I'm happy to tell you that Nathan's surgery went well! Praise God! His surgery was not an open heart surgery. Like I've mentioned, this is a 3 step process. They went through the side of his chest and put in two shunts. This will route more blood to his lungs thus increasing the oxygen his body gets. Since he was not getting a lot of blood flow through his pulmonary artery, it was smaller than it normally would have been. Now with the extra flow, they expect it to grow. Even though it was small, the surgeon said it was not too small. Yay!
I am in the room with him and there is a noticeable difference in his color. Although all the blueness he had is not completely gone, he does definitely look less blue. His toes actually look pink. He is on a breathing machine for now to see how he does and if all goes well, they will take it out tomorrow morning. Consequently, they are going to keep him sedated. The little guy has moved some and even tried to grab some of his tubing! He's a little feisty even while sedated! Our nurse said that once he realizes that he has some stamina to look out, he's going to be a madman! It is quite astonishing to realize that in his whole life he has never known what it's like to have energy. Praise God that he is getting what he needs so that he can be like other 3 year-old boys. They expect recovery to be 3-5 days.
Oh, the surgical nurse gave me what they used to make the shunt and I will post a picture of it when I charge my camera. Wow, this thing looks so simple and yet it is doing wonders. Eventually, in either the second or third surgery, they will clamp off these shunts. Right now it's just to get him better oxygen levels via better blood flow to the lungs and to grow his pulmonary artery. I think it might actually help his lung to grow too. The left one is smaller than the right since it hasn't had as much blood flowing to it.
In other news, Nathan will be having another MRI next week of his head to see how the abscess is doing. We are praying and hoping that the abscess is still shrinking so that he will not have to have another surgery to drain it. It's just so much for him and if he can avoid another brain surgery, we will be more than happy. I was so happy to see him looking better and then I remember the whole abscess thing and it makes me sad. One part getting better but there are still other issues. One day at a time I guess.
Thanks for all your prayers. We will keep you updated on how he does but so far so good and we are SO THANKFUL! God is GOOD!!!
31 March 2010
Scroll
Scroll down to see the details about tomorrow's surgery (technically today's surgery since it's just after midnight).
30 March 2010
Some Pics
Here are just a few pics, Nathan loves his wagon, I think he wants to stay in this all day.
Details
Nathan's surgery will be at 6:30 tomorrow morning. He was supposed to go a little bit later but the first spot opened up so he was moved up. The surgery is supposed to last about 2 hours with an additional 45 minutes of prep (putting in lines, etc.). Our nurse said that it's possible that Nathan's fingers won't be blue after this surgery. I was surprised by this but would LOVE to see his fingers nice and pink. We'll see. I'll take him getting through the surgery okay and having his oxygen levels in a more stable range. :)
When I checked our blog today, I was blown away by all the wonderful comments. Thank you so much for your prayers, scripture references and support! They meant so much and brought me to tears. Thank you all! We were particularly happy to hear from you, Jimmie. We think about you and Eddie a lot too. I am going to have Richard email you. We would love to hear how Eddie's doing!
Today was a really good day for Nathan. Our nurse took him for a ride in a wagon and he got to go outside. It was actually pretty nice out and it was the first time he's gotten to go outside in a while. It was also the first time he got to go outside without a coat on since coming home in November! The past few days he's gone for rides around the unit but today was definitely special. The pediatric ICU is brand new, probably less than 6 months old and they have a deck with tables and such. I think Nathan really enjoyed it. I have a couple pictures to share of him in the wagon but my camera battery died and the charger is at home. Hopefully, I'll be able to share them soon. Also, I can't wait to show you all the equipment we have to take on these little rides. We are quite the sight!
I just have to mention that we really love the nurses Nathan has. The nurse he had yesterday and today is particularly sweet. She definitely goes above and beyond to make things better for the kids.
Okay, I will let all of you know how things go tomorrow. Thanks so much for standing by us. Your prayers truly mean the world to us.
When I checked our blog today, I was blown away by all the wonderful comments. Thank you so much for your prayers, scripture references and support! They meant so much and brought me to tears. Thank you all! We were particularly happy to hear from you, Jimmie. We think about you and Eddie a lot too. I am going to have Richard email you. We would love to hear how Eddie's doing!
Today was a really good day for Nathan. Our nurse took him for a ride in a wagon and he got to go outside. It was actually pretty nice out and it was the first time he's gotten to go outside in a while. It was also the first time he got to go outside without a coat on since coming home in November! The past few days he's gone for rides around the unit but today was definitely special. The pediatric ICU is brand new, probably less than 6 months old and they have a deck with tables and such. I think Nathan really enjoyed it. I have a couple pictures to share of him in the wagon but my camera battery died and the charger is at home. Hopefully, I'll be able to share them soon. Also, I can't wait to show you all the equipment we have to take on these little rides. We are quite the sight!
I just have to mention that we really love the nurses Nathan has. The nurse he had yesterday and today is particularly sweet. She definitely goes above and beyond to make things better for the kids.
Okay, I will let all of you know how things go tomorrow. Thanks so much for standing by us. Your prayers truly mean the world to us.
28 March 2010
We Have A Date
Sorry for the delay in posting. I am exhausted. I am behind on email too so if I owe you an email, I'm sorry! I will hopefully catch up soon.
