We're doing fine and sure are thankful to be heading in the right direction.
Yet in many ways, this stage of the journey is the hardest yet. All the medical care we have to give Grant takes more time and energy than just the regular new parent stuff. Add the two together and we haven't slept much, that is for sure. But, Grant is doing fairly well.
One big item in Grant's recovery is an increased calorie diet. However, Grant has not been feeding well since we arrived home so we are wrestling with all the variables trying to get it to work. Please pray that Grant would begin to eat more and to digest it well.
Thanks again for everything. Godspeed in 2007!
Sunday, December 31, 2006
Saturday, December 30, 2006
Grant's Echo
Before we could leave the hospital, Grant had to have an echo, lung x-rays etc. When the doctors came to Grant's room that night they had some disappointing news for us. They said the echo showed "a somewhat prominent left-sided vein draining superiorly into the left innominate vein from an unclear origin." Translation- Grant has an extra vein that is still connected wrong. The implications for this are unclear at this time. Practically, it means that Grant's oxygen flow is decreased about 10%. The lifestyle challenges for this are similar to someone who has a hole in their heart. This is not a reason to go back and do more surgery. However, if this vein becomes obstructed, like his original veins did, this would become a problem and more surgery would be required.
Sometime later one of the cardiologists came back and told us that she talked to the surgeon and he said he did not see this vein during the surgery. He does not think that the extra vein exists. This is a possiblity, the cardiologist told us, because echos are sometimes not clear. However, on our discharge report from the hospital, it states that Grant still has an extra superior vein connected incorrectly. When talking to the cardiologist that we will meet with on an ongoing basis once home, he said all we can do for now is keep an eye on it, continue to get echos and make decisions as Grant grows stronger and his heart gets bigger. He was very reassuring in terms of believing we can catch a problem like obstruction before it becomes an emergency situation. His last words to me were, "this is for me to worry about. Not you."
I feel so thankful that Grant is doing as well as he is. I have great hope that once we get through the next few months Grant will not be too different from most healthy kids. Right now we are overwhelmed by the amount of care he needs. It takes two of us to care for him most of the time because we are still learning how to be nurses in addition to parents. We do have a visiting nurse coming by tomorrow to help with a few things. I'm not sure I'm ever going to let Jim go back to work...
I love being a mom and I think Grant is going to thrive being out of the hospital. He must be enjoying not hearing beeps go off every five seconds. I know I am. :)
Prayer requests:
1. That Grant's heart and lungs continue to heal. (We'd love to get off the oxygen ASAP so Grant can be more mobile around the house. Right now he's plugged into the wall.)
2. That Grant does not develop any infections from his incisions.
3. That Grant's extra vein would never become obstructed.
Thank you friends!
Sometime later one of the cardiologists came back and told us that she talked to the surgeon and he said he did not see this vein during the surgery. He does not think that the extra vein exists. This is a possiblity, the cardiologist told us, because echos are sometimes not clear. However, on our discharge report from the hospital, it states that Grant still has an extra superior vein connected incorrectly. When talking to the cardiologist that we will meet with on an ongoing basis once home, he said all we can do for now is keep an eye on it, continue to get echos and make decisions as Grant grows stronger and his heart gets bigger. He was very reassuring in terms of believing we can catch a problem like obstruction before it becomes an emergency situation. His last words to me were, "this is for me to worry about. Not you."
I feel so thankful that Grant is doing as well as he is. I have great hope that once we get through the next few months Grant will not be too different from most healthy kids. Right now we are overwhelmed by the amount of care he needs. It takes two of us to care for him most of the time because we are still learning how to be nurses in addition to parents. We do have a visiting nurse coming by tomorrow to help with a few things. I'm not sure I'm ever going to let Jim go back to work...
I love being a mom and I think Grant is going to thrive being out of the hospital. He must be enjoying not hearing beeps go off every five seconds. I know I am. :)
Prayer requests:
1. That Grant's heart and lungs continue to heal. (We'd love to get off the oxygen ASAP so Grant can be more mobile around the house. Right now he's plugged into the wall.)
2. That Grant does not develop any infections from his incisions.
3. That Grant's extra vein would never become obstructed.
Thank you friends!
Friday, December 29, 2006
We're home!
Hooray! We arrived home from the hospital late last night and have been busy ever since- setting up oxygen, feeding Grant through his tube, giving medication around the clock etc. Jim promises to fill you in on details of Grant's status and our last few days at the hospital soon.
Wednesday, December 27, 2006
Tuesday, December 26, 2006
Waiting for test results
Today Grant had an EKG, eco and lung x-rays. The results of these tests will tell us more about Grant's progress and when we get to go home. We are currently waiting for the doctors to come in and interpret the results for us. We are so thankful to be going home soon. (Sometime this week, most likely.) But, at the same time I have to admit that I am overwhelmed. Today a man came in and explained to us how to hook the oxygen tank up for our car ride home...I put the feeding tube down Grant's nose for the first time today.. and I learned to give him steroids through his little mask...
We are so thankful for his progress, but it is begining to sink in how much care he is going to need even at home. The good news is all of this should be temporary. We'll let you know as soon as we hear from the doctors on our official departure date.
We are so thankful for his progress, but it is begining to sink in how much care he is going to need even at home. The good news is all of this should be temporary. We'll let you know as soon as we hear from the doctors on our official departure date.
Monday, December 25, 2006
Sunday, December 24, 2006
I'm Afraid We're Annoyingly Thankful
We have so much to be thankful for...
-We have such amazingly loving friends. Messages on the blog, emails, calls, visits, tears, ears, food and prayers--we're overwhelmed with your generous care.
-Even more precious to us has been our loving family. Thank you, thank you, thank you to each and every one. Your love-in-action has made all the difference.
-And most of all, we are so thankful for the love of Jesus. It has been such a gift to so tangibly experience God's peace and tender care through all of this. People can chat theory and theology all they want, but nobody can argue with our genuine encounters with God.
-Grant has been more wide-eyed and bushy-tailed (I don't know where he got the tail; must be Shannon's side).
-He's been so very content.
-He is taking an increasing percentage of his meals from a bottle vs. a feeding tube (means he is getting stronger).
-The chest tube has been removed. Hooray! It drained almost nothing in the last 36 hours so they said it was okay for it to come out. The day before it drained more than ever, meaning it would need to stay in longer; the doc said it might need to be in until Tuesday the 26th. But after we blogged for prayer on this it just dried right up. This is huge because it was the last big hurdle before we can go home.
