They have a heart! Update #14
Mar 3, 2017 2:02:39 GMT
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freebird, Zee, and 21 more like this
Post by hdoublej on Mar 3, 2017 2:02:39 GMT
We live in a small town and there is a young couple who has a baby who was born with Hypoplastic Left Heart Syndrome. He is 6 months old and hasn't spent much time out of the hospital. They were told 7 weeks ago that a heart transplant was his only hope. It's been a rocky 7 weeks, they've had so many bad days that they weren't sure he would make it long enough to have a transplant.
They were notified a few hours ago that they have a heart that matches! He is going to surgery very soon (within the hour). Please say a prayer or good thoughts for this sweet family and their doctors. Please also remember the family that this heart is coming from. My heart breaks for them in their loss but I'm so thankful they have chosen to give life to someone else.
**Update #1**
At 5:00am Baby A's surgery was complete. The 7:00am update says they are having to pace his heart since his new heart is having a few issues with his right valve and right atrium. They will be putting in on the ECMO.
I'm not sure what that means to be honest. Any heart moms that can answer for me?
**Update #2**
The Dr told Baby A's parents that this surgery was one of the hardest he has performed in 10 years. The anatomy looks good but, for some reason, the new heart isn't working like he thinks it should be. Praying for good news soon.
**Update #3**
Baby A had a significant amount of blood loss, so they went back in and did exploratory surgery. His mitral valve was allowing back flow and causing blood to back up into his right atrium. The bleeding is getting better and the heart overall has improved since this morning. He is still supported on ECMO in order to allow his heart to rest. It's still too early to tell, but hopefully his new heart will continue to make progress.
Update #4 There wasn't really anything new to report this weekend. Baby A is still on ECMO. They will be reducing the ECMO today and checking heart function. I appreciate all the prayers and will update when I hear something today.
Update #5 They were not able to get good views during the echo but will try again later. Baby A's left leg has looked very mottled over the past few days due to lack of adequate blood flow but that is slowly starting to look better. The vascular team think his leg and foot will be fine. He is looking better in a couple of other ways as well. Hopefully all signs of a better echo!
Update #6 Baby A will be having a heart cath in the morning because they couldn't get a good view on the echo. The one thing they could see was that the left ventricle is not working. They will be looking tomorrow to possibly balloon or stent it or could be another operation.
Update #7 Baby A is back in his room and settled. Good news is the Dr found nothing to do today during the heart cath. He didn't find any significant narrowing, his leg looks like it's getting decent blood flow now, and his pulmonary arteries look good. The donor heart may just need more time. While in the cath lab the ECMO nurse clamped out, but not for long enough to be able to tell if his left ventricle is working. The plan for the remainder of the day is to continue to diurese and allow him to rest. The team will possibly push him over the next few days by weaning the flow and ultimately seeing what the donor heart can do.
We are hoping, praying, and believing that the donor heart WILL start working!
Update #8 Baby A's heart is not working properly. They are at the point that they are waiting to hear if they will be placed back on the donor list or not.
Update #9 Sorry I didn't update before today but there wasn't a lot of information available. They were basically waiting for the heart to start working and it hasn't. The Drs. have determined that there is something wrong with the donor heart and not Baby A so they have decided to place him back on the transplant list. His risk of infection is higher while he continues to be on ECMO. He will be placed on the bottom of the list for transplant which has an average of a 6 week wait. His odds are not the best but this is the only option right now. Thank you for your prayers!
Update #10 Baby A has spent 102 days in the PCICU. The Drs have gone back in and created an atrial septal defect in order to be able to mostly close his chest to help with the risk of infection. His surgery to close his chest went well and he is still fighting! Still on the waiting list for another donor heart.
Update #11 Baby A is still waiting on a heart. His kidney function is has declined and his BUN and creatinine levels are high. We are praying that this is a result of a CT with contrast they did a couple of days ago and it will fix itself. As of right now, if a heart were to become available, he is not healthy enough to have surgery. They have started him on continuous renal replacement therapy and are praying his numbers will be back to his baseline when the CRRT machine is turned off. If his kidney function does not get better, he will be taken off the heart transplant list. On a positive note, he was able to open his eyes and has peed a few times on his own! We are praying this is a sign of improvement and it will continue.
Update #12 Baby A is now 7 months old! A quote from his mother: "Sometimes I get sad thinking he has spent 6 out of 7 months in the hospital, but it's hard to be too sad because he's truly a miracle. Poor baby doesn't know any different than to fight for his life. He hasn't been held since he was 3 months old, he hasn't known a life without being intubated and sedated, but he fights. We just know God has the perfect heart for him!" Baby A's is peeing on his own and his numbers are improving but his right lung has collapsed. Still waiting on a new heart and praying the timing is perfect so he can be healthy enough to receive it. Also, Baby A's grandfather has been fighting cancer and was sent home on hospice a few weeks ago. He passed away yesterday. My heart just breaks for them!
Update #13 Baby A has been taken off the transplant list due to kidney failure. The transplant team said they do not look for his kidneys to improve and that he probably won't make it. The next few days are critical. His kidneys have to start working on their own. If they don't, his parents will have to make the decision about whether or not to continue life support.