I just wanted to let everyone know that Nathan will be having his heart surgery on Wednesday! We are very excited about this. They are not going to wait until 10 days after his cold goes away as he really does need to have it soon. Giving him blood didn't help his oxygen levels that much and he gets worn out pretty quickly now-a-days. Standing up in his crib to pull his pants up will labor his breathing considerably. He will even randomly go to sleep just because his heart and lungs are working so hard. He also isn't that interested in eating much anymore (and our little guy LOVES to eat). They have him on a drip to get nutrients into him. The doctor's and nurses have decided to not do anything that will agitate him. If he gets upset, his oxygen levels go very low. It's hard for Richard and I to realize how sick he is sometimes but one of our nurses spoke with us today and we have a better idea. The type of oxygen levels Nathan has while he's awake (in the 40's and 50's) are levels that would require a breathing tube. She said they typically don't accept anything lower than 70 before putting in a tube. I think our little guy amazes the staff here. He amazes us too because every additional bit of knowledge helps us realize how God continues to sustain him.
We ask that you continue to pray for Nathan, especially on Wednesday. We don't know the time of the surgery yet but I will let you know when we do. Nathan isn't in optimal health to have heart surgery but at this point there is no option to wait. I am happy he is having surgery but as you can imagine, still a bit nervous. This surgery is also just part 1 of 3. The next one will be in 4-8 months we're told.
Thanks for praying, we are so grateful! Also, thanks for your encouraging comments. We read them all!
I just wanted to let everyone know that Nathan will be having his heart surgery on Wednesday! We are very excited about this. They are not going to wait until 10 days after his cold goes away as he really does need to have it soon. Giving him blood didn't help his oxygen levels that much and he gets worn out pretty quickly now-a-days. Standing up in his crib to pull his pants up will labor his breathing considerably. He will even randomly go to sleep just because his heart and lungs are working so hard. He also isn't that interested in eating much anymore (and our little guy LOVES to eat). They have him on a drip to get nutrients into him. The doctor's and nurses have decided to not do anything that will agitate him. If he gets upset, his oxygen levels go very low. It's hard for Richard and I to realize how sick he is sometimes but one of our nurses spoke with us today and we have a better idea. The type of oxygen levels Nathan has while he's awake (in the 40's and 50's) are levels that would require a breathing tube. She said they typically don't accept anything lower than 70 before putting in a tube. I think our little guy amazes the staff here. He amazes us too because every additional bit of knowledge helps us realize how God continues to sustain him.
We ask that you continue to pray for Nathan, especially on Wednesday. We don't know the time of the surgery yet but I will let you know when we do. Nathan isn't in optimal health to have heart surgery but at this point there is no option to wait. I am happy he is having surgery but as you can imagine, still a bit nervous. This surgery is also just part 1 of 3. The next one will be in 4-8 months we're told.
Thanks for praying, we are so grateful! Also, thanks for your encouraging comments. We read them all!
24 March 2010
MRI Results
I FINALLY get to be the bearer of GOOD news and share with you that Nathan's abscess has SHRUNK!! Praise God!!! We were very happy to receive this news, of course. The neurosurgeon will be back tomorrow and we will find out what his recommendation is. He is very conservative so we are hopeful that he will want to wait on surgery. If it were up to our ID doctor, Nathan would have had the surgery already. I don't know what's up with her but she really wants him to have this surgery. The MRI from March 5 indicated that Nathan's abscess had not shrunk at all from the time he was discharged from the hospital in February. The measurement was 4.6cm. When we came back to the hospital on March 12 because of the stroke they decided to do another MRI, which took place on March 13. Apparently, the abscess from that MRI measured 4.1cm. We were never told about this shrinkage. I would like to assume that they were mostly focused on the stroke and that it was an oversight. The MRI he had yesterday indicated the abscess measured 3.9cm. We are just so thankful for all your prayers. God is so good and we believe He will continue to shrink this thing. I couldn't be happier with how much it has gone down in a mere 18 days after having not budged in several weeks. At this rate it will be gone long before our ID doc's prediction of 1 year.
Nathan is still having issues with his oxygen levels. After a couple days of asking about his hemoglobin levels and questioning whether or not they've taken too much blood and getting nowhere, one mention to our cardiologist and the next thing we know, Nathan is getting blood. This was a little frustrating to us. Whenever we mentioned this, most of the docs on the floor would act like his hemoglobin was fine (and it is actually high for someone with a healthy heart). But it's not fine for Nathan and thankfully, our cardiologist gets things done. Nathan is on oxygen and for the past couple of days he could barely eat without his oxygen levels dipping low enough to need an additional oxygen mask. He is hanging out in the 50's and 60's which is definitely below his baseline. However, when he eats or gets out of bed or even exerts much energy, he is going down to the 30's. The only time he is doing normal for him is when he is sleeping!
Also, if you can believe this, Nathan has tested positive for the common cold. You wouldn't think this could be possible with all the medicine he gets. Anyway, our cardiologist said they will not do his heart surgery until 10 days after his cold is gone (I would assume this would be the case for his brain surgery but hopefully that's not an issue). I completely understand this but goodness, we just want him to get this repair. We are hoping that if they decide not to do the brain surgery that maybe he could be stabilized enough to go home and then he could come back for his heart surgery.
A couple more things, we're still worried that Nathan is being traumatized here. I think he feels like he has no control over what people do to him and maybe feels like we don't even help him. He is "passing out" for the slightest things. If strange people come into the room and start to do anything to him, he screams and then just goes to "sleep." It's hard to know if this has anything to do with his oxygen intake but he never used to do this. It started with being stuck by the needles so often and now he does it more frequently. He had an echocardiogram today and did it then. That's just an ultrasound of the heart so it doesn't hurt at all. It's just people can do whatever they want to him (from his perspective) and he has no say. Again, he doesn't know that he's sick and needs these things. Please pray for his emotional state.