-We've been able now to hold him quite a bit which has been just fantastic for all of us.
-UM Hospital nurses and doctors are absolutely incredible. One of the cardiologist doctors told me that if Grant had been born in most other areas of the country he likely wouldn't have made it. The UM hospital is one of the handful of places that are able to handle such a situation. There aren't many emergencies in pediatric cardiology--most conditions aren't immediately fatal. The obstruction Grant had along with his goofed-up plumbing, however, is the one and only cardiac emergency situation for kids. Put it this way--the helicopter ride Grant took to the UM Hospital was a life-saver. And I found this interesting: the doc surmised that if Grant had been born just 5-10 years ago he probably wouldn't have made it. Advancements in recent years have been that dramatic.
-We'll probably be able to go home on Tuesday the 26th or 27th.
-The doctors expect Grant to go on to a full recovery and be completely normal and healthy. I asked the doctor to expound on his definition of "normal"--I mean, can Grant be on both the chess team and the football team someday...or just chess? He said, and I paraphrase, the sky is the limit. The condition Grant had (so nice to be able to say had vs. has) is one of the few that actually have a fix, whereas most congenital heart conditions can only be managed with multiple surgeries and medications. Gosh, are we ever thankful for that.
Only a few challenges remain...
-Grant still isn't ready to wein off of the oxygen tubes. Please pray that he is soon able.
-Grant still needs to be fed about half of his meal through a nasogastric tube (referred to as an "NG"). I had to put a new one in him yesterday--it is kind of hard to shove 12 inches of tube down your son's nose until it gets to his stomach. But he just isn't strong enough yet to drink all of his milk from a bottle. It really isn't a big deal to do it, and once it is in it doesn't bother him much, but we'd really prefer to not have to go home with it. They say he may need it for a few weeks or even a month or so. Please pray that Grant quickly grows strong enough to take all of his milk from a bottle.
-Grant is on 4 medications and will hopefully wein off of them over the next few months: Sildenafil, which dilates blood vessels to reduce the blood pressure in his pulmonary arteries; two diuretics to also help reduce his blood pressure; and an inhaler to open his lungs and help him breathe. Please pray that his blood pressure returns to completely normal, his lungs heal completely and he is able to successfully wein off each medication.
-About 10% of patients that had Grant's condition have difficulties down the road. Some need a follow-up open-heart surgery, but that generally pops up within a year. Once a year has past, only a very small percentage ever has issues later. Grant's procedure went great and they expect him to be fine, but please pray that the pulmonary veins they surgically attached to his heart remain perfectly healthy and continue to grow along with Grant as he grows.
So, our dream is that many of you would continue to pray for Grant throughout 2007 for complete healing and that all of the wonderful things God has in store for Grant would someday come to pass.
Merry Christmas! And to some of our friends, Happy Kwanzaa! And to others, Happy (belated) Hanukkah! We so love you all,
Jim, Shannon & Grant.
-We have such amazingly loving friends. Messages on the blog, emails, calls, visits, tears, ears, food and prayers--we're overwhelmed with your generous care.
-Even more precious to us has been our loving family. Thank you, thank you, thank you to each and every one. Your love-in-action has made all the difference.
-And most of all, we are so thankful for the love of Jesus. It has been such a gift to so tangibly experience God's peace and tender care through all of this. People can chat theory and theology all they want, but nobody can argue with our genuine encounters with God.
-Grant has been more wide-eyed and bushy-tailed (I don't know where he got the tail; must be Shannon's side).
-He's been so very content.
-He is taking an increasing percentage of his meals from a bottle vs. a feeding tube (means he is getting stronger).
-The chest tube has been removed. Hooray! It drained almost nothing in the last 36 hours so they said it was okay for it to come out. The day before it drained more than ever, meaning it would need to stay in longer; the doc said it might need to be in until Tuesday the 26th. But after we blogged for prayer on this it just dried right up. This is huge because it was the last big hurdle before we can go home.
-We've been able now to hold him quite a bit which has been just fantastic for all of us.
-UM Hospital nurses and doctors are absolutely incredible. One of the cardiologist doctors told me that if Grant had been born in most other areas of the country he likely wouldn't have made it. The UM hospital is one of the handful of places that are able to handle such a situation. There aren't many emergencies in pediatric cardiology--most conditions aren't immediately fatal. The obstruction Grant had along with his goofed-up plumbing, however, is the one and only cardiac emergency situation for kids. Put it this way--the helicopter ride Grant took to the UM Hospital was a life-saver. And I found this interesting: the doc surmised that if Grant had been born just 5-10 years ago he probably wouldn't have made it. Advancements in recent years have been that dramatic.
-We'll probably be able to go home on Tuesday the 26th or 27th.
-The doctors expect Grant to go on to a full recovery and be completely normal and healthy. I asked the doctor to expound on his definition of "normal"--I mean, can Grant be on both the chess team and the football team someday...or just chess? He said, and I paraphrase, the sky is the limit. The condition Grant had (so nice to be able to say had vs. has) is one of the few that actually have a fix, whereas most congenital heart conditions can only be managed with multiple surgeries and medications. Gosh, are we ever thankful for that.
Only a few challenges remain...
-Grant still isn't ready to wein off of the oxygen tubes. Please pray that he is soon able.
-Grant still needs to be fed about half of his meal through a nasogastric tube (referred to as an "NG"). I had to put a new one in him yesterday--it is kind of hard to shove 12 inches of tube down your son's nose until it gets to his stomach. But he just isn't strong enough yet to drink all of his milk from a bottle. It really isn't a big deal to do it, and once it is in it doesn't bother him much, but we'd really prefer to not have to go home with it. They say he may need it for a few weeks or even a month or so. Please pray that Grant quickly grows strong enough to take all of his milk from a bottle.
-Grant is on 4 medications and will hopefully wein off of them over the next few months: Sildenafil, which dilates blood vessels to reduce the blood pressure in his pulmonary arteries; two diuretics to also help reduce his blood pressure; and an inhaler to open his lungs and help him breathe. Please pray that his blood pressure returns to completely normal, his lungs heal completely and he is able to successfully wein off each medication.
