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Manning received his heart on Sunday, Sept. 28.
This is the latest from his Mom's blog.........10/1/08
Manning has taken big steps today.
Manning had a good night. He has so much energy he has quit sleeping. He had his last pheresis treatment this morning. They took out two of his lines and his Foley Catheter.He did well on the pressure support last night so they extubated him at about noon today. So far he is doing well and he is on 2 liters of oxygen with a nose canula. He has been playing and kicking. He is like a completely different child. It has been an exciting day for Manning and he has taken some big steps in his recovery. James had to go back home this morning to return to work so he missed all the excitement. I just hope and pray that he continues to progress in a positive direction. Manning being extubated is a huge deal because he has been on the vent for so long. I may even get to hold this afternoon if he continues to do well. Please pray that Manning remains extubated. I am just so happy to see my baby so active. James and I feel so blessed that our child has been given this wonderful gift. We are so thankful to the donor family and thanks to all of you for keeping them in your prayers during their time of loss. Thanks to all who continue to pray and follow Manning through this journey. We really appreciate the possitive messages we receieve on his carepage. It is nice to know that people are thinking about us and that others care.
Great news about baby Manning! May God continue to strengthen him and be with your family and everyone who is caring for him. Thanks for keeping us informed. God bless you.
Manning had a stressful day.
I did get to hold Manning yesterday for a long time and it was wonderful. He had a good night but his day today was a little busy and stressful. When I got to the hospital this morning he was sitting in his therapy seat and appeared to be doing well. He fell asleep sitting in the seat. His nurse told me that his drain tube was going to be taken out and wanted to know if I wanted to hold him until they arrived. So of course I took up on that opportunity and the nurse handed Manning to me. She noticed that he stayed asleep and had no response to being shifted and moved from the bed to my arms. She called his name out and tried to awaken him but he had no response. He appeared lifeless and his pupils were small. The nurse quickly called the doctors in and they checked him out. They concluded that he had a seisure and since he was not moving his right side he may have suffered a stroke.They ordered a CT Scan, EEG and a consultation with Neurology. The CT Scan did not reveal any major head bleeds but they told me that they are not always accurate and do not always show up soon after an episode. The EEG showed some slow waves which indicates that he did have a seisure and could possible have another.They gave him one dose of antiseisure medication and if he has another seisure they will start him back on the med for more long term. The neurology team told me that seisures after posttransplant do happen sometimes especially if there is a long bypass time during the transplant. They are recomending a MRI but he can't have one until he is more stable and has his pacer wires taken out. They told me that it is possible that he had a very slight stroke that triggered the seisure but will not be able to get more info until a MRI is completed. The other issue is that his CVP is high which indicates concerns with his heart and fluid retention. His face is a little swollen and he has not had much urine output today. They did a Echo yesterday that idicated that his heart function was ok so they are just going to keep a close eye on it.His O2 sats did drop into the low 90's so they increased his O2 up to 3 liters. They also did a chest X-ray today because he is diminished on one side and sounds really junky. He does not cough on his own so they are using a cough assist machine and doing lots of sunctioning. The good new is that he is more responsive and active and started moving his right side.
[SIZE=3] October 9, 2008 Manning is Officially a 7 Wester. Manning is officially a patient of 7 West. He has graduated to the step down floor. They are increasing his feeds every 8 hours and so far he has been keeping them down. He has been smiling, laughing and playing. He has been working hard in gaining more strength by sitting in his bumbo chair. The nurses are starting to let me be more hands on. with his feeds and meds. So I am in training now. I do worry about being a mom to a transplant baby. I hope I can handle the challenges. They have a plan to wean his pain meds and are working towards getting all his meds oral. We are pretty much settled in our room. The doctors tell me that Manning has several issues to work on and will most likely be here for 2 weeks. Manning is progressing well for as sick as he was and he is looking so much better. Thank you to all of you who continue to think of us and pray.[/SIZE]
Thank you so much Oakie for introducing us to Baby Manning and his wonderful gift of a new healthy heart.
I continue to pray for Baby Mannings healing and for his wonderful parents who share his journey with us..and very special prayers of healing and blessings for the family of the donor whose child is safe and happy in the lap of Jesus.
Manning is progressing slowly.
Manning is continuing to make slow progess. They are taking him off the Hydromorphone at 6:00 PM. They are weening him slowly because of their concern with withdrawl. He has continuous feeds and has been keeping them down so they are starting him on bolis feeds and spreading the times out.Dr.Huddeleston says that he will have to have a swallow study before we can start feedinghim by mouth. The doctors have ordered a consultation with rehabilitation to address his weakness and muscle tone. He may go to the rehab floor for more intensive treatment for a few weeks or have out patient rehab for a few weeks before we go home. The goal today is to ween his oxygen from 1/2 to 1/8. Manning has been so happy and playful. Everytime that Manning smiles I think of the little angel that gave him life.
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He isn't out of the woods yet!