It also looks like he might be getting the same type of rash around his new line that he got around his old one. Not good! We need this line in and I don't know what they will want to do if it gets really bad. Not to mention the fact that it is awfully uncomfortable to have itching and/or pain to deal with. This little boy has had so much to deal with.
Again, thanks for praying. We are so thankful for every single prayer said on our behalf. We know that there are many of you praying, even if we don't know you personally.
On my way home with Isabel last night we were listening to, "You Never Let Go" by Matt Redman singing up a storm of praise for God's goodness. We have our rough spots but we never question God's love for us and for Nathan. Here are the lyrics. Maybe they will be an encouragement to you.
Matt Redman - You Never Let Go
Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I’m caught in the middle of the storms of this life
I won’t turn back
I know You are near
And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?
Chorus:
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me
And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We’ll live to know You here on the earth
Chorus:
Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You
Nathan is still having issues with his oxygen levels. After a couple days of asking about his hemoglobin levels and questioning whether or not they've taken too much blood and getting nowhere, one mention to our cardiologist and the next thing we know, Nathan is getting blood. This was a little frustrating to us. Whenever we mentioned this, most of the docs on the floor would act like his hemoglobin was fine (and it is actually high for someone with a healthy heart). But it's not fine for Nathan and thankfully, our cardiologist gets things done. Nathan is on oxygen and for the past couple of days he could barely eat without his oxygen levels dipping low enough to need an additional oxygen mask. He is hanging out in the 50's and 60's which is definitely below his baseline. However, when he eats or gets out of bed or even exerts much energy, he is going down to the 30's. The only time he is doing normal for him is when he is sleeping!
Also, if you can believe this, Nathan has tested positive for the common cold. You wouldn't think this could be possible with all the medicine he gets. Anyway, our cardiologist said they will not do his heart surgery until 10 days after his cold is gone (I would assume this would be the case for his brain surgery but hopefully that's not an issue). I completely understand this but goodness, we just want him to get this repair. We are hoping that if they decide not to do the brain surgery that maybe he could be stabilized enough to go home and then he could come back for his heart surgery.
A couple more things, we're still worried that Nathan is being traumatized here. I think he feels like he has no control over what people do to him and maybe feels like we don't even help him. He is "passing out" for the slightest things. If strange people come into the room and start to do anything to him, he screams and then just goes to "sleep." It's hard to know if this has anything to do with his oxygen intake but he never used to do this. It started with being stuck by the needles so often and now he does it more frequently. He had an echocardiogram today and did it then. That's just an ultrasound of the heart so it doesn't hurt at all. It's just people can do whatever they want to him (from his perspective) and he has no say. Again, he doesn't know that he's sick and needs these things. Please pray for his emotional state.
It also looks like he might be getting the same type of rash around his new line that he got around his old one. Not good! We need this line in and I don't know what they will want to do if it gets really bad. Not to mention the fact that it is awfully uncomfortable to have itching and/or pain to deal with. This little boy has had so much to deal with.
Again, thanks for praying. We are so thankful for every single prayer said on our behalf. We know that there are many of you praying, even if we don't know you personally.
On my way home with Isabel last night we were listening to, "You Never Let Go" by Matt Redman singing up a storm of praise for God's goodness. We have our rough spots but we never question God's love for us and for Nathan. Here are the lyrics. Maybe they will be an encouragement to you.
Matt Redman - You Never Let Go
Even though I walk through the valley of the shadow of death
Your perfect love is casting out fear
And even when I’m caught in the middle of the storms of this life
I won’t turn back
I know You are near
And I will fear no evil
For my God is with me
And if my God is with me
Whom then shall I fear?
Whom then shall I fear?
Chorus:
Oh no, You never let go
Through the calm and through the storm
Oh no, You never let go
In every high and every low
Oh no, You never let go
Lord, You never let go of me
And I can see a light that is coming for the heart that holds on
A glorious light beyond all compare
And there will be an end to these troubles
But until that day comes
We’ll live to know You here on the earth
Chorus:
Yes, I can see a light that is coming for the heart that holds on
And there will be an end to these troubles
But until that day comes
Still I will praise You, still I will praise You
22 March 2010
Another Something
Well, it's been a few day's since I've posted an update. On Thursday, Nathan got another line put in so that they can draw blood along with administer antibiotics and such. It's is actually tunneled from the crease of his leg into his abdominal area which is where it comes out. The cardiologists did not want another line put in his arms so that they can preserve his veins and arteries for his cardiac surgery. We are so happy that he has this new line because he was understandably not tolerating getting stuck every time they needed blood. And they needed blood a lot. They needed to check it every 4 hours until his blood thinner was in the proper range. Incidentally, he needs more than double the amount of blood thinner a person of his size would need to get into the right range. I think that threw the hematologist for a loop.
While Nathan did have a couple of IV's in, the one they could use to draw blood eventually stopped giving blood so that is why he needed to be stuck so much. After a while, he started passing out when they drew blood. The neurologist thinks it might have been due to trauma but I've heard this can happen so hopefully, he's not too scarred.
They've also put Nathan back on the antibiotic that he is allergic to. It creates a rash but it's the best one for his brain infection. Right now they think they can deal with the rash because the infection is more important. Nathan has had some rough nights with itching and not being able to sleep well. He is now on many creams and antihistamines to combat the rash. They have helped but he's not without discomfort. Poor boy.