-About 10% of patients that had Grant's condition have difficulties down the road. Some need a follow-up open-heart surgery, but that generally pops up within a year. Once a year has past, only a very small percentage ever has issues later. Grant's procedure went great and they expect him to be fine, but please pray that the pulmonary veins they surgically attached to his heart remain perfectly healthy and continue to grow along with Grant as he grows.
So, our dream is that many of you would continue to pray for Grant throughout 2007 for complete healing and that all of the wonderful things God has in store for Grant would someday come to pass.
Merry Christmas! And to some of our friends, Happy Kwanzaa! And to others, Happy (belated) Hanukkah! We so love you all,
Jim, Shannon & Grant.
Saturday, December 23, 2006
Friday, December 22, 2006
Chest tube update
The chest tube didn't come out again today. There is still too much drainage from the surgery. They said it won't come out tomorrow either. Please pray that his drainage slows down to less than 3 cc's. Right now it is over 20. (Unfortunately, this is an increase from yesterday.)
Thursday, December 21, 2006
Onward & Upward
The kid almost seems normal now--he whines, cries, eats out of a bottle in addition to the feeding tube, sleeps all day and then poops like a rhino. And we love it.
Saw the senior doc today and he said Grant is doing great. Chest tube is still in though...please pray the drainage stops so they can take it out tomorrow.
His lungs are slowly repairing and doc said they will recover completely in time. Hooray!
So, next steps are:
1. Chest tube out
2. Slowly get off the oxygen
3. Go home (we'll most likely be released the middle of next week)
4. Wean off the meds over the course of several weeks
5. Have periodic check-ups to see how he is doing as some percentage of TAPVR patients require a second surgery within a year.
Shannon has been having difficulty sleeping again, which really triggers a downward spiral--thank you for continuing to pray for her.
We love you all!
Saw the senior doc today and he said Grant is doing great. Chest tube is still in though...please pray the drainage stops so they can take it out tomorrow.
His lungs are slowly repairing and doc said they will recover completely in time. Hooray!
So, next steps are:
1. Chest tube out
2. Slowly get off the oxygen
3. Go home (we'll most likely be released the middle of next week)
4. Wean off the meds over the course of several weeks
5. Have periodic check-ups to see how he is doing as some percentage of TAPVR patients require a second surgery within a year.
Shannon has been having difficulty sleeping again, which really triggers a downward spiral--thank you for continuing to pray for her.
We love you all!
Wednesday, December 20, 2006
Graduation Day
Well, well, well--Grant Samuel graduated from intensive care today and he is now on the "floor." He did it! We're still on the 5th floor, so give us a jingle or email if you're visiting and need to find us in our new spot.
And, Shannon got to hold him today! But just for a little bit--he still has the chest tube in and it is quite uncomfortable for him when he is jostled around. Tomorrow the chest tube comes out.
So, in summary:
-Off most of the crazy meds; now just on antibiotics, blood-flow enahancer and steroids.
-Off the ventilator, so he is breathing on his own. He does have an oxygen tube rammed up his schnoz, though. Without it his beat-up little lungs can't quite do the job.
-He is chowing on milk/formula through a feeding tube in his nose and handling it well. They are super-charging his food with a weight-gainer formula so he gets lots of calories. (No, Corey, he's not on creatine, but he is going to start training for his first strongman competition soon)
We really don't know what is next as we haven't had the chance to chat with the doctors yet. If I go by one of the last estimates, we probably have another week or two here still as his lungs continue to heal.
My next big question, and our primary prayer request, is regarding the condition of his lungs and the probability of a complete recovery. Is the damage permanent? Or will he heal? What long-term implications are there?
Finally, we want to thank you again for the encouragement and support and the help with meals. It is so amazing to be cared for like you all have cared for us. Ahem...quite emotional here...
Grant made it. Wow. We are so thankful. We'll update as soon as we hear from the doctors about his lungs.
And, Shannon got to hold him today! But just for a little bit--he still has the chest tube in and it is quite uncomfortable for him when he is jostled around. Tomorrow the chest tube comes out.
So, in summary:
-Off most of the crazy meds; now just on antibiotics, blood-flow enahancer and steroids.
-Off the ventilator, so he is breathing on his own. He does have an oxygen tube rammed up his schnoz, though. Without it his beat-up little lungs can't quite do the job.
-He is chowing on milk/formula through a feeding tube in his nose and handling it well. They are super-charging his food with a weight-gainer formula so he gets lots of calories. (No, Corey, he's not on creatine, but he is going to start training for his first strongman competition soon)
We really don't know what is next as we haven't had the chance to chat with the doctors yet. If I go by one of the last estimates, we probably have another week or two here still as his lungs continue to heal.
My next big question, and our primary prayer request, is regarding the condition of his lungs and the probability of a complete recovery. Is the damage permanent? Or will he heal? What long-term implications are there?
Finally, we want to thank you again for the encouragement and support and the help with meals. It is so amazing to be cared for like you all have cared for us. Ahem...quite emotional here...
Grant made it. Wow. We are so thankful. We'll update as soon as we hear from the doctors about his lungs.
Tuesday, December 19, 2006
Full Cup
Grant has an infection, but nothing crazy-serious. They are investigating the what, where and how and in the meantime giving him a do-all antibiotic. This explains the fever. The fury of sneezes today are just cute baby-sneezes.
As a result of the infection, Grant is staying in intensive care another day and night. Hopefully tomorrow he'll have the infection cleaned out and the chest tube removed (it drains the gunk from the incision on his chest). Then he can move to moderate care and we can hold him. The little squirt just begs to be cuddled but it has been hands-off for us all this time.
Shan is sleeping well and is doing great.
This is redundant, but we are so thankful. Thankful for our experience of God's direct care for us, as well as His indirect care through all of you. You can't imagine how amazing it is to be here at the focal point of all of your real, tangible, touchable love.
As we've caught up on sleep and finished filling out paperwork and finally figured out where to microwave food, etc, etc, it has been quite an adventure to engage the other people here that also have children in intensive care. So many stories, so many sad situations, so much pain. But also so much courage, faith, hope and love.
We have just begun to get an inkling of how to be supportive to those in the midst of a struggle--what helps, what hinders; what lightens the load, what burdens. We're learning this both as we are in receipt of others' care for us, and as we attempt to give that care away to others that don't have any of their own.
