my wife loves this list what can I do

[Leighanne]

My wife is Leighanne who is scheduled for PVR with poricne this Tues May 11th. We are the ones with a child with autism who is not verbal, almost 5, and has epilepsy. Dont know what you have read on her posts but we have no family here in Maine and her surgery will be 2 1/2 hours away in boston so my parents will be here, my dad only a couple days, to take care of my son. My wifes mom has alzheimers and her dad was always the one to take care of Leighanne and now he cant really help.

I would like to know what I can do, what to expect, the gore of what I may see, how I can support her at home and in hospital. With our son I worry about her recovery because if he has a seizure and needs to be picked up or he needs to be held, picked up, he still has trouble gettin into car set himself. He runs all the time and has no sense of danger to himself or others (would run in front of cars, into a lake, off the balcony, play with knives, eat bleach). So what do I need to know, what do I do, what dont I do.

My wife is terrified and I dont know if I see the full picure of what is ahead as I did have a kidney transplant but I was still a teenager and maybe thought invincible, no girlfriend, wife, child. I am 36 she is 32

Thanks for the help
Dale Collier, wife to leighanne, scheduled for tissue pulmonary valve replacement., tricuspid ring, full MAZE and some other stuff

 

[tommy]

Dale and Leighanne,

First know that I will be praying for you and your family. I have no easy answers for you, but pray and hope that you will all get throught this okay.

I'm sure that you are both scared. That is normal and appropriate. While there are no guarantees, you have some consolation in the fact that hundreds of us have been through this type of surgery. We are also all pulling for you. Full recovery and feeling much better as a result of the surgery is likely and will be gratifying. The task is getting ya'll over the hump.

You need to get clear instructions from the surgeon about post-op expectations and restrictions. Only the surgeon knows exactly what Leighanne's details are.

In the meantime, we can paint some pictures for you to help you prepare. You can expect Leighanne to be pretty much incapacitated for a couple of weeks at the very least. Short walks. Lots of naps. No stress or excitement. No pressure to take responsibilty for stuff that she is not ready for. She will not be able to pick up anything over 10 lbs for at least a month or more. The sternum will be very weak, tender and vunerable.

Frankly from my experience, Leighanne will not be able to be the primary caregiver for Ethan, with his special needs, for quite a while.

We have a set of CerPalsy twins living behind us. Those parents are saints. You must be saints as well. I suspect that working with Ethan is a pretty special task that will be tough to delegate to others. But be sure to ask for help for anything and everything else. Meals, errands, etc. Is there anyone else in the community or family that can help you? Neighborhood? Church? Don't be shy.

Again, spend some time with the surgeon to go over expectations and restrictions.

Leighanne will be challenged to get in and out of bed. If you have a recliner, she may prefer that for a week or two for sleeping.

Please feel free to post questions, and/or vent any time. We will provide whatever information and encouragement we can. This is a great family.

Take care.

 

[hensylee]

Dale, I agree with everything Tom has said. May I suggest that you contact a community social service/health dept/hospital social services and explore what help there might be. Please contact a church of your choosing. It is wonderful what help churches have for those in need. I used to be a social services worker and found that one or two phone calls led me to other places when I said 'if you can't help, maybe you know someone who can'. You must get on this quickly because her surgery is almost upon you and ducks need to be in a row before she goes in because you won't have time afterwards. Speak to co-workers - never can tell who might step forward in the way of meals, cleaning, etc. You're going to need everybody who offers - don't turn them down. As I said to your lovely wife, whoever offers, take it, say thank you. People might come from places you least expect.

 

[Ross]

As for what you'll see, she will have multiple tubes and drains coming out of her for the first day or two. This is whats unsettling, but they are only in as long as they need be. Most are removed in 24 to 36 hours. She'll be on life support until she is able to resume breathing on her own, again somewhere in the 24 hour window. If you can get past the tubes etc, you'll be fine.

We are here for you and any questions you may have, so bring them on as you think of them.

 

[Karlynn]

Dale,
You are all in my prayers. Such a great guy you are for posting your concerns and questions. Being a mom who had small children when I had my surgery, I can tell you that your biggest gift to Leighanne right now is to assure her that you will be taking care of everything and that she is just responsible now for getting fixed and healed. I'm sure you'll need to ask her questions about the things that she has done, but that you need to take over, or find someone to take over for a while. But it will be good for her to know that the buck doesn't stop with her. Moms often do to many things because it's just easier to do it ourselves than to explain how to do it, to others. So encourage her to teach you the things she normally takes care of.

I used to teach multiply-disabled children and my brother is mentally retarded, so I know of the extra concern you have over how your family is going to manage through this. Rely on others. Ask for help - most people are willing to give it. It's really really important that Leighanne does exactly what the doctors tell her to do - no exceptions. I was told not to do any upper body exercise for a month. I didn't think folding laundry was upper body exercise - so I folded a few loads. It nearly put me back in the hospital. Let Leighanne know that her job when she gets home is to follow doctors orders. The more she is able to do that, the quicker her recovery will be. It's not a speedy recovery process, but it slows down even more when we don't follow orders.

You are all going to get through this!!!! The most frightening part is the time before when you really don't know what to expect. It most often is so over-blown in our heads because it is the unknown.

Please continue to keep us posted and God bless.

 

[Nancy]

Hi Dale-

My husband has had 5 thoracic surgeries, 3 heart valves and 2 lungs.

Here's how my husband looked after his surgeries.

