2007 began with cardiologist visits every 6 to 8 weeks, then a third heart cath, then a second heart surgery. The year continued with a great finish to Kindergarten, a relaxing summer, a new pregnancy and a broken collar bone. It ends with rejoicing that Abigail and Isaac know that Jesus lives in their hearts, Ethan is the healthiest ever, and our family will soon become a family of six! I pray that in 2008, God will continue to grow us and stretch us to be more like Him and that our children will see that living for Him is the most important thing ever. Hope you had a wonderful Christmas. Happy New Year!
happy new year
2007 began with cardiologist visits every 6 to 8 weeks, then a third heart cath, then a second heart surgery. The year continued with a great finish to Kindergarten, a relaxing summer, a new pregnancy and a broken collar bone. It ends with rejoicing that Abigail and Isaac know that Jesus lives in their hearts, Ethan is the healthiest ever, and our family will soon become a family of six! I pray that in 2008, God will continue to grow us and stretch us to be more like Him and that our children will see that living for Him is the most important thing ever. Hope you had a wonderful Christmas. Happy New Year!
two years ago today...
...Ethan had open heart surgery! The surgeon sawed through his sternum, stopped his heart, sliced open his aortic artery and sewed in a patch to make the artery wider. Miraculously, his heart started back up, his sternum was wired together, and staples were put in his chest to close the incision. He was 13 days old. Five days later, we took him home. It was such a scary time and I am so thankful that it is behind us.
God's grace is all over Ethan's life
I took Ethan to the cardiologist this morning. I just have to brag about this little guy. He sat so still for his blood pressure check, his EKG and his echo, thanks to bubbles, Nick Jr cartoons and lots of prayer! Being still is so critical for each of these tests and for this active little guy to be still for even 30 seconds is a little miracle in itself. His blood pressure is great, which is just amazing with the type of heart defects he has. So, he is still on no heart meds. His EKG is the same as before, which is good. He will never have a "normal" EKG, the doctor just checks to make sure there are no significant changes.And now the BIG miraculous news...his heart looks GREAT! Better than the cardiologist could have hoped for! Can I get a "PRAISE GOD!"? His aortic artery is still wide open, showing no signs of renarrowing, and the blood flow through it looks like it would in a little guy Ethan's age with a normal heart! Dr. Ardinger actually said the words "his aortic artery is a non-issue now." I can't explain how miraculous that is. His aortic artery has been the reason for his two heart surgeries, his three heart caths, and cardiologist appointments every 4 to 6 weeks, and to be told that it is now a non-issue, that is just God's grace and healing - there is no other way to explain it. His mitral valve looks just fine - showing no signs of the problems that have showed up in the past. His aortic valve is still narrow and this will be the main issue now and the thing the doctors keep a close eye on. But God has still worked in this area of Ethan's heart because the narrowing has been downgraded from severe to MILD. If this aortic valve can keep up with Ethan's growth, it shouldn't become a big issue.
And another miracle is that Ethan doesn't have to go back for six months! He can continue to act like a normal toddler, with no physical limitations. Dr. Ardinger even said that his heart is in good enough shape to where he would be able to play t-ball, soccer, etc.
There are no words to thank all of you for the part you have played in God's healing of Ethan. Why would God choose to bring Ethan to this point when He didn't have to? It is because of His grace. His grace is so undeserving, yet He gives it so freely. Thank you!
Ethan - no news is good news
Ethan has had a completely healthy summer and is your typical pesky little brother-we are so thankful he is in our lives. He only has one volume-very loud! His next cardiologist appointment is in a month - September 17. We are praying that his heart continues to look as good as it did in June. We don't want any surprises!
I do have to mention that for the first time since Ethan was born, he has a $0.00 balance in all of his accounts at Children's Mercy! It takes a long time for insurance to process all the claims and just last week, everything was settled. Yeah! No more blue and green statements coming in the mail-at least until we go back next month.
I do have to mention that for the first time since Ethan was born, he has a $0.00 balance in all of his accounts at Children's Mercy! It takes a long time for insurance to process all the claims and just last week, everything was settled. Yeah! No more blue and green statements coming in the mail-at least until we go back next month.
Cat Island, Bahamas
To celebrate our 10 year anniversary, we spent a week in the Bahamas. It was an incredible break from the real world - I didn't have to act like a mom for a whole week! But, I can honestly say that I am glad to be home and ready to be "mommy" again.
The beach at our resort
The Atlantic Ocean - on the opposite side of the island
goodbye hoarse vocal cords
We are relieved and so grateful to report that Ethan's hoarseness is completely gone! Just another example of God's grace and healing in this little guy's life.
our newest niece!
Brice and I are proud to announce the arrival of our newest little niece - Katherine "Kate" Belle, born on July 2.
She is the daughter of my brother, Jared and his wife Emily.
Ethan's ENT visit to evaluate his vocal cords
Since surgery, Ethan's voice and cry have slowly been getting louder and less hoarse. But, last week, I started getting more nervous about it because I was doing some research (I know, that is never a good thing to do) and reading some scary stuff about vocal cord paralysis. His cardiologist wanted me to check back in with him in July to let him know how Ethan was doing with this, so, I emailed him about my concerns last week and they were able to get Ethan in to see an ENT this afternoon.
The ENT put a scope with a camera on the end down Ethan's nose and took a look and there is good news. He saw movement in both the right and left vocal cords. I was relieved to know that the left side was not completely paralyzed. You would think that this would be obvious, but it isn't always as the right vocal cord can compensate for the left side. (It is amazing that God created our bodies in a way that they can still function properly even if something isn't perfect.)
What this means is that we don't need to take him back to the ENT for at least 6 months, if not one year and maybe not ever again. We will just continue to monitor him. It is ironic that just a couple of days after I set the ball rolling to get Ethan in to see the ENT, Brice and I both noticed that his voice and cry were noticeably louder. Weird.
I hated to put Ethan through something else traumatic - he DID NOT like this scope, but just felt like we needed to know where we stood on this. Now we do and hopefully we can leave this little guy alone for a very long time.
Thanks to those of you who have prayed specifically for his vocal cord to heal. The ENT said that with the trauma that Ethan has had to this area, it takes a long time to heal. The right vocal cord can compensate for the left side, but we pray that the left side will continue to heal and improve and be 100%.
The ENT put a scope with a camera on the end down Ethan's nose and took a look and there is good news. He saw movement in both the right and left vocal cords. I was relieved to know that the left side was not completely paralyzed. You would think that this would be obvious, but it isn't always as the right vocal cord can compensate for the left side. (It is amazing that God created our bodies in a way that they can still function properly even if something isn't perfect.)
What this means is that we don't need to take him back to the ENT for at least 6 months, if not one year and maybe not ever again. We will just continue to monitor him. It is ironic that just a couple of days after I set the ball rolling to get Ethan in to see the ENT, Brice and I both noticed that his voice and cry were noticeably louder. Weird.
I hated to put Ethan through something else traumatic - he DID NOT like this scope, but just felt like we needed to know where we stood on this. Now we do and hopefully we can leave this little guy alone for a very long time.
Thanks to those of you who have prayed specifically for his vocal cord to heal. The ENT said that with the trauma that Ethan has had to this area, it takes a long time to heal. The right vocal cord can compensate for the left side, but we pray that the left side will continue to heal and improve and be 100%.
Ethan's Cardiologist Appt Today
"Ethan's echo looks really good. You can treat him as a normal little boy. You don't have to be looking for the "signs" of heart problems like you have had to do in the past. His heart is doing really well." How do I even begin to thank God for news like that? On my knees with tears streaming down my face, speechless!
Ethan has strong pulses! His blood pressure is good - no meds needed. His mitral valve looks fine, his aortic valve is handling the increased blood flow from the heart repair very well and the miraculous news: THERE IS A ZERO GRADIENT IN HIS AORTIC ARTERY! Definition: no narrowing whatsoever! It is wide open! Praise God and praise Dr. James O'Brien!
Ethan did incredible sitting still for his BP reading - he had four nurses surrounding him. One took his BP, one blew bubbles, one talked to him and one wrote down the BP readings. =) I just held him. They were prepared! They were also happy to meet the "Ethan" on the CMH radio commercials.
We don't go back until September 17. That will be our longest absence from CMH since Ethan was born. Dr. Ardinger was just so pleased. He usually tries to not be overly positive for my sake, just to help me keep everything in perspective, but I could tell he was very happy and that makes me incredibly happy!
Ethan may still have problems come up as he gets older, but when I start to worry, I pray that I can choose to put my focus back on God and rejoice over the wonderful news from today.
As far as Ethan's left vocal cord issues, we are going to wait another month and if he still sounds hoarse, we will take him to an ENT to get it evaluated. We will just continue to pray that the problem resolves itself.
God is real, He is alive and He is working in the life of our family and we have had the privilege of seeing Him work. We don't deserve this, but that is what God's grace is - undeserving, but always there.
