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Manning has energy
Manning was running a temp yesterday so they sent off cultures. They said that his donor had a small blood infection so they are treating Manning with antobiotics to cover it. At rounds last night they dicussed the possibility of the Pheresis process causing stress on his heart and giving him a temp. If that is the case they were thinking of discontinuing the Pheresis because it may not be worth the risk to put added stress on his heart and he has had the pheresis 3 times and may be enough. Dr. Canter decided to follow through with the Pheresis this morning because he wants to follow protocall as much as possible. His temp did creep up during the pheresis but they gave him tylenol to try to supress it and it seemed to work. He tolerated the remainder of the pheresis well. They took him off the pacemaker yesterday afternoon and he has been off ever since. He still has some rythem issues but they correct themselves and is tollerating being off the pacemaker. They did give him some extra blood last night. they lifted the paralytic off yesterday and he regained energy. He was kicking and moving his arms. He apparently played through the night and has been playing most of the day. They have decreased his vent settings and he is now on pressure support which means he is doing most of the work on his own. If he tolerates this well through today and tonight they are talking about extubating him as early as tomorrow or in a few days. He did have one spell today where he became very upset and his O2 sats dropped into the 50's. The nurse bagged him and sunctioned him and he seemed to be better. They think he had a plug in his ET Tube. James and I are just so happy to see the positive steps Manning is taking. He is a strong little guy and we are so thankful to the little angel who gave him the heart he so badly needed. The changes we are seeing in Manning have been amazing.We are also so thankful to the medical staff here at children's who have taken such wonderful care of Manning. They have not only taken care of Manning but have become a big support for us.They have all been so kind and caring to us.
Thank you, Oakie for these updates..Prayers continue for Baby Manning , his parents, and the caretakers..
The donors parents remain in my prayers..I pray that the Lord will bless them for this gift of life for another child..
I'm glad to hear that Baby Manning is doing better. My prayers and thoughts continue to be with all who love him and are caring for him. Thanks for sharing with us and God bless.
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.
Thank you Oakie..What a wonderful update..I pray that God wikll continue to heal this little fella..I continue to pray for the donors parents..I pray that more people would consider donating the wonderful gift of life..
Praying very hard during this most critical time for this baby..and praying that He will bless the donor family for their gift of life, and that they will find gentle closure for their tremendous loss...
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.
Once again, Oakie, thank you so much for this update..There are so many obstacles for this baby to overcome, and so many anxious ups and downs for his parents...Praying that God will be merciful, comforting and healing for baby Manning and all his family..
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He isn't out of the woods yet!
