When we arrived at U of M early Monday morning I was sure that I'd be able to give daily updates of Kai's progress. I figured that there would be a lot of "down time" and waiting that blogging would be no problem at all. It turns out that 2 year olds and open heart surgery are pretty busy and time consuming!
As many of you are already aware, Kai came out of surgery and into the PTCU (Pediatric Thoracic Cardiac Unit---the cardiac ICU) Monday night. All things considered, he did really well. The surgery appears to be successful---that blood is now able to get to the lung and become oxygenated! With missing anatomy and valves on the right side of his heart, this was a struggle before; so we're so thankful to see oxygen saturation levels that are no longer in the 70s!
Yesterday afternoon those oxygen levels began to drop. We had a small emergency---and found out that the doctors and nurses here can move very fast! Of course, as soon as I posted on Facebook that he was stable and his levels were coming back up where the doctors were comfortable with, they began to drop again. The surgeon came in a few minutes ago and said that this is something we'll be keeping a close eye on today. Another thing that we're watching closely are fluid levels. Kai has quite a bit of fluid around his heart and lung. He has almost 5 pounds of extra fluid in his little body right now. This is diminishing his lung function right now. It also sounds like the catheter that he had taken out yesterday will be going back in sometime this morning. I have a feeling that he is not going to be happy about that! Actually, he hasn't been happy about anything lately. I can't really say I blame him, but last night was ROUGH ---a lot of screaming, thrashing around, etc. He definitely has a lot of "fight" in that little body!
I will do my best to give an update later today or tomorrow morning! Thanks for all of the prayers, emails, messages, etc! We definitely appreciate all of the support that Kai and our family has!
Wednesday, June 10, 2015
Wednesday, June 3, 2015
New Date
Just a really quick update...Kai's surgery will now be on Monday morning. It's difficult emotionally to now prepare for a new date, but we understand that it's what's best. So, look for more updates next week!
Sunday, May 31, 2015
This week...
It's surgery week for this little guy.
Although he's had surgery twice since he's been home with us in November, this is the "big one". The one we've been working up to for the past 6 months. The one that he needs to keep his little body functioning. Our first experience with open heart surgery, as his others have been done in China.
Although we often hear how good he looks and that nobody would ever know something is wrong with him, his little heart cannot sustain any longer. Our reports from the doctors in China indicated that he had approximately 6 months left with his heart in its current condition. Well, those 6 months were up a month ago.
We are constantly amazed at how happy, silly, and animated this little stinker is. What a joy... even when he's a tremendous crab in the morning (Sam has begun to refer to him as Grumpy Cat when he wakes up!). His crazy sense of humor, LOUD laughing, and love of teasing amazes us even more by the fact that he has a cough that won't go away, he's getting "puffy", and his oxygen sats are now constantly in the 70s. He has to feel miserable. But, he just keeps going because it would be horrible to miss out on something, you know?!? Especially if your big brother is doing it or it involves water of any kind.
Anyway, surgery is Friday. I'll spare you all the medical terminology and lingo, but here is an incredibly brief description of Kai's main heart defects:
*Kai was born without a large section of the right side of his heart.
*Because he was born without this part of his heart, he has several valve defects. He is completely missing his pulmonary valve. His tricuspid valve is malformed and underdeveloped.
*His right pulmonary artery is twisted and kinked.
*He has a hole between the right and left atria.
*He has blood vessels growing from where his right ventricle should be and attaching to his coronary artery.
Our pre-op appointment on Friday revealed that his heart cath showed some things that are "alarming" and "of great concern" (as if the defects mentioned above weren't concerning enough!). We will be discussing this and what this means for Friday's surgery this Wednesday (June 3) at another pre-op appointment. If it seems appropriate, we'll update after that appointment. For now, we are going to be using our blog to share appointment, surgery, and recovery updates.
As you read through updates, we would appreciate if you would keep Kai, our family, and his amazing doctors in your thoughts and prayers!
Although he's had surgery twice since he's been home with us in November, this is the "big one". The one we've been working up to for the past 6 months. The one that he needs to keep his little body functioning. Our first experience with open heart surgery, as his others have been done in China.
Although we often hear how good he looks and that nobody would ever know something is wrong with him, his little heart cannot sustain any longer. Our reports from the doctors in China indicated that he had approximately 6 months left with his heart in its current condition. Well, those 6 months were up a month ago.
