We are transitioning into the pre-surgery forum. Not sure I want to be here...

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delvalle6

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Aug 1, 2006
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122
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vancouver, wa
So Sammy is being evaluated for a procedure this summer. Timing is still a little up in the air. I have a ton of questions now.

We'll be traveling for him to have surgery-- how long should we stay in town after his surgery? What special arrangements should I make for him (ie special bed? quiet place?) while he is recovering yet we are away from home?

He's only 8-- what kind of recovery should I expect? Family all wants to be there-- should I stagger them so that he has family for a while? Or should I tell them to wait and give him some "quiet time" in the beginning?

I think my brain is melting. I should know what to do and I don't. There is a part of me that wishes we could just keep putting it off.
 
Hi. I have an eight-year-old daughter (without heart probs) and understand your anxiety. I would be too, even though I know it's so safe: I'm nearly 42 and had OHS at three and 11 (back in the 1970s so in the dark ages) and will need it again within a couple of years. Your little boy will be absolutely FINE. I had a coarctation of the aorta (I had a narrow aorta that needed replacing) done at 11, and paten ductus repair at 3. I remember hardly anything of the first and very little of the second.
Kids are so resilient. I remember doing a bit of physio ('I'm a little teapot' exercises) afterwards but basically they just get straight back into things and it's back to life as usual. Is it at a pediatric hospital that does lots of cardiac surgery. I'm sure there are really good supports in place. I think there's a good Australian website to do with 'heart kids' - try googling it and I'm sure something will come up with some links. It will get better. He'll have a great story to tell his mates.
 
Best of luck to Sammy! I bet he bounces back even quicker than us old-timers (and most of us aren't doing too shabby). The hospital should know a lot more about what this is like for an 8-year-old (vs. older people) so I'd ask them these questions too. But ff it's similar for kids as adults, he'll probably be in the hospital for the first 4-5 days after surgery. At which point, I'd guess it'll probably be a little more comfortable to stay in a hotel for a few more days after that (vs. getting him on a plane or in a car for a long ride). I don't know if there are flying restrictions for a while after surgery (i.e. are pressure changes hurt a concern?). But if driving, I bet he could easily go back home after 3-5 days in a hotel room. But again, I'd check with the hospital for their recommendations. You'd probably want to play it by ear in any case and see how he feels, but that'd be my guess, based on how I was feeling 3 or 4 days after I got out of the hospital. As far as a special bed - I'd say just get a bunch of extra pillows in case it's more comfortable for him to semi-recline than lay down. I think the main role family members can play is to help prevent him from doing too much. I suspect he'll start feeling so good a week or so after surgery, he'll start wanting to play like before, and he'll need to be careful for a while. So family keeping an eye on him can help remind him not to do this or that or it might hurt... But again - I be the hospital has all this stuff nailed pretty good for younger kids, so I'd double-check with them on some of these questions.
 
Best of luck to Sammy! I bet he bounces back even quicker than us old-timers (and most of us aren't doing too shabby). The hospital should know a lot more about what this is like for an 8-year-old (vs. older people) so I'd ask them these questions too. But ff it's similar for kids as adults, he'll probably be in the hospital for the first 4-5 days after surgery. At which point, I'd guess it'll probably be a little more comfortable to stay in a hotel for a few more days after that (vs. getting him on a plane or in a car for a long ride). I don't know if there are flying restrictions for a while after surgery (i.e. are pressure changes hurt a concern?). But if driving, I bet he could easily go back home after 3-5 days in a hotel room. But again, I'd check with the hospital for their recommendations. You'd probably want to play it by ear in any case and see how he feels, but that'd be my guess, based on how I was feeling 3 or 4 days after I got out of the hospital. As far as a special bed - I'd say just get a bunch of extra pillows in case it's more comfortable for him to semi-recline than lay down. I think the main role family members can play is to help prevent him from doing too much. I suspect he'll start feeling so good a week or so after surgery, he'll start wanting to play like before, and he'll need to be careful for a while. So family keeping an eye on him can help remind him not to do this or that or it might hurt... But again - I be the hospital has all this stuff nailed pretty good for younger kids, so I'd double-check with them on some of these questions.

