Need advice!

[adamsmom]

Adam's Ross is two weeks away, scheduled on the 14th. If anyone has advice on how to prepare and support an 11 yr old, I would appreciate anything. What kind of items will be helpful at the hospital? Is a stuffed animal from home unsanitary and unsafe? I presume his gameboy will be great. Is button up pjs neccesary? How many? What is the best way to answer questions about pain and risk in advance? I do not want to scare him, but at eleven, I don't want him to ever think I lied to him either. I feel like it is a balancing act. My own stress is building, and I don't want that to affect him. So how much should he be aware of? Help!

 

[Andrew'sMom]

You must both be very nervous at this point with surgery so close. I have luckily not been that route yet, so I can offer no help to your request. But, please know that I will keep your son and your family in my thoughts and prayers as you go through this. I am sure you will get lots of advice on your questions as people come by your post. Wishing you the best of luck for a smooth and uneventful surgery & recovery. I will be watching for updates. Do you have a care page set up for your son?

 

[Nancy]

I know our local hospitals have all the new electronic/ computer game setups for children which can be wheeled into the rooms.

Ask about that. They also might have some of the latest DVD movies for kids.

 

[Lynlw]

hi I know what a rough time this is, I would just follow Adam's lead tell him he can ask you any questions and you will be honest, Justin never liked talking about surgeries much so I would wait for him, but let him know to let me know if he has questions or fears.
first i would make sure you have a small 9like a throw size pillow to "hug' after surgery,it really helps w/ the pain Justin also used an uglydoll.com as a pillow for his last surgery and it worked so great we actually bought a couple for friends having surgery.
a stuffed animal from home should be fine especially if it comforts him.
also his gameboy, the hospitals usually have some game systems, but we alwasy take justin just incase there aren't enough, some of the hospitals have systems in each room, so i would call and ask what they have, and what kind of system so you can take a new game for him, also ask ifthe have vcr's or dvd players and take some movies, (alot of the ones they have a kid hospitals are really young, so be safe and take some he likes.
I don't know what Adam's intests are but Justin always liked legos when he was that age and they are easy to do sitting in bed, also take deck of cards. I don't know if you have a laptop if not ask the hospital if they have any if Adam likes talking online to his friends, if not maybe you could borrow one
where is he having surgery?


yes take Button up tops, it is pretty painful at the beginning to lift your arms over your head to put tshirts. Justin usually just wore shorts when laying around his room and would throw a hospital gown on to walk around, if he didn't have a robe. just have a button shirt to come home in at least.
here's the link to Justin's page, if Adam or you have any questions we will answer them as best as we can
oh a biggie if you have or can borrow a recliner it really helps at home both for sleeping and hangin around the house the first couple days,
Lyn www.caringbridge.org/nj/justinw
ps If you haven't done so i really recomend setting up a page both caringbridge and care pages are free and it makes it so much easier to update everyone instead of being on the phone when you want to be doihg things w. adam and it's really nice to read all the messages of support

 

[Kevin M]

Hi. I have no experience with children, but I just wanted to pass along my best wishes and also to mention a couple of things.

Do not be terribly surprised if he seems a little lethargic and doesn't want to play video games or do much of anything for the first while. Being put under for a few hours, coupled with the heart / lung machine makes you a little messed up for the first few days. The drugs stay in your system for months, but the effects are dramatic in that first week post-op. The heart lung machine kills brain cells and can have an effect on short-term memory and concentration. This is normal and is not anything you should worry about. It is a temporary thing. The only reason I mention it is because you may be making all these preparations only to find him seemingly not caring about anything pertaining to play for a while. Don't let it alarm you if this does occur.

The pillow is the best idea ever. When you cough or sneeze, it hurts a bit, so hugging the pillow really helps. One also feels protective and vulnerable about the chest area and the pillow offers more comfort than one might think.

It must be very difficult for your family to see your little guy go through something like this, but remember that youth involves that "rubber band" effect where everything heals super-quickly and they bounce right back. I just know everything will be fine.
Kevin M

 

[Der Biermeister]

try to keep him free of any colds between now and the surgery. You really don't want him coughing or sneezing if at all possible.

