How do I prepare my teenagers for my surgery?

[schmidtkat]

Hello,

I am sending this out in search of advice and truly welcome your honest opinions.

My family, including two teenagers, will be traveling with me to the HEI for my AN surgery. My husband and I discussed whether or not it seemed appropriate for our children to make this trip. We have a 17 year old son and a 15 year old daughter.

While I know this will be difficult for them to see me post-op, they really want to be there for me. We have additional family members coming along to keep them busy, or at least distracted, from some of this.The additional family members will also fly back with them so they do not miss so much school, and will be a support for them until my husband and I return.

Our children have lost 2 very close family members in recent years to cancer. So hospitals are not new to them, nor is seeing a loved one struggling with a health condition. I'm sure with the experiences of these losses there is added fear.

I don't know how to ease this worry for them. Right now we are trying to keep things as normal as possible. We have a tremendous outpouring of support from family, friends, neighbors, church, etc... and that is a true blessing. It also means everywhere my kids go, they are asked about my condition.

It will just break my heart to see them hurt for me after surgery. I have faith in the medical team performing my procedure and have conveyed that to them, but I am not sure how to prepare them for this.

Have any of you dealt with this with kids? How do you prepare them? What can ease this for them?

Kathy

[Desilu]

 Re: Recently diagnosed - very large AN
« Reply #38 on: August 18, 2011, 07:43:26 AM        Hi Kathy,

Just wanted to mention one thing. My son, 15 at the time and my sister went with me for my surgery. The day of my surgery, when I was in ICU, (I was told this much later) my son came in to see me and got sick to his stomach. It was the first time that he saw his mother hooked up to all sorts of machines and tubes. It wasn't until the next day that I was alert and talking. He did much better after that. I think he internalized most of his feelings and it got the best of him. Just wanted you to be aware that the first day is not always a pretty sight. Maybe they should wait a day to see you? Although your kids may be able to handle it a lot better than mine did. I wish you the best.


I copied this from my response to Rick in which you were asking about your children coming with you.

After reading your post, you said that your children were exposed to loved ones being sick, but you are their mom. they make look at things a little differently. You know them better than anyone else. If you think they are mature enough to handle it then by all means let them see you.

Right before my surgery I had a priest and a minister each pray with me and my family before going into the operating room. I was so moved by all the loving words that I started to cry. When they rolled me away into surgery, I was at peace. You can request who ever you would like to come pray with you and your family before your surgery. Hopefully it will give you and your family a comforting peace. Hang in there, you are in good hands. I wish you the best. Ann

[Cheryl R]

Kathy,     You can explain the dressing around your head and lots of tubes to monitor you.    You may look pale and might be nauseated right after surgery or you may not.    You will be sleepy.  The next day when you go to the room you will have less tubes and the bandage still on.    You might be dizzy or might not.     They are old enough that if you have some idea of what to expect should be ok but you know the kids better than us.    The long wait while you are in surgery can be hard on any family and explain it is a long surgery.             Make sure they take reading material and ipod if have one.         Once I was up walking ok which in my case was real soon and drinking some, the IV was capped and catheter out and would get up on my own.     They would enjoy being your helper.                   Take care,    Cheryl R

[leapyrtwins]

My children were only about 11 when I had my surgery.  I felt it was best to let them go about their normal routine and not make a "big deal" of my surgery; I didn' t want them to get the sense that I was dying or anything like that.  While AN surgery is a big surgery, they didn't need to know the full extent of it at their age.  Everyone around me supported this decision and it worked best for us.

The morning of my surgery, they went to school as usual; their teachers knew what was going on which helped a lot.   They were a little anxious during the day, but overall having their lives go on as usual was a big help to them.  I couldn't imagine them being at the hospital in the waiting room or being at home focusing on the fact that I was in surgery - but that's my personal opinion.

My children visited me in the hospital a day or two post op when I was feeling up to having them there.  At that point I looked like "mom" except for a big, white mastoid bandage wrapped around my head.  My son got a big kick out of the fact that I could urine without even leaving the hospital bed - he picked up on the catheter tube 

I'm not sure how I'd prepare two teenagers.  Letting them make the decision whether to be at the hospital or not is a tough one, especially if they are traveling out of state with you.  But obviously you know your children better than the rest of us do; I'm sure you'll make the right decision.

Jan

[Kaybo]

Kathy~

I wanted to chime in here, even though I did not have any children at the time of my AN surgery.  However, I have 3 now - one of which is a teenager.  First, I agree with Jan in that you know your kiddos better than any of us...however, I must admit that I thought that my older daughter would be OK with a recent surgery I had because she has grown up with all my surgeries and health problems and seen that I am active and OK.  Well, actually, I knew she did not like hospitals but my hubs didn't - & even I didn't realize the extent of her fears.  We, too, have had VERY close family members go thru illnesses and pass away.  Unfortunately, in her case, that has worked against us and she is TERRIFIED of hospitals and procedures (& she is not my "nervous" child!).  She is so afraid that something is going to happen to her mama since other family members didn't make it.  That is MY child and y'all have probably figured all that out already!!
Also, I will NEVER forget a friend of mine coming to the hospital (I lived in Austin but had surgery in Houston) after I had surgery & was still in ICU.  She was in town for a wedding and wanted to stop by.  We were young - I was 25 and she was 24 - she tried so hard, but I can still see the shock on her face - she was not prepared at all for what her young, vibrant, always smiling friend looked like in that bed.  Remember that I was in a BAD way (14 hours - especially face - which doesn't happen anymore much & stroke which is VERY RARE) but it still has stuck with me!  I always tell people, if they are going to visit someone right after surgery to be prepared for a potentially yucky sight!!  I think if prepared for it, they will do FINE!!

Prayers for you and your family!!

K 

[tenai98]

I only had the turbin on my head and the oxygen mechanism in my nose and one IV in my hand.  Nothing else.
Jo

[Syl]

Kathy:

Please reassure your kids that what you have is not cancer. It wasn't until after my surgery, that I realized my niece thought my tumor was cancer. Maybe this will help them a bit.

Syl

[sarahinPA]

Hi Kathy,

When I went in for my surgery I requested no visitors excePT my parents, boyfriend, and brother. I don't have kids, but I do have a 14 year old sister who I requested not to be there. She's a bit immature and I didnt feel this was the right place for her. The decision is up to u if course, but I think if u feel comfortable with your kids being there, it would be ok.

When I came out of surgery, my family was shocked at how well I looked! I had a black eye but little to no swelling on my face. Also unlike the others, my bandage was just over my incision, not wrapped around my head, so u could only see it from the back.   I was actually having a hard time sleeping for over 24 hours after surgery ( I think I was nervous to sleep or something) but I wanted my family to stay with me at every possible
Moment.

Good luck with everything, it will be difficult at first but it sounds like u have a great support system!!

[psmix]

Hi Kathy,

My situation was very similar to yours. I also have two teenagers - 17 and 14 at the time of my surgeries. We also lost a very dear friend to cancer in between my operations. It was very important to them to be there with me, and also important to my husband to have the family together. I also had other extended family to help keep them company and pass the time.

We assured the kids that I would recover, even if the recovery seemed slow. We tried to prepare them for what to expect immediately post-op and the possibility of facial paralysis (which I did have after the second surgery.) The main points to expect were the head bandage, lots of sleeping, maybe balance trouble, maybe vision trouble, maybe