I agree with Andy. To answer your questions, how far are you traveling? Are you talking about a few hour drive or far enough you need to fly? Also will he be having surgery ata childrens hospital?
For the most part, everyone is diffeent of course, but One of Justin's surgeries were when he was 10. he was in the hospital about a week, a little less and believe it or not, the day he was discharged he played drums in the school Christmas concert. Only because he was really upset after months of practicing he couldn't be in it, so the docs said if he was home and just did his songs and left, he could go, it gave him something to work hard for. That was his 3rd surgery but the first one he remembers. I'm not sure if you are asking about family while he is in the hospital or when you get home, but I would ask the hospital what rules they have, especially in ICU, often they only allow a couple people at a time in the room and have restrictions on kids below a certain age visiting. The day of surgery and the next day, Justin never wanted visators but by the 3rd day post op he was happy to have company, and some one to play video games with. Once home, we played it by ear, I told everyone to call before they came over, in case Justin was sleeping or getting tired. I tried to have things they could do with him sitting around, when he was younger it was legos, board games, crafts ect. About a week after that surgery he was feeling great, the hardest part was to keep him from doing dumb things (like tried to go sledding when he was at a friends house) but he still got tired quickly and took naps.

ps. The Social worker and/or Child life person at the hospital might be able to give you alot of good info, and they'll know what there rules are, what game systems theyhave available, incase yo want to take a new video gaame ect.

FWIW, we never had a special bed for Justin after any of his surgeries. he was fine in his bed, with extra pillows ad the surgeries when we had a recliner he napped in that during the day
 
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I completely understand the fears! My 9 year old has truncus arteriosus and has had 2 open hearts, at 15 days and 17 months. He's been coasting since but I know the next one will be coming up. Last time he worsened fast so I'm anticipating the same. I dread preparing for it. His last op he was only in the hospital for 3 days (which I think was not enough time) and we went home, lived a few hours away from Duke. He was climbing on the table within about a week of surgery. I thought I'd get a break. He really wasn't slowed down at all, and the change in energy level was amazing. I didn't think he was very tired or showing many signs but he really was, it was just easier to tell how off he had been once it was fixed. I would plan on a week in the hospital, possibly a week in the town of the hospital but all of that will be based on how he does. It would be so nice if we could know exactly how it would go, it would make planning so much easier!

My inclination about family would be to stagger them. Partially so you have help for more of the time you're there, so that you can go eat by yourself or with your spouse, and just get out of the hospital for a little while. I also felt overwhelmed with both sets of family around at the same time. It gets crowded, and I almost felt like I had to keep them happy. I think one or two people are a big help, but more than that at one time can just be overwhelming.

Hang in there, the weeks leading up are the worst, keep yourself busy so your mind doesn't have a chance to wander (easier said than done, I know!)

Becca
 
Just a couple of thoughts as I flew from Pittsburg to Oklahoma city after my surgery. Try to get bulkhead seats as it gives you a little more room. Exit row seats, of course, cannot be provided given his surgery. Usually the airlines are pretty good doing this for you if you give them a heads up. Have the airlines meet you with a wheelchair if you have connecting flights. If you have a ways to drive home, consider renting a van if you are driving. I stayed for 3 days after discharge from the hospital at a hotel for my own peace of mine, just in case there was a problem (there wasnt any) since I was so far from home. A quiet place at home would be nice in case he wants to sleep (seems like thats all I wanted to do for awhile) but I suspect he will let you know what he would like. I am as postive that all will be fine. I just know it.
 
Samantha, welcome to VR. My experience is that an 8 year old will recover with astonishing speed after surgery. As you are making plans, especially, making plans for the family to visit you might wish to think in terms of how they can augment his care and assist you. You will be better able to help manage his care if you do not exhaust yourself. Lots of people crowding around is not a good idea anyway since that will expose him to colds, flu and such which no one needs while their chest is healing. My experience is that everyone wants to be able to do something so give them tasks. Whether you have them run errands for you on their way to visit, spend time with your son while you are out, walk with him, or play games...whatever can be helpful, it can lift the burden you carry at least a little while providing variety for him. At such times, we all like to feel needed. Taking care of yourself, Samantha, is a necessary part of being a care giver.

Larry
 
Thank you all. To answer some questions-- UCLA is about 18 hours driving distance from my home. We would probably fly, but driving isn't out of the question. It all comes down to $$-- but I know he won't be able to be in a car that long so we'd have to get a hotel and make it a two day drive, so would we really be saving money-- not so sure. Flying would probably be the best method of travel.

We have family in LA but I was a little worried that the kids (Sammy's cousins) wouldn't let him rest and if they'd really be able to set up a proper place for him.

I see people here in the hospital, but I have no idea what happens when they get home. I really don't like the unknown.

Sammy has been begging for a memory foam mattress and tells me that he thinks his recovery will be faster if he has one (he's good at justifying spending my money). His younger brother does have an off-brand memory foam twin mattress (picked it up at walmart for a little over $100) I actually thought that getting out of the mattress with the sternal precautions might be more difficult-- any thoughts?