Until yesterday we felt like we were in "waiting mode" for his brain surgery (or at least the MRI which we are of course praying will shrink and he won't NEED brain surgery) while the blood thinner was working to prevent new clots. Well, two episodes took place that indicated that he might be having some additional issues. Yesterday around 5:00PM and also around 9:00PM this evening, Nathan had a very agitated episode where it appeared he was having a tantrum and then his oxygen level plummeted. This behavior change seemingly came out of nowhere. Yesterday he went down into single digits and turned gray! Today he went down very close to single digits. For those of you who aren't aware what that means, it's the level of oxygen our body gets. For those of us with a healthy heart, our levels would run in the high 90's. Nathan's baseline is in the 70's. Yeah, single digits is scary stuff! Both times they increased his oxygen and put an additional mask on him until the level came up. He had a chest x-ray after this happened yesterday and they drew blood to check some gas levels. The blood came back perfect and I haven't heard about the x-ray. If there was an issue, we would have heard about it. They believe this is a cardiac issue.
Today they wanted to do an MRI to make sure there were no additional strokes based on yesterday's episode. Nathan had to fast until 4:00PM and then they came in and told us they were going to do it tomorrow. Let's just say I was a little more than annoyed that they made a 3 year-old wait to eat only to postpone it until tomorrow. Then, right after we fed him, they called and changed their mind. Nice. So now he has to fast tomorrow. I guess this whole thing stemmed from what happened when he got his new line. Everything went smoothly until they were taking him out of the sedation and his oxygen levels went down (into the 40's). I think they wanted more people around just in case something happened and they needed them. I don't get much of it because I think you can decide before 4:00 what you need and if you can get it. That's just me. I am of course pretty far removed from that type of decision making.
So, that's where we're at right now. Richard and I are confused about why Nathan is having these oxygen issues. We think they might be taking too much blood again but once we posed that question to the doctor's on the floor, we were reassured that wasn't the case. I asked our nurse his hemoglobin level and it is lower than what our ID doctor wants so I will be asking the ID doc about it tomorrow morning. Our specialists are good but sometimes the doctors on the floor aren't AS familiar with every detail of Nathan's case (which would be difficult because there are several patients they have to know about).
Thanks so much for your prayers. I hope we get GREAT news about Nathan's MRI tomorrow. I will let you know what we find out.
Take care.
While Nathan did have a couple of IV's in, the one they could use to draw blood eventually stopped giving blood so that is why he needed to be stuck so much. After a while, he started passing out when they drew blood. The neurologist thinks it might have been due to trauma but I've heard this can happen so hopefully, he's not too scarred.
They've also put Nathan back on the antibiotic that he is allergic to. It creates a rash but it's the best one for his brain infection. Right now they think they can deal with the rash because the infection is more important. Nathan has had some rough nights with itching and not being able to sleep well. He is now on many creams and antihistamines to combat the rash. They have helped but he's not without discomfort. Poor boy.
Until yesterday we felt like we were in "waiting mode" for his brain surgery (or at least the MRI which we are of course praying will shrink and he won't NEED brain surgery) while the blood thinner was working to prevent new clots. Well, two episodes took place that indicated that he might be having some additional issues. Yesterday around 5:00PM and also around 9:00PM this evening, Nathan had a very agitated episode where it appeared he was having a tantrum and then his oxygen level plummeted. This behavior change seemingly came out of nowhere. Yesterday he went down into single digits and turned gray! Today he went down very close to single digits. For those of you who aren't aware what that means, it's the level of oxygen our body gets. For those of us with a healthy heart, our levels would run in the high 90's. Nathan's baseline is in the 70's. Yeah, single digits is scary stuff! Both times they increased his oxygen and put an additional mask on him until the level came up. He had a chest x-ray after this happened yesterday and they drew blood to check some gas levels. The blood came back perfect and I haven't heard about the x-ray. If there was an issue, we would have heard about it. They believe this is a cardiac issue.
Today they wanted to do an MRI to make sure there were no additional strokes based on yesterday's episode. Nathan had to fast until 4:00PM and then they came in and told us they were going to do it tomorrow. Let's just say I was a little more than annoyed that they made a 3 year-old wait to eat only to postpone it until tomorrow. Then, right after we fed him, they called and changed their mind. Nice. So now he has to fast tomorrow. I guess this whole thing stemmed from what happened when he got his new line. Everything went smoothly until they were taking him out of the sedation and his oxygen levels went down (into the 40's). I think they wanted more people around just in case something happened and they needed them. I don't get much of it because I think you can decide before 4:00 what you need and if you can get it. That's just me. I am of course pretty far removed from that type of decision making.
So, that's where we're at right now. Richard and I are confused about why Nathan is having these oxygen issues. We think they might be taking too much blood again but once we posed that question to the doctor's on the floor, we were reassured that wasn't the case. I asked our nurse his hemoglobin level and it is lower than what our ID doctor wants so I will be asking the ID doc about it tomorrow morning. Our specialists are good but sometimes the doctors on the floor aren't AS familiar with every detail of Nathan's case (which would be difficult because there are several patients they have to know about).
Thanks so much for your prayers. I hope we get GREAT news about Nathan's MRI tomorrow. I will let you know what we find out.
Take care.
20 March 2010
Thanks for praying for us
Nathan is being pumped with medicine and he is breaking out in rashes. He is very aggravated and has his unique way of asking for help. This basically means, it is better to stay up and not even try to fall asleep, I am less frustrated if I just plan to stay up. I allowed the thought about how could we go through this for the next four weeks to dance in my head, but then I realized that this is the selfish part of me that needs to die and be replaced with a passion for the love of Jesus. I am so sadden by how selfish I am and how much I try to make my life comfortable.
So I thank everyone who are praying for us, because of your prayers it is 2 am in the morning and I am watching the second video from http://www.brookhills.org/media/series/radical/ which is titled The Gospel Demands Radical Sacrifice. So I ask for more of your prayers not for sleep at night, but to experience a passionate love for Jesus and for that love to flow and to touch other people's lives allowing them to experience this amazing relationship with Jesus. A relationship with Jesus is what brings true joy, I can say that this experience although very difficult brings a joy from deep down in my heart, a joy so special that I have a hard time comprehending it.
