From valve selection forum now onto your.....

[QueenVictoria]

Hi I am a newbie to his forum. My 18 yr old son -6'6"-210 pds is having at NYU w/ Dr. Steven Colvin for an aortic valve replacement and an ascending replacement/repair this Friday. Scott was born with a fused cup of the aortic valve. One flap,fused. The other half fused. He had Wolfe-Parkinson-White (WPW) for electrical problems, was a successful ablationed in 03'. He had a 3.5mm aneurism (sp) in Aug and and now it's 6mm. He's been tired, short of breathe but upbeat and ready for surgery Friday.Initally we were all overwhelmed- that was last week. Now, he wants to feel better and I wish the same for him. He is concerned about waking up in agony. Not the surgery. How much pain is there? and what can I do, when I see him for the first time and thereafter to comfort him?
In advance, thank you all for your concerns and care over at Valve Selection- everyone was so helpful. HUGGS.

 

[Adrienne]

When he wakes up, he will be on morphine. Then he will be on other pain meds. He will be sore, but trust me, he will NOT be in agony.

 

[Jkm7]

There are any number of pain meds. They will surely find one that works best for him. I had some pain, of course, but never anything I would describe as agony. The nurses kept me comfortable for the most part and I was sent home with pain meds when I left the hospital. I think the same is true for most of us here who have had OHS.

Sending best wishes to your son and to you for a successful surgery and a speedy, easy recovery for him.

Please let us know how he is doing. There are some very knowledgeable, wonderful people here who can help you with all your questions.

 

[Karlynn]

I just know Friday is going to be an excellent day. Please let us know how things go, when you get the chance. I'll keep you both in my prayers.

Pain should be adequately managed. There will be some, but it shouldn't reach the stage where it's unbearable.

If possible, he should have a family or friend with him as much as possible just to keep an eye on what's being done, to advocate for him when needed. (Ask for more pain meds, call when help is needed etc.) I know you'll want that to be you, which would be best. But you also need to make sure you don't totally exhaust yourself because he'll continue to need care when he's home.

Wishing him all the best!

 

[Phyllis]

I put him on the calendar for Friday, the 11th so we can cheer him over the mountain. Please let us know how he is doing as you know we all worry and wish him the easiest of surgeries and recoveries. Just being there for him, Mom will be the best medicine!

 

[WayneGM]

When he wakes up, it'll feel like a dream. For me, the point when they had me counting backwards when they were putting me under and the point I started to wake up felt like a split second. My first thought...."was it over already?".

The pain really wasn't as bad as I thought it would be. The pain meds work great so I really didn't feel much pain at all while lying at rest. It was sore to move at first, but not agonizing pain.

The first day post-op is pretty foggy due to recovering from the anaesthetic, and he'll sleep most of it. However, the next day when my wife returned to the hospital to visit, she was amazed at how much better I looked and felt.

Good luck and best wishes.

 

[ruth]

I wish your son all the best.

Pain is typically well managed. He should expect to wake up with a very annoying (but not painful) tube down his throat and to just deal with it since fighting it does no good the docs pull it out when the time is right and not just because you dislike it. He should expect to awaken with the tube, I wouldn't want that to be a surprise for anyone.

I'll be keeping him in my thoughts & prayers for a successful surgery Friday.

Regards,
Ruth

 

[WayneGM]

I forgot to mention, here's a site with downloadable pre-op and post-op videos that help you and your son prepare for what to expect. It includes interviews with those who have gone through OHS. I found these very helpful, especially since at the time of my surgery I had not found VR.com yet.

http://www.uhn.ca/About_UHN/programs/cardiovascular_surgery/cv_pt_info.asp

 

[ALCapshaw2]

Very Few of us reported Chest Pain (most report various levels of 'discomfort') but several of us experienced MUSCLE PAIN that certainly grabbed our attention, mostly in the back or shoulders. These muscle pains can come on fairly quickly with a twist or bump in the wrong place.

