New here, could use your help and input ...

[happygrrrl]

Hi, my name is Ali, and I'm here because my DH is getting ready for surgery in about a week. He'll be having an aortic route replacement as well as (likely) an aortic valve replacement. He has Marfan's.

Anyhow, I'm stressing out on how best to manage David's care and the children and household AND myself while he is in hospital and at home recouperating. I bounce between feeling like I can do it all and feeling like I can do nothing, lol. We have two twin boys, 4 years old and no real family help available. However, I do have wonderful friends and neighbors and know there will be help available for some meals and childcare.

Could anyone give me a good timeline and list of help that I will likely need?

For instance, we have a nephew I had originally asked to come stay with me while David is in the hospital. My thought had been that I could spend the day with David while the boys are at a friend's. Then I could come home, get the boys their dinner, put them to bed, then head off to the hospital again and someone "family" would be here in case the boys need me.

However, now I'm thinking with David's hospital about 30 minutes away one way, that I ought to spend the day with him, come home for the boys at dinner time and then stay put ... get laundry done and stuff and get myself to bed at a decent hour. So I'm thinking I don't need anyone to be staying with me at that time. The more I think about it the more I think having our nephew here would be more a hindrance than a help, kwim? I'd be worrying about food for him (grown man - 24 yrs old) and such while if it's just me and the little boys, heck I can feed them cereal for dinner and they'd be happy, lol. (a little nutritional neglect can't be too bad for one week, can it?)

So I was thinking of not having anyone stay with me at all, getting meals for when David comes home, not while he's in the hospital and getting some childcare if I can for while he's in the hospital and some after he's home too.

I feel so bad saying to David that I think I'll just stay home in the evenings while he's in the hospital rather than heading back out. I *think* he understands, but not sure if he's feeling neglected or not. I'm just not sure what to think or to expect of anyone, let alone myself.

I think I may have rambled on but hope someone can make sense of this and offer some good advice. I'm glad you are here!

Thanks a bunch,
ali

 

[Nancy]

Hi Ali-

My husband has had 5 thoracic surgeries (3 heart valve and 2 lung), all about the same situation regarding recovery after the surgery.

First of all, he'll be in the hospital approx. 4-7 days. The first two to three days he'll be on some pretty powerful pain meds. He'll also not be sleeping well at night, so will most probably be wanting to catch as much sleep as he can. He will also be out of it from the pain meds. Not everyone has this situation, but this is the norm. He won't be making much conversation with you and for the first few days, he'll have VERY close nursing care. So for those days, my guess is that you could come as early as possible and stay till dinner and then stay put. He'll have good care, and he'll be tired. Once he gets into a more standard room, the nursing care drops off considerably, and you will want to be there for him more. He'll need your help and will be much more alert. He will also be encouraged to walk and you can help him to do that. I found that I felt much better keeping watch over his care, when he wasn't having close nursing care. Things can happen and you will want to keep an eye out for him.

Once he's home, he'll need your care 24/7 for the first week at least, and then the second week, you will be needed a lot. It will be then that your friends can help you out with the children and keep them occupied, maybe for part of the time at their homes. You will also be exhausted and will want to nap when your husband naps, or just generally relax. Your husband will not be sleeping well for several weeks, and will find sleeping for brief periods of time easier for him. This will no doubt disrupt your sleep as well.

See if you can either buy or borrow a recliner chair for your husband. He'll find that more comfortable to sleep in those several weeks.

You will be very nervous the day of surgery, so here's my list of what YOU should bring to the hospital during your wait while your husband is undergoing surgery.

A nice little canvas or other carry bag with handles-something sturdy that can be laundered.
Crossword puzzle book or other thing that could help to pass the time
Prepaid calling card, so you can call anyone you want
Roll of quarters for vending machines
Pkg. of Altoids or other strong mints (mouth can get dry when you are nervous)
Small bottle of mouthwash
Immodium (I was glad I had that!)
Small pkg. of Tums
Aspirin, Advil or other headache remedy
Some hard candies
A neck roll pillow, like those used for traveling
A small throw, nerves can make you cold
A pad and pencil
A list of important phone numbers
Pkg. of hand wipes or baby wipes
Small bottle of Purell
Small pkg. of Kleenex
Travel size hand lotion
Lip balm

 

[BSastry]

Hi

Hi

My husband had his AVR on 10/22/04. We have two kids - 13 yr old girl and 7 yr boy. I was really lucky to have my mother with us to help. Even then, it was quite tough dealing with the kids ( although they are much older than yours ) Our 7 yr old was very upset and scared when my husband was at the hospital. My suggestion to you is to have your nephew come over during the time of the surgery and not to worry about feeding him. Hope he'll understand your situation. It will be good for your boys to have somebody (a family member) care for them while you're at the hospital.

-Bharti.

