purplebee
Drama Llama
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Posts: 6,754
Jun 27, 2014 20:37:34 GMT
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Post by purplebee on Mar 10, 2017 21:19:24 GMT
How sad to hear this latest update. Praying hard for a miracle for Baby A.
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AllieC
Pearl Clutcher
Posts: 3,063
Jul 4, 2014 6:57:02 GMT
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Post by AllieC on Mar 10, 2017 21:31:51 GMT
What a rollercoaster the little one is enduring. I'm so sorry to read the latest update. Sending thoughts to his family x
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Post by brandnewrollerskates on Mar 10, 2017 21:56:41 GMT
Oh no, how sad. Lots of prayers for the baby.
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Post by hdoublej on Mar 10, 2017 23:41:50 GMT
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!
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Deleted
Posts: 0
Jun 27, 2024 14:39:22 GMT
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Post by Deleted on Mar 11, 2017 1:12:46 GMT
So sad to hear about the suffering of this poor little baby and the anguish his family must be enduring. I hope that they are able to find a better donor heart for him and that the docs and amazing techniques they have can pull him through. Thank you for sharing. They are in my thoughts.
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Post by shescrafty on Mar 11, 2017 2:04:08 GMT
I know the heartache of the parents just having to wait and hope that what you want to happen will. I will continue to send thoughts of strength for the family and of course the sweet baby. Nobody (much less a child) should have to go through all that.
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quiltz
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Jun 29, 2014 16:13:28 GMT
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Post by quiltz on Mar 11, 2017 2:25:55 GMT
I know the heartache of the parents just having to wait and hope that what you want to happen will. I will continue to send thoughts of strength for the family and of course the sweet baby. Nobody (much less a child) should have to go through all that. ( ( ( hugs ) ) ) to you.
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blue tulip
Pearl Clutcher
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Jun 25, 2014 20:53:57 GMT
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Post by blue tulip on Mar 11, 2017 2:53:18 GMT
Wow, what an emotional roller coaster. ![:(](//storage.proboards.com/5645536/images/mYSUyHtG9Jrcmm_ydVcK.jpg) Keeping them in my prayers. Thanks for the updates!
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Post by hdoublej on Mar 11, 2017 2:59:15 GMT
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Post by anniefb on Mar 11, 2017 3:07:29 GMT
So sorry to hear about this latest setback ![:(](//storage.proboards.com/5645536/images/mYSUyHtG9Jrcmm_ydVcK.jpg) Continuing to pray.
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Post by Patter on Mar 11, 2017 12:09:06 GMT
So glad he can go back on the list though I sure was praying this heart would be the one. Praying he gets a new heart soon. Can't imagine what the family is going through!
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Deleted
Posts: 0
Jun 27, 2024 14:39:22 GMT
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Post by Deleted on Mar 17, 2017 2:09:35 GMT
Any updates on this baby and his family?
I have been thinking of them every day hoping for some alleviation from their suffering and waiting. I hope that a donor heart can be found soon.
Please give us an update if or when you can.
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azredhead
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Jun 25, 2014 22:49:18 GMT
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Post by azredhead on Mar 17, 2017 2:55:42 GMT
OH GOSH! I so feel for them! I hope he continues to do well and they can find a heart again. Prayers for him and his family all who love him!
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Post by Patter on Mar 17, 2017 10:38:19 GMT
Oh would love an update too when you can.
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Post by hdoublej on Mar 20, 2017 14:26:31 GMT
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. @zingermack azredhead Patter I'm not getting notifications from Tapatalk so I didn't see that you had asked about him. Sorry! I appreciate you asking about him!
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purplebee
Drama Llama
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Jun 27, 2014 20:37:34 GMT
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Post by purplebee on Mar 20, 2017 14:36:05 GMT
Thanks for the update. Keeping Baby A in my prayers.....
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Deleted
Posts: 0
Jun 27, 2024 14:39:22 GMT
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Post by Deleted on Mar 20, 2017 14:45:12 GMT
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. @zingermack azredhead Patter I'm not getting notifications from Tapatalk so I didn't see that you had asked about him. Sorry! I appreciate you asking about him! NOTHING to be sorry about! Just wanted you to know he's still in many thoughts. I hope you have excellent news about this tiny fighter soon.
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Post by Patter on Mar 20, 2017 16:03:05 GMT
Thank you so much for the update. Continuing to pray for him!
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Post by LavenderLayoutLady on Mar 21, 2017 10:29:21 GMT
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. Continued prayers for him. He's a fighter.
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Post by hdoublej on Mar 27, 2017 14:36:06 GMT
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.
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Post by redshoes on Mar 28, 2017 0:03:57 GMT
Oh that sweet baby....thanks for the update. Praying his little body can get strong enough for a heart as soon as one becomes available.
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Sue
Pearl Clutcher
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Location: SE of Portland, Oregon
Jun 26, 2014 18:42:33 GMT
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Post by Sue on Mar 28, 2017 0:19:30 GMT
This is just breaking my heart. ![:(](//storage.proboards.com/5645536/images/mYSUyHtG9Jrcmm_ydVcK.jpg) Praying that he regains the strength and health needed for a transplant. God bless him and his parents.
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AllieC
Pearl Clutcher
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Jul 4, 2014 6:57:02 GMT
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Post by AllieC on Mar 28, 2017 1:41:17 GMT
Thanks you for updating, Baby A has been in my thoughts. It sounds like such a rollercoaster for his family. I really hope that he has a good outcome.
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kate
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Jun 26, 2014 3:30:05 GMT
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Post by kate on Mar 28, 2017 3:38:40 GMT
God bless that baby and family.
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Post by Patter on Mar 28, 2017 10:12:39 GMT
I am so sad for them. Praying that he can find a heart and be strong enough for the new one. Hugs and prayers to the family. I can't imagine!
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Post by hdoublej on Apr 3, 2017 17:48:30 GMT
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! ![:crying:](//storage.proboards.com/5645536/images/t4lmEAqHtTO6q6ksSmvP.jpg)
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quiltz
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Post by quiltz on Apr 3, 2017 18:19:38 GMT
Sending up prayers for this family. So many emotions in such a short time.
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River
Pearl Clutcher
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Location: Alabama
Jun 26, 2014 15:26:04 GMT
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Post by River on Apr 3, 2017 18:24:55 GMT
Thank you again for continuing to update us on Baby A.
Still praying for this little fighter and his family. May they find some small peace as they grieve the loss of Baby A's grandfather and continue to endure babies struggles.
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Post by Patter on Apr 3, 2017 18:57:15 GMT
So glad to read the update and that he is such a fighter. Praying for that heart to come soon, and so sorry about his grandfather. Heartbreaking!
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kate
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Post by kate on Apr 3, 2017 19:01:13 GMT
Praying that that family be lifted up by our prayers. Sweet baby A - hoping all gets better.
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