We are constantly amazed at how happy, silly, and animated this little stinker is. What a joy... even when he's a tremendous crab in the morning (Sam has begun to refer to him as Grumpy Cat when he wakes up!). His crazy sense of humor, LOUD laughing, and love of teasing amazes us even more by the fact that he has a cough that won't go away, he's getting "puffy", and his oxygen sats are now constantly in the 70s. He has to feel miserable. But, he just keeps going because it would be horrible to miss out on something, you know?!? Especially if your big brother is doing it or it involves water of any kind.
Anyway, surgery is Friday. I'll spare you all the medical terminology and lingo, but here is an incredibly brief description of Kai's main heart defects:
*Kai was born without a large section of the right side of his heart.
*Because he was born without this part of his heart, he has several valve defects. He is completely missing his pulmonary valve. His tricuspid valve is malformed and underdeveloped.
*His right pulmonary artery is twisted and kinked.
*He has a hole between the right and left atria.
*He has blood vessels growing from where his right ventricle should be and attaching to his coronary artery.
Our pre-op appointment on Friday revealed that his heart cath showed some things that are "alarming" and "of great concern" (as if the defects mentioned above weren't concerning enough!). We will be discussing this and what this means for Friday's surgery this Wednesday (June 3) at another pre-op appointment. If it seems appropriate, we'll update after that appointment. For now, we are going to be using our blog to share appointment, surgery, and recovery updates.
As you read through updates, we would appreciate if you would keep Kai, our family, and his amazing doctors in your thoughts and prayers!
Monday, April 20, 2015
6 months later...
It's hard to believe that 6 months ago we were in Zhengzhou, China meeting Kai for the very first time and welcoming him into our family. In some ways it feel like so long ago that we were walking into the registration building and seeing his sweet face. In other ways it feels like the time has absolutely flown by so fast and has been a blur. Either way, we just can't imagine life without him in it.
Here he was on October 20, 2014:
Six months, 8 pounds, and 2 surgeries later, here he is now:
To say these 6 months have been a whirlwind would be an understatement! It's been a whirlwind of doctor appointments, hospitalizations, physical therapy, occupational therapy, surgery. It's been a whirlwind of learning how to walk in grass, learning English, playing in snow, riding a bike, making puzzles, jumping in puddles, exploring at the beach. With all of these experiences, it's tough to articulate in words how much, and in what ways, he has changed. How we have changed. So, to be honest, I don't know, right now, that I'm even going to try! Instead, I just want to give you a glimpse into this charismatic and stubborn (good grief is he stubborn!) little fighter.
In his words, here are a few of his "favorites" (as of this morning, anyway!)...
Favorite color: um, red or purple
Favorite food: noodles, Cheerios with milk, cheese, and water. I like water.
Favorite animal: Ellie and Oatmeal and Argyle (translation: our dog and Uncle Mike/Aunt Stef's cats)
Favorite song: Jesus Love Me - the part that Jesus loves me he who prays.
Favorite book: Panda Bear, Panda Bear What Do You See?
Favorite thing to do: go down the slide with Aunt Stef, play cats with Uncle Mike, ride my bike, go on the potty at Ms. Cheryl's house
What don't you like to do: get pokes and ladybugs. Ladybugs are scary.
We know that he will continue to grow and change, especially as we have some big "events" coming up...baptism in May and open heart surgery in June. We should also find out more details about his "wish" through Make-a-Wish soon. Until then, here is a video of our journey these past 6 months:
Here he was on October 20, 2014:
Six months, 8 pounds, and 2 surgeries later, here he is now:
To say these 6 months have been a whirlwind would be an understatement! It's been a whirlwind of doctor appointments, hospitalizations, physical therapy, occupational therapy, surgery. It's been a whirlwind of learning how to walk in grass, learning English, playing in snow, riding a bike, making puzzles, jumping in puddles, exploring at the beach. With all of these experiences, it's tough to articulate in words how much, and in what ways, he has changed. How we have changed. So, to be honest, I don't know, right now, that I'm even going to try! Instead, I just want to give you a glimpse into this charismatic and stubborn (good grief is he stubborn!) little fighter.
In his words, here are a few of his "favorites" (as of this morning, anyway!)...
Favorite color: um, red or purple
Favorite food: noodles, Cheerios with milk, cheese, and water. I like water.
Favorite animal: Ellie and Oatmeal and Argyle (translation: our dog and Uncle Mike/Aunt Stef's cats)
Favorite song: Jesus Love Me - the part that Jesus loves me he who prays.
Favorite book: Panda Bear, Panda Bear What Do You See?