Have a wonderful day and I hope this news brings a smile to your face, and most of all, makes you stop and say a prayer of thanks to God! Your prayers have brought Ethan to this point. Thank you from the bottom of my heart.
Ethan has strong pulses! His blood pressure is good - no meds needed. His mitral valve looks fine, his aortic valve is handling the increased blood flow from the heart repair very well and the miraculous news: THERE IS A ZERO GRADIENT IN HIS AORTIC ARTERY! Definition: no narrowing whatsoever! It is wide open! Praise God and praise Dr. James O'Brien!
Ethan did incredible sitting still for his BP reading - he had four nurses surrounding him. One took his BP, one blew bubbles, one talked to him and one wrote down the BP readings. =) I just held him. They were prepared! They were also happy to meet the "Ethan" on the CMH radio commercials.
We don't go back until September 17. That will be our longest absence from CMH since Ethan was born. Dr. Ardinger was just so pleased. He usually tries to not be overly positive for my sake, just to help me keep everything in perspective, but I could tell he was very happy and that makes me incredibly happy!
Ethan may still have problems come up as he gets older, but when I start to worry, I pray that I can choose to put my focus back on God and rejoice over the wonderful news from today.
As far as Ethan's left vocal cord issues, we are going to wait another month and if he still sounds hoarse, we will take him to an ENT to get it evaluated. We will just continue to pray that the problem resolves itself.
God is real, He is alive and He is working in the life of our family and we have had the privilege of seeing Him work. We don't deserve this, but that is what God's grace is - undeserving, but always there.
Have a wonderful day and I hope this news brings a smile to your face, and most of all, makes you stop and say a prayer of thanks to God! Your prayers have brought Ethan to this point. Thank you from the bottom of my heart.
Last day of Kindergarten
Abigail's last day of Kindergarten was yesterday. She is now a first grader! We are so proud of her. She had such a fun year and made the adjustment so much better than I even dreamed. Summer vacation here we come!
Time is flying...
Abigail is done with soccer. Her team won their last game (their only win!) and Abigail scored two goals! Isaac has started t-ball. His team is "Lightning" and we are pretty confident that someone is going to get hurt. They can all throw the ball pretty hard, but they don't catch very well! Ethan is doing his best to keep up with his sister and brother. He is saying a new word about every other day or so.
Post-Op Appointment
Ethan's post-op appt went very well. The chest x-ray is never fun, but the good news is that it came back good. I am not sure what all they are looking for from the chest x-ray, but I do know they check to see if there is any fluid around his heart and there wasn't.
He amazed both Brice and I at how well he cooperated for the nurse. He sat so still while she checked his oxygen, took his blood pressure (which was pretty good) and snipped the stitch from his drainage tube. It was like watching a completely different boy interact with the nurse today. She gave him three big stickers for being such a good boy!
We can stop giving him Ibuprofen three times a day and just give it as needed for pain. We still have to be careful with how we pick him up (support his bottom) for a few more weeks. As far as his vocal cord issue, we feel like his voice/cry is getting a little bit louder, but he still sounds hoarse. She was going to let Ethan's surgeon know about that and then get back to us as to whether the surgeon wants Ethan to see an ENT to evaluate it further.
We continue to be amazed by his recovery. I have told several people that I don't feel like I am taking care of a recovering heart patient. Ethan is living proof that God still gives us miracles!
He amazed both Brice and I at how well he cooperated for the nurse. He sat so still while she checked his oxygen, took his blood pressure (which was pretty good) and snipped the stitch from his drainage tube. It was like watching a completely different boy interact with the nurse today. She gave him three big stickers for being such a good boy!
We can stop giving him Ibuprofen three times a day and just give it as needed for pain. We still have to be careful with how we pick him up (support his bottom) for a few more weeks. As far as his vocal cord issue, we feel like his voice/cry is getting a little bit louder, but he still sounds hoarse. She was going to let Ethan's surgeon know about that and then get back to us as to whether the surgeon wants Ethan to see an ENT to evaluate it further.
We continue to be amazed by his recovery. I have told several people that I don't feel like I am taking care of a recovering heart patient. Ethan is living proof that God still gives us miracles!
Settling back in
It is good to be home. Ethan continues to amaze us by how well he is doing. We give him Ibuprofen three times a day for the pain and that seems to keep him very comfortable. (We have Oxycodone if we need it.) Other than that, he has no other meds right now. With his heart defect, we know that blood pressure could be an issue, so his cardiologist will continue to monitor it. He will see the cardiologist the beginning of June. At that time, he will have an echo and that will give us an idea as to how is heart is adjusting to the repair that the surgeon made.
Back to how well Ethan is doing... The nurse told us that he would limit himself in what he can/can't do. He really doesn't seem to be doing that. He has had so much fun just being back home, playing outside and trying to keep up with Abigail and Isaac. I keep reminding him that he did just have heart surgery.
We have so much to be grateful for. Last week definitely had its highs and some very low lows, but I never dreamed that the past week could have gone as well as it did (both at the hospital and here at home for Abigail and Isaac). It is easy to praise God when things go better than you could have hoped. In His grace, He answered our prayers the way that we wanted Him too. We are fully aware that He didn't have to do that.
I will post an update after his post-op appointment this Thursday.
Again, we want to thank our family and friends for everything you have done to help us. You were used by God to bless our family and in turn, He is going to bless you. We love you!
Back to how well Ethan is doing... The nurse told us that he would limit himself in what he can/can't do. He really doesn't seem to be doing that. He has had so much fun just being back home, playing outside and trying to keep up with Abigail and Isaac. I keep reminding him that he did just have heart surgery.
We have so much to be grateful for. Last week definitely had its highs and some very low lows, but I never dreamed that the past week could have gone as well as it did (both at the hospital and here at home for Abigail and Isaac). It is easy to praise God when things go better than you could have hoped. In His grace, He answered our prayers the way that we wanted Him too. We are fully aware that He didn't have to do that.
I will post an update after his post-op appointment this Thursday.
Again, we want to thank our family and friends for everything you have done to help us. You were used by God to bless our family and in turn, He is going to bless you. We love you!
HOME!
We arrived home around 1:15 this afternoon. It is amazing to us that we were only at CMH for 4 1/2 days. But, God is amazing and we can see His hand in everything.
Please continue to pray that Ethan's recovery will be smooth. I don't think that anyone would be able to guess what he has been through by the way he is acting and moving around. We would also appreciate prayers that Ethan's vocal cord issues will be resolved on their own. His post-op appointment is next Thursday and they will evaluate this then.
We can't thank you enough for your prayers and support through all of this! God bless!
Please continue to pray that Ethan's recovery will be smooth. I don't think that anyone would be able to guess what he has been through by the way he is acting and moving around. We would also appreciate prayers that Ethan's vocal cord issues will be resolved on their own. His post-op appointment is next Thursday and they will evaluate this then.
We can't thank you enough for your prayers and support through all of this! God bless!
Quick Update
We have had a good day. Ethan has gotten a lot of play time and has had fun roaming the halls, pushing a lawn mower and chasing balls. He actually made friends with his nurse late this afternoon and even let her check his vitals without throwing a fit.
We are still on schedule to leave tomorrow, just not sure what time yet. Hopefully we don't have to wait around all day.
My next post will be from home sweet home!
We are still on schedule to leave tomorrow, just not sure what time yet. Hopefully we don't have to wait around all day.
My next post will be from home sweet home!
Going Home Tomorrow!
We have been told that we will be going home tomorrow! Is God amazing or what? Just blows us away! It is nice being on the fourth floor as we have a few more conveniences. We had a pretty good night last night. Ethan slept on Brice's lap the whole night, so he was pretty comfy, but daddy didn't sleep much! The move up here was hard on Ethan and I think he was just scared and needed to be with his daddy. He has become a "daddy's boy" this week and it so sweet to see.
Ethan is absolutely terrified of nurses now and gets so upset whenever they walk in the room. They haven't gotten a good BP reading since we moved up here because he gets so upset. I think they just might lay off this since they did get a good reading shortly after we moved up here last night.
His last IV was removed from his foot this morning - he started walking around pretty much right after that. His drainage tube was also removed and he was taken off all monitors. So, he is cordless and tubeless! YEAH!
We played in the playroom this morning and he loved that! He looks like our normal little boy.
He had two chest x-rays this morning - one before the drainage tube was removed and one after and both look good. He had labs drawn this morning and his sodium is up to 139 - they want it to be between 135 and 145, so this is no longer a concern! Also, his appetite is coming back slowly. He had a chicken nugget, carrots and pears for lunch.
My parents brought Abigail and Isaac up to see him early this afternoon and it was good for all the kids to be together. It was also eye opening for Brice and I in that we can see that it will be such a challenge to keep Ethan from over doing it when he is at home. He is ready to play, but his body won't be completely healed for awhile and so he needs to be careful. Hard for a toddler to understand that!
Brice and I are feeling the exhaustion catching up to us and because of that, our patience is low and frustration level is high. Please pray for us as we transition to be home with a recovering heart patient and two other kids who want to keep going full speed ahead.
