Guest guest Posted September 1, 1999 Report Share Posted September 1, 1999 Hello : It makes me sad too that our little ones need major surgery. is 8, however I remember her open heart surgery at 1 month old, for the same condition, as if it were yesterday. I will carry Josh in my thoughts and prayers. Today is strong, despite the fact that the surgeons needed to remove her pulmonary valve. She swims with assist, has the stamina for full time school since she was three, runs, jumps, dances and plays. Her upper body strength is weak, but she will pedal her adapted tricycle, rollerblade with assistance, and loves to run hand in hand. She's up to 8 minutes of running in PE!! An aerobic queen! Open heart surgery has come so far in the last twenty years. Kids have wonderful outcomes. I know...I live with one!!! Good Luck Garewski wife to Jeff, mom to Dan 14, Ali 11, and 8 CHaRGE At 12:25 AM 8/31/1999 -0600, you wrote: > > >Just wanted to let everyone know that Josh's heart cath on Thurs. went >very well. He did lose a little bit of blood and so they gave him a >transfusion but we left the hospital that same day. The cardiologist >showed us the pictures from the heart cath and it was fascinating to >actually see the problems he had with his heart. We have scheduled his >surgery to do his tetrollogy repair for the middle of October. I almost >feel like I should be preparing him (and me) for it in some way. Also, >I just look at his beautiful little chest and know that soon he will >have a big scar! :-( That is a small price to pay for having a heart >that's fixed but it still makes me sad. > >mom to (7 mo) > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 1999 Report Share Posted September 1, 1999 In a message dated 08/30/1999 11:37:35 PM Pacific Daylight Time, bryanorjenny@... writes: > Also, > I just look at his beautiful little chest and know that soon he will > have a big scar! :-( That is a small price to pay for having a heart > that's fixed but it still makes me sad. > , Destiny did not have to have open heart surgery, but did have a PDA and CoArch repair when she was 8 weeks old. The BIG incision is on her left side. I was (and still am) eternally grateful her heart problems were fixed, but the scar still makes me a little sad. I remember feeling very sad post op when everything was fine, but my beautiful child was going to carry that scar forever. Several months later it was obvious Destiny wasn't going to swallow and the reflux was awful enough to need more surgery. Even before the surgery I anticipated the sadness of never seeing Destiny's unscarred tummy again so I made my husband take a whole roll of film just of her naked tummy so I'd never forget what it looked like. Well, it's been over 6 years since the heart surgery and more than 5 1/2 years since the g-tube and fundo and I still look at those scars daily (I have to bathe and dress her). The tinge of sadness is there, but so is the gratitude and pride of accomplishment that she's made it through it all and remains a happy and HEALTHY kid. , you have the right to mourn the loss of 's unscarred chest, but those feeling will fade. In their place will be unending gratitude that he's here for you to look at them! Take Care! (Destiny 6 1/2 CHARgE, Zachary 4) NYC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 1999 Report Share Posted September 1, 1999 , I think of 's scars as her beauty mark. If she didn't have the scars, we wouldn't be able to enjoy her beauty. had the g-tube and fundo at one month, PDA ligation at 3 months. Then she later had the pyloroplasty to aid in the stomach emptying. The surgeon was able to cut in the same line as the g-tube. This year at age 12, we had to make a tough decision to correct her reflux. Medications weren't working and she was wanting to eat every 1/2 hour for relief. Her fundo was tight and intact which left us with the option of having her esophagus disconnected from the stomach and reattached at the intestine. I struggled with the fact that I was going to make a decision that would leave my child as a tube feeder the rest of her life. I too thought of her tummy and another scar. That thought sickened me especially when he said that he couldn't cut through the existing scar he would need to do a vertical cut to get to the organs that he needed. But now that it is over, we realized what a positive change it was for her. Not only is she no longer in pain from reflux, but her scar went from a negative sign on her belly to a big ol' PLUS sign. We say that we sent a negative tummy into the operating room and it came out positive. The sadness of the scar will fade but the beauty will show forever. Sheryl D, mom to Mitch 13, (turning 13 on Sept 11) CHARGE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 1999 Report Share Posted September 1, 1999 LJoyC@... wrote: > > From: LJoyC@... > > In a message dated 08/30/1999 11:37:35 PM Pacific Daylight Time, > bryanorjenny@... writes: > > > Also, > > I just look at his beautiful little chest and know that soon he will > > have a big scar! :-( That is a small price to pay for having a heart > > that's fixed but it still makes me sad. > > > > , > > Destiny did not have to have open heart surgery, but did have a PDA and > CoArch repair when she was 8 weeks old. The BIG incision is on her left side. > I was (and still am) eternally grateful her heart problems were fixed, but > the scar still makes me a little sad. I remember feeling very sad post op > when everything was fine, but my beautiful child was going to carry that scar > forever. Several months later it was obvious Destiny wasn't going to swallow > and the reflux was awful enough to need more surgery. Even before the surgery > I anticipated the sadness of never seeing Destiny's unscarred tummy again so > I made my husband take a whole roll of film just of her naked tummy