Bear with me as I share the following story. I just have to, as it has been one of the hallmark experiences on this journey of ours and I'd be remiss if I didn't force myself to digest it further and crystallize it in writing.
Tom & Julie brought Michael, their 10 year old son (today is his birthday), here yesterday for open-heart surgery. He was born with his heart installed backwards, and while they've had a few surgeries in years past to keep him going, it wasn't until recently that a procedure became available to fix the problem long-term. His condition worsened this year to the point that they had no choice but to undergo the surgery. There were several complications that turned the 5-hour surgery into a 7-hour surgery and they almost lost him a couple of times. The gut-wrenching horror of those 7 hours for that family is hard to fathom.
We didn't meet Tom & Julie until today, but we couldn't help observe the unfolding of events last night in the relatively small space that makes up the waiting area of the 5th floor PICU (pulmonary intensive care unit). We happened to have been just given a small vase with a few beautiful roses that day and we had it by our side to brighten the sterile room. It struck us that the tear-stained woman across the hall could really use one. She had just stepped into the rest room so we took a chance and brought a single rose to the man that was with her. "This is for her," we said with a gentle smile. "Thanks" he said with slight surprise as he unburied his face from his hands.
And that was it. We walked back and sat down.
I was powerfully reminded last night that focusing on the needs of others (vs. my own), allowing compassion to well up, and then responding to that compassion in simple acts of care feels oh-so good! Much better than even all the wonderfulness of being in receipt of such care (which is pretty darn wonderful). It was a small nothing, dropping a rose into some guy's hand. But ya know, we hadn't felt that good all week. So I'm reminded again that the universe really is designed to work best opposite our typical leanings--tis indeed better to give than to receive. But all of you reading this have been so giving to us, you certainly already know that!
Understand, too, that we only gave away what we were given. We can't claim any ownership of that simple act. We really can't even feel good about what we did, we can only feel good that it was done. The awareness, the motivation, the hurt in our heart for that family, and even the rose itself, were all given to us. None of that was ours--we didn't manufacture it, we didn't even find it--it was given to us. So we can't be proud, we can only be thankful that God and you have filled up our cups with your love and care.
The mother, Julie, stopped us today to introduce herself and ask if it was us who left the rose for her. She said we couldn't begin to understand how much that meant to her. She said she can't help herself--she just has to give us a hug.
Sigh...our cup is indeed full. And again, we can't take credit for it! So thank you for being used to fill our cups so we were able to siphon off a bit and help fill the empty cups of those around us.
Any pray for little Michael--that he'd heal. And for Tom & Julie--that their cups would be full.
Sheesh...when did this blog turn into my diary?? I feel sheepish...
As a result of the infection, Grant is staying in intensive care another day and night. Hopefully tomorrow he'll have the infection cleaned out and the chest tube removed (it drains the gunk from the incision on his chest). Then he can move to moderate care and we can hold him. The little squirt just begs to be cuddled but it has been hands-off for us all this time.
Shan is sleeping well and is doing great.
This is redundant, but we are so thankful. Thankful for our experience of God's direct care for us, as well as His indirect care through all of you. You can't imagine how amazing it is to be here at the focal point of all of your real, tangible, touchable love.
As we've caught up on sleep and finished filling out paperwork and finally figured out where to microwave food, etc, etc, it has been quite an adventure to engage the other people here that also have children in intensive care. So many stories, so many sad situations, so much pain. But also so much courage, faith, hope and love.
We have just begun to get an inkling of how to be supportive to those in the midst of a struggle--what helps, what hinders; what lightens the load, what burdens. We're learning this both as we are in receipt of others' care for us, and as we attempt to give that care away to others that don't have any of their own.
Bear with me as I share the following story. I just have to, as it has been one of the hallmark experiences on this journey of ours and I'd be remiss if I didn't force myself to digest it further and crystallize it in writing.
Tom & Julie brought Michael, their 10 year old son (today is his birthday), here yesterday for open-heart surgery. He was born with his heart installed backwards, and while they've had a few surgeries in years past to keep him going, it wasn't until recently that a procedure became available to fix the problem long-term. His condition worsened this year to the point that they had no choice but to undergo the surgery. There were several complications that turned the 5-hour surgery into a 7-hour surgery and they almost lost him a couple of times. The gut-wrenching horror of those 7 hours for that family is hard to fathom.
We didn't meet Tom & Julie until today, but we couldn't help observe the unfolding of events last night in the relatively small space that makes up the waiting area of the 5th floor PICU (pulmonary intensive care unit). We happened to have been just given a small vase with a few beautiful roses that day and we had it by our side to brighten the sterile room. It struck us that the tear-stained woman across the hall could really use one. She had just stepped into the rest room so we took a chance and brought a single rose to the man that was with her. "This is for her," we said with a gentle smile. "Thanks" he said with slight surprise as he unburied his face from his hands.
And that was it. We walked back and sat down.
I was powerfully reminded last night that focusing on the needs of others (vs. my own), allowing compassion to well up, and then responding to that compassion in simple acts of care feels oh-so good! Much better than even all the wonderfulness of being in receipt of such care (which is pretty darn wonderful). It was a small nothing, dropping a rose into some guy's hand. But ya know, we hadn't felt that good all week. So I'm reminded again that the universe really is designed to work best opposite our typical leanings--tis indeed better to give than to receive. But all of you reading this have been so giving to us, you certainly already know that!
Understand, too, that we only gave away what we were given. We can't claim any ownership of that simple act. We really can't even feel good about what we did, we can only feel good that it was done. The awareness, the motivation, the hurt in our heart for that family, and even the rose itself, were all given to us. None of that was ours--we didn't manufacture it, we didn't even find it--it was given to us. So we can't be proud, we can only be thankful that God and you have filled up our cups with your love and care.
The mother, Julie, stopped us today to introduce herself and ask if it was us who left the rose for her. She said we couldn't begin to understand how much that meant to her. She said she can't help herself--she just has to give us a hug.
Sigh...our cup is indeed full. And again, we can't take credit for it! So thank you for being used to fill our cups so we were able to siphon off a bit and help fill the empty cups of those around us.
Any pray for little Michael--that he'd heal. And for Tom & Julie--that their cups would be full.
Sheesh...when did this blog turn into my diary?? I feel sheepish...
Pray against infection!
I just went to check on Grant and he's been sneezing and coughing throughout the night and has a slight temperature. Please continue to pray against infection.