"Thanks be to God for his indescribable gift." II Corinthians 9:15
Waiting
It is around 5pm and we are waiting to be moved to the fourth floor. We have been told that it will be today and we have heard that it may not even be until tomorrow as they are waiting for an open bed for Ethan. We are hoping for today still, but don't have our hopes up too high as it is already evening.
Ethan is doing well. He doesn't like it when nurses or doctors come in now. He clings to us and tries to get away from whoever needs to listen to his listen to his heart, take his BP, etc.
After we move to the fourth floor, the nurse/doctor will be keeping an eye on the drainage from his chest tube. Since he has been more awake and moving around more, he has been draining a little more blood, but this will taper off in a couple of days. They will also be watching his food intake and BP. Hope we can keep moving right along with all these. They may check his sodium at least one more time, just to make sure it is still OK. Thanks so much to everyone who prayed specifically for this! Your prayers are being answered!
He is talking, but still hoarse. His crying is definitely a lot more quiet with being hoarse. It will just take time for his vocal chords to heal. We pray they heal completely.
He had a couple of short naps today. Would appreciate prayers that Ethan could get a good night sleep.
Thanks to everyone for their calls, emails, meals, prayers, encouragement. We feel so loved and taken care of. Abigail and Isaac are doing great at home with Grandpa and Grandma Busenitz. Grandpa and Grandma Bohrer have been helping out at the house too.
Here are some pics of Ethan taking a short nap on daddy's lap and having a little play time with Grandpa Busenitz.
Definitely a better night
Each of us got a lot more sleep last night! Ethan's night nurse encouraged Brice and I to leave and go get some sleep with a promise to call us if Ethan got too upset. We took her up on the offer since we had barely slept in the last 36 hours. We slept in the PICU waiting room and slept about as good as you can with strangers sleeping around you, people talking, doors closing, people walking around. It is definitely an experience and one that we never wanted to repeat. (They don't have beds for parents in the PICU rooms). When we walked back into Ethan's room this morning, he was sitting up in bed with a sippy cup, looking more like himself.Ethan's surgeon came by this moring and said that his sodium levels are great and that he should be able to move to the 4th floor today. So, one more big step toward getting out of here. Thank you for specifically praying for this! He is currently getting potassium and a few other nutrients through an IV to bring those levels up. But, as he starts to eat more, that will correct itself quickly.
Right now, he is hanging out in his bed, eating Teddy Grahams, drinking apple juice and watching ESPN with daddy. Not too bad, huh?
We are definitely encouraged by his progress. Thanks so much for being faithful to check in on us and to pray for us.
Overall, a good day
Ethan was much more comfortable today, thankfully. He was able to sleep a lot. Later this afternoon, he was very alert and awake and acting a little more like himself as his temper came through a few times. He was talking a little and smiled just once. Just a little bit ago, he signed "please" and turned and pointed to the door. If that just doesn't make your heart break! He wants to leave. His labs at 4pm showed that his sodium level was up to 129, which is good. They just drew more labs (8:30pm), so hopefully they will be up even more.
We are hoping for a better night tonight. Thanks for all your prayers and encouragement. God is bringing us through hour by hour.
P.S. There were only 3 heart surgeries today because of cancellations and not enough beds since the PICU is so full. We are so thankful we live near such a great hospital who can help Ethan and other kids with CHDs.
Sodium Levels Up!
Praise God that Ethan's sodium level went from 124 to 127. They will draw labs again at 4pm and are hoping they will be around 132. Please pray for 132!
Ethan is still resting comfortably. He has fewer tubes and that just helps his comfort level so much. The medical team seems to have found a good balance of pain meds for the moment, which is wonderful. This really helps Brice and I too!
He is so, so sleepy from the drugs, but at least he is able to rest. When he opens his eyes, he still doesn't really "see" us. Just looks really dazed.
There were 5 heart surgeries yesterday and 6 more today, so lots of "heart" kids around here!
Ethan is still resting comfortably. He has fewer tubes and that just helps his comfort level so much. The medical team seems to have found a good balance of pain meds for the moment, which is wonderful. This really helps Brice and I too!
He is so, so sleepy from the drugs, but at least he is able to rest. When he opens his eyes, he still doesn't really "see" us. Just looks really dazed.
There were 5 heart surgeries yesterday and 6 more today, so lots of "heart" kids around here!
Extremely Rough Night
We don't feel like we were prepared for the kind of night that Ethan could have following his surgery, but then again, I don't know how anyone can prepare you for seeing your child struggle. As far as his heart goes, Ethan is doing great - still not on any heart meds and keeping his blood pressure in a great range. Praise God for this.
About last night - Ethan was really agitated all night long - only resting for 5 to 10 minutes at a time and then thrashing around and moaning. We had to restrain him (sometime it took 3 of us) to keep him from tugging out all the tubes. We tried holding him and then just letting him lay in his bed, nothing made him comfortable. He definitely got a lot of drugs for the pain and agitation, but they didn't seem to work very well. It is frustrating that the nurses and doctors can't just say "do this and that" and then he will be fine. It is a guessing game with each child. Each one is individual and what works for one doesn't work for another. So, all they can do is try one thing and if that doesn't work, try something else. Ethan's poor nurse and doctor had some very frustrated parents and a very emotional mom to deal with, in addition to Ethan!
But, since 6am, he has been resting the most comfortably since they took him off the vent. He no longer has the IV line in his neck (OUCH!) and his left hand. So, he can suck his left thumb and lay on his side or stomach much more comfortably. Part of his thrashing around last night was his attempt to roll onto his stomach to sleep, and when we restrained him, it made him mad, which made him hurt.
We have been told several times that healing from a thoracotomy (side incision) is much more painful than healing from open heart surgery - this is what adults have said who have been through heart surgery.
Another positive this morning is that he has been able to cough on his own and get some of the junk out of his throat. Hopefully he can continue to do this as there is a risk of pneumonia if that stuff goes into his lungs. But coughing hurts, which just upsets him more.
The labs they took this morning came back saying his sodium is low, so they have him on some meds to stabilize that. They are not quite sure why this is happening. For this reason, he will stay in the PICU because there is a risk of a seizure if his sodium level gets too low. They will monitor it closely and we will pray that the meds help. He is also on Lasix to make him pee more.
He is still hoarse and the surgeon explained to me this morning that in the type of surgery that Ethan had, there is a risk of damage to a vocal chord nerve that wraps around his aortic artery. He did see part of the nerve while he was doing the repair and was able to move it out of the way, but there is still a risk that it was damaged during surgery. He said that most of the time it will heal, but sometimes it doesn't and I am really not sure what all that means, but we will cross that bridge when we get there. He was hoarse for 6 weeks after his first surgery, so I know it can take time for the vocal chords to heal.
Please keep praying for us.
About last night - Ethan was really agitated all night long - only resting for 5 to 10 minutes at a time and then thrashing around and moaning. We had to restrain him (sometime it took 3 of us) to keep him from tugging out all the tubes. We tried holding him and then just letting him lay in his bed, nothing made him comfortable. He definitely got a lot of drugs for the pain and agitation, but they didn't seem to work very well. It is frustrating that the nurses and doctors can't just say "do this and that" and then he will be fine. It is a guessing game with each child. Each one is individual and what works for one doesn't work for another. So, all they can do is try one thing and if that doesn't work, try something else. Ethan's poor nurse and doctor had some very frustrated parents and a very emotional mom to deal with, in addition to Ethan!
But, since 6am, he has been resting the most comfortably since they took him off the vent. He no longer has the IV line in his neck (OUCH!) and his left hand. So, he can suck his left thumb and lay on his side or stomach much more comfortably. Part of his thrashing around last night was his attempt to roll onto his stomach to sleep, and when we restrained him, it made him mad, which made him hurt.
We have been told several times that healing from a thoracotomy (side incision) is much more painful than healing from open heart surgery - this is what adults have said who have been through heart surgery.
Another positive this morning is that he has been able to cough on his own and get some of the junk out of his throat. Hopefully he can continue to do this as there is a risk of pneumonia if that stuff goes into his lungs. But coughing hurts, which just upsets him more.
The labs they took this morning came back saying his sodium is low, so they have him on some meds to stabilize that. They are not quite sure why this is happening. For this reason, he will stay in the PICU because there is a risk of a seizure if his sodium level gets too low. They will monitor it closely and we will pray that the meds help. He is also on Lasix to make him pee more.
He is still hoarse and the surgeon explained to me this morning that in the type of surgery that Ethan had, there is a risk of damage to a vocal chord nerve that wraps around his aortic artery. He did see part of the nerve while he was doing the repair and was able to move it out of the way, but there is still a risk that it was damaged during surgery. He said that most of the time it will heal, but sometimes it doesn't and I am really not sure what all that means, but we will cross that bridge when we get there. He was hoarse for 6 weeks after his first surgery, so I know it can take time for the vocal chords to heal.
Please keep praying for us.
9:30p.m.
