Guest guest Posted April 5, 2010 Report Share Posted April 5, 2010 Aisha, My son had an AVSD repair at 4 months - and while the hospital stay feels long and you look at them and wonder - he will continue to amaze you. And the surgery begins a complete 180 - my little barely drank 3 ozs of milk in 45 minutes before surgery - as soon as they would let him he gulped 5 oz in 5 minutes. also had some leakage - but continues to get better as he grows. Our doctors have told us that even people without heart defects can have mild leakages. So I would think he'll continue on the right path there as well. now only has to see his cardiologist once a year. He was on the same meds after surgery for probably 4 or 5 months. now - nothing :-) Best of luck - you are through the hard part. ________________________________ From: Hellard the4hellards@... To: MosaicDS Sent: Sun, April 4, 2010 11:06:22 AM Subject: Re: Update Zedekiah  Aisha, Thank you for the update on Zedekiah! I'm glad to hear that he is recovering well each day. Just know that you are not alone in this! I'll keep you and little Zedekiah in my prayers! Keep the updates coming! Hellard IMDSA President brandyimdsa (DOT) org ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~ International Mosaic Down Syndrome Association PH: Toll Free: 1-888-MDS-LINK http://www.imdsa. org From: aishafwilliams@ yahoo.com <aishafwilliams@ yahoo.com> Subject: Update Zedekiah To: MosaicDS@yahoogroup s.com Date: Sunday, April 4, 2010, 9:25 AM  Hi all. It has been quite some time. I last posted when my son was born which was back in January. We recently had open heart surgery to repair his complete common AV Canal. It was a success with a few minor setbacks. He went into tacharrythmia after they removed the ventilator. And began to suffer from PVR (pulmonary vascular resistance) and needed more oxygen. After surgery there was also significant leakage from the mitral valve and they were considering going back in. As he began to heal the leaking which was considered to be moderate turned out to be trivial. He needed a pacemaker for a few days along with some additional oxygen. Now 9 days post-op, he is off of all IV meds and is currently on his heart and blood pressure meds only which are given orally. Not even pain meds. He did not have to be tubed(NG Tube) and I'm so grateful. Yesterday during his evening feed he drank 5 oz for his nurse. If anyone has any surgery stories I'd love to hear. This has been a very emotional ride for me. I wonder if we are really 'out of the woods'. Overall, I'm ecstatic for now taking it one day at a time. Aisha (Tre' 12, Avari 7 and Zedekiah 2 mos (DS) Sent via BlackBerry from T-Mobile Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2010 Report Share Posted April 5, 2010 I arrived back to the hospital yesterday and it was like a brand new chapter. He was talking and cooing. Unbelievable! Currently he still has the pacemaker wires in and is actually on IV Lasix due to the efficacy of receiving it thru the IV. Today should be the last day. He had a chest xray this a.m. Now we are just waiting on our cardiologist. Thanks to all for the words of encouragement. Sent via BlackBerry from T-Mobile Update Zedekiah To: MosaicDS@yahoogroup s.com Date: Sunday, April 4, 2010, 9:25 AM Â Hi all. It has been quite some time. I last posted when my son was born which was back in January. We recently had open heart surgery to repair his complete common AV Canal. It was a success with a few minor setbacks. He went into tacharrythmia after they removed the ventilator. And began to suffer from PVR (pulmonary vascular resistance) and needed more oxygen. After surgery there was also significant leakage from the mitral valve and they were considering going back in. As he began to heal the leaking which was considered to be moderate turned out to be trivial. He needed a pacemaker for a few days along with some additional oxygen. Now 9 days post-op, he is off of all IV meds and is currently on his heart and blood pressure meds only which are given orally. Not even pain meds. He did not have to be tubed(NG Tube) and I'm so grateful. Yesterday during his evening feed he drank 5 oz for his nurse. If anyone has any surgery stories I'd love to hear. This has been a very emotional ride for me. I wonder if we are really 'out of the woods'. Overall, I'm ecstatic for now taking it one day at a time. Aisha (Tre' 12, Avari 7 and Zedekiah 2 mos (DS) Sent via BlackBerry from T-Mobile Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2010 Report Share Posted April 5, 2010 We are with you. Everything will be fine. We pray for you. Our prayers will help. Floreta Bogdanescu From: aishafwilliams@ yahoo.com <aishafwilliams@ yahoo.com> Subject: Update Zedekiah To: MosaicDS@yahoogroup s.com Date: Sunday, April 4, 2010, 9:25 AM Â Hi all. It has been quite some time. I last posted when my son was born which was back in January. We recently had open heart surgery to repair his complete common AV Canal. It was a success with a few minor setbacks. He went into tacharrythmia after they removed the ventilator. And began to suffer from PVR (pulmonary vascular resistance) and needed more oxygen. After surgery there was also significant leakage from the mitral valve and they were considering going back in. As he began to heal the leaking which was considered to be moderate turned out to be trivial. He needed a pacemaker for a few days along with some additional oxygen. Now 9 days post-op, he is off of all IV meds and is currently on his heart and blood pressure meds only which are given orally. Not even pain meds. He did not have to be tubed(NG Tube) and I'm so grateful. Yesterday during his evening feed he drank 5 oz for his nurse. If anyone has any surgery stories I'd love to hear. This has been a very emotional ride for me. I wonder if we are really 'out of the woods'. Overall, I'm ecstatic for now taking it one day at a time. Aisha (Tre' 12, Avari 7 and Zedekiah 2 mos (DS) Sent via BlackBerry from T-Mobile Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2010 Report Share Posted April 5, 2010 Great news! We are thinking of you! Ross (keith 8 mds) Sent from my Verizon Wireless BlackBerry Update Zedekiah To: MosaicDS@yahoogroup s.com Date: Sunday, April 4, 2010, 9:25 AM Â Hi all. It has been quite some time. I last posted when my son was born which was back in January. We recently had open heart surgery to repair his complete common AV Canal. It was a success with a few minor setbacks. He went into tacharrythmia after they removed the ventilator. And began to suffer from PVR (pulmonary vascular resistance) and needed more oxygen. After surgery there was also significant leakage from the mitral valve and they were considering going back in. As he began to heal the leaking which was considered to be moderate turned out to be trivial. He needed a pacemaker for a few days along with some additional oxygen. Now 9 days post-op, he is off of all IV meds and is currently on his heart and blood pressure meds only which are given orally. Not even pain meds. He did not have to be tubed(NG Tube) and I'm so grateful. Yesterday during his evening feed he drank 5 oz for his nurse. If anyone has any surgery stories I'd love to hear. This has been a very emotional ride for me. I wonder if we are really 'out of the woods'. Overall, I'm ecstatic for now taking it one day at a time. Aisha (Tre' 12, Avari 7 and Zedekiah 2 mos (DS) Sent via BlackBerry from T-Mobile Quote Link to comment Share on other sites More sharing options...
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