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Post by meggriffin on Apr 13, 2019 20:05:20 GMT -6
I wanted to pop in and let you all know what’s going on with my little guy.
He is scheduled for his open heart surgery on April 19th, I am starting to get anxious. I have been handling it until the last week or so, it’s getting so real.
Overall he is doing really well however he is still not gaining weight like he should and is working too hard to eat. He is 7 and half months and still under 15lbs, they were discussing a feeding tube but we are holding off now that surgery is so soon.
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akwild
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Post by akwild on Apr 13, 2019 20:22:39 GMT -6
We will be thinking of you. This is a stressful time, but everything should go well.
Is this the only surgery he will require?
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Post by meggriffin on Apr 13, 2019 20:42:13 GMT -6
We will be thinking of you. This is a stressful time, but everything should go well. Is this the only surgery he will require? We are not sure yet, the large hole he has is very close to the aortic valve, it has a high risk of leaking later. If it does he could need surgery for that, but also where he is so young and his heart has a lot of growing to do he could need another surgery because the scar tissue will not stretch and grow like the muscle. From my understanding there is no way to say for sure he won’t, but they should know after this surgery if he definitely will need another(I hope that makes sense) |
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akwild
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Post by akwild on Apr 13, 2019 22:44:25 GMT -6
We will be thinking of you. This is a stressful time, but everything should go well. Is this the only surgery he will require? We are not sure yet, the large hole he has is very close to the aortic valve, it has a high risk of leaking later. If it does he could need surgery for that, but also where he is so young and his heart has a lot of growing to do he could need another surgery because the scar tissue will not stretch and grow like the muscle. From my understanding there is no way to say for sure he won’t, but they should know after this surgery if he definitely will need another(I hope that makes sense) That totally makes sense. I’ll keep thinking strong healthy vibes for you and your family. |
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Post by mirabelle on Apr 13, 2019 22:54:09 GMT -6
My DH had heart surgery at 8 months old and still gets annual checkups every year to follow up. His health really took off post surgery. He still has his scar and this was 30+ years ago. I can only imagine the advancements they’ve made in this area with technology the way it is. His mom still talks regularly about what a stressful time it was leading up to and post surgery.
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Post by tbirdlove on Apr 14, 2019 6:18:41 GMT -6
Thank you for the update meggriffin. I'll be thinking of you both and wishing you a safe and smooth journey through this challenging time ❤️ |
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Post by pixiepink24 on Apr 14, 2019 6:58:30 GMT -6
Sending so many positive thoughts to you guys! ❤️
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Post by meggriffin on Apr 14, 2019 7:48:00 GMT -6
My DH had heart surgery at 8 months old and still gets annual checkups every year to follow up. His health really took off post surgery. He still has his scar and this was 30+ years ago. I can only imagine the advancements they’ve made in this area with technology the way it is. His mom still talks regularly about what a stressful time it was leading up to and post surgery. Thank you, I seriously love hearing stories about people that have been through it. Did your H have a hole repaired? |
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brenna
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Post by brenna on Apr 14, 2019 10:29:18 GMT -6
Sending positive thoughts to you and your family!
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Post by Dramaphile on Apr 15, 2019 7:44:37 GMT -6
Sending love to you and lots of good vibes and prayers for an uncomplicated surgery and smooth recovery for A.
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Nymeria
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Post by Nymeria on Apr 15, 2019 7:56:57 GMT -6
All the love and thoughts your way. I cannot imagine the stress leading up to Friday so I hope the week goes by quickly for you.
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Post by meggriffin on Apr 18, 2019 6:02:49 GMT -6
Pre-op day, we are waiting to meet with the surgeon now.  |
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brenna
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Post by brenna on Apr 19, 2019 11:22:21 GMT -6
I hope everything goes well for A today! I'll be keeping your family in my thoughts!