Well, since I last posted, my hands have kind of been tied up - holding Ethan! I held him from 3:30 until 8:30. Yes, five straight hours, just trying to comfort him so that he can rest. They took him off the ventilator around 3pm and he has been breathing on his own since then. He is pretty hoarse from the irritation caused by the breathing tube. When he cries, you can't hear anything (how many times have I wished for that before, but I would love to hear a full blown cry right now).
Because of the breathing tube, he has a lot of mucus in his throat. They have been suctioning him and will be doing some breathing treatments to help loosen this up. He hasn't been able cough very much because he is still so sleepy. All this makes his breathing sound pretty bad and makes it looks like he is having a hard time breathing, but he really is breathing OK. Still hard to hear it though. He has been getting morphine about every 1 to 2 hours to help with the pain and so even though he opens his eyes every once in a while, he is pretty drugged and out of it. He still has a low fever.
The main thing for the first 24 hours is to keep him comfortable. Please pray that he would cough and that the breathing treatments would do there job. This could be a long night, after a long day. We do have a Ronald McDonald room tonight, so Brice and I can take turns sleeping so that one of us will always be with Ethan. He has gotten fiesty a few times, sitting up in his bed and trying to pull on all the many tubes coming out of his body.
God has brought us a long ways since 6 a.m. this morning.
Because of the breathing tube, he has a lot of mucus in his throat. They have been suctioning him and will be doing some breathing treatments to help loosen this up. He hasn't been able cough very much because he is still so sleepy. All this makes his breathing sound pretty bad and makes it looks like he is having a hard time breathing, but he really is breathing OK. Still hard to hear it though. He has been getting morphine about every 1 to 2 hours to help with the pain and so even though he opens his eyes every once in a while, he is pretty drugged and out of it. He still has a low fever.
The main thing for the first 24 hours is to keep him comfortable. Please pray that he would cough and that the breathing treatments would do there job. This could be a long night, after a long day. We do have a Ronald McDonald room tonight, so Brice and I can take turns sleeping so that one of us will always be with Ethan. He has gotten fiesty a few times, sitting up in his bed and trying to pull on all the many tubes coming out of his body.
God has brought us a long ways since 6 a.m. this morning.
2:20p.m.
Praise God for his continued protection over Ethan. This day has been such a blur! We talked to the surgeon about 10:15 and he was very pleased with how the surgery went. He said it went better than he thought. He had told us that the surgery would last 3 to 5 hours, but it took just under 2 hours! WOW! There wasn’t as much scar tissue in the way, which was definitely good news for Ethan.We got to see Ethan for the first time at 10:45. He looked better than I thought, but it is still very tough to see your child all hooked up to stuff. He has four IV lines in – one in each foot, one in his left wrist and one in his neck. He is on the ventilator, but is off all sedation meds because they are letting him start to wake up, which will take a few hours. He has an NG tube down his nose that goes into his stomach to suck out all the acid so that he doesn’t get an upset stomach. Also, both his arms are restrained so that he doesn’t pull out the IV lines.
He has been moving and opening his eyes every once in a while, but still VERY sleepy. He woke up around 2pm for a little bit and was not happy. He was crying, but we can't hear anything because of the ventilator tube. That wore him out and so he is sleeping now.
Before leaving the OR, he was given an epidural for the pain (numbs him from the waist to just below the shoulders). He came out of the OR without being on any heart meds! WOW!
He has strong pulses in both of his feet, whereas, before the surgery, the cardiologist couldn’t feel his pulses – this was because the blood flow was restricted by the coarctation (narrowing). Blood was still flowing all the way down to his feet, just not at a strong rate.
Before leaving the OR, he was given an epidural for the pain (numbs him from the waist to just below the shoulders). He came out of the OR without being on any heart meds! WOW!
He has strong pulses in both of his feet, whereas, before the surgery, the cardiologist couldn’t feel his pulses – this was because the blood flow was restricted by the coarctation (narrowing). Blood was still flowing all the way down to his feet, just not at a strong rate.
He is running a low fever right now. Please pray that this is not a big deal.
For now, we are just hanging out and ready to comfort him when he wakes up. Thanks again to everyone for continuing to pray for our little guy. It means the world to us. There are no sufficient words to thank God or all of you.
9:35 a.m.
The surgeon is sewing Ethan back up. Everything went well and Ethan is doing great. The surgeon used a patch to fix the narrowing. We are so relieved that he was able to complete the surgery through the left side rather than having to do another open heart surgery.
Ethan will be transferred to the PICU. It will still be awhile before we can see him. The surgeon will come and talk to us when he is done with Ethan.
Please continue to pray for Ethan's protection as the next few hours after surgery are the most critical as the doctors and nurses try to get all his vitals regulated.
Praise God for bringing Ethan through his second (and hopefully last) heart surgery!
Ethan will be transferred to the PICU. It will still be awhile before we can see him. The surgeon will come and talk to us when he is done with Ethan.
Please continue to pray for Ethan's protection as the next few hours after surgery are the most critical as the doctors and nurses try to get all his vitals regulated.
Praise God for bringing Ethan through his second (and hopefully last) heart surgery!
8:45 a.m.
The nurse just came to say that Ethan is doing well, all his vitals are stable, Dr. O'Brien is "in" and things are progressing well. She didn't know if the surgeon was going to have to use the patch or not. She made it sound like it might be only another hour or so.
We are hanging out in the waiting room with both sets of grandparents, feeling God's presence and peace and so grateful that Ethan is being protected.
We are hanging out in the waiting room with both sets of grandparents, feeling God's presence and peace and so grateful that Ethan is being protected.
SURGERY IS UNDERWAY!
Just an update to let you know that we handed Ethan off to the cardiac surgery team at 7:15am and at 7:45, the nurse came to let us know that Ethan was asleep and had most of his IVs in and Dr. O'Brien was getting ready to begin.
Ethan was a little grumpy because he was hungry and thirsty, but he didn't even cry when we kissed him goodbye (I was crying!)
Thanks to everyone who prayed that Ethan would stay healthy. He had a little runny nose yesterday, but no one was concerned. We had a good night's sleep last night as well.
I'll post as we get updates from the nurse. Keep on praying!
Ethan was a little grumpy because he was hungry and thirsty, but he didn't even cry when we kissed him goodbye (I was crying!)
Thanks to everyone who prayed that Ethan would stay healthy. He had a little runny nose yesterday, but no one was concerned. We had a good night's sleep last night as well.
I'll post as we get updates from the nurse. Keep on praying!
Pre-Op Appointment this morning
Ethan made it through pre-op just fine. He was a champ during the blood work, sat still for the EKG and cried through the chest x-ray. We met with Ethan's surgeon and the anesthesiologist and a couple of cardiac surgery nurses.
Ethan's surgeon told us that he won't know the best way to "fix" the narrowing in the aorta until he gets in there. His first option will be to cut out the narrow part and sew the two wide ends back together, but there needs to be enough elasticity in the artery to make this work. If there isn't, the second option will be to cut open the narrow part and sew in a patch. This is what the surgeon did to Ethan's aortic arch in the first surgery.
The surgeon also told us that there is a chance that the scar tissue from Ethan's previous surgery could have calcified to a point where he can't cut through it. If this happens, he won't be able to do anything right then. He will sew him back up and then we will have to schedule an open heart surgery where he will completely redo what he did the first time. (I got sick to my stomach at this point.) He doesn't think this will be the case, but they try to prepare us as best as possible.
Ethan is the first case on Monday morning, so we need to be at the hospital at 6am, which means they will probably take him from us around 7 or 7:30 for surgery. We have heard that surgery could last anywhere from 3 to 5 hours. We have been told to plan on a hospital stay of 5 to 7 days. The two main things that will determine how long Ethan has to stay in the hospital will be the chest tube drainage and his blood pressure.
Please pray for protection over Ethan's health over the next couple of days and for wisdom for the surgeon, anesthesiologist, nurses and everyone else involved in the surgery.
I will be updating this blog whenever I get a chance, so please check back often to see what is going on.
Psalm 46:1 "God is our refuge and strength, an ever present help in time of trouble."
Ethan's surgeon told us that he won't know the best way to "fix" the narrowing in the aorta until he gets in there. His first option will be to cut out the narrow part and sew the two wide ends back together, but there needs to be enough elasticity in the artery to make this work. If there isn't, the second option will be to cut open the narrow part and sew in a patch. This is what the surgeon did to Ethan's aortic arch in the first surgery.
The surgeon also told us that there is a chance that the scar tissue from Ethan's previous surgery could have calcified to a point where he can't cut through it. If this happens, he won't be able to do anything right then. He will sew him back up and then we will have to schedule an open heart surgery where he will completely redo what he did the first time. (I got sick to my stomach at this point.) He doesn't think this will be the case, but they try to prepare us as best as possible.