 

[Janea]

Hi. I just wanted to let you know that I was suprised how much pain I wasn't in regaurding the incision etc... The pain I experieneced was due to my extra chest tube they put to drain a abundance of fluid in my lungs (this is not always the case though and your son might be fine.) Having had OHS myself, and having kids of my own I am trying to imagine how I would help them prepare. It doesn't hurt to bring the PJ's though he will have so many tubes hooked up to him chances are it will be imposiible to wear them. Even after the tubes comes out you have to go to the bathroom alot because you are on lasix so pj's may be cumbersome. Also I can't imagine being able to play a game boy after surgery. Maybe kids are more reseilent and are different, but I had so many drugs in my body, the room was always spinning and I couldn't even watch TV for 2 weeks because I couldn't focus on the TV. I tried to push the little button on my MP3 player and couln't navigate that because I was so dizzy....so don't be suprised if he is too tired or drugged to use his gameboy. After a few days I was able to listen to my husband read emails....so maybe having a book you read out loud or a book on tape? It's probably best to bring a arsenal of things you can try. They of course will have a rec therapist at the hospital who will have a ton of resources and toys (and probably even game boys!) and will likely know more about what sick and recovery kids are able to do. Play is the best therapy for any kid! You may even want to get in touch with the recreational therapist and ask her/him what they reccommend you bring.
I don't think that you will have to prep him about being in alot of pain. What is more important is to tell him that if he feels ANY pain to tell you or the nurse. It's best to stay on top of it and get meds soon. I would tell him he will be very very tired and will not feel like doing much for a while. If it were my kid, I would sew a pillowcase out of some bright cheerful fabric...pick something he likes like spiderman. Then he could have his own pillow and a splash of color on those drab beds makes it feel more home-y. Also My friend made me a blanket which I absolutely loved and used the whole time in the hospital. The night before my surgery my childern and I decorated a wall full of inspirational quotes and sayings people sent me. I had my kids color pictures of angels I printed off the computer. We hung them up all over to remind me that angels are watching over me. It was a neat activity and was a great way to prepare for the big day.
My heart goes out to you. It must be so hard to seeyour boy have to go through this. I will pray for youa nd him. Best wishes to you my friend.
--Janea

 

[adamsmom]

Wow! Some good responses! I really appreciate the advice. Andrews mom- the prayers are so appreciated- I do believe they make a difference and I want Adam on every prayer list I can find to put him on. My fear may be a little more extreme because I previously lost a twelve year old son in an accident. That was in 1988, and Adam was born in 1995. Needless to say- I am overprotective to the point of it being a fault.
I had not even thought of what games and movies the hospital would have available. Very good point Nancy- I won't worry about that too much. Like Janae said- probably a moot effort anyway- we will see. Adam is obsessed with his gameboy though and it will be really strange if he is not interested in playing.
LynW- you gave incredible advice. We have a recliner in place, and I have a special new pillow bought. We are having his room redone while he is in the hospita in a wolves them- so he will have a surprise when he comes home. I am working on a care page- just having difficulty figuring out how to reduce the size of photos so they will post- I will let you all know. I still need to get pj's that button.
Keven- I saw that rubberband effect when Adam was 18 months and had his ASD repaired. It was incredible how fast he bounced back, and although this is a much larger more complicated surgery, I am hoping it will be similar this time. One of the big differences will be his age, of course. I do have an appointment with his pediatrition one week before to verify there is no health problems that would interfer. Like Der Biermaster said- I am concerned about a last minute cold. I have been trying to fatten him up also. How much weight might he loose?
Last- Janae, thank you so much for what you said about the pain. What a relief to hear what you said- and what good advice to tell him to to let us know if he feels any pain. I like that approach. I liked the angels idea also.
If you guys think of anything I should address- let me know- should I have his teeth cleaned before- should I get him a short haircut? I know these are mostly common sense things to answer- but right now my mind is swarming, I'm afraid it may only get worse. I am glad there is a group to listen and understand. Thanks- Adamsmom

 

[Georgia]

Yes, get him to the dentist before - probably not as much of a problem as for us old fogies, but he needs to be sure there's no decay or abcesses.