Monday, December 18, 2006
Sneezing
I forgot to mention that in the last posting that Grant has been sneezing a lot today. Please pray for protection against infection.
Breathing Room
Yipee! Grant is off the ventilator! He is making a smooth transition to breathing on his own. It is so nice to see him without a tube in his mouth. (He still has an oxygen tube and feeding tube in his nose, but anticipate seeing him "tubeless" one day soon.)I heard him cry for the first time today and it was music to my ears. :) He also sucked on the pacifier really well, which is a good sign, because many babies don't like anything in their mouth after the ventilator is out.
The next step is getting the chest tube out. They had hoped to do this right after taking him off the ventilator, but he still has too much drainage from the surgery.
As of 4am this morning, the doctor said his lung x-rays still looked "pretty bad." However, the doctor said Grant's behavior and other signs don't line up with how bad the x-rays are. We're taking this as a good sign, but are looking forward to a good x-ray report in the near future.
Current Prayer Requests:
1. For the drainage in his chest to decrease so the tube can come out ASAP.
2. For total healing of Grant's lungs and x-rays to prove it.
3. For rest and good health for both Jim and me. (Once the chest tube comes out we'll get to hold him!)
The next step is getting the chest tube out. They had hoped to do this right after taking him off the ventilator, but he still has too much drainage from the surgery.
As of 4am this morning, the doctor said his lung x-rays still looked "pretty bad." However, the doctor said Grant's behavior and other signs don't line up with how bad the x-rays are. We're taking this as a good sign, but are looking forward to a good x-ray report in the near future.
Current Prayer Requests:
1. For the drainage in his chest to decrease so the tube can come out ASAP.
2. For total healing of Grant's lungs and x-rays to prove it.
3. For rest and good health for both Jim and me. (Once the chest tube comes out we'll get to hold him!)
Sunday, December 17, 2006
Phase II?
That's my boy!--7 days old and he's already doing "sprints." If Grant can get off the ventilator tomorrow completely, then that will signal the successful completion of Phase I and the launch of Phase II of his recovery. Thankfully, the scariest part of this whole experience will then be in our rearview mirror. At his current trajectory, Grant will graduate to Phase II hopefully in the next 24 to 48 hours. Please pray that his lungs would be completely renewed and strengthened.
As we've said before, the battle through Phase I has been for Grant to live; the battle from here on out will be for Grant to live well. This afternoon the nurse estimated that Phase II will involve us moving out of the intensive care unit into a private room down the hall for 1-2 weeks where Grant will heal and strengthen while the medical staff monitors. Shannon and I also need to learn how to care for the little squirt once we get him home (a scary concept, truthfully).
Thank you, thank you for caring for us and praying for Grant all through Phase I. Only 1 or 2 more days left of this leg of the race!
And we thank you in advance for sticking with us and Grant through Phase II--our next 1-2 weeks here at the hospital.
Oh, and another good report--Shannon has slept well the last two nights (insert big sigh of relief here). Thank you again.
As we've said before, the battle through Phase I has been for Grant to live; the battle from here on out will be for Grant to live well. This afternoon the nurse estimated that Phase II will involve us moving out of the intensive care unit into a private room down the hall for 1-2 weeks where Grant will heal and strengthen while the medical staff monitors. Shannon and I also need to learn how to care for the little squirt once we get him home (a scary concept, truthfully).
Thank you, thank you for caring for us and praying for Grant all through Phase I. Only 1 or 2 more days left of this leg of the race!
And we thank you in advance for sticking with us and Grant through Phase II--our next 1-2 weeks here at the hospital.
Oh, and another good report--Shannon has slept well the last two nights (insert big sigh of relief here). Thank you again.
Doing Sprints
Today has been a day of preparing Grant for getting off the ventilator. They do this by having him do "sprints." This means they turn off the ventilator every couple of hours and let him breathe on his own for 50-60 minutes. They take his vitals at this time so they can monitor how his body reacts to breathing on his own. Every time they have done it so far his blood pressures soars for the first few minutes, then he settles down and does great. He'll do a couple more sprints before they actually take the tube out tomorrow. They are also giving him some steroids so that the swelling in his throat goes down from having the ventilator in so long. Please pray that Grant continues to "sprint" well and that he adjusts perfectly to having the ventilator removed. This will be a huge hurdle.
Saturday, December 16, 2006
Better...but not outta the woods yet
The Good
1. He is down to 5 meds from more than 15 at one point:
a . Pain reliever (Morphine)
b. Sedative
c. Antibiotic
d. Steroid
e. Blood flow enhancer (Viagra)
2. His fever from last night is gone.
3. The results of the surgery are excellent--his heart is now normal!
4. Shannon and I are overwhelmed with thankfullness for all of the love--emails, phone calls, visits, flowers, food, prayers, encouragement, great Doctors and Nurses, sense of God's nearness and care, peace that doesn't make sense, and each other. I mentioned to a friend via email that, oddly enough, I've never been more thankful in my life.
The Challenge
1. The x-rays of Grant's lungs seem to show quite a bit of damage. The Doctors aren't sure just how damaged they are and to what degree they will be able to heal. Starting tomorrow they are going to begin the slow process of reducing the ventilator (the thingy-ma-bob that breathes for him) to coax his lungs into working on their own. This lung issue seems to be the last crucial hurdle for Grant to overcome before he can graduate from "intensive" care to "moderate" care.
2. Shannon isn't sleeping as well as she needs to.
The Hope
1. The transition to moderate care will be an exciting one as then Grant will no longer be fighting just to live, but to live well. The Nurses tell me that if his lungs can handle it, he might only have a few more days left of this phase of his journey.
2. The Doctors are optimistic that a complete recovery is possible.
The Prayer
1. That Grant's lungs would heal completely.
2. That Shannon would sleep soundly.
Thanks again to all!
1. He is down to 5 meds from more than 15 at one point:
a . Pain reliever (Morphine)
b. Sedative
c. Antibiotic
d. Steroid
e. Blood flow enhancer (Viagra)
2. His fever from last night is gone.
3. The results of the surgery are excellent--his heart is now normal!
4. Shannon and I are overwhelmed with thankfullness for all of the love--emails, phone calls, visits, flowers, food, prayers, encouragement, great Doctors and Nurses, sense of God's nearness and care, peace that doesn't make sense, and each other. I mentioned to a friend via email that, oddly enough, I've never been more thankful in my life.