Also continue to pray for Nathan that he would not experience any pain or rashes. We are praying that his infection decreases in size so that they would wait on the brain surgery.
I will let you know how the rest of the videos go.
We love you all and thank you for walking with us.
18 March 2010
Pics
Here are some recent pictures of the kids.
This pic is of Nathan after his first surgery and after our first release from the hospital (the one that lasted 20 hours). I took this not long before we went back because of his fever.
These were taken on March 9, three days before his stroke. They're not the greatest but he was doing really well then. Isabel loves doing puzzles and we're hoping Nathan starts too as well. :)
This was taken with Richard's phone. Isabel jumped into Nathan's crib in the hospital. I think it was taken Monday. It looked cute at the time but Nathan does look pretty sick in this one. Or maybe he just isn't too thrilled with big sis in his bed.
So, I took a couple pictures a few minutes ago so that you can see he is a little better. Actually, these pictures look like he isn't sick at all! Richard was playing with him off to the side to get him to laugh.
This pic is of Nathan after his first surgery and after our first release from the hospital (the one that lasted 20 hours). I took this not long before we went back because of his fever.
These were taken on March 9, three days before his stroke. They're not the greatest but he was doing really well then. Isabel loves doing puzzles and we're hoping Nathan starts too as well. :)
This was taken with Richard's phone. Isabel jumped into Nathan's crib in the hospital. I think it was taken Monday. It looked cute at the time but Nathan does look pretty sick in this one. Or maybe he just isn't too thrilled with big sis in his bed.
So, I took a couple pictures a few minutes ago so that you can see he is a little better. Actually, these pictures look like he isn't sick at all! Richard was playing with him off to the side to get him to laugh.
17 March 2010
A Heavy Day
This morning all the major doctors who are treating Nathan had a meeting to discuss the best plan to get him better. This included his cardiologist, hematologist, neurologist/neurosurgery, infectious disease and ICU. They came up with a plan and our cardiologist sat with Richard and I and discussed what they decided. Each of these doctors have competing priorities. The hematologist is trying to make sure Nathan doesn't have any more strokes. The infections disease doctors along with neurology want to treat his brain abscess and cardiology wants to repair his heart. In an ideal world, the hematologist would want 6 months to treat Nathan with an anticoagulant. Then ID and neurology would want to treat Nathan for the abscess 6-9 months, if not a year. Then he would be ready for his heart repair. Unfortunately, things are not ideal. If Nathan does not get his heart fixed, he is at risk for strokes and infection. So, the plan is for Nathan to have his abscess drained next Thursday or Friday. This gives the hematologist about two weeks from Nathan's initial stroke to treat/thin his blood. This past Monday, they were actually thinking of doing this surgery yesterday but the hematologist wanted to wait. He said that having a stroke is like an earthquake where after the initial one, there are aftershocks. He wanted at least a week or two to treat him before any type of surgery. If things go well with the draining, they plan on doing his initial heart surgery March 31. He will need 7-10 days to recover from that.
Right before Nathan has his abscess drained, the neurosurgeon will have him go for an MRI. If the abscess has shrunk considerably, they will most likely NOT do the surgery and plan on doing his heart surgery instead (not the same day). Dear friends, this is what we are praying for. Of all the procedures Nathan needs done, they are most nervous about draining the abscess since it is in his brain. Especially since he just had a stroke he is at risk for bleeding in his brain. The first 24-48 hours after the surgery is the most crucial.
Tomorrow Nathan will have a procedure to put a port in his hip area (not sure on the exact spot) so they/we can administer his IV antibiotic and also to draw blood. We are thankful for this as Nathan has been stuck quite a few times to get blood. They need to do this frequently so that they can tell how well the anticoagulant is working. He has two IV's placed but one is for the anticoagulant drip and the other has stopped giving blood for the most part. Sometimes they can get it but it's hit or miss. They are not going to put another PICC into any of the arteries so that they preserve those for what the cardiologists want to do when it comes time to start his heart repair. We will most likely be in the ICU for 3-4 weeks, if not longer for all of these things to be done.
As you can imagine, this was a hard day. I'm still kind of processing all of this. Richard is handling this much better than me but for those of you that know both of us, you could imagine that would be the case. For those of you who don't, Richard is laid back and super optimistic. Apparently though, the doctor's think we are doing a wonderful job with the news so I guess I can put up a good front sometimes. The tongue-biting to keep from crying in front of the cardiologist really worked for me. :)
On a positive note, Nathan had a good day. Some of the issues I mentioned in a previous post about his speech and coordination have subsided. He is talking like he used to and he is nearly back to normal physically. Being in a bed for a few days has weakened his legs but he's no longer leaning over and his coordination is a lot better. His rash where the PICC line was is also doing better.
This next week is a crucial time for prayer and I would love nothing more than for Nathan to go for his MRI and in 30 minutes get rolled back into his room bypassing a risky surgery thanks to our awesome God. Our cardiologist even mentioned that if by some miracle Nathan's abscess has shrunk considerably, that she is certain the neurosurgeon would want to wait on surgery. I think she opened the door with that comment! :)
I appreciate all your prayers. I don't know how to convey how much they mean to us except to just thank you for keeping Nathan and all of us in your prayers.