so I'd > never forget what it looked like. Well, it's been over 6 years since the > heart surgery and more than 5 1/2 years since the g-tube and fundo and I > still look at those scars daily (I have to bathe and dress her). The tinge of > sadness is there, but so is the gratitude and pride of accomplishment that > she's made it through it all and remains a happy and HEALTHY kid. > > , you have the right to mourn the loss of 's unscarred chest, but > those feeling will fade. In their place will be unending gratitude that he's > here for you to look at them! > > Take Care! > (Destiny 6 1/2 CHARgE, Zachary 4) > NYC , I remember just before MacKenzie went in to have her G-tube I was very teary and upset. My husband thought it was just the whole surgery thing that bothered me, but I told him this would be the last time we'd see her little belly without a tube in it, probably for several years. It actually looks odd to me now to see a baby without one. MacKenzie has the same scar under the arm for heart surgery, even though it wasn't an open heart it left a huge scar, probably about 6in. Jeanie Colp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 1999 Report Share Posted September 1, 1999 Subject: Re: heart cath From: toby.c@... (Toby Colp) LJoyC@... wrote: > > From: LJoyC@... > > In a message dated 08/30/1999 11:37:35 PM Pacific Daylight Time, > bryanorjenny@... writes: > > > Also, > > I just look at his beautiful little chest and know that soon he will > > have a big scar! :-( That is a small price to pay for having a heart > > that's fixed but it still makes me sad. > > , I understand how you are feeling. At first I was also sad because of the big scar. But now, when I see a boy of Barts age, with no scar on his chest, I think that there is missing something. I call the scar Barts zipper and we make a sort of 'zipnoise' when touching it. Now, almost 3 years after his surgery, it is so normal for us. I'm sure it will be normal for you too, one day. Good luck. (monique@...) Mom of Bart (1-8-96, charge) and Siebe (3-9-98/3-9-98, HLHS) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 1999 Report Share Posted September 2, 1999 Jeanie, The procedure that I talked about to disconnect the esophagus is a very radical procedure. In January when we visited the surgeon, my options were to redo the fundo that according to the endoscopy appeared to be strong and intact, or to do the disconnect. The disconnect was considered a non-reversible surgery. It did mean that she would not be able to take food by mouth because it would not go to the stomach for digestion. When I went back for another consult, the Dr. said that in February it was in the New England Journal of Medicine stating that they have been successful in reversing a few of the cases. The procedure has a very high complication rate (35% I believe). The esophagus does not stitch well I guess and a leak can occur. This happens right away if it is going to happen. I don't know how the Upper GI's are being done, but having the tube, the doctors always put the barium in through the tube and the results were always the same, no reflux. When the endoscopy showed that there was severe esophagitus (sp), they put the barium down her throat. Doing it that way showed that her esophagus muscles did not work therefore when she did reflux the acids would sit in her esophagus and it was eating away at it. It's not a surgery that I would recommend for everyone. But it is an option after everything else fails to correct the reflux or ease the pain. Sheryl D, mom to Mitch 13, & (turning 13 on Sept 11) CHARGE Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 1999 Report Share Posted September 2, 1999 , Aubree my daughter has had 3 open heart surgeries. She has a very large scar. Hers keloid (sp), which is actually scar tissue. But trust me, we are so very proud of that scar. She shows it to everyone. We are just thankful that the surgeon that did her surgery was around. Her last surgery was the hardest for us. We were told that it was very dangerous because scar tissue was probably on the heart which could cause bleeding and may not stop. But the little trooper she is she fought all the way. Remember, 's scar may disappear. My Mom just went through open heart surgery in June and you can hardly see hers. Someone also mentioned to get plenty of sleep. Trust me, you will need a lot. The night before Aubree's surgeries, I stayed up until 2:00 AM and had to be at the hospital at 7:00 AM. After the surgeries we had to be there because no one could sign to her. I was worn out by 10:00 PM that night. It's easier said than done, but try to get plenty of sleep because they will need you after the surgery. Wells ---------- > > To: CHARGEonelist > Subject: heart cath > Date: Tuesday, August 31, 1999 1:25 AM > > > > Just wanted to let everyone know that Josh's heart cath on Thurs. went > very well. He did lose a little bit of blood and so they gave him a > transfusion but we left the hospital that same day. The cardiologist > showed us the pictures from the heart cath and it was fascinating to > actually see the problems he had with his heart. We have scheduled his > surgery to do his tetrollogy repair for the middle of October. I almost > feel like I should be preparing him (and me) for it in some way. Also, > I just look at his beautiful little chest and know that soon he will > have a big scar! :-( That is a small price to pay for having a heart > that's fixed but it still makes me sad. > > mom to (7 mo) > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 1999 Report Share Posted September 2, 1999 Best wishes and my thoughts and prayers are with you. You will get through it, somehow. Just put your trust in Josh. Bonnie Quote Link to comment Share on other sites More sharing options...
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