Favorite thing to do: go down the slide with Aunt Stef, play cats with Uncle Mike, ride my bike, go on the potty at Ms. Cheryl's house
What don't you like to do: get pokes and ladybugs. Ladybugs are scary.
We know that he will continue to grow and change, especially as we have some big "events" coming up...baptism in May and open heart surgery in June. We should also find out more details about his "wish" through Make-a-Wish soon. Until then, here is a video of our journey these past 6 months:
Friday, December 5, 2014
Medical update
We have had one crazy week! It seemed like our entire week centered around all things medical. Medical procedures...medical treatments...medical appointments...medical complications...medical plans. It feels like we had a crash course in pediatric cardiology and cardiothoracic surgery. It's enough to make my head spin at this point!
A lot of people have asked about how Kai did this week, so I want to give a quick (relatively speaking, of course!) medical update. However, so not to only focus on his medical condition, I also want to give some update on how he's doing in general.
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A lot of people have asked about how Kai did this week, so I want to give a quick (relatively speaking, of course!) medical update. However, so not to only focus on his medical condition, I also want to give some update on how he's doing in general.
Ok, first the medical side of things...
Kai is diagnosed with multiple heart and pulmonary defects. The primary defects that we are concerned about immediately are the hypoplastic right heart syndrome/pulmonary atresia. This means that his right ventricle is non-functioning (the dr described it as a small muscular mass, not a chamber as it should be), his tricuspid valve is too underdeveloped to function, and he is completely missing his pulmonary valve. Because of these heart defects, Kai was having pressure issues in his right atrium. This was causing residual problems with his left atrium and his liver. His procedures Monday were to help alleviate this. Fortunately, the procedures went well and he was such a tough kid! He has had some complications from the procedure, but he is doing well now. We think these pressure issues are resolved and should be "good to go"!
Kai is diagnosed with multiple heart and pulmonary defects. The primary defects that we are concerned about immediately are the hypoplastic right heart syndrome/pulmonary atresia. This means that his right ventricle is non-functioning (the dr described it as a small muscular mass, not a chamber as it should be), his tricuspid valve is too underdeveloped to function, and he is completely missing his pulmonary valve. Because of these heart defects, Kai was having pressure issues in his right atrium. This was causing residual problems with his left atrium and his liver. His procedures Monday were to help alleviate this. Fortunately, the procedures went well and he was such a tough kid! He has had some complications from the procedure, but he is doing well now. We think these pressure issues are resolved and should be "good to go"!
Our medical plan was to take care of these pressure issues and then schedule his final open heart surgery. But...we found some other issues that we were not aware of and definitely were not planning on. As we met with the surgeon, he showed us pictures of Kai's heart...and told us that our medical/surgical plan will now need to change.
Kai's pulmonary artery, which has the job of carrying deoxygenated from the heart to the lungs, has a fairly large "kink" in it. Here is what it a normal heart looks like:
Here is what Kai's pulmonary artery looks like:
Do you see the difference in the pulmonary arteries?! These are supposed to be straight tubes, not bent in half. With having pulmonary atresia, his little heart already has a tough time getting deoxygenated blood to his lungs. This makes it even trickier! We also found out that he has coronary artery fistulae. Coronary artery fistulae is a congenital condition where the coronary artery abnormally attaches to another blood vessel or heart chamber. Because all of this wasn't enough, we also found out that, because of the combination of Kai's heart defects, his red and blue blood does not have a way to mix. So, the surgeons need to remove part of his atrial wall. Essentially, they will be creating an atrial septal defect (ASD), which is a congenital heart defect where there is a hole between the right and left atrium. Here is what a ASD looks like. The location with labeled with the number 4 is where a hole will be created.
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In a normal heart, this would need to be repaired. But, because of how his heart functions, Kai needs this defect....so because of his heart defects, surgeons are going to create another heart defect! Can you see why my head is spinning?!
In a normal heart, this would need to be repaired. But, because of how his heart functions, Kai needs this defect....so because of his heart defects, surgeons are going to create another heart defect! Can you see why my head is spinning?!
All of this means that we are looking at more surgeries than we expected. His first open heart surgery will be to make the repairs mentioned above. The following surgery will be the more major procedure. It will be to bypass the entire right chambers of his heart.
I know we have a long road ahead of us...but this kiddo is such an inspiration. We've been told on a few occasions that it is a miracle that he is alive. Kiddos with this number of defects and the degree of severity of his defects typically don't survive. Not only is he alive, but he is living...really living!
Here is just a small sample of pictures and videos that show who he is. He is so much more than his heart defects!