The Challenge
1. The x-rays of Grant's lungs seem to show quite a bit of damage. The Doctors aren't sure just how damaged they are and to what degree they will be able to heal. Starting tomorrow they are going to begin the slow process of reducing the ventilator (the thingy-ma-bob that breathes for him) to coax his lungs into working on their own. This lung issue seems to be the last crucial hurdle for Grant to overcome before he can graduate from "intensive" care to "moderate" care.
2. Shannon isn't sleeping as well as she needs to.
The Hope
1. The transition to moderate care will be an exciting one as then Grant will no longer be fighting just to live, but to live well. The Nurses tell me that if his lungs can handle it, he might only have a few more days left of this phase of his journey.
2. The Doctors are optimistic that a complete recovery is possible.
The Prayer
1. That Grant's lungs would heal completely.
2. That Shannon would sleep soundly.
Thanks again to all!
Doctor's update
I just met with Grant's doctors this morning. They said that he had a fever last night and may be fighting an infection. They also said that his lungs looked "pretty bad" on the x-rays. On a positive note, they are happy with the progress he is making weaning off his medications and will start weaning from the ventilator today.
Pictures of Grant
The top picture is what Grant looks like today hooked up to all the machines at the hospital. The bottom pictures were taken right after birth before we knew anything was wrong.
Friday, December 15, 2006
Off the nitric
Grant had another good day. He was able to wean off the nitric entirely today! Unfortunately, his body isn't totally able to adapt to this change yet, so they had to add viagra (yep, it has many uses) to his medication list. Without understanding all the details I guess it is better to be on viagra than nitric, so this was a positive development.
Another positive element of the day is that he was able to eat breast milk for the first time. They fed it through his nose and he seemed to be digesting it just fine.
The hardest part of today was seeing Grant gag on the ventilator several times. When he wakes up from his sedation he starts to squirm and this moves the ventilator and makes him struggle and gag. If he has a good, attentive nurse she notices this right away and takes care of it. But, have been a few times in the last couple of days that the on duty nurse wasn't paying attention and I had to go grab her and bring her back to his bedside. (Each baby in the PTCU has one on one nursing attention so this really shouldn't happen..)
Current prayer requests:
1. For attentive, loving nurses
2. For Grant to wean off the ventilator smoothly
3. For Grant to wean off more of his medications
4. Thank our gracious God with me that Grant is progressing so well!
Another positive element of the day is that he was able to eat breast milk for the first time. They fed it through his nose and he seemed to be digesting it just fine.
The hardest part of today was seeing Grant gag on the ventilator several times. When he wakes up from his sedation he starts to squirm and this moves the ventilator and makes him struggle and gag. If he has a good, attentive nurse she notices this right away and takes care of it. But, have been a few times in the last couple of days that the on duty nurse wasn't paying attention and I had to go grab her and bring her back to his bedside. (Each baby in the PTCU has one on one nursing attention so this really shouldn't happen..)
Current prayer requests:
1. For attentive, loving nurses
2. For Grant to wean off the ventilator smoothly
3. For Grant to wean off more of his medications
4. Thank our gracious God with me that Grant is progressing so well!
Only 8 meds to go
Grant had a great night. They were able to wean him off two more medications, so he is down to eight. They have also been able to reduce the nitric from 20 (on Wednesday) to four. They will continue to try to reduce it today. When they get him off it totally they can attempt to take him off the ventilator.
Thursday, December 14, 2006
What are the odds?
By the way, a little insight into the statistical probability that the "Psalm 118 thing" would occur:
The Old Testament has 39 books, and the New Testament has 27 books. In these 66 books, you will find a total of 1,189 chapters containing about 31,273 verses. What are the odds that our friend would have "randomly" thought that Grant would be a "Proclaimer" vs. the idea that God communicated that to him? What are the odds that so many people would have ended up at Psalm 118--let alone the exact verse (17)--vs. the idea that God led them?
Just a little food for thought.
Hey Jan--perhaps we should do a Monte Carlo Probability Analysis on that, huh? (sory--an inside joke with my office)
The Old Testament has 39 books, and the New Testament has 27 books. In these 66 books, you will find a total of 1,189 chapters containing about 31,273 verses. What are the odds that our friend would have "randomly" thought that Grant would be a "Proclaimer" vs. the idea that God communicated that to him? What are the odds that so many people would have ended up at Psalm 118--let alone the exact verse (17)--vs. the idea that God led them?
Just a little food for thought.
Hey Jan--perhaps we should do a Monte Carlo Probability Analysis on that, huh? (sory--an inside joke with my office)
Patched Up
Three positive developments:
1. They patched up his chest this morning and he did just fine--this is his biggest victory yet!
2. He was on 14 different meds dripping into him continuously and is now down to 11. He is totally off the meds that paralyze him; so he wiggles around a little, slightly opens his eyes and sticks out his tongue (I told him he better respect his parents!). The med most crucial to reduce is nitric, and that is now at its lowest level. Ya know, in a way, I find it a bit more difficult now that he's not totally snowed on meds because when he manages to slightly crack open his eyelids and look at me I feel like he is saying "Dad--what is going on? Help me...". But I know he isn't feeling anything, and he certainly won't remember. Shannon really likes seeing him a bit responsive, though, so that is great.
3. He just looks better (though not for any medical reason, but it makes us feel good).
Another cool thing--I've received quite a few emails and a couple blog replies that people have been praying Psalm 118 for Grant before I ever posted about it (see blog entry "Proclaimer" for background). Take, for example, this email from "Carla" (names have been changed to protect the guilty) who has been praying for Grant; she writes:
Confirmation - I prayed that same Psalm for Grant - that he would live and not die and proclaim what God has done.
Or our friend who posted the following:
I was with a group of friends last night and someone read that verse from Psalm 118. I immediately thought of Grant. I even remember thinking "I need to email that verse to Jim... tell him it's for his son."
Grant is probably a solid 7 right now (on the 1-10 scale), so while that is certainly better, he is still fighting to live. But we're almost past this stage of the journey. Then our attention will shift to praying Grant has a full recovery so he can grow up to be a robust, active, healthy whipper-snapper. It is possible that we may find ourselves there by the end of the weekend.