I have been trying to remember to post a few updated pictures of the kids from last week before all of this started. I keep forgetting to bring my camera to the hospital. Hopefully soon. I know you'd like to see Nathan and how well he was doing last week. I haven't posted any pics since China. Also, Richard has a couple pics on his phone of Isabel and Nathan in his crib in the hospital. They're pretty cute too. Hopefully, tomorrow.
Good night.
Right before Nathan has his abscess drained, the neurosurgeon will have him go for an MRI. If the abscess has shrunk considerably, they will most likely NOT do the surgery and plan on doing his heart surgery instead (not the same day). Dear friends, this is what we are praying for. Of all the procedures Nathan needs done, they are most nervous about draining the abscess since it is in his brain. Especially since he just had a stroke he is at risk for bleeding in his brain. The first 24-48 hours after the surgery is the most crucial.
Tomorrow Nathan will have a procedure to put a port in his hip area (not sure on the exact spot) so they/we can administer his IV antibiotic and also to draw blood. We are thankful for this as Nathan has been stuck quite a few times to get blood. They need to do this frequently so that they can tell how well the anticoagulant is working. He has two IV's placed but one is for the anticoagulant drip and the other has stopped giving blood for the most part. Sometimes they can get it but it's hit or miss. They are not going to put another PICC into any of the arteries so that they preserve those for what the cardiologists want to do when it comes time to start his heart repair. We will most likely be in the ICU for 3-4 weeks, if not longer for all of these things to be done.
As you can imagine, this was a hard day. I'm still kind of processing all of this. Richard is handling this much better than me but for those of you that know both of us, you could imagine that would be the case. For those of you who don't, Richard is laid back and super optimistic. Apparently though, the doctor's think we are doing a wonderful job with the news so I guess I can put up a good front sometimes. The tongue-biting to keep from crying in front of the cardiologist really worked for me. :)
On a positive note, Nathan had a good day. Some of the issues I mentioned in a previous post about his speech and coordination have subsided. He is talking like he used to and he is nearly back to normal physically. Being in a bed for a few days has weakened his legs but he's no longer leaning over and his coordination is a lot better. His rash where the PICC line was is also doing better.
This next week is a crucial time for prayer and I would love nothing more than for Nathan to go for his MRI and in 30 minutes get rolled back into his room bypassing a risky surgery thanks to our awesome God. Our cardiologist even mentioned that if by some miracle Nathan's abscess has shrunk considerably, that she is certain the neurosurgeon would want to wait on surgery. I think she opened the door with that comment! :)
I appreciate all your prayers. I don't know how to convey how much they mean to us except to just thank you for keeping Nathan and all of us in your prayers.
I have been trying to remember to post a few updated pictures of the kids from last week before all of this started. I keep forgetting to bring my camera to the hospital. Hopefully soon. I know you'd like to see Nathan and how well he was doing last week. I haven't posted any pics since China. Also, Richard has a couple pics on his phone of Isabel and Nathan in his crib in the hospital. They're pretty cute too. Hopefully, tomorrow.
Good night.
15 March 2010
Monday's Update
A few things are going on with Nathan. First, he had to have his PICC line removed today. He developed a rash under the dressing a little over a week ago and it got really bad. Last night it was oozing and overnight they even had to change the dressing. This afternoon he starting complaining about it a lot, saying, "owie" over and over. They finally took it out which is both good and bad. Not having it there will give the skin a chance to heal but now he had to have two IV's placed.
A second thing is that we noticed he is having a bad reaction to one of the antibiotics he is on. It makes him really fidgety and his behavior is erratic. We barely noticed it at first because he was also on Benadryl which makes him sleepy. But last night he woke up all night long and this evening it was very apparent that he was not acting normal. I neglected to mention in my last post that he developed another rash over most of his torso last week that progressively got worse. While in the hospital they took him off the antibiotic that he was taking at home along with his anti-seizure medicine and it cleared up well. They don't know which of the two medicines are responsible for the rash but he needs both of them so I am not sure how they will proceed. That is the reason he is on a different antibiotic, the one causing this behavioral reaction.
Thankfully, Nathan has had no additional strokes since yesterday afternoon. He had an ultrasound of his extremities to check for the clotting source. He also had an EEG to check his brain activity. We haven't gotten the results of either of these tests yet.
One thing I will mention is that I am very worried about Nathan's emotional well-being. I ask that you pray for him. He doesn't have the vocabulary to express his feelings and I can't imagine how difficult that must be. Richard and I have noticed signs of regression. I don't even know if he trusts us. From his perspective, given all he's gone through, I don't think I would blame him. In his mind all we've done as his parents is to take him to one painful experience after another. He doesn't understand that we are just trying to get him better. He doesn't know how sick he is or what this all means. For any child this is a lot to handle, but more so I think for someone who's just experienced the biggest transition of their lives - being adopted by strangers into a foreign country. We try to comfort him as much as we can but there's only so much we can do.
Finally, we learned today that it might take a year to get better from his abscess and be in a position to have heart surgery. I haven't spoken with the cardiologist yet but I am worried that is too far off. Ultimately, his heart is the reason he is having these other issues.
Thanks for praying. We are so grateful!
A second thing is that we noticed he is having a bad reaction to one of the antibiotics he is on. It makes him really fidgety and his behavior is erratic. We barely noticed it at first because he was also on Benadryl which makes him sleepy. But last night he woke up all night long and this evening it was very apparent that he was not acting normal. I neglected to mention in my last post that he developed another rash over most of his torso last week that progressively got worse. While in the hospital they took him off the antibiotic that he was taking at home along with his anti-seizure medicine and it cleared up well. They don't know which of the two medicines are responsible for the rash but he needs both of them so I am not sure how they will proceed. That is the reason he is on a different antibiotic, the one causing this behavioral reaction.