Can you tell that he enjoys singing?! He also loves hiking, making puzzles, praying, Sam, dogs... and he has an abnormal obsession with broccoli! Here are just a few pictures of this boy who is full of life!
I know we have a long road ahead of us...but this kiddo is such an inspiration. We've been told on a few occasions that it is a miracle that he is alive. Kiddos with this number of defects and the degree of severity of his defects typically don't survive. Not only is he alive, but he is living...really living!
Here is just a small sample of pictures and videos that show who he is. He is so much more than his heart defects!
He LOVES to sing:
He LOVES to sing about Jesus:
He LOVES to sing with his brother:
Can you tell that he enjoys singing?! He also loves hiking, making puzzles, praying, Sam, dogs... and he has an abnormal obsession with broccoli! Here are just a few pictures of this boy who is full of life!
Sunday, November 9, 2014
Saturday, November 1, 2014
What a difference a week makes
So, in my last post I had to write about the reality that comes with the adoption process. There is a lot of grieving that takes place...and Kai experienced it intensely. We were so excited to see him because we had been looking at his pictures since March. We felt like we already knew him and were living life each day with him in our hearts and minds. He, however, knew nothing of us. He knew only of his facility and the nannies who cared for him. We didn't look like anyone he had ever seen; we didn't speak the same language; we didn't do things the same as the nannies. Realizing that he was leaving them to live with complete strangers was tough. But, it was good. It was good for him to be able to mourn that loss and for us to be part of that with him. It was good for us to see that he had formed strong bonds with the nannies that had cared for him and that he cherished those relationships. Honestly, I would have been more concerned if he showed no emotion at all! We know that his grieving is not done by any means. I know that someday he will grieve not knowing who is birth parents (and not being able to ever find out who they are), where he was born, and so on. It is hard to watch him grieve, but it is necessary for him to go through. I came home from China to a great surprise...and a great reminder (thanks, Christy Boeve!):
But, for now, a week has made all the difference in the world. He is a totally different kiddo than he was last week at this time. His tears and screaming have been replaced by laughing and giggles. His eyes literally twinkle. He sings and sings and sings. I have to try to video him singing "Twinkle, Twinkle Little Star". This was a song that he came to us knowing in English and it melts my heart every time he belts it out. His name, Kai Xin, means "happy"; there could not be a more perfect name for him. Don't get me wrong...he is still a 2 year old boy who is going to test the limits. But, he is just a riot. God has given him such a magnetic personality. You can't help but fall in love with him!
This little guy has been through so much, especially considering his medical issues. We know that when he has had his heart surgeries he was there alone in the hospital most of the time. So, I can only imagine that he associates hospitals and doctors with pain and being alone. I know I would! Well, one of our turning points came last week at his medical exam in Guangzhou. For part of his exam, Chris and I were not allowed to come in the room. When he was brought back out, he kept saying, "Mama, Baba. Mama, Baba" over and over again. I think he was surprised that we were still there, not just dropping him off with doctors to have a procedure done. He needs consistency to know that we will be there for him and that we will meet his needs. I think as he realizes that we are there for him, he trusts us more and more!
Thanks for all of the encouragement and prayers as we welcomed Kai and he welcomed us!
And, of course, I have some more pics to share!
But, for now, a week has made all the difference in the world. He is a totally different kiddo than he was last week at this time. His tears and screaming have been replaced by laughing and giggles. His eyes literally twinkle. He sings and sings and sings. I have to try to video him singing "Twinkle, Twinkle Little Star". This was a song that he came to us knowing in English and it melts my heart every time he belts it out. His name, Kai Xin, means "happy"; there could not be a more perfect name for him. Don't get me wrong...he is still a 2 year old boy who is going to test the limits. But, he is just a riot. God has given him such a magnetic personality. You can't help but fall in love with him!
This little guy has been through so much, especially considering his medical issues. We know that when he has had his heart surgeries he was there alone in the hospital most of the time. So, I can only imagine that he associates hospitals and doctors with pain and being alone. I know I would! Well, one of our turning points came last week at his medical exam in Guangzhou. For part of his exam, Chris and I were not allowed to come in the room. When he was brought back out, he kept saying, "Mama, Baba. Mama, Baba" over and over again. I think he was surprised that we were still there, not just dropping him off with doctors to have a procedure done. He needs consistency to know that we will be there for him and that we will meet his needs. I think as he realizes that we are there for him, he trusts us more and more!
Thanks for all of the encouragement and prayers as we welcomed Kai and he welcomed us!
And, of course, I have some more pics to share!
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