How about blood? some patients have OHS with bloodless methods-- I like this idea because you never know what is there that we don't know we should be testing for. Or maybe my husband and/or I could donate blood ahead of time-- any thoughts or experiences?

Thanks guys-- I really appreciate letting me pick your brains-- and the support!
 
I didn't need any blood - not sure how common or uncommon that is, but I remember asking if I had a transfusion (for the same reasons you're concerned) and they said no, I didn't need one. But as a precaution, maybe ask the docs if it would make sense for you to give some just in case. A lot of people find it's more comfortable to sleep in a recliner the first week or two rather than in a bed. I remember that being the case when I had shoulder surgery a few years ago, so I went and bought a new lazy boy before my surgery. I did a bunch of testing to find one I could get in and out of w/o using my arms (found that one that rocks and is higher makes it easier for me) and one w/ a lever that was easy to put the legrest back down (so I wouldn't have to get help every time I wanted to get out). But it turned out with this heart surgery, unlike my shoulder surgery, I was fine sleeping in bed almost immediately when I got home. And, because I felt comfortable using my arms a little more than I thought I would be able to, I probably didn't need the fancy recliner, lol. I found it was a bit of a challenge getting in and out of the hospital bed for me (mostly out), because they make such a big deal about not using your arms. But once I got home, it was easy for me. I think the higher the bed (I've got a pretty high one), the easier it is but maybe that's just me 'cause I'm a pretty big guy (6'2", 250). Yea, I think a hotel would be better than staying with his cousins - not only because of the noise factor, but also the possible germs (like someone said, you want to avoid colds/flus for a while if you can 'cause it hurts to cough, and I suppose could be other complications too).
 
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also have little to add, but it is important for sammy's mom to be available for sammy and healthy for the weeks following the release from hospital.

Living 1.5 hours from hospital, I had a major concern for my spouse and caregiver and the stress of her daily commute to hospital, while working and caring for home...somehow she got through it and was able to rest with me in 1st week at home as she got agreement from work to work from home...think she slept more than i did in that week (grin)

be supportive for the time in hospital but while in hospital Sammy will be well surrounded, be sure to keep some reserves for the return to home, where Sammy may be more demanding of your time and may have some mood swings.

Gil
 
Thank you all. To answer some questions-- UCLA is about 18 hours driving distance from my home. We would probably fly, but driving isn't out of the question. It all comes down to $$-- but I know he won't be able to be in a car that long so we'd have to get a hotel and make it a two day drive, so would we really be saving money-- not so sure. Flying would probably be the best method of travel.

We have family in LA but I was a little worried that the kids (Sammy's cousins) wouldn't let him rest and if they'd really be able to set up a proper place for him.

I see people here in the hospital, but I have no idea what happens when they get home. I really don't like the unknown.

Sammy has been begging for a memory foam mattress and tells me that he thinks his recovery will be faster if he has one (he's good at justifying spending my money). His younger brother does have an off-brand memory foam twin mattress (picked it up at walmart for a little over $100) I actually thought that getting out of the mattress with the sternal precautions might be more difficult-- any thoughts?

How about blood? some patients have OHS with bloodless methods-- I like this idea because you never know what is there that we don't know we should be testing for. Or maybe my husband and/or I could donate blood ahead of time-- any thoughts or experiences?

Thanks guys-- I really appreciate letting me pick your brains-- and the support!

Actually Justin had a memory foam matress his last couple surgeries, I didn't give any thought to it until namw but he didn't complain that it was a problems

Blood when Justin was a toddler, over 20 years ago, we HAD to give blood because they used more than and wanted as fresh as possible for babies/toddlers and you had to use 1 unit of blood just to prime theheart/lung pumpplus it was a verylong complicated surgery pretty much rerouting all the blood in his heart, patching holes, building conduits , but the newer bypass models don't need that unit, they just reuse the patients own blood. Now You would have to ask the surgeon if he thinks Sammy will need blood, but chances are he won't
but Justin didn't need blood the last couple surgeries, theone when he was 10 was an ER so we couldn't give even if we wanted to (I used to work in blood bank for years) It would depend if you or your husband are the right blood type, also to be a direct donor, you have to contact both the surgeon to find out what/where they want you to donate and most likely your local Red Cross, often there is a charge that isn't coverred by insurance to direct donate. But If it helps you to know he got your blood, it is worth it, if the doctor says he could use one. I probably would have donated for Justin's last surgery, but am on meds that make me not able to donate.
 

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