Ethan is the first case on Monday morning, so we need to be at the hospital at 6am, which means they will probably take him from us around 7 or 7:30 for surgery. We have heard that surgery could last anywhere from 3 to 5 hours. We have been told to plan on a hospital stay of 5 to 7 days. The two main things that will determine how long Ethan has to stay in the hospital will be the chest tube drainage and his blood pressure.
Please pray for protection over Ethan's health over the next couple of days and for wisdom for the surgeon, anesthesiologist, nurses and everyone else involved in the surgery.
I will be updating this blog whenever I get a chance, so please check back often to see what is going on.
Psalm 46:1 "God is our refuge and strength, an ever present help in time of trouble."
Pediatrician Appointment Today
Ethan saw his pediatrician today for a physical (this is a requirement one week before surgery.) Everything looks good so far. Just keeping my fingers crossed that he didn't get exposed to something while we were in the office.
We would really appreciate your prayers that he would stay healthy. We don't plan on taking him anywhere else this week, hoping that this will minimize his exposure to sick germs.
The big day is exactly one week away.
We would really appreciate your prayers that he would stay healthy. We don't plan on taking him anywhere else this week, hoping that this will minimize his exposure to sick germs.
The big day is exactly one week away.
New Surgery Date - April 30th
Ethan's surgery has been postponed to April 30 because he got sick last weekend with Roseola. His pre-op will be on April 27. One of the things they will do is lab work. Since Ethan had this viral infection, his blood tests could be negatively affected (don't really understand this fully). If this happens, surgery will be postponed.
Obviously, it is very frustrating to keep postponing. This is Ethan's 3rd surgery date. The surgery nurse who I have been working with said that lots of kids have to reschedule 3 to 4 times, either because of sickness or they get bumped because an emergency comes up.
We would really appreciate your prayers that Ethan can stay healthy and that we can keep this new date. It doesn't only affect us, it affects our family and friends who will be helping us out during Ethan's surgery and recovery.
Just an example of God's protection - Ethan's first surgery date was April 5. Well, he started running a fever (the first stage of Roseola) on April 6 and the fever lasted for 3 days and then the rash broke out. God knew all along that Ethan shouldn't have surgery on the 5th because he would have been recovering from surgery while his weakened body was having to also fight off a virus.
God is in control, even though it doesn't always look like it to me.
Listen to the CMH Radio Spot
If you are interested, you can click on the "Listen to Radio Spot" link over on the right under "helpful links" and you will be able to hear the commercial. The sound quality is a little muffled, but this way you don't have to download a .mp3 file. Hope you enjoy it! It will continue to run on the radio through the first week of June.
Children's Mercy Radio Spot
Brice, Ethan and I had the opportunity to do a recording for a radio "spot" promoting Children's Mercy Hospital. Beginning today, you can hear it on the following radio stations: KBEQ 104.3, KPRS 103.3, KUDL 98.1, Mix 93.3, Jack 105.1 and Star 102. It is my understanding that it will run for several weeks. We felt honored to be able to help promote an incredible children's hospital that God has used so much in Ethan's life. It was fun to do!
For those of you outside KC, you can listen online. Here is a website of KC radio stations and then you can select a specific radio station and be directed to that site.
http://kansascity.about.com/od/communityinformation/a/RadioStations.htm
For those of you outside KC, you can listen online. Here is a website of KC radio stations and then you can select a specific radio station and be directed to that site.
http://kansascity.about.com/od/communityinformation/a/RadioStations.htm
Cards, cards and more cards!
For about the past two weeks, we have received at least one card a day (some days two, three and even four!) from someone who is praying for our family. Thank you so much to all who have sent cards and emails. They are so encouraging and we are blown away by the support and encouragement.
Surgery is RESCHEDULED!
Ethan's surgery has been moved back a couple of weeks to Tuesday, April 24th. Why? Because there are currently a high number of kids in the hospital (some in the PICU) who have RSV and the surgeon doesn't want to risk exposing Ethan. We thought that April 5th was a "safe" enough date, but Dr. O'Brien prefers that it be later in the month. We were frustrated at first, but how can we argue with the fact that the surgeon has Ethan's best interests in mind?
It is a reality check, though. Ethan's surgery date could still get bumped if a case comes up that is an emergency. Fortunately, Ethan can safely wait a couple more weeks for surgery.
We will be able to spend Easter at home now!
It is a reality check, though. Ethan's surgery date could still get bumped if a case comes up that is an emergency. Fortunately, Ethan can safely wait a couple more weeks for surgery.
We will be able to spend Easter at home now!
Website Link
Check out the web link I posted to the right under "helpful links". It gives an explanation of Ethan's heart defect and also shows a great diagram of a normal heart vs. Ethan's heart. Ethan also has three other defects to the left side of his heart, but Coarctation of the Aorta is the most severe defect and the reason he will be having surgery.
Mix 93.3 Radiothon
Just wanted to ask all those in Kansas City to tune into Mix 93.3 today and tomorrow. They are live at Children's Mercy Hospital talking to families who have had experiences with CMH. Have your box of tissue handy! We are so fortunate to live close to such a great children's hospital with wonderful doctors and nurses. God used them to save Ethan's life!
You can also listen online at http://www.mix93.com/default.asp. Click "listen online" to the left of the page.
You can also listen online at http://www.mix93.com/default.asp. Click "listen online" to the left of the page.
Surgery is Scheduled!
If someone had told me while I was growing up that I would give birth to a little boy who would go through two heart surgeries by the time he was a year and a half, I don't think that I would have wanted to have kids. I am so glad that I did not know back then what the future would be because I would have made the wrong decision. And I am so glad that we have a faithful God and wonderful family and friends to carry us through.
Ethan will have his second heart surgery on Thursday, April 5th. It is a relief to have it scheduled and we are ready to have it behind us. No more "putting it off". Sometimes I get asked if we have ever checked into getting a second opinion. Well, we get about 10 opinions on Ethan every time his case is reviewed and the overwhelming consensus is that he needs this surgery now.
This surgery will not have to be open heart. It will be a "closed heart" surgery, where the surgeon will make the repair through a side incision (thoracotomy). Dr. O'Brien will clamp Ethan's aortic artery, cut out the narrow segment of his aortic artery and sew the wider ends back together. Sounds pretty straightforward, doesn't it?!? That is why he makes the big bucks (and deserves every penny, in my opinion!)
The good news about this type of heart surgery is that Ethan will not have to be on bypass (heart/lung machine), like he was the first time. This always adds increased risk. No one can tell us how long Ethan will be in the hospital after surgery - it will depend on how he does. But, we are planning on spending Easter in the hospital! I'll just have to pack Ethan's Easter basket along with all our other stuff.
Ethan's cardiologist is not going to treat Ethan's blood pressure increase right now - he really isn't too concerned about it. Ethan's BP is high in his upper extremities and normal in his lower extremities and putting him on BP meds would lower his blood pressure too much in his lower extremities. Surgery should hopefully correct his BP in his upper body, but time will tell on this.
The day before surgery, we will take Ethan in for all the "fun" pre-op tests. We will also meet with the anesthesiologist and the surgeon at that time. He will be in the PICU after surgery. Recovery will be rough. Ethan will be in lots of pain - it will hurt for him to breath and it will hurt for him to move, let alone be held. I can't even think about that - way too difficult.
It is important that Ethan stay healthy for the surgery so that we don't have to reschedule. Fortunately, we are headed into a healthier season soon.
We are so grateful for your faithfulness to pray for Ethan and our family.
Ethan will have his second heart surgery on Thursday, April 5th. It is a relief to have it scheduled and we are ready to have it behind us. No more "putting it off". Sometimes I get asked if we have ever checked into getting a second opinion. Well, we get about 10 opinions on Ethan every time his case is reviewed and the overwhelming consensus is that he needs this surgery now.
This surgery will not have to be open heart. It will be a "closed heart" surgery, where the surgeon will make the repair through a side incision (thoracotomy). Dr. O'Brien will clamp Ethan's aortic artery, cut out the narrow segment of his aortic artery and sew the wider ends back together. Sounds pretty straightforward, doesn't it?!? That is why he makes the big bucks (and deserves every penny, in my opinion!)
The good news about this type of heart surgery is that Ethan will not have to be on bypass (heart/lung machine), like he was the first time. This always adds increased risk. No one can tell us how long Ethan will be in the hospital after surgery - it will depend on how he does. But, we are planning on spending Easter in the hospital! I'll just have to pack Ethan's Easter basket along with all our other stuff.
Ethan's cardiologist is not going to treat Ethan's blood pressure increase right now - he really isn't too concerned about it. Ethan's BP is high in his upper extremities and normal in his lower extremities and putting him on BP meds would lower his blood pressure too much in his lower extremities. Surgery should hopefully correct his BP in his upper body, but time will tell on this.
The day before surgery, we will take Ethan in for all the "fun" pre-op tests. We will also meet with the anesthesiologist and the surgeon at that time. He will be in the PICU after surgery. Recovery will be rough. Ethan will be in lots of pain - it will hurt for him to breath and it will hurt for him to move, let alone be held. I can't even think about that - way too difficult.