I think a cd player or ipod is great - intensive care was VERY noisy, and people in there were groaning and crying - I was totally unnerved. Had hubby get a cd player & I could close out all that. Maybe an operation present? And if you get an ipod, he could choose his own music? He won't be able to play gameboy in icu due to tubes etc., but being able to close out the noise & confusion in there is a big plus.

Best to you.

 

[Lynlw]

Justin had his last surgery last may 2 (05)you can read on his page what he was able to do each day. honestly by the day after surgery he was playing his games and he had his surgery mon and wed was talking online w/ his friends and playing his game (Xbox or nitendo I forget which he took) he was home by friday and we already had to get more movies since he watched all his, i wouldn't worry about getting his hair cut, Justin was able to shower a couple days post op, so if he likes his hair like it is, I would leave it alone.
I would definately ask his surgegon if he would like him going to the denist this close to surgery, they might not want to chance anything w/ them diggin in his mouth, if he doesn't have any cavities that bother him, i would probably not go,
If Adam would like to email or Im Justin w/ any questions that would be fine, (altho he has prom tomorrow and then the weekend at the shore, so he might not get right back to him, Lyn

 

[Lynlw]

oops thought of something else soory I don't know if this is something adam would like, but when Justin had his last 2 surgeries, we went to the craft store and got some hemp rope and beads and a little book on making easy macreme bracelets necklaces ect. just basic knots, he liked to do that even when he got home and made stuff for friends and family too. that and at home, we did alot of jig saw puzzles (he was out of school the whole second semester last year,) lyn www.caringbridge.org/nj/justinw

 

[adamsmom]

I will call the dr tomorrow and see what he thinks about the dentist. Adam is actually quite hyperactive and takes medicine for it. I wonder if that will be an asset. I wonder if he will continue that medication through this. Have you guys noticed the brain fog thing with your children afterwards? This will be a very long surgery- 7 to 9 hours he said, and I am realizing the risks of that. So many concerns- but of course it will be fine. Just an ordeal to get through, and look forward to having it behind us. If he can concentrate well enough afterwards- he should love the Lego idea and puzzles. The ipod will take some thought- I don't really understand much about them as I've never seen one or how it works. It sounds complicated- having to download the music and all. But, If the sounds of the other patients are disturbing- I want him to have the ability to drown it out. That makes a lot of sense. Don't know about beads- maybe... By the way- we went to Justin's sight- what a neat kid! Adam and I laughed about the broken heart to heartbreaker joke!

 

[gijanet]

I'm behind, I'm behind..........

I'm behind, I'm behind..........

My classic battlecry..............sorry, I must have missed your intro. Where in Fort Worth are you? Fort Worth proper? or outlying? Does Adam do his routine care at Cook's, by any chance?

Anyway, Lyn covered most of the essentials. Just wanted to remind you that you are in a hospital..............do NOT leave any valuables lying around. I hate to bring material things into this when I know Adam's health is all you are worried about, but you wouldn't believe the "stuff" that disappears when y'all go out strolling the halls or go down for an echo or an x-ray. We've been lucky as I think children's hospitals are not nearly as bad, but with Medical City being a "traditional" hospital, you might want to take precautions. Call the hospital and see if they have any type of cabinets or anything that you can lock up in the patient's room. If not, take a little suitcase that you can lock up with small electronics,etc. Yes, someone could walk off with that but it would be a lot more conspicuous. DON'T leave your purse alone!!! Put Adam's name on everything, engrave it if possible, if not then a sharpie will do. It's a sad world when you have to worry about things like that...........