 

[geebee]

Hi Ali and welcome.
One thing to remember right up front is that it is easier being the patient than the loving family members. Your husband will be fine and he will appreciate whatever time you can spend with him in the hospital. However, also remember that he KNOWS you have a home to run and children to care for. He will worry and feel guilty if he thinks you are not spending the time you need to at home.
It is important to disrupt your family as little as possible. The surgery itself and your husband (and thus you a great deal)being away will create a disruption in your family that your children will notice. Having your nephew there (assuming your twins like your nephew and assuming he is reliable) will give you the opportunity to allow the twins to stay home. Having the twins visit friends is nice but every day, with you and your husband gone, may cause stress for your boys. Again, if your nephew is there, you can CHOOSE to go to the hospital in the evening if you feel up to it but you can always choose to stay home and still have assistance. Remember you will be tired too.
Definitely stock up on easily prepared meals for when your husband comes home. You will have your hands full with caring for him so set things up to make it easy for you.
If you have a recliner, be sure and have it in the most accessible area in your home (i.e. on the first floor, as close the the bathroom as possible). If you do not have a recliner (and cannot buy or borrow one) set up the couch with lots of pillows. Finding a comfortable position will be the hardest thing your husband will have to cope with once home.
Lastly, REMEMBER, this will pass. Recovery is not forever and each day will find your husband better and your life a little less hectic. Try to spend a little time on this website seeking help or just venting. We are all here to help.
Take care and keep us posted.
Smiles,
Gina

 

[happygrrrl]

Thank you Ladies ...

Thank you Ladies ...

I appreciate your help and input. I'm taking everything in and working on processing it. LOL, seems like everything takes a while to process these days.

Thanks for the tips on what to bring to the hospital Nancy! I never would have thought of a blanket and yet I know I do get cold when I'm nervous and so that would be comforting to me.

We do have a recliner, but I also hadn't thought of moving it nearer the bathroom ... I'll make sure we get that done before he comes home.

I am not sure what to expect of my boys while Daddy is away. So far, they've been very mellow about it. My one boy came in while we were watching a video online of the surgery David will be getting. Xander was very matter-of-fact about it, asking if that was what Daddy was going to get done. He was sort of like "neat-oh" and then said "It would be cool to see your own heart like that!", and that was that!

(Just as an aside, both my boys will go in mid-January for EKG's to determine if they have the same condition in their hearts as David ... there's a 50% chance that Marfan's is passed on to your children and one of our boys definitely has the look of a Marfan's guy - yeah, he's only four but like one of the gentlemen said below in the connective tissue discussion, once you're familiar with Marfan's it becomes pretty easy to spot them! So I'm worrying overy my little guys too. I've got to take one step at a time, I know.)

Still not sure what to do on the nephew front. He works full time so would only be home at our place for dinner, maybe he would get home a little earlier since he works early morning till mid afternoon. I hadn't really expected him to do much except BE there for the evenings, but maybe I could ask for more. I'm afraid to ask for more, I guess. I'm afraid I'll feel uncomfortable with him around, like I can't really relax. Like I have to entertain him, or like I said, feed him. For some reason, having this nephew stay with us has like taken on some greater meaning or something ... all my stressful feelings seem to resolve around this one seemingly small issue. ugh. But I do appreciate your thought Gina, that it would be nice to have him "just in case". I think I'm getting myself worked up over nothing.

And Gina I so appreciated your validating my feelings on how difficult this is for ME. I think David knows, but of course, he is very caught up in his own mortality right now. I'm having bad dreams I dare not share with him, and feeling really overwhelmed by it all. Now, that's TODAY ... yesterday and for the last few days I've felt remarkably calm and hopeful ... just TODAY, I feel stressed and frazzled. Tomorrow is another day, I know, so I hope it brings me some peace of mind.

Thanks again for your kind words and assistance!

~ ali

 

[mile high]

Ali,

I had my surgery two and a half years ago and had the exact same surgery. My children were 11 and 14 at the time. I had my surgery on a Tuesday in the a.m. and went home on Saturday a.m. I spent the first 24 hours after surgery in Intensive care and then once I could get myself out of bed, stand up, sit in a chair, stand up again from the chair and lie back down on the bed i was transferred to the cardiac ward.

Interestingly I sometimes had to request pain killers and watched the time I had taken them and when I could next take some. I thought they would watch more closely the timing of this, so have your husband and yourself be your own advocate on this.

I do not know that having my wife there all the time would have been helpful. You drift in and out of sleep. It is amazing how quickly you recover but you do need help. Make sure to tell your husband to call anytime he needs to. I called my wife in the middle of one night when I was struggling mentally and she came over to the hospital and that really helped.

At home the first few days, I definitely needed my wifes help, especially with meals. Sleeping was the most difficult. We got a mattress that we layed on the floor of our bedroom for me to sleep on. I kept pain pills and water and a watch so that I could take them when the time came. The pain for me was not a specific pain, ie in the chest. It was an overall body feel of just not feeling well. Stay on top of the pain management pills. Getting behind is a bummer. My wife would go for walks with me the first couple of weeks.

We had neighbors watch our kids for us but they were older than yours. I think having a nephew, especially one your kids like, is a great idea. Give him some money and the Domino's pizza phone number or buy frozen pizzas.

Good luck. All will go well I am sure. My best to the both of you.