It is important that Ethan stay healthy for the surgery so that we don't have to reschedule. Fortunately, we are headed into a healthier season soon.
We are so grateful for your faithfulness to pray for Ethan and our family.
Another Surgery
Just wanted to let everyone know that Ethan's surgeon and cardiologist (and the team of cardiologists at CMH) have decided that Ethan should have another surgery. The "coarctation" (narrowing) in his aortic artery needs to be repaired again and they don't see any reason to put it off any longer. (We have been putting it off since last July).
I will hopefully talk to the surgeon's office next week to set a date. So...we wait some more.
Would appreciate your prayers for all the details to come together and also for our family as there are so many emotions involved in going through surgery again.
God has a plan somewhere in all of this. It is just so difficult when you can't see that plan right away. But we trust God to continue to protect Ethan.
I will hopefully talk to the surgeon's office next week to set a date. So...we wait some more.
Would appreciate your prayers for all the details to come together and also for our family as there are so many emotions involved in going through surgery again.
God has a plan somewhere in all of this. It is just so difficult when you can't see that plan right away. But we trust God to continue to protect Ethan.
Article about Pediatric Cardiovascular Surgeon
This in an interesting article. It was posted on an internal message board at Children's Mercy and forwarded to me from a nurse who works there. Children's Mercy has two Pediatric Cardiovascular Surgeons - Dr. Lofland and Dr. O'Brien.
What It’s LikeOperating on a Heart no Bigger Than a Strawberry
Gary Lofland‚ MD‚ Section Chief of Cardiovascular SurgeryThe Joseph Boon Gregg/Missouri Endowed Chair in Pediatric Cardiac Surgery
Pediatric cardiac surgery is completely different than any other kind of surgery. We are operating on tiny hearts that are going to continue to have to grow‚ so always in the in the back of your mind you are factoring in the ability of this heart – that you are going to rearrange – to grow.
Sometimes it is like you have been given a heart kit and are expected to rearrange it and have it work. Unlike some other forms of surgery where you allow things to heal‚ what you do in the operation has to work the first time. It has to work.
Night Before SurgeryAlways the night before‚ I go through all the surgery I’ll be doing the next day and some I go through step by step. For some patients you not only have to have plan A‚ but a fall-back plan in case you encounter the unexpected or plan A starts to go awry because of previous surgeries‚ adhesions‚ things like that.
We try to do two surgeries every day‚ sometimes three. You have to plan out and risk stratify them. We try to do some of the more straight forward ones early on and follow up with the ones that are going to demand more time and thought. But you do that by thinking through them ahead of time.
I get plenty of sleep the night before‚ but there are some operations performed upon kids that one absolutely dreads because you know it is going to be a very‚ very risky outcome with a fine balance between success and failure. Those you wake up at night thinking about.
So‚ there is sort of that kind of pressure. Some of the things I used to really fret and stew about I’ve done so many times that I look at those as sort of relaxing operations. There are so many more complicated things out there to be done.
Day of SurgeryPrior to surgery‚ I don’t talk. I like to get into “the zone.” If I don’t engage in idle chit chat‚ it is not out of rudeness‚ it is out of discipline.From the time the patient arrives in the Operating Room‚ I stay in the OR. There is a lot of preparation going on with the patient‚ so until I make the skin incision‚ I just pace and wait. I just can’t wait to get started.
I really don’t feel any pressure during surgery‚ unless I encounter something that is completely unexpected. I like to operate quickly and detest inefficiency‚ lack of focus and wasting time. I have always felt that I work better under pressure‚ thinking clearly and quickly.
During SurgeryWhen you are doing this kind of surgery‚ you are operating under significant time constraints. Once you stop the heart or circulation‚ everything is basically dying. You are working against the clock‚ so when you encounter something unexpected‚ you have to think immediately. How am I going to deal with this? How am I going to fix this? You have to process that information pretty quickly.
One of my mentors‚ Dwight C. McGoon‚ MD‚ from the Mayo Clinic‚ wrote about the responsibility of the heart surgeon dealing with the great complexity of the heart and congenital defects‚ stating‚ “He or she must feel the weight of having accepted from the parents that strongest of all possible human obligations - the profound‚ primordial‚ instinctive identification and responsibility for an offspring.”
When you are doing this‚ you are basically accepting responsibility for a life as yet unlived.
So how do you deal with it? Well‚ I haven’t thought too much consciously about it. You just do.
After SurgeryAfter the surgery‚ I go talk to the family. What I say has lots to do with how the operation went‚ how sick the patient was going into surgery‚ and how sick the patient is going to be after surgery. Even if it is a complicated operation that went extremely well and the patient is doing just fine‚ that talk can be brief because everything went so well.
It’s only when you encounter things that you didn’t know about or when you encounter anatomy that even though you’ve repaired it using everything you have‚ and you’ve done the best you can with the tissues you have‚ but the child is going to need something else down the road … that talk is a little longer.
You always try to be optimistic but you also have to be very objective. I don’t hide anything with parents. I tell them exactly what we encountered‚ what we had to do‚ how the results look now and what might be expected. I try to be reassuring and respectful.
When you are faced with complicated anatomy and the operation went great and the repair looks perfect and still doesn’t work … that’s the frustration. This is not a profession that makes you arrogant. It makes you humble.
But even though it is stressful‚ it can be highly satisfying. As Dr. McGoon wrote‚ “Surely no more depth of sincerity can be imagined than that expressed in the ‘thank you’ of a parent for a safe and successful surgical endeavor‚ nor more pain‚ frustration and despair if the outcome should be the opposite.”
Pondering the Past and the FutureWhen I look back at the end of each surgery‚ and at the end of my career‚ I hope all my patients and families know that I did the absolute best that I could with every patient upon whom I operated. I would also like to think that I did something to push back the limits of what we are able to do.
What It’s LikeOperating on a Heart no Bigger Than a Strawberry
Gary Lofland‚ MD‚ Section Chief of Cardiovascular SurgeryThe Joseph Boon Gregg/Missouri Endowed Chair in Pediatric Cardiac Surgery
Pediatric cardiac surgery is completely different than any other kind of surgery. We are operating on tiny hearts that are going to continue to have to grow‚ so always in the in the back of your mind you are factoring in the ability of this heart – that you are going to rearrange – to grow.
Sometimes it is like you have been given a heart kit and are expected to rearrange it and have it work. Unlike some other forms of surgery where you allow things to heal‚ what you do in the operation has to work the first time. It has to work.
Night Before SurgeryAlways the night before‚ I go through all the surgery I’ll be doing the next day and some I go through step by step. For some patients you not only have to have plan A‚ but a fall-back plan in case you encounter the unexpected or plan A starts to go awry because of previous surgeries‚ adhesions‚ things like that.
We try to do two surgeries every day‚ sometimes three. You have to plan out and risk stratify them. We try to do some of the more straight forward ones early on and follow up with the ones that are going to demand more time and thought. But you do that by thinking through them ahead of time.
I get plenty of sleep the night before‚ but there are some operations performed upon kids that one absolutely dreads because you know it is going to be a very‚ very risky outcome with a fine balance between success and failure. Those you wake up at night thinking about.
So‚ there is sort of that kind of pressure. Some of the things I used to really fret and stew about I’ve done so many times that I look at those as sort of relaxing operations. There are so many more complicated things out there to be done.
Day of SurgeryPrior to surgery‚ I don’t talk. I like to get into “the zone.” If I don’t engage in idle chit chat‚ it is not out of rudeness‚ it is out of discipline.From the time the patient arrives in the Operating Room‚ I stay in the OR. There is a lot of preparation going on with the patient‚ so until I make the skin incision‚ I just pace and wait. I just can’t wait to get started.
I really don’t feel any pressure during surgery‚ unless I encounter something that is completely unexpected. I like to operate quickly and detest inefficiency‚ lack of focus and wasting time. I have always felt that I work better under pressure‚ thinking clearly and quickly.
During SurgeryWhen you are doing this kind of surgery‚ you are operating under significant time constraints. Once you stop the heart or circulation‚ everything is basically dying. You are working against the clock‚ so when you encounter something unexpected‚ you have to think immediately. How am I going to deal with this? How am I going to fix this? You have to process that information pretty quickly.
One of my mentors‚ Dwight C. McGoon‚ MD‚ from the Mayo Clinic‚ wrote about the responsibility of the heart surgeon dealing with the great complexity of the heart and congenital defects‚ stating‚ “He or she must feel the weight of having accepted from the parents that strongest of all possible human obligations - the profound‚ primordial‚ instinctive identification and responsibility for an offspring.”
When you are doing this‚ you are basically accepting responsibility for a life as yet unlived.
So how do you deal with it? Well‚ I haven’t thought too much consciously about it. You just do.
After SurgeryAfter the surgery‚ I go talk to the family. What I say has lots to do with how the operation went‚ how sick the patient was going into surgery‚ and how sick the patient is going to be after surgery. Even if it is a complicated operation that went extremely well and the patient is doing just fine‚ that talk can be brief because everything went so well.
