Mothering Forum banner

1 - 20 of 23 Posts

·
Registered
Joined
·
1,445 Posts
Discussion Starter · #1 ·
Give me good stories. Give me something.<br><br>
This is surgery #3. (Others at 2 weeks and 3 months).<br><br>
He wasn't expected to need more surgery this soon--they said maybe when he was a teenager. But he had a cardiac MRI last month and they found that the patch they used to open his pulmonary valve has really expanded and is ballooning around his heart, plus they saw that his left pulmonary artery is miniscule and the right one is huge, meaning that only 10% of his blood flow is going to the left lung and it's not growing (also that balloon is taking up a lot of space in his chest). He had never had a cardiac MRI before (in california, where we lived until last summer) and previous echos didn't show the pulmonary artery problem and they didn't know the patch problem was this bad.<br><br>
We're in New England now--surgery at Children's in Boston. I've heard only good things. They are putting in a pulmonary valve and reducing the size of his right heart and putting a stent in the pulmonary artery. The risks are greater for repeat surgeries plus that ballooned artery could rupture.<br><br>
He's also autistic--high-functioning. The sensory stuff is going to be rough, to put it mildly. Also, how am I going to keep him from injuring himself afterwards? He really enjoys slamming himself into the wall and has manic states where he races around giggling and screeching and is really defiant. I won't be able to do the "lie down on him until he calms down" method which is the only thing that works right now.<br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad">
 

·
Registered
Joined
·
3,679 Posts
Big hugs!<br><br>
DS had OHS at 5 months to repair a VSD.<br><br>
Here's the positive news for you: When you did the other surgeries, your ds' heart was much smaller, and it's easier to work with a larger heart. And, every year cardiac surgeons learn so much more. That can only be better for you. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/thumb.gif" style="border:0px solid;" title="thumbs up"><br><br>
Not that you necessarily want this, but I'm certain that the drs. can prescribe something to sedate your ds during the critical period. Make sure that they know that your ds could be harder to keep calm and to prepare accordingly.<br><br>
I wish you and your ds the bestest of luck for a successful surgery and a quick recovery. Keep us posted!
 

·
Registered
Joined
·
840 Posts
<span><b>Sending hugs and prayers.</b></span><br><br><span><b>Mary</b></span><img alt="" class="inlineimg" src="/img/vbsmilies/smilies/goodvibes.gif" style="border:0px solid;" title="Goodvibes">:
 

·
Registered
Joined
·
1,445 Posts
Discussion Starter · #4 ·
I did talk to the child life person in cardiology. She said they've treated autistic kids before but I did warn her about the sensory stuff. She said she would talk to the team. I'm not sure she quite understood quite how bad it's going to be though <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"><br><br>
I'm worried they won't want to sedate him, actually, because it would impede his recovery or something <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad">
 

·
Registered
Joined
·
3,679 Posts
<div style="margin:20px;margin-top:5px;">
<div class="smallfont" style="margin-bottom:2px;">Quote:</div>
<table border="0" cellpadding="6" cellspacing="0" width="99%"><tr><td class="alt2" style="border:1px inset;">
<div>Originally Posted by <strong>Sleepymama</strong> <a href="/community/forum/post/11595602"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">I did talk to the child life person in cardiology. She said they've treated autistic kids before but I did warn her about the sensory stuff. She said she would talk to the team. I'm not sure she quite understood quite how bad it's going to be though <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"><br><br>
I'm worried they won't want to sedate him, actually, because it would impede his recovery or something <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"></div>
</td>
</tr></table></div>
I'd make sure that you talk to the surgeon and the PICU resident -- you'll at least have time when they talk to you prior to the surgery. If you can, I'd bring a video cam with a tape of a typical manic state so they can see it and get a first hand view of your concern. They won't discharge your ds until he's stable, so hopefully they'll be able to monitor him as he recoups in the hospital. They can make a determination if sedating meds might be necessary after ds is released. Don't be afraid to be "that mama!"
 

·
Registered
Joined
·
1,445 Posts
Discussion Starter · #6 ·
Video...good idea! I don't think we have mania on tape.<br><br>
He does take seroquel now (a small dose) at night to help him sleep, but it does nothing during the day. They don't want to give him more because it has potential cardiac interactions. We've tried loads of other stuff that hasn't worked, or worked for a short time (this is the first Rx med though).
 

