Questions about recovery with kids

[J-Dub]

Hi all,

I'm new here, but have already found lots of really valuable info on the site. I'm scheduled to have an aortic root replacement (valve-sparing) on 4/4/12 at Cedars Sinai in Los Angeles. I have Marfan's Syndrome so I've known for a while that I'd probably have to have the surgery at some point, but a couple of months ago my cardiologist told me that it was finally time (my aortic root was closing in on .50). My cardiologist is Dr. Robert Siegel and my surgeon is Dr. Alfredo Trento. I've read and heard good things about Trento, and have been seeing Siegel for over 10 years.

I'm pretty comfortable with what the surgery involves, and have tried to do a lot of research on the recovery process. My biggest concern is that I have 2 small kids (2 1/2 and 5 yrs old). They love to be picked up, thrown around, and wrestle with daddy. From my understanding, it will be at least 3 months before I can pick them up after surgery (likely longer). Anyone have any experience or advise on what the actual time is?

Also, I work from home (I'm in marketing, and sit at the computer all day). How long did it take others before you felt well enough to go back to work? Could I ease back into it with a few hours a day at first, working up to full days?

Thanks in advance for your help!

 

[ElectLive]

It will be a short term adjustment for you all, but chances are, your kids will adjust much more easily than you. You certainly won't be able to do everything you are used to at first, but in some ways, that can also be a golden opportunity for kids. My daughter was 2 1/2 (but the size of a 4 year old!) when I had surgery, and in many areas, she "grew" (developed) more during those next 3 months than she ever would have.

As for specifics, I began the transition prior to the surgery and that seemed to help things out a little. Anything I knew I couldn't do for a while, we just developed alternatives or creative substitutions, or arranged someone else to substitute in for a while. Some stuff (carrying around for no real reason) went by the wayside that really needed to anyway. Recovery restrictions and milestones can be very individualized, so you will not know for sure for your particular case until later. But for reference, I was cleared to lift up to 30 lbs at six weeks, no other restriction (driving, etc). Then a month later, the 30 lb restriction was also removed. In some ways, I didn't want it removed, though, so I keep telling my daughter I'm really not supposed to carry her around anymore!

I work from home, too, and a few hours on the computer was certainly acheivable for me at the 4-6 week mark. I had a horrible cold at the same time, though, so took it easy for that reason instead. I slowly and steadily ramped back up to normal in the next month or so, although if I'd been working for someone else, I'm sure I could have been back to work full time a little earlier. But again, don't take this as gospel...everyone is a little different.

Welcome to the community and best wishes to you on a successful surgery and smooth recovery and return to normal. Young kids make great helpers, morale boosters, etc and they should relish the opportunity to help take care of you for a change!

 

[J-Dub]

Thanks for the excellent advice, ElectLive! I appreciate it.

 

[chaconne]

I have 3 kids, ages 2, 5, and 7. I'm very active with them and wrestle with them, chase them and pick them up all the time. I found that I could pick up my 30+ pound 2-year old after 2 months. Now, at 4.5 months post AVR, I have no limitations on roughhousing with the kids. I think after 3 months, this was the case.

 

[epstns]

No little ones here, so I can't speak to that question. I can, however, say that at the 3 to 4 week point, I was able to work from home for short (2-3 hours) stretches. Some days my focus was better than others, but I was able to get the critical things done and keep up with what was going on at work. I actually felt that working a bit helped me to feel "connected" to the "real" world, instead of being shut-in at home. My recovery took place over the late winter and early spring in Chicago, so that may have had something to do with feeling cooped-up, too.

 

[AgilityDog]

I've done this surgery twice. The first round, I started working from home around 6 weeks, but found I had to RE-DO everything later.

The second round, I did a little work from home starting about week 4, but it wiped me out and made me hurt. and focus was still lacking. So I had to keep the hours down to 2 or 3 at a stretch for another few weeks.

No kids, but I did have to be careful with the big dogs. Nothing like getting yanked by an 80 lb Lab about 6 weeks after surgery...ummm, no, not again. Owie.

 

[Mentu]

The other guys have given you a good idea of what to expect. There are variables, of course, that can prolong or improve one's recovery. Walking as much as you can will help you become more comfortable in the early weeks. At first, you are not going to be doing any racing but after a gentle stroll of a few blocks several times a day you will notice rapid improvement. As the early weeks pass and you are careful to avoid lifting more than your chest will tolerate, you will find that that you can lift a little more weight each week. If it hurts, you have done too much.

I found a good strategy with the little ones was to get them involved. We visited the hospital before surgery so they had a pleasant image of where I would be but they were told they would see me when I got home. Try to avoid unrealistic expectations. Once home, turn them into helpers. They love to be of help. You won't be able to pick them up but that doesn't mean that you can't snuggle and during the weeks you are home there will be a lot time for that.

I've told others before that my four year old was initially concerned about how the doctor would get the new part inside me. I told her there would be an incision but that it wouldn't hurt. When I got home, she want to see but she wasn't very impressed with the simple red line. She was far more impressed with the comfort bear and announced that the hospital must have done a good job because they gave me such a nice bear. Even small kids have vivid imaginations. Don't delude yourself that you can keep from them the significance of your surgery. If you can reduce the unknown somewhat, they can be much more accepting and much less fearful.

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Larry

 

[J-Dub]

Great advice from everyone. Thank you so much for the help. I've been deluding myself into thinking I'll be back on my feet in no time, but I'm coming around to the reality that I'll have to take it slow and steady and not try to push it. Its great to hear stories from those who have been through it to balance against what I'm getting from the surgeon and get a realistic handle on what the recovery will be like.

 

[Jkm7]

Take the time you will need now to heal well.
The reward is a long, full, happy life once your healing is complete.

 

[sarahsunshine]

I don’t have the experience telling a child I was having surgery, but we explained to our 2.5 year old that her 12 year old brother, Skyler, was going to have a big owie on his chest and she would have to be very careful with him for a while – no jumping or bouncing on or with him, and, especially at the beginning, she wouldn’t be able to give him a big hug by lying on top of him. She was very concerned and wanted to go see him “at the big hospital” every day. After day 3, she was what kept him going (especially after surgery #2 because they had to re-open him to remove a large infection). Going to the hospital was the highlight of her day, and definitely the highlight of her brother’s day. She was also so helpful because she was the only person who could get him to eat and drink anything because she wouldn’t take “no thanks” as an answer. They would sit on the hospital bed together and watch cartoons, or he would read her a book, and if she got too rowdy, she had to get off the bed. Really, she helped SO MUCH in terms of improving his outlook that I would say she was almost the most important person to visit the hospital.

I also have an 18 month old (15 months at the time of the surgery), and he was a lot harder to deal with. He had no comprehension of what was going on and just wanted to crawl on top of Skyler, eat his cookies, drink his apple juice, and give him kisses – oh and pull his tubes and wires. As much as Skyler enjoyed his baby brother’s visits, it was very difficult on us.

Skyler is a kid and likely heals a lot faster than most adults, but he was cleared to pick up his siblings at 3 months post surgery – and his sister only a little under 1/2 what he weighs! He was also cleared to go to school 3 weeks post-op, as long as he didn't carry a backpack or do gym class.