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Post by tbirdlove on Apr 19, 2019 12:18:43 GMT -6
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Post by mirabelle on Apr 19, 2019 13:23:18 GMT -6
My DH had heart surgery at 8 months old and still gets annual checkups every year to follow up. His health really took off post surgery. He still has his scar and this was 30+ years ago. I can only imagine the advancements they’ve made in this area with technology the way it is. His mom still talks regularly about what a stressful time it was leading up to and post surgery. Thank you, I seriously love hearing stories about people that have been through it. Did your H have a hole repaired? Just saw his and asked him, his surgery was called: Tricuspid valve repair/patch. So something with the valve in his heart. Thinking of your little man today! |
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Post by meggriffin on Apr 19, 2019 19:22:40 GMT -6
The little guy did really well today, they are having a little trouble managing his pain so he’s not relaxing- we have been trying for a little over an hour now to get him to stop crying 😢 I think he wants to nurse.
They did tell us that the large VSD that was causing the problems was literally twice the size they thought it was - it went from an estimated 9mm to 17mm. He also took a little longer than normal to fully wake up- he’s basically been unhappy since.
I’ll let you all know how he does tomorrow.
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Nymeria
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Post by Nymeria on Apr 19, 2019 19:55:44 GMT -6
I'm glad he did well but I'm sorry to hear they've been struggling with his pain. I hope they get it sorted out soon so you all can get some rest. ❤
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akwild
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Post by akwild on Apr 19, 2019 23:23:55 GMT -6
I’m glad he did well. I hope they can manage his pain and he can settle soon and start his road to recovery.
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Post by pixiepink24 on Apr 20, 2019 6:32:40 GMT -6
❤️
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Post by tbirdlove on Apr 20, 2019 13:32:50 GMT -6
Glad everything went well. I hope he's feeling better today 💗
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Post by Dramaphile on Apr 23, 2019 8:11:32 GMT -6
Glad everything went well and hopefully his recovery is uneventful!
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Nymeria
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Post by Nymeria on Apr 23, 2019 8:43:06 GMT -6
meggriffin - I hope recovery is going well. How is he doing?
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Post by meggriffin on Apr 23, 2019 9:21:57 GMT -6
He has been doing very well, battling high blood pressure but it’s fairly normal and will go home on blood pressure medication.
Now we are waiting on the results from his echo if it looks good we go home today, yesterday he had one but was very wiggly so it looked like he had pulmonary hypertension still which shouldn’t be the case. So hoping today’s sedated echo will show us better results and they kick us out today.
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Nymeria
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Post by Nymeria on Apr 23, 2019 9:33:09 GMT -6
Glad to hear he is doing well!! Hope today's echo looks good and you can get out of there!!
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Post by Dramaphile on Apr 23, 2019 11:37:10 GMT -6
Fingers crossed for you, meggriffin for a good scan and discharge! |
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Post by tbirdlove on Apr 23, 2019 16:41:51 GMT -6
So glad to hear he's doing well!! I hope you get to go home soon 😊
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Post by meggriffin on Apr 24, 2019 5:51:29 GMT -6
So the echo did not go in our favor, he still has pulmonary hypertension which should have been corrected after his repair. Both the surgeon and the cardiologist were surprised.
They met with the pulmonary hypertension team and they have decided to do another echo today but half of the echo on oxygen and the other half without. If the oxygen helps lower the pressure in his lungs and or the right side of his heart then we go home on oxygen. It can take a couple of days to get that set up which means an even longer stay.
If he doesn’t respond to the oxygen then they are going to regroup and decide what’s next.
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brenna
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Post by brenna on Apr 24, 2019 7:52:16 GMT -6
So the echo did not go in our favor, he still has pulmonary hypertension which should have been corrected after his repair. Both the surgeon and the cardiologist were surprised. They met with the pulmonary hypertension team and they have decided to do another echo today but half of the echo on oxygen and the other half without. If the oxygen helps lower the pressure in his lungs and or the right side of his heart then we go home on oxygen. It can take a couple of days to get that set up which means an even longer stay. If he doesn’t respond to the oxygen then they are going to regroup and decide what’s next. I'm so sorry the echo didn't go as well as expected. I hope they figure it out soon so you can take your little guy home! |
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Nymeria
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Post by Nymeria on Apr 24, 2019 8:02:20 GMT -6
I'm sorry to hear the test didn't go as expected. That has to be a major bummer (seems like not a strong enough word but I couldn't think of a better one right now). I'll keep my FX the oxygen helps so you know where you have to go from here.
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Post by tbirdlove on Apr 24, 2019 8:24:35 GMT -6
Oh gosh, I'm sorry meggriffin. I hope you have answers soon so you can move forward. |
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