Update#14 Baby A will be taken off life support today. "We love Baby A so much that we are going to let him go home where he won't have to struggle and fight." ~ a quote from his mom. Please keep them in your prayers as they say goodbye today.
They were notified a few hours ago that they have a heart that matches! He is going to surgery very soon (within the hour). Please say a prayer or good thoughts for this sweet family and their doctors. Please also remember the family that this heart is coming from. My heart breaks for them in their loss but I'm so thankful they have chosen to give life to someone else.
**Update #1**
At 5:00am Baby A's surgery was complete. The 7:00am update says they are having to pace his heart since his new heart is having a few issues with his right valve and right atrium. They will be putting in on the ECMO.
I'm not sure what that means to be honest. Any heart moms that can answer for me?
**Update #2**
The Dr told Baby A's parents that this surgery was one of the hardest he has performed in 10 years. The anatomy looks good but, for some reason, the new heart isn't working like he thinks it should be. Praying for good news soon.
**Update #3**
Baby A had a significant amount of blood loss, so they went back in and did exploratory surgery. His mitral valve was allowing back flow and causing blood to back up into his right atrium. The bleeding is getting better and the heart overall has improved since this morning. He is still supported on ECMO in order to allow his heart to rest. It's still too early to tell, but hopefully his new heart will continue to make progress.
Update #4 There wasn't really anything new to report this weekend. Baby A is still on ECMO. They will be reducing the ECMO today and checking heart function. I appreciate all the prayers and will update when I hear something today.
Update #5 They were not able to get good views during the echo but will try again later. Baby A's left leg has looked very mottled over the past few days due to lack of adequate blood flow but that is slowly starting to look better. The vascular team think his leg and foot will be fine. He is looking better in a couple of other ways as well. Hopefully all signs of a better echo!
Update #6 Baby A will be having a heart cath in the morning because they couldn't get a good view on the echo. The one thing they could see was that the left ventricle is not working. They will be looking tomorrow to possibly balloon or stent it or could be another operation.
Update #7 Baby A is back in his room and settled. Good news is the Dr found nothing to do today during the heart cath. He didn't find any significant narrowing, his leg looks like it's getting decent blood flow now, and his pulmonary arteries look good. The donor heart may just need more time. While in the cath lab the ECMO nurse clamped out, but not for long enough to be able to tell if his left ventricle is working. The plan for the remainder of the day is to continue to diurese and allow him to rest. The team will possibly push him over the next few days by weaning the flow and ultimately seeing what the donor heart can do.
We are hoping, praying, and believing that the donor heart WILL start working!
Update #8 Baby A's heart is not working properly. They are at the point that they are waiting to hear if they will be placed back on the donor list or not.
Update #9 Sorry I didn't update before today but there wasn't a lot of information available. They were basically waiting for the heart to start working and it hasn't. The Drs. have determined that there is something wrong with the donor heart and not Baby A so they have decided to place him back on the transplant list. His risk of infection is higher while he continues to be on ECMO. He will be placed on the bottom of the list for transplant which has an average of a 6 week wait. His odds are not the best but this is the only option right now. Thank you for your prayers!
Update #10 Baby A has spent 102 days in the PCICU. The Drs have gone back in and created an atrial septal defect in order to be able to mostly close his chest to help with the risk of infection. His surgery to close his chest went well and he is still fighting! Still on the waiting list for another donor heart.
Update #11 Baby A is still waiting on a heart. His kidney function is has declined and his BUN and creatinine levels are high. We are praying that this is a result of a CT with contrast they did a couple of days ago and it will fix itself. As of right now, if a heart were to become available, he is not healthy enough to have surgery. They have started him on continuous renal replacement therapy and are praying his numbers will be back to his baseline when the CRRT machine is turned off. If his kidney function does not get better, he will be taken off the heart transplant list. On a positive note, he was able to open his eyes and has peed a few times on his own! We are praying this is a sign of improvement and it will continue.
Update #12 Baby A is now 7 months old! A quote from his mother: "Sometimes I get sad thinking he has spent 6 out of 7 months in the hospital, but it's hard to be too sad because he's truly a miracle. Poor baby doesn't know any different than to fight for his life. He hasn't been held since he was 3 months old, he hasn't known a life without being intubated and sedated, but he fights. We just know God has the perfect heart for him!" Baby A's is peeing on his own and his numbers are improving but his right lung has collapsed. Still waiting on a new heart and praying the timing is perfect so he can be healthy enough to receive it. Also, Baby A's grandfather has been fighting cancer and was sent home on hospice a few weeks ago. He passed away yesterday. My heart just breaks for them!
Update #13 Baby A has been taken off the transplant list due to kidney failure. The transplant team said they do not look for his kidneys to improve and that he probably won't make it. The next few days are critical. His kidneys have to start working on their own. If they don't, his parents will have to make the decision about whether or not to continue life support.
Update#14 Baby A will be taken off life support today.
"We love Baby A so much that we are going to let him go home where he won't have to struggle and fight." ~ a quote from his mom. Please keep them in your prayers as they say goodbye today.