It’s only when you encounter things that you didn’t know about or when you encounter anatomy that even though you’ve repaired it using everything you have‚ and you’ve done the best you can with the tissues you have‚ but the child is going to need something else down the road … that talk is a little longer.
You always try to be optimistic but you also have to be very objective. I don’t hide anything with parents. I tell them exactly what we encountered‚ what we had to do‚ how the results look now and what might be expected. I try to be reassuring and respectful.
When you are faced with complicated anatomy and the operation went great and the repair looks perfect and still doesn’t work … that’s the frustration. This is not a profession that makes you arrogant. It makes you humble.
But even though it is stressful‚ it can be highly satisfying. As Dr. McGoon wrote‚ “Surely no more depth of sincerity can be imagined than that expressed in the ‘thank you’ of a parent for a safe and successful surgical endeavor‚ nor more pain‚ frustration and despair if the outcome should be the opposite.”
Pondering the Past and the FutureWhen I look back at the end of each surgery‚ and at the end of my career‚ I hope all my patients and families know that I did the absolute best that I could with every patient upon whom I operated. I would also like to think that I did something to push back the limits of what we are able to do.
HOME
We got home about 6:15pm. Ethan was excited to be here and to see everyone. He ran around the whole evening like nothing was wrong - making up for having to sit and lay around all day, I guess.
We are so grateful for God's protection over our little guy. Everything went so smoothly and we know it is because of your prayers.
It is kind of weird in that we don't really know anything more than what we knew a month ago. His aortic artery is still narrow, but not dangerously narrow...his blood pressure is a little high...and the "when" of his next surgery is still unknown. But it is still positive at the same time because nothing is worse. So, overall, we are very happy and relieved.
I will keep you posted as to what Ethan's cardiologist and surgeon say about his cath results.
Good night!
We are so grateful for God's protection over our little guy. Everything went so smoothly and we know it is because of your prayers.
It is kind of weird in that we don't really know anything more than what we knew a month ago. His aortic artery is still narrow, but not dangerously narrow...his blood pressure is a little high...and the "when" of his next surgery is still unknown. But it is still positive at the same time because nothing is worse. So, overall, we are very happy and relieved.
I will keep you posted as to what Ethan's cardiologist and surgeon say about his cath results.
Good night!
Waiting to go home
We got to see Ethan again around noon. He had a sippy cup in his hands, his stuffed lion right beside him and the nurse was giving him Teddy Grahams - he seemed pretty content!
We met with Dr. Carlson and she showed us the pictures from his cath. She was pleased because the cath pictures of Ethan's heart confirmed that what the doctors have been seeing on echo is correct. The narrowing in his aortic artery is at an OK level. His aortic valve is actually doing well. So, there were no new surprises, which is an answer to prayer!
The fact that his blood pressure is on the high side is a common symptom of his defect. We knew this, but it is reassuring to have that confirmed by cath and to know that there isn't something else wrong that we might have been missing. He will have to be put on blood pressure meds, but I don't know when that will start.
The main purpose was to get an accurate look at what is going on with his heart and that was accomplished. The other purpose was to determine when he will need another surgery. In Dr. Carlson's opinion, surgery does not have to be in Ethan's immediate future. But, she will go over the results with Ethan's cardiologist, Dr. Ardinger, and Ethan's surgeon and they will have the ultimate decision. She can hopefully do that this week.
Right now, we are just trying to keep Ethan occupied and distracting him from wanting to get up and walk around. Kind of hard, but Aunt Stephanie and Uncle Andy are here and are really helping out with entertaining him.
We are supposed to be able to leave around 5:30pm.
Thanks so much for your continued prayers. They have been such an encouragement to us.
We met with Dr. Carlson and she showed us the pictures from his cath. She was pleased because the cath pictures of Ethan's heart confirmed that what the doctors have been seeing on echo is correct. The narrowing in his aortic artery is at an OK level. His aortic valve is actually doing well. So, there were no new surprises, which is an answer to prayer!
The fact that his blood pressure is on the high side is a common symptom of his defect. We knew this, but it is reassuring to have that confirmed by cath and to know that there isn't something else wrong that we might have been missing. He will have to be put on blood pressure meds, but I don't know when that will start.
The main purpose was to get an accurate look at what is going on with his heart and that was accomplished. The other purpose was to determine when he will need another surgery. In Dr. Carlson's opinion, surgery does not have to be in Ethan's immediate future. But, she will go over the results with Ethan's cardiologist, Dr. Ardinger, and Ethan's surgeon and they will have the ultimate decision. She can hopefully do that this week.
Right now, we are just trying to keep Ethan occupied and distracting him from wanting to get up and walk around. Kind of hard, but Aunt Stephanie and Uncle Andy are here and are really helping out with entertaining him.
We are supposed to be able to leave around 5:30pm.
Thanks so much for your continued prayers. They have been such an encouragement to us.
Cath is done
At 11:05am, the nurse came and told us that the cath was done. Ethan did well and Dr. Carlson did not balloon anything. We will talk to the cardiologist in about half an hour or so - right now we don't have any idea what she found. Hard to wait because my mind keeps going in all kinds of directions.
Don't know when I will udpate next, but I will let you know the outcome as soon as I can. Ethan will have bandages on both groins and will not be able to stand for 4-6 hours. This will be very challenging. He can sit and we can hold him, but not much more than that.
We won't be staying overnight.
Don't know when I will udpate next, but I will let you know the outcome as soon as I can. Ethan will have bandages on both groins and will not be able to stand for 4-6 hours. This will be very challenging. He can sit and we can hold him, but not much more than that.
We won't be staying overnight.
Cath has started
The nurse took Ethan from us at 9:20am. He did incredible the whole morning-wasn't fussy at all. Since his cath was moved up, I wasn't able to give him his juice or water this morning, but that didn't seem to bother him at all. This is amazing because he always wants his juice first thing when I bring him downstairs in the morning.
We talked to Dr. Carlson a few minutes before they took Ethan and she doesn't think she will balloon anything. If this is the case,then Ethan will not need to stay overnight - we will just hang around for 6 hours to make sure he doesn't have any complications from the anesthesia. Please pray that everything with his heart will look even better than they could hope for!
We can definitely see God's hand on this day already. Thanks for praying! Here he is in his hospital gown.
We talked to Dr. Carlson a few minutes before they took Ethan and she doesn't think she will balloon anything. If this is the case,then Ethan will not need to stay overnight - we will just hang around for 6 hours to make sure he doesn't have any complications from the anesthesia. Please pray that everything with his heart will look even better than they could hope for!
We can definitely see God's hand on this day already. Thanks for praying! Here he is in his hospital gown.
Cath is a GO!
Just talked to the cath lab and they have a bed for Ethan. Also their first case was cancelled, so Ethan's cath is moved up. We are leaving for the hospital and will let you know more later. Thanks for praying and please keep it up!
Ethan's Cath on Tuesday
Just a few details about this Tuesday. I have to call the hospital early that morning to see if they have an open bed for Ethan (they have been so full with sick kids this month). If they do not have a bed available, we will have to reschedule the cath.
Assuming that there will be a bed available, we have to be at the hospital at 8:30am. We were told that they would take Ethan from us between 10 and 11am and the cath will last 2-3 hours. I will try to update this blog throughout the day to let you know what is going on, so check back.
Dr. Carlson will be performing the cath. She may or may not try to balloon Ethan's aortic artery again, it will just depend on what she finds. Please pray that she will have wisdom concerning what will be best for Ethan.
We really appreciate your concern and prayers!
Assuming that there will be a bed available, we have to be at the hospital at 8:30am. We were told that they would take Ethan from us between 10 and 11am and the cath will last 2-3 hours. I will try to update this blog throughout the day to let you know what is going on, so check back.
Dr. Carlson will be performing the cath. She may or may not try to balloon Ethan's aortic artery again, it will just depend on what she finds. Please pray that she will have wisdom concerning what will be best for Ethan.
We really appreciate your concern and prayers!
Ethan's "heart" story - this is long!
Ethan was born on Sept 28, 2005 and weighed 9lb. 0oz. The delivery went great and we praised God for giving us another healthy baby. Ethan's pediatrician heard a heart murmur, but told us that that was pretty common and that she would monitor it. Ethan had no other signs that would suggest that anything more serious was going on. We took him home and thought all was well.
When Ethan was 6 days old, I woke him up around 4pm to feed him and he was pretty fussy and didn't want to eat. I tried to calm him down, but nothing was working and then I realized that he was breathing very rapidly. I knew that newborns commonly have irregular breathing, and I didn't want to be a paranoid mom, but I knew something was wrong. I called and talked to the pediatric nurse, told her Ethan was taking 15 breaths in 10 seconds and she told me to take him to Urgent Care at Children's Mercy South, that maybe he had a cold or something.