Thankfully, Nathan has had no additional strokes since yesterday afternoon. He had an ultrasound of his extremities to check for the clotting source. He also had an EEG to check his brain activity. We haven't gotten the results of either of these tests yet.
One thing I will mention is that I am very worried about Nathan's emotional well-being. I ask that you pray for him. He doesn't have the vocabulary to express his feelings and I can't imagine how difficult that must be. Richard and I have noticed signs of regression. I don't even know if he trusts us. From his perspective, given all he's gone through, I don't think I would blame him. In his mind all we've done as his parents is to take him to one painful experience after another. He doesn't understand that we are just trying to get him better. He doesn't know how sick he is or what this all means. For any child this is a lot to handle, but more so I think for someone who's just experienced the biggest transition of their lives - being adopted by strangers into a foreign country. We try to comfort him as much as we can but there's only so much we can do.
Finally, we learned today that it might take a year to get better from his abscess and be in a position to have heart surgery. I haven't spoken with the cardiologist yet but I am worried that is too far off. Ultimately, his heart is the reason he is having these other issues.
Thanks for praying. We are so grateful!
14 March 2010
A Lot Going On
I wanted to post an update regarding our doctor's appointments on the 8th and 9th but so much has happened that I haven't had a chance.
We had a cardiologist appointment on the 8th and they did an echocardiogram and everything looked really good. The bacteria on his aortic valve seemed to be barely noticeable as well which was good news. On the 9th we had appointments with both infectious disease and the neurosurgeon. This is when we found out the results of the MRI Nathan had on the 5th. Apparently, the abscess hasn't gotten any smaller. Both doctor's seemed really surprised with how well Nathan was doing given the results. I think they both feel like the abscess needs to be drained but the neurosurgeon especially wanted to wait since Nathan was doing so well. He was scheduled to have another MRI on the 19th with another appointment with the neurosurgeon a week later but unfortunately, Nathan is now in the hospital.
On Thursday evening, Nathan pulled out his PICC line about 4cm. He was laying in bed and we heard him scream. The end of the line was sutured to his arm and those broke. We don't think this was intentional because he doesn't like to know that his PICC line exists but we're not sure what happened. It's possible he was chewing on it and pulled his arm. We don't know. We called our home care nurse and she came out and looked at it. By the next morning, our doctor had set up a chest x-ray to determine what was going on with the PICC. We went into the hospital and they decided to change it. They changed it out with no problems and we were home by 3:30 in the afternoon on Friday. Less than two hours later, we started to realize that Nathan couldn't see us. He wasn't focusing his eyes on us so we started to test his sight but putting our hands close to his face to see if he would blink or flinch. He didn't do any of this. We called the doctor and while we were waiting for her to call us back, Nathan layed down on the sofa and his eyes started to roll back. We thought he might start having a seizure so we called for an ambulance and they took us to the hospital.
Once in the ER, Nathan regained his sight but he was understandably irritable. Overnight into Saturday he did fine and actually did well most of Saturday. He had an MRI on Saturday and that determined that the episode on Friday night was a stroke. A blood clot from somewhere in his body traveled up to his brain and blocked blood flow and consequently oxygen to that portion of his brain. Then around 7:00PM on Saturday he had another one. He was then moved into the ICU. Since then, he had three more strokes overnight and one this afternoon. They are calling them mini-strokes and apparently they are to be expected. They put him on an anticoagulation drug to thin his blood to prevent further clot formation.
Today, they checked his heart to see if that was the origin of the blood clots and they found his heart to be fine. He also had a CT scan today but we haven't gotten the results of that yet. They are going to do some ultrasound-type test to check for blood clots in his extremities. The hematologist mentioned that his PICC line could be the source of his clots and although we have no evidence to support that, I think that might actually be the issue. I hope he doesn't need to have it taken out because that is how he gets the antibiotics to treat his brain abscess. They are also planning on doing an EEG to check his brain activity.
Okay, that's a lot of information. And if you can believe it, I'm sure I am leaving something out.
As far as how Nathan is doing, he is not quite himself. He perpetually leans over somewhat and his coordination is not quite normal. The left side of his face droops a tiny bit. His speech, although it was never perfect, is a little worse. It is really hard to watch him. But I read something last night that really spoke to me. We are not here to live a comfortable life. Although I know this, I sometimes need to be reminded. Sometimes I start focusing on myself and how hard this is for me. Yeah, that's selfish because Nathan is the one who's suffering. Thankfully, God puts me back on the right path and shows me that this isn't about me but Him. It's about giving up your life to live a life that's infinitely more rewarding.
Oh, a couple cute things about Isabel. She is doing so great by the way. Amazing actually. When we got to the ER, a girl took her to the waiting room to make some necklaces and the girl asked her if her brother came to the hospital in an ambulance and Isabel told her, "No, he came from China." So cute. Then last night while Nathan was having his episode and they took him over to ICU, I was crying and Isabel was telling me that it was okay. I told her we needed to pray for Nathan because he was sick so she told me that she would pray. Here is what she said, "Dear God, please help mommy stop crying. She always cries when Nathan is sick. Please help Nathan to get better. In Jesus' name, Amen."
Amen
We had a cardiologist appointment on the 8th and they did an echocardiogram and everything looked really good. The bacteria on his aortic valve seemed to be barely noticeable as well which was good news. On the 9th we had appointments with both infectious disease and the neurosurgeon. This is when we found out the results of the MRI Nathan had on the 5th. Apparently, the abscess hasn't gotten any smaller. Both doctor's seemed really surprised with how well Nathan was doing given the results. I think they both feel like the abscess needs to be drained but the neurosurgeon especially wanted to wait since Nathan was doing so well. He was scheduled to have another MRI on the 19th with another appointment with the neurosurgeon a week later but unfortunately, Nathan is now in the hospital.