1. They patched up his chest this morning and he did just fine--this is his biggest victory yet!
2. He was on 14 different meds dripping into him continuously and is now down to 11. He is totally off the meds that paralyze him; so he wiggles around a little, slightly opens his eyes and sticks out his tongue (I told him he better respect his parents!). The med most crucial to reduce is nitric, and that is now at its lowest level. Ya know, in a way, I find it a bit more difficult now that he's not totally snowed on meds because when he manages to slightly crack open his eyelids and look at me I feel like he is saying "Dad--what is going on? Help me...". But I know he isn't feeling anything, and he certainly won't remember. Shannon really likes seeing him a bit responsive, though, so that is great.
3. He just looks better (though not for any medical reason, but it makes us feel good).
Another cool thing--I've received quite a few emails and a couple blog replies that people have been praying Psalm 118 for Grant before I ever posted about it (see blog entry "Proclaimer" for background). Take, for example, this email from "Carla" (names have been changed to protect the guilty) who has been praying for Grant; she writes:
Confirmation - I prayed that same Psalm for Grant - that he would live and not die and proclaim what God has done.
Or our friend who posted the following:
I was with a group of friends last night and someone read that verse from Psalm 118. I immediately thought of Grant. I even remember thinking "I need to email that verse to Jim... tell him it's for his son."
Grant is probably a solid 7 right now (on the 1-10 scale), so while that is certainly better, he is still fighting to live. But we're almost past this stage of the journey. Then our attention will shift to praying Grant has a full recovery so he can grow up to be a robust, active, healthy whipper-snapper. It is possible that we may find ourselves there by the end of the weekend.
Wednesday, December 13, 2006
New Good Development
The lead surgeon for Grant, Dr. Devaney (a splendid chap, I must say), reported they've decided that Grant is ready to have his chest closed up. This is a big win for the little feller. They are going to do it sometime on Thursday.
He is still in the 7-9 range, but much more solidly toward the 7. Tomorrow will be a big step toward moving to the next phase where to battle isn't life and death. So please pray that he remains stable during the procedure and that he continues to get stronger.
Correction to the last update: EKMO is actually ECMO (eh, sounds the same, you know?). Extracorporeal Membrane Oxygenation (ECMO) is a form of long-term heart-lung bypass used to treat infants, children, and adults in cardiac and/or respiratory failure despite maximal medical therapy.
He is still in the 7-9 range, but much more solidly toward the 7. Tomorrow will be a big step toward moving to the next phase where to battle isn't life and death. So please pray that he remains stable during the procedure and that he continues to get stronger.
Correction to the last update: EKMO is actually ECMO (eh, sounds the same, you know?). Extracorporeal Membrane Oxygenation (ECMO) is a form of long-term heart-lung bypass used to treat infants, children, and adults in cardiac and/or respiratory failure despite maximal medical therapy.
Proclaimer
Hi all--Jim here with an update.
Grant is still in the "fight-for-his-life" stage of the journey.
We've come up with a subjective scale of 1-10 that we use with the doctors/nurses, where 1 is perfect and 10 is as bad as it can possibly be. He was definitely a 10 on Sunday--that is what triggered the emergency surgery. He has been floating around in the 7-9 range ever since, though today he is more toward the positive end of that scale.
They have been successfully reducing a number of his 13 medications that are being constantly fed into him via computer-controlled drips--I think he is down under 10 different meds now, with some of them at reduced dosages. He resisted that yesterday (by "resist" I mean that his vital signs--blood pressure, etc--would react too dramatically to the changes, thus preventing them from doing it), but he is tolerating it today. So that is good.
The Dr. is considering closing up his chest today or tomorrow (he had open heart surgery, you know), which would be a major victory. It would mean that he is stable enough to handle the procedure and that they don't fear that they'll have to hook him up to a machine called "EKMO" (sounds like the name of a Muppet, to me). My limited understanding of EKMO is that it would serve as his heart for him--his blood would go out of his body, into the machine and the machine would pump it for him. That would be bad. So, we're hopeful they'll give the go-ahead on closing his chest.
So, as said, still in the 7-9 range, but closer to the 7 as of late. Thanks for continuing to pray for complete healing.
I (Jim) am doing fine--thankful to be experiencing God's strength. Shan has been so filled with God's power, too; I'm very proud of her. Sleep for her, though, has been rare. Please pray that she would begin to be able to sleep solidly.
A final cool note: one friend came to visit Grant and pray for him. After a short time our friend shared that he felt God saying that Grant is a "Proclaimer" and that he would bodly proclaim how good God is. I thought that sounded great but I really didn't make much of it; kinda put it on the shelf, if you follow me (maybe it was God, maybe it was just a kind thought, maybe it was nothing). A few hours later another friend suggested that Psalm 118 would be for Grant (actually, he now claims he suggested Psalm 116--but I'm certain he said 118). I read Psalm 118 and right in the middle of it is verse 17:
"I will not die but live, and will proclaim what the LORD has done."
The surrounding verses are just as encouraging--you can read it and turn it into a prayer for Grant (Psalm 118 http://bibleresources.bible.com/passagesearchresults.php?passage1=psalm+118&version1=31).
Thank you, thank you for surrounding us in love and Grant in prayer.
Grant is still in the "fight-for-his-life" stage of the journey.
We've come up with a subjective scale of 1-10 that we use with the doctors/nurses, where 1 is perfect and 10 is as bad as it can possibly be. He was definitely a 10 on Sunday--that is what triggered the emergency surgery. He has been floating around in the 7-9 range ever since, though today he is more toward the positive end of that scale.
They have been successfully reducing a number of his 13 medications that are being constantly fed into him via computer-controlled drips--I think he is down under 10 different meds now, with some of them at reduced dosages. He resisted that yesterday (by "resist" I mean that his vital signs--blood pressure, etc--would react too dramatically to the changes, thus preventing them from doing it), but he is tolerating it today. So that is good.
The Dr. is considering closing up his chest today or tomorrow (he had open heart surgery, you know), which would be a major victory. It would mean that he is stable enough to handle the procedure and that they don't fear that they'll have to hook him up to a machine called "EKMO" (sounds like the name of a Muppet, to me). My limited understanding of EKMO is that it would serve as his heart for him--his blood would go out of his body, into the machine and the machine would pump it for him. That would be bad. So, we're hopeful they'll give the go-ahead on closing his chest.