All five of us piled into the van. The trip to urgent care was pretty scary. Ethan started looking very pale and acted like he was struggling to breath. The nurse at the check-in desk listened to Ethan right away and they immediately took us all back. They kept moving us to different exam rooms until finally we were in a huge room. The doctor was asking me question after question, trying to figure out what was going on. The room filled up with so many people and we were asked to move to an "observation" room, where we were out of the way and could not hear what was going on, but could see everything. That was pretty terrifying. Every couple of minutes, a nurse would come and explain what was going on. She told us to call someone to come and pick Abigail and Isaac up.
Ethan was put on a ventilator because it was just too much for his little body to breath on its own. The doctor did all sorts of tests and came and told us that he suspected that something was wrong with Ethan's heart and that he needed to be transferred to the PICU (pediatric intensive care unit) at Children's Mercy Hospital downtown. The transport team came to take Ethan downtown. They put him in an incubator, still on the ventilator. They told us that we coudn't come in the ambulance with him and they also told us not to try and follow them because they would be going fast with all lights and sirens. They let us touch him before they left. It was all so unreal, standing there, watching the ambulance all lit up and sirens blaring, taking our little boy with them. The nurses who showed Brice and I the way out were crying - I am pretty sure they thought that Ethan wouldn't live. He was so sick.
Ethan arrived at the PICU code blue. A chaplain met Brice and I in the waiting room. She told us that the hospital had paged her. We didn't want to talk to her, we just wanted to know what was going on with Ethan. It seemed like we waited forever by the time the cardiologist came out to talk to us. It was about 11pm. He sat down and the first thing he said was that Ethan had been born with a serious heart defect. How do you respond to something like that? He had done an echocardiogram and it showed that the left side of Ethan's heart was small and underdeveloped. The defect was called Hypoplastic Left Heart Syndrome. He explained that this defect is not correctable and that a series of 3 surgeries would be needed to re-route the flow of blood through the right side, leaving the left side unused. We were in shock.
He took us back into the PICU to see Ethan. He had his own room and was laying in a little bed with machines all around him and tubes everywhere. We just sat there, looking at him. The attending doctor came by and asked us if we understood the seriousness of Ethan's condition and we told him that we did. It is an understatment to say that that was a long night.
The next morning, the cardiologist told us that they might have some better news about Ethan's diagnosis, but that they were still looking at additional test results and that he would come by later in the day. That gave us some hope.
We talked to the cardiologist again that afternoon and he explained that after studying Ethan's echo results some more and and doing what he called "fancy math", they had changed Ethan's diagnosis to Coarctation of the Aorta (narrow aortic artery), along with aortic valve stenosis, mitral valve stenosis, and a VSD (hole in the heart). This was a drastic change in diagnosis and much more positive in the long run for Ethan because this was a fixable defect. Praise God!
So, when Ethan was 13 days old, he had open heart surgery. The surgeon slit open Ethan's aortic artery and sewed in a human tissue "patch" in order to widen it and allow blood to flow through it. The surgery went well and Ethan came through it with flying colors. The next several days were challenging, but Ethan did well. He was weaned off of the ventilator and all the meds. It was very difficult to see him in pain. He caught back on to eating pretty quickly. And amazingly, we took him home 5 days after surgery! I cried the whole way home because there was a point where I didn't think that we would ever be able to bring him home again. The doctors and nurses told us several times how fortunate Ethan was to have such observant parents because just a few more hours and he would have died from heart failure. Ethan is a living example of God's grace in our lives.
Ethan's first year was pretty up and down. When he was two months old, he had to have his first heart catheterization and balloon to re-widen his aortic artery. At five months, his aortic artery re-narrowed again and he had to have his second heart cath and balloon. He has remained pretty stable since then, but over the last few months, his blood pressure has been creeping up and this is the main reason that his cardiologist wants Ethan to have this third heart cath. The main purpose of this cath is to get pictures of his heart.
When Ethan was 6 days old, I woke him up around 4pm to feed him and he was pretty fussy and didn't want to eat. I tried to calm him down, but nothing was working and then I realized that he was breathing very rapidly. I knew that newborns commonly have irregular breathing, and I didn't want to be a paranoid mom, but I knew something was wrong. I called and talked to the pediatric nurse, told her Ethan was taking 15 breaths in 10 seconds and she told me to take him to Urgent Care at Children's Mercy South, that maybe he had a cold or something.
All five of us piled into the van. The trip to urgent care was pretty scary. Ethan started looking very pale and acted like he was struggling to breath. The nurse at the check-in desk listened to Ethan right away and they immediately took us all back. They kept moving us to different exam rooms until finally we were in a huge room. The doctor was asking me question after question, trying to figure out what was going on. The room filled up with so many people and we were asked to move to an "observation" room, where we were out of the way and could not hear what was going on, but could see everything. That was pretty terrifying. Every couple of minutes, a nurse would come and explain what was going on. She told us to call someone to come and pick Abigail and Isaac up.
Ethan was put on a ventilator because it was just too much for his little body to breath on its own. The doctor did all sorts of tests and came and told us that he suspected that something was wrong with Ethan's heart and that he needed to be transferred to the PICU (pediatric intensive care unit) at Children's Mercy Hospital downtown. The transport team came to take Ethan downtown. They put him in an incubator, still on the ventilator. They told us that we coudn't come in the ambulance with him and they also told us not to try and follow them because they would be going fast with all lights and sirens. They let us touch him before they left. It was all so unreal, standing there, watching the ambulance all lit up and sirens blaring, taking our little boy with them. The nurses who showed Brice and I the way out were crying - I am pretty sure they thought that Ethan wouldn't live. He was so sick.
Ethan arrived at the PICU code blue. A chaplain met Brice and I in the waiting room. She told us that the hospital had paged her. We didn't want to talk to her, we just wanted to know what was going on with Ethan. It seemed like we waited forever by the time the cardiologist came out to talk to us. It was about 11pm. He sat down and the first thing he said was that Ethan had been born with a serious heart defect. How do you respond to something like that? He had done an echocardiogram and it showed that the left side of Ethan's heart was small and underdeveloped. The defect was called Hypoplastic Left Heart Syndrome. He explained that this defect is not correctable and that a series of 3 surgeries would be needed to re-route the flow of blood through the right side, leaving the left side unused. We were in shock.
He took us back into the PICU to see Ethan. He had his own room and was laying in a little bed with machines all around him and tubes everywhere. We just sat there, looking at him. The attending doctor came by and asked us if we understood the seriousness of Ethan's condition and we told him that we did. It is an understatment to say that that was a long night.
The next morning, the cardiologist told us that they might have some better news about Ethan's diagnosis, but that they were still looking at additional test results and that he would come by later in the day. That gave us some hope.
We talked to the cardiologist again that afternoon and he explained that after studying Ethan's echo results some more and and doing what he called "fancy math", they had changed Ethan's diagnosis to Coarctation of the Aorta (narrow aortic artery), along with aortic valve stenosis, mitral valve stenosis, and a VSD (hole in the heart). This was a drastic change in diagnosis and much more positive in the long run for Ethan because this was a fixable defect. Praise God!
So, when Ethan was 13 days old, he had open heart surgery. The surgeon slit open Ethan's aortic artery and sewed in a human tissue "patch" in order to widen it and allow blood to flow through it. The surgery went well and Ethan came through it with flying colors. The next several days were challenging, but Ethan did well. He was weaned off of the ventilator and all the meds. It was very difficult to see him in pain. He caught back on to eating pretty quickly. And amazingly, we took him home 5 days after surgery! I cried the whole way home because there was a point where I didn't think that we would ever be able to bring him home again. The doctors and nurses told us several times how fortunate Ethan was to have such observant parents because just a few more hours and he would have died from heart failure. Ethan is a living example of God's grace in our lives.
Ethan's first year was pretty up and down. When he was two months old, he had to have his first heart catheterization and balloon to re-widen his aortic artery. At five months, his aortic artery re-narrowed again and he had to have his second heart cath and balloon. He has remained pretty stable since then, but over the last few months, his blood pressure has been creeping up and this is the main reason that his cardiologist wants Ethan to have this third heart cath. The main purpose of this cath is to get pictures of his heart.
Why start a blog?
I, Heidi, have had an interest in blogging ever since Ethan was diagnosed with a congenital heart defect. I have been hesitant to even start a blog because I didn't want it to be "just another thing for me to do." But, over the last 17 months, it has been amazing to see the support of family and friends (and people we do not even know) and the interest you have had in keeping up with our lives, specifically Ethan.
And so, after praying about it and doing a little research, I have decided to go ahead with it. It is my prayer that this blog will be a visual reminder to me (and hopefully to you too) of how God is working and that even though life can be pretty difficult, God is still very good. It is probably pretty safe to assume that you, like me, forget quite often that this life is not about us, instead, it is all about God!
And so, after praying about it and doing a little research, I have decided to go ahead with it. It is my prayer that this blog will be a visual reminder to me (and hopefully to you too) of how God is working and that even though life can be pretty difficult, God is still very good. It is probably pretty safe to assume that you, like me, forget quite often that this life is not about us, instead, it is all about God!
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