MASSAGE is the BEST and FASTEST solution to Muscle Pain!
Lord knows what kind of contortions those Doctors put us through.

'AL Capshaw'

 

[QueenVictoria]

How do you control your reaction to the vent tube

How do you control your reaction to the vent tube

What does it feel like? How does he stay calm? with that vent.
It breathes for you, right? What what happens when you instinctively try to breathe on your own. I hear in NYU in CCICU a nurse is one on one waiting for you to wake with that tube. He is in a panic over this.

HELP!!!!!!!!!!!!!!!!!!!!!!!!

I bought a dry marker board so he can communicate.
I also understand the thirst issue- we got moisture drops for his lips. If I can help him to help things out at the very beginning I won't feel so helpless- that's what I hate most of all.

 

[Karlynn]

The ventilator has a rhythm to it, so when he begins to get his own breathing back and IF he is conscious (some don't remember the vent at all) tell him to breath with it and that will help him not fight it. He may also want to be prepared a little for the suctioning of the vent tube. That is probably the most uncomfortable thing about it. It feels like they've totally shut off your ability to breath and it can be a bit scary if you aren't expecting it. But assure him it only takes a few seconds. Tell the staff member who is doing the suctioning to please let him know they are about to do it - even if it appears he's not conscious yet.

I want to repeat again that some have the tube removed before they are really too aware of it. I was aware (tried to rip it out so I got restrained. ). But it really is something that the memory fades on quickly. I did not have the advice to breath with the vent rhythm and wish I had. If you are there when he has the vent in and he appears to be struggling with it, it might be calming if you hold his hand and tell him to breathe with you - with your breaths matching the rhythm of the tube.

The other thing that scared the dickens out of me was that no one told me that they give you drugs that paralyze you for a time, so you don't make movements during the procedure. I woke up, couldn't move, couldn't see and it terrified me. I thought something had gone horribly wrong. I kept thinking "I'm in here and no one knows it." If this type of drug is used with your son, make sure they prepare him for possibly being awake before the paralytic has worn off. Although I don't think many have reported similar experiences to mine. I just wanted to let you know because it was, by far, the scariest moments for me.

 

[Guest]

QV,

Your questions about the vent ... are rather difficult to answer (at least for me) because it varies so much between people. I had a very bad (well, what I'd consider bad, anyway) experience during my 2003 surgery. I literally remember thinking, "Dangumit, I made it through the open heart surgery with flying colors, now my own mucus is going to kill me".

But, someway, somehow ... I remained calm enough to pass a breathing test and get off the vent. I can't even describe how I remained calm enough ... it just sorta happened ... sorry .


Please know that thoughts/prayers are coming your son's way for a SUCCESSFUL surgery ... good luck .



Cort:33swm."Mr Monte Carlo.Mr Road Trip".pig valve.pacemaker
PICS:lego.HO.model.MCinfo.RT.CHD = http://www.chevyasylum.com/cort
"We got mountains to climb" ... Rod Stewart ... 'Broken Arrow'

 

[Lynlw]

Vicky, when you guys have your meetings before surgery, IF Scott wants, ask if you can have a tour of the CCU and floor where he will go next. Alot of times, if you actually see things, it isn't as scarey as the unknown. Justin does not like the vent (that sounds silly who does) so we decided when we meet the surgeon Thursday, we are going ask what their criteria is for taking the vent out. I know Justin's last surgery they said they try to extabate before you wake up or even in the OR, but he wasn't ready(they go by certain numbers in the bloodwork), so had it for a few hours after he woke. We thought if he knows what they look for maybe it will help him mentally and know as soon as "this" happens they can pull it.
Karlyn had very good suggestions about holding his hand and trying to have him focus on you.
Good luck with all the testing, lyn
ps I know wverything is differet and each hospital do things differently to, but Justin never woke up on the paralyzing drugs, but that would be another good question to ask before hand

 

[Adam 12-21-05]

Queen Vee,

As a caregiver, you are asking all the right questions to help you son through this procedure. Honestly, I wish my mom had asked a few more questions on my behalf.