So, as said, still in the 7-9 range, but closer to the 7 as of late. Thanks for continuing to pray for complete healing.
I (Jim) am doing fine--thankful to be experiencing God's strength. Shan has been so filled with God's power, too; I'm very proud of her. Sleep for her, though, has been rare. Please pray that she would begin to be able to sleep solidly.
A final cool note: one friend came to visit Grant and pray for him. After a short time our friend shared that he felt God saying that Grant is a "Proclaimer" and that he would bodly proclaim how good God is. I thought that sounded great but I really didn't make much of it; kinda put it on the shelf, if you follow me (maybe it was God, maybe it was just a kind thought, maybe it was nothing). A few hours later another friend suggested that Psalm 118 would be for Grant (actually, he now claims he suggested Psalm 116--but I'm certain he said 118). I read Psalm 118 and right in the middle of it is verse 17:
"I will not die but live, and will proclaim what the LORD has done."
The surrounding verses are just as encouraging--you can read it and turn it into a prayer for Grant (Psalm 118 http://bibleresources.bible.com/passagesearchresults.php?passage1=psalm+118&version1=31).
Thank you, thank you for surrounding us in love and Grant in prayer.
Tuesday, December 12, 2006
Treading Water
Today Grant is treading water. He is still on 13 medications to keep him stable. He is also sedated and on a venilator. Any movement thus far has caused his pressures to drop, so they keep him totally immobile. They have not even attempted to change his dressings because they are afraid that the small amount of touching may make him unstable. His chest was kept open in case another emergency surgery is necessary and it is very important to keep that area clean so as to not risk infection. Please pray for him tonight as they attempt to change the dressing over his heart.
When we met with the doctor tonight he said that Grant is progressing slower than they would have liked or expected and that the lungs continue to be a concern. We are not sure what exactly that means and were too tired to ask. While he has not made any significant improvements today, at least there have been no major setbacks. Tomorrow they are going to attempt to reduce his nitric level. Please pray with us that his body will adapt to this with ease.
When we met with the doctor tonight he said that Grant is progressing slower than they would have liked or expected and that the lungs continue to be a concern. We are not sure what exactly that means and were too tired to ask. While he has not made any significant improvements today, at least there have been no major setbacks. Tomorrow they are going to attempt to reduce his nitric level. Please pray with us that his body will adapt to this with ease.
Grant's condition
The name of the congenital heart defect that Grant was diagnosed with is Total Anomalous Pulmonary Venous Connection,with obstruction. In TAPV, the pulmonary veins that bring oxygen-rich blood from the lungs back to the heart aren't connected to the left atrium. Instead, the pulmonary veins drain through abnormal connections to the right atrium.
In the right atrium, oxygen-rich blood from the pulmonary veins mixes with venous blood from the body. Part of this mixture passes through the atrial septum into the left atrium. From there it goes into the left ventricle, to the aorta and out to the body. The rest of the poorly oxygenated mixture flows through the right ventricle, into the pulmonary artery and on to the lungs. The blood passing through the aorta to the body doesn't have enough oxygen, which caused Grant to look blue.
In surgery, the pulmonary veins were reconnected to the left atrium and the atrial septal defect was closed. What makes Grant's condition more serious than most cases of TAPV is that he also developed an obstruction. The obstruction had and continues to have an effect on the lungs.
In the right atrium, oxygen-rich blood from the pulmonary veins mixes with venous blood from the body. Part of this mixture passes through the atrial septum into the left atrium. From there it goes into the left ventricle, to the aorta and out to the body. The rest of the poorly oxygenated mixture flows through the right ventricle, into the pulmonary artery and on to the lungs. The blood passing through the aorta to the body doesn't have enough oxygen, which caused Grant to look blue.
In surgery, the pulmonary veins were reconnected to the left atrium and the atrial septal defect was closed. What makes Grant's condition more serious than most cases of TAPV is that he also developed an obstruction. The obstruction had and continues to have an effect on the lungs.
Life flighted to U of M
After Grant's birth we spent a few wonderful hours holding him and getting to know him. He looked perfectly healthy. During his 3am bath a nurse noticed that he had begun to breath more rapidly and was turning blue. Some tests were run on Grant and we found out that his lungs were 80% filled with blood. We met with the cardiologists and they had him life-flighted to U of M for some tests and possible surgery.
After arriving at U of M they did an ECG and diagnosed Grant with Total Anomalous Pulmonary Venous Connection, with obstruction. They scheduled the surgery for Monday morning and attempted to keep Grant stable for the rest of the day. In the late evening Grant's vitals dropped and they decided that emergency surgery was necessary to save his life.
The 4 hour surgery was a success in terms of reconnecting the pulmonary veins to the left atrium. However, Grant's heart is having trouble recognizing these changes and is acting like the veins are still connected in the wrong places. To compensate, the vessels are constricting, cutting off the blood supply that should be freely flowing between the heart and lungs. As a result, Grant is on 13 medications, one of which is nitric, which keeps the pulmonary vessels open that keep trying to close. The goal over the next few days/weeks is to get Grant off these medications, most importantly, the nitric. If he can get off the nitric it will show that his body is learning to adapt to his new heart and he will be able to begin weaning off his other meds.
After arriving at U of M they did an ECG and diagnosed Grant with Total Anomalous Pulmonary Venous Connection, with obstruction. They scheduled the surgery for Monday morning and attempted to keep Grant stable for the rest of the day. In the late evening Grant's vitals dropped and they decided that emergency surgery was necessary to save his life.
The 4 hour surgery was a success in terms of reconnecting the pulmonary veins to the left atrium. However, Grant's heart is having trouble recognizing these changes and is acting like the veins are still connected in the wrong places. To compensate, the vessels are constricting, cutting off the blood supply that should be freely flowing between the heart and lungs. As a result, Grant is on 13 medications, one of which is nitric, which keeps the pulmonary vessels open that keep trying to close. The goal over the next few days/weeks is to get Grant off these medications, most importantly, the nitric. If he can get off the nitric it will show that his body is learning to adapt to his new heart and he will be able to begin weaning off his other meds.
Grant's birth
After 26 hours of labor, Grant Samuel Niedzinski was born at 1:02am on Saturday, December 9, 2006. At birth Grant weighed 8.8 lbs and was 21 inches long.
Sunday, November 05, 2006
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