·
Registered
Joined
·
5,846 Posts
I'm in MA. Children's really is excellent. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

·
Registered
Joined
·
10,473 Posts
My cousin has had surgery at Children's in Boston. They're good ppl. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br><br>
She's severely delayed and handicapped.<br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> I'm not even going to say, "You'll be fine! He'll be ok!" because those are empty words, really. It's not going to ease your mind. But we're here for you. No matter what.<br><br>
When my dad went through open heart surgery recently it was a most trying time. He had some complications and a reaction to the meds and everything. We nearly lost him. But he pulled through.<br><br>
I know how hard it is to sit and wait and hope for the best for a loved one.<br><br><img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug">
 

·
Premium Member
Joined
·
1,631 Posts
Will you be able to do any deep pressure to the arms and legs when he's recovering? Perhaps you can have an OT visit post-surgery...?<br><br>
A good friend of mine had heart surgery at age 14 for an atrial septal defect. He's in his mid-40's now and doing well. He says the worst part for him was during recovery where they wanted him to remain on his back and still.
 

·
Registered
Joined
·
3,591 Posts
Just big hugs and a "you'll be in my thoughts." I don't have any experience with open heart surgery but understand the sensory side of things - I love the idea of having an OT visit post-surgery to help him on the sensory end.
 

·
Premium Member
Joined
·
9,138 Posts
<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"> I don't have experience but I'll be thinking of you.<br>
I'm sure they can find something safe for him to keep him sedated if necessary. They have at times sedated Andrew after procedures and he's got metabolic issues that make sedation hard..there are many options.
 

·
Registered
Joined
·
3,558 Posts
My nephew had open heart surgery at Children's (very complicated and rare birth defect) at nine weeks. He is 7 now! The team was wonderful, and he has done so well. I agree with a pp--put out there what you need. The ICU stay will probably be short and then move to a floor. You may want to find out who the nurse manager is for the unit and be up front about your needs. Do you want a psych. or psychologist involved? Ask for it. Better to overplan and anticipate your child's needs. Good luck! I think you have chosen a top notch facility.
 

·
Registered
Joined
·
3,679 Posts
I had another thought for you: All surgeons are "graded" on their success rate. It's like their badge of honor. They definitely should listen to you about your concerns post-op, and do everything they can to ensure that your ds will recover well. I'm assuming that you have a cardiologist along with the cardiac surgeon -- let *everyone* know what your concerns are. They'll find an answer.
 

·
Registered
Joined
·
1,445 Posts
Discussion Starter · #14 ·
His surgery is today. He had preop yesterday and I was pretty happy with the way they handled it, and his cardiologist reassured me that they would do what they needed to keep him safe. The child life person was our personal escort yesterday. I feel better having talked to them.<br><br>
Send us <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/heartbeat.gif" style="border:0px solid;" title="heartbeat">
 

·
Registered
Joined
·
500 Posts
my thoughts are with you and your son!<img alt="" class="inlineimg" src="/img/vbsmilies/smilies/hug2.gif" style="border:0px solid;" title="Hug2">
 

·
Registered
Joined
·
191 Posts
Hi, first off <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/hug2.gif" style="border:0px solid;" title="Hug2">. I can't imagine what you are going through.<br><br>
Second, Children's is great, as many other posters have mentioned. My son had four surgeries there, and we had (as much as you can have) great experiences there. There are so many people there--staff, volunteers--to help with the kids during recovery. And I think that every area has a little room or something where the kiddos can go unwind/play or whatever during recovery. They also have a lot of patient services that you may be able to look onto for your son before his surgery. If you go to their web site you can check out the "Hospital Support Services"--perhaps someone on the "Child Life Specialists" are could help post-surgery with some of the issues that you anticipate during recovery. I wish you the best.
 

·
Registered
Joined
·
5,846 Posts
lots of <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/heartbeat.gif" style="border:0px solid;" title="heartbeat">
 

·
Registered
Joined
·
1,445 Posts
Discussion Starter · #20 ·
We're home! He did really, really well. They're still worried about one of his pulmonary arteries but his cardiologist said his heart seems "happy".<br><br>
He was out of CICU within 24 hours and released 4 days after. It's really amazing--they said they rarely see kids recover that fast. I think he channeled all his hyper mania into getting out of the hospital. He's moving a little slowly and is on some pain meds but doing much better since we left the hospital. He was having a really hard time in the hospital--shrieking at the nurses to go away and not touch him. They gave him ativan for procedures and to take out IVs & the chest tubes. They were really very accommodating with his needs--I'm pretty impressed. We got a child life escort for the preop testing to make sure we didn't have to wait and we got the most skilled people for the blood draws, etc. They let me sleep in his bed in the CICU! And he went naked the entire time. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/lol.gif" style="border:0px solid;" title="lol"><br><br>
I hope this one lasts. I'm not sure I can do this again. I'm whipped.
 
1 - 20 of 23 Posts
Top