On Thursday evening, Nathan pulled out his PICC line about 4cm. He was laying in bed and we heard him scream. The end of the line was sutured to his arm and those broke. We don't think this was intentional because he doesn't like to know that his PICC line exists but we're not sure what happened. It's possible he was chewing on it and pulled his arm. We don't know. We called our home care nurse and she came out and looked at it. By the next morning, our doctor had set up a chest x-ray to determine what was going on with the PICC. We went into the hospital and they decided to change it. They changed it out with no problems and we were home by 3:30 in the afternoon on Friday. Less than two hours later, we started to realize that Nathan couldn't see us. He wasn't focusing his eyes on us so we started to test his sight but putting our hands close to his face to see if he would blink or flinch. He didn't do any of this. We called the doctor and while we were waiting for her to call us back, Nathan layed down on the sofa and his eyes started to roll back. We thought he might start having a seizure so we called for an ambulance and they took us to the hospital.
Once in the ER, Nathan regained his sight but he was understandably irritable. Overnight into Saturday he did fine and actually did well most of Saturday. He had an MRI on Saturday and that determined that the episode on Friday night was a stroke. A blood clot from somewhere in his body traveled up to his brain and blocked blood flow and consequently oxygen to that portion of his brain. Then around 7:00PM on Saturday he had another one. He was then moved into the ICU. Since then, he had three more strokes overnight and one this afternoon. They are calling them mini-strokes and apparently they are to be expected. They put him on an anticoagulation drug to thin his blood to prevent further clot formation.
Today, they checked his heart to see if that was the origin of the blood clots and they found his heart to be fine. He also had a CT scan today but we haven't gotten the results of that yet. They are going to do some ultrasound-type test to check for blood clots in his extremities. The hematologist mentioned that his PICC line could be the source of his clots and although we have no evidence to support that, I think that might actually be the issue. I hope he doesn't need to have it taken out because that is how he gets the antibiotics to treat his brain abscess. They are also planning on doing an EEG to check his brain activity.
Okay, that's a lot of information. And if you can believe it, I'm sure I am leaving something out.
As far as how Nathan is doing, he is not quite himself. He perpetually leans over somewhat and his coordination is not quite normal. The left side of his face droops a tiny bit. His speech, although it was never perfect, is a little worse. It is really hard to watch him. But I read something last night that really spoke to me. We are not here to live a comfortable life. Although I know this, I sometimes need to be reminded. Sometimes I start focusing on myself and how hard this is for me. Yeah, that's selfish because Nathan is the one who's suffering. Thankfully, God puts me back on the right path and shows me that this isn't about me but Him. It's about giving up your life to live a life that's infinitely more rewarding.
Oh, a couple cute things about Isabel. She is doing so great by the way. Amazing actually. When we got to the ER, a girl took her to the waiting room to make some necklaces and the girl asked her if her brother came to the hospital in an ambulance and Isabel told her, "No, he came from China." So cute. Then last night while Nathan was having his episode and they took him over to ICU, I was crying and Isabel was telling me that it was okay. I told her we needed to pray for Nathan because he was sick so she told me that she would pray. Here is what she said, "Dear God, please help mommy stop crying. She always cries when Nathan is sick. Please help Nathan to get better. In Jesus' name, Amen."
Amen
01 March 2010
No News is Good News!
I'm sorry it's taken me so long to update everyone. There actually hasn't been much to say. Nathan has not had a fever that required us to take him back to the hospital! We are so grateful for that. It is so nice being home and having a normal routine.
Nathan is also doing a lot better walking and using his right hand/arm. When we first got home he was very unsteady on his feet. A lot of it had to do with the surgery but I think maybe not walking for nearly 3 weeks might have been a factor as well. He is walking around the house pretty well now. He still uses his left hand more than his right but he is doing better engaging his right hand.
He has an MRI on Friday and next Tuesday we will bring that CD to the neurosurgeon who will hopefully give us good news about the abscess. I will update once we get the results of that.
We continue to give Nathan an anti-seizure medicine twice a day along with his IV antibiotics three times a day. I don't know how long he will be on those but maybe we will have a better idea next week. He also has appointments scheduled with his cardiologist and a doctor from infectious disease. The infectious disease doctors are the ones who monitor the treatment of the infection and decide what type of antibiotics are administered.
Our home health care nurse is really nice. She comes out once a week to take labs and change the dressing on Nathan's PICC line. It's great being able to talk to her and ask her questions.
Thanks so much for lifting us up in prayer!
Nathan is also doing a lot better walking and using his right hand/arm. When we first got home he was very unsteady on his feet. A lot of it had to do with the surgery but I think maybe not walking for nearly 3 weeks might have been a factor as well. He is walking around the house pretty well now. He still uses his left hand more than his right but he is doing better engaging his right hand.
He has an MRI on Friday and next Tuesday we will bring that CD to the neurosurgeon who will hopefully give us good news about the abscess. I will update once we get the results of that.
We continue to give Nathan an anti-seizure medicine twice a day along with his IV antibiotics three times a day. I don't know how long he will be on those but maybe we will have a better idea next week. He also has appointments scheduled with his cardiologist and a doctor from infectious disease. The infectious disease doctors are the ones who monitor the treatment of the infection and decide what type of antibiotics are administered.
Our home health care nurse is really nice. She comes out once a week to take labs and change the dressing on Nathan's PICC line. It's great being able to talk to her and ask her questions.
Thanks so much for lifting us up in prayer!
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