Just my two cents for prepping Adam: contact Medical City and see if they have a child life department. They can arrange to give y'all a tour of the facilities, minus the OR, of course, but the recovery room, the ICU, etc. DO prep him for the vent and the numerous machines he will wake up to and the NPOing before surgery and the not being allowed water for so many hours after being off the vent. Warn him about the possiblity of queasiness. Katie was only four during her last surgery(ies), but I really think our prepping her helped a bit...........I know it did with the vent and the NPOing. P.S. If they don't have a child life department (since it's not a children's hospital in toto) contact the hospital social worker or your surgeon's office and see if they can set this up. I feel it's that important.

Do set up a carepage. With or without pictures, it will make your life so much easier. As we spent much of our time with Katie in the PCTU, it was difficult to make phone calls, etc. One update on the computer and you're done notifiying everyone.

Take cell phone, e-mail addresses, camera, and yes, the Gameboy. Also, call the hospital and see what's available as far as DVD players, VCRs, game consoles, etc. Most of the children's hospitals have these available on rollaway carts, first come, first serve basis, but I don't know about Medical City. If they are available, take some of Adam's favorite DVDs or videos. My 13 year old son is an Ipod wizard. What do you need to know? We also took some of Katie's favorite CDs and a CD player if the Ipod thing is mind-boggling. You could bring headphones, too, to drown out any noise. BRing change..........and lots of it. If you can, get Adam's friends to sign a huge card now to put on his wall............don't show it to him before surgery obviously. Then you can surprise him post-op with it in his room. Take pictures of Adam doing things he reallly likes to do and post them up around his room to show him what he will be back doing soon...........only better. Sorry, just rambling.

Wishing you the best. Once we get our "summer schedule" fixed, we might come visit you guys if we can manage it. WHat is your last name? heehee! Guess that would help.............uhhh. we're here to see Adam................don't know his last name, but surely he is the only Adam here....................

We will keep you in our prayers. Many hugs. J. P.S. DON"T go read Katie's carepage for her post-surgery stories from last summer. You don't want to go there. Adam's will go fine.

 

[gijanet]

P.s.

P.s.

Yes, call Adam's surgeon's office about the dentist and when to stop all meds prior to surgery. Hugs. J.

 

[adamsmom]

My goodness Janet- I will print your message out and take it with me- so much good advice and things I need to think about. We are scheduled for the tour on the 13, the day before. It does not feel like we are being given much prep advice. They should have handouts with everything in it. This is a bit overwhelming right now. I am having a lot of problems focusing on my daily work. I have been trying for four days to cut commission checks which should have gone in the mail on the 1st, and are still undone. I must get focussed. Anyway- interesting that you are in Arlington. Do you come to Fort Worth Cooks? We were there with Dr. Lai until Adam's surgery became imminent, then research for the best qualified surgeon led us to Medical City. Our new cardiologist is affiliated with Dr. Mendeloff, who was referred by Dr. Ryan, who seems almost famous in the valve replacement world. We do some counseling at Cooks, our routine cardiocare is at Grapevine Baylor, pediatrician is in Keller, we live in Hurst. Don't even ask where the dentist is. Ha! City living! Adam's last name is Way and it would be nice to meet you and Katy- sounds like she has been through a rough year. I hope things are sailing smooth now. I went to her page and did some light scanning of her story. I would like to read more when I get the time. I think even scare stories are educational to the next person and might prevent the same thing happening again by knowing what to be aware of. I want to be on my toes, and they'd better not leave a syringe in my child's bed!

 

[Lynlw]

Hi janet probably won't be back here until late tonight so wanted to let you know katie has her surgeries at Uof M. I asked a few of my chd groups if anyones child had surgery at medical City, so they could let you know what things are like there, since every hospital is a little different. If I hear from anyone i'll pass on their contact info.
oh one thing I would be sure to find out, is, what the rooms are like (how many to a room ect) on both the floor and CICU and where the parents sleep, there are hospitals where parents can sleep doown the hall in a 'parents room' that might be a first cme first serve, some have it set up that you can sleep in the room w/ the kid after the get out of the unit and some have it that even in the unit they have some private room for parents to sleep with their child. (my fav is dupont, where each child has a private room w/ 3 beds one for the child and the others for the parents AND they provide 3 meals a day for the parents, but I dont know many places like that) also i'm pretty sure medical city has a Ronald house, you might want to look into that if there is nowhere you can sleep, and see if you qualify, some of the houses there is a certain distance you must be furthur away (like an hour) from the hospital and there are a few ronald houses that only let cancer families stay at. you could probably look online for the one by medical city and see what you need to do. I did just do a quick search for RMH in dallas and you have to live 75 miles away,
Good Luck, I know this is such a stressful time, Lyn www.caringbridge.org/nj/justinw