But seriously, understanding the patient perspective is incredibly valuable. Anticipating the next thing to happen, the next tube to be removed, the next drug to be administered, the next, next, next, next... is beyond helpful.

So cheers to you for collecting the inputs needed to help your son!

To give you and others an idea as to what it is like for the patient to wake up in the intensive care unit following heart surgery, I wrote this narrative about my experience.(Click to read.) My fiance helped document the event.

I hope this helps.

Cheers,

Adam

 

[Lynlw]

Queen Vee,

As a caregiver, you are asking all the right questions to help you son through this procedure. Honestly, I wish my mom had asked a few more questions on my behalf.

But seriously, understanding the patient perspective is incredibly valuable. Anticipating the next thing to happen, the next tube to be removed, the next drug to be administered, the next, next, next, next... is beyond helpful.

So cheers to you for collecting the inputs needed to help your son!

To give you and others an idea as to what it is like for the patient to wake up in the intensive care unit following heart surgery, I wrote this narrative about my experience.(Click to read.) My fiance helped document the event.

I hope this helps.

Cheers,

Adam

Adam, I'm a little confused by this
"However, a chest tube prevented that communication. This foreign structure rendered my vocal capability useless. While it was quite uncomfortable, I remained calm and chose to enjoy the silence. "

are you talking about the vent tube?
Even though my ability to talk was still constrained from the chest tube, my arms were now free. I lifted my hand and gave him the thumbs-up signal. We also enjoyed the silence. I did my best to smile even thought the chest tube made that difficult.

I couldn't read futhur to figure it out, since I wasn't going to pay, Lyn

 

[briansmom]

QV,
IMHO the first few hours after surgery will be much harder on you than him. My son fought the vent hard after this last surgery. I completely talked him through it because he would not listen to the nurses at all. When I asked him about it later, he didn't even remember!!! I think it took another five years off my life because he seemed so upset and the important point is that he didn't even remember. I am kind of a control freak so my husband or I stayed with him pretty much 24/7 after surgery. His pain was well managed. Half of our job was keeping the nurses out of the room so he could get a little bit of sleep. Bottom line, I think your son will do very well and you will be amazed at how much better he feels afterword.

Please keep us posted.

 

[Adam 12-21-05]

Adam, I'm a little confused by this
"However, a chest tube prevented that communication. This foreign structure rendered my vocal capability useless. While it was quite uncomfortable, I remained calm and chose to enjoy the silence. "

are you talking about the vent tube?
Even though my ability to talk was still constrained from the chest tube, my arms were now free. I lifted my hand and gave him the thumbs-up signal. We also enjoyed the silence. I did my best to smile even thought the chest tube made that difficult.

I couldn't read futhur to figure it out, since I wasn't going to pay, Lyn

'Chest tube' was what Robyn wrote down and others confirmed... Do you call it the 'vent tube'?

 

[Lynlw]

'Chest tube' was what Robyn wrote down... Is it called the 'vent tube'?

Yes the one in your mouth (sometimes nose) is the vent (or ventalator) tube
the chest tube is the 2 tubes you see under your incision, HTH Lyn

 

[Curtsmum]

My son was only a baby and he kept trying to pull the vent out as well as everything else in sight. It will be scary at first, more for you, im sure your son will manage just fine, wishing you the very very best of luck and hope he as a good and quick recovery. Paula

 

[Ross]

Tell him to breath in synch with the vent if he awakes with it in. Really, it's not all that bad, it feels very unnatural and therefor unwanted. For the most part, he'll be sedated for most all of it. He may not be able to write. The drugs really scramble you up. I knew what I wanted to say, but it didn't get written like that. More like scribbling and frustrating. You'll have to check with the nurses about moisturizing his lips and mouth. It could turn into a tease. When one first wakes up, there is a ferocious thirst and the best he'll get is ice chips after a while. Too much and it's off to throwing up and no one likes to do that with a split chest.