Immediately after surgery and in the ICU, he was very pale and asleep. He was on the ventilator which was breathing for him. His skin felt cool to the touch, He had multiple drain tubes coming out of everywhere, and all kinds of mechanical and electrical monitoring things attached to his body. Many of these items have sounds and alarms which can go off at different times. The nurses are attuned to what each sound and alarm mean and will take care of whatever comes up. Your wife may have her hands tied down to prevent her from ripping out any of the tubes. She will be either asleep or under the influence of powerful pain meds, and won't know what she is doing. Many people do not like the ventilator one little bit. But it is necessary until the body can breathe again on its own. When she awakens, and is able to have the ventilator tube removed, she will be terribly thirsty. But they will not allow her to have water, perhaps some ice chips or other minimal thirst quenchers. This is because there might be some aftersurgery nausea and liquid in the stomach can cause regurgitation and that is not a good thing. They will gradually introduce liquids to her and monitor what happens. She'll be upset at not being able to quench her thirst. But it will all work out very soon. She will have some pain until the chest tubes are removed. Once that is done, she'll feel much better.

There may be some little glitches that occur from time to time during these 2 critical days. The docs and nurses are well aware of what to expect and will take care of these things immediately.

You may be able to see her on a limited basis while in ICU. Each hospital differs in what they allow.

Joe had one to one nursing care for the first day or two in ICU, until he graduated to the Step-Down Unit, which was a series of attached rooms with one or two nurses monitoring the patient, after a couple of days or so there, he then graduated to a regular cardiac surgery room.

Once home, your wife will be extremely weak and fatigued. This will last for at least the first 2 weeks. She will be uncomfortable and will probably not be able to sleep in the bed. Most people find a recliner chair to be much more comfortable. She will need care 24/7 for the first week at least and possibly the second. She will have emotional swings and may even have some hallucinations. This is all from the anesthesia and pain meds which linger in the body.

She will sleep for only a few hours at a time, even though she will be extremely tired. My husband slept sitting up on the sofa for a couple of months.

She will not have an appetite for a couple of weeks.

She will have a lifting restriction and will have to protect her sternum area. She will not be allowed to drive until released by the surgeon to do so.

The early recovery period lasts about 6-8 weeks. During that time people will have fatigue and some pain. After that things start to normalize, but the large portion of recovery takes 6 months to a year. At which point, things will return to normal and be much better.

 

[ALCapshaw2]

Hello Dale and Leighanne,

You have received some excellent information and advice.

I want to emphasize that it is ABSOLUTELY IMPERITIVE that Leighanne NOT LIFT anything over 5 lbs for SEVERAL WEEKS (at least 6 weeks) in order for her sternum to heal. Don't even think about trying 'just this one time'.
Breaking this edict can set her recovery BACK by MANY MORE WEEKS and she really does NOT want to have to return to the hospital for 'repairs'!

Her surgeon will probably give her a schedule of when she can increase her allowable lifting load but it will probably be 3 MONTHS before she will be allowed to lift more than 25 or 30 lbs. At 6 months she should be 'mostly' healed but many of us found that we continued to improve our strength and stamina for up to a year or more. Hopefully her age will put her on a 'faster track' to full recovery.

As others have pointed out, you will need to reach out to others for HELP during this recovery period.

Sorry for being so blunt, but I felt you need to be aware of ther reality of the situation.

'AL'

 

[Harpoon]

I've been reading through the posts here (I sent a private message earlier then found this) and thought I'd add something in regards to the lifting restrictions.

You said your kid had autism and there are times when he can be 'combative'...

It's IMPERATIVE that you keep your son from hitting mommy in the chest for a LONG (more than two months even) time....


I have a toddler (he was three when I had surgery a year ago) and we stressed with him before surgery that he couldn't touch or hit my chest when I got home. We talked wiht him about it and other restrictions that would be in place. I couldn't rough hosue with him or pick him up or do a lot of the other "physical" things he was used to from me.


In your case, (I don't know how much he comprehends and responds to, or how well) the best thing might just be to restrain him from hitting mommy outright and avoid situations where he might have the opportunity to hit.


I know that may sound real hard, I can't imagine having to tell my son he can't sit on my lap for fear of hitting me, hard enough trying to tell him not to run head long into my chest.... He likes doing that though he restained himself for a while after I got home.


Some of this you may have to just play by ear. Sometimes kids, even with mental disabilities, pick up that mommy or daddy is sick and can't do the things they usually do so they let off for a while. Hard to say.

The sternum takes about 6-8 weeks or more to heal to a point where it won't break open on impact. It takes a year or more to heal through completely.

With a child that has autism and likes to be combative at times, that's going to be real tough to deal with. Try and be prepared for it.

 

[Karlynn]

Some of this you may have to just play by ear. Sometimes kids, even with mental disabilities, pick up that mommy or daddy is sick and can't do the things they usually do so they let off for a while. Hard to say.

This is a very good point Harp. Children with autism quite often have above average intelligence and can be intuitive about things. It's just that it doesn't process in the same way the average child might process the information.

Explain things to him even though you may not be sure if he understands or not. Keep him informed about what is going to happen and what is going on. Explain that there may be other people caring for him other than Mommy and Daddy, but that will only be for a short while. Maybe ask his teachers to stress how everything is going to be okay, but that Mommy will need to rest for a while. It's all information that goes in and may find a circuit that routes it in a way he is able to understand and react positively to.

I'm sure that the 3 of you will discover new, wonderful things about each other through this stressful process. Keep the faith!