King that I ask Him and tell Him what I think would be best for her. I long for the day that she can be free from all of this "stuff" and live a normal life as a teenager now. I have said that prayer from birth each time she hits a new milestone of life I thank God for her and praise Him for what He has done for her. As I sit here I wasn't going to write because I felt like "this is sooo not fair" and "why does this always have to be her". Then I think, why not? God will NOT give her or me anymore than we can handle. This is a promise from our Creator. I will live into that promise and we will march forward declaring His goodness of the past and His promise to always love us. He holds her so close, it makes my heart so happy for her. I know God's love for her is so amazing because I have seen the change in her, at times almost like Moses when his face shown because He was in God's presence. I know she doesn't realize it, but it does give me comfort.
So, tomorrow, we will take her in to have another heart cath/angiogram done and pray that it will reveal a way to "fix" her. A way to give her life that she can actually live. We will pray for her safety as this procedure does hold new risks because of how many times she has had this done in the past. We will pray for peace for her heart and mine. We will pray for Ben, yep Ben who has had to have ice cream with the whole family tonight, had to go swimming with the family, and just be with the family tonight. He also asks to see Kasi tomorrow at the hospital, just because he "needs to be with her". His passion for his sister and his wanting to protect her is amazing. I love, love, LOVE to watch my kids together. They truly are a blessing, all of them. I pray that this is the final journey in which we have to travel. I pray we learn all that there is to learn to make us even stronger in Him. I pray that God will get ALL the Glory for the great things He has done and is about to do.
Love to you all,
I will update this tomorrow!
Jodi
One more thing. Please pray for my heart too. This is extremely hard road and knowing what is to come is crazy hard. I am up for any verse that you might have for us.....I know I got one from a dear friend. Be strong and courageous do not be terrified for the Lord YOUR God goes with you where ever you go.....now I will go to sleep singing that song.
Subscribe to:
Posts (Atom)