ps There is a book mattys heart, i hear is pretty good at describing things I never saw it, but asked if it was ok for an 11 yo and was told it helps young kids but would probably be good, you can get it at http://www.kidswithheart.org/

 

[Marguerite53]

Dear AdamsMom. I'm just popping in here to give you support. My AVR was 6 weeks ago. I cannot even imagine what it is like to worry over a youngster. You have (as do all the parents, here) my utmost respect.

Please, pace yourself. You are going to be frazzled and worn out before the big day gets here! We adults go through the same pressure.....can't get it all done, can't get it all done.... You need to be rested and ready. Please try to find some time to take care of you.

Next, I just want to add that 11 year old kids are very savvy. They know stuff. I like that you want to be honest with him because I know he will respect that forever. Obviously, you don't want to scare him either. He is noticing that you are stressing out. He has great antennae! Maybe an approach would be to confess to him that you are somewhat out of your league, here since you've never been through anything like this yourself. You really want his help in the planning; you want him to be comfortable, have what he needs, etc.. but things might not be perfect. I always found, with my 3 children (now 18, 21, 23) that if I remained human, willing to admit mistakes, willing to share my emotions....it all went better.

Lastly, making your photos smaller.... Ross, here, sends us to www.irfanview.com . It is a free program, easy to use, works great. I know Ross would be happy to help you if you can't seem to figure it out. PM him. He's always there for us .

Best of luck. Breathe. Find some spontaneous moments to laugh and feel the joy of your relationship. Don't make this all about getting it done. It's kind of like labor and birth. It's gonna happen its own way whether you think you're in charge or not!!

Wishing Adam all the best.

Marguerite

 

[Perry]

Adamsmom,

I can relate since I was in for 6 days and 6 nights (I am 42 though). Perhaps some of these suggestions have been made......but justy in case:

I think normal clothes help (as normal as tubes and IVs will allow). Easy to get off and on shorts and/or sweatpants, a comfy button shirt, and good 'ole gym socks. I hated looking like a patient after the first couple days.

I recommend earplugs to sleep with. It is a noisy place where patient rest comes in far second to patient attention. I was so over tired but nights were extremely noisy.

An MP3 player (IPOD or any other similar device) loaded with music. I spent reasonable time before going in ditravcting myself by filling my device with music.

In three weeks you will all be saying "it wasn't so bad".

 

[catwoman]

Adamsmom:

I have Adam & your family in my prayers. I live in Aledo, just west of Fort Worth, and work in downtown Fort Worth. Occasionally pass through Hurst en route to DFW Airport.

Please keep us posted pre-op & post-op. I will be heading to Reno NV early on the 15th for a convention, but will probably take my laptop w/ me.

 

[doubletroublex2]

I have to add...

I have to add...

The one thing that I did is right down all the updates, all of them. Even the one that I was told they were "working hard?!" I know some update. Anyway, take pictures lots of them, I have just looked at them with Caleb this week. I asked to make sure that he was ready and he said "yes". So we looked. He really enjoyed the pictures, because he doesn't remember any of it! That is the key thing, making sure that they won't remember too much.

As for you I have to say you may want to let someone help you with all of your major responsiblities. This doesn't get easier until it's done! It's scary stuff and I wouldn't expect anyone to "keep it together" at your point. Sure you will have good day and not so good days, but remember not to over do it, you will need your strength for after surgery and you still won't be resting very well.

Now advice for Adam from Caleb... Try to sleep throught the first days! It helps! Also watch out for those lasix they really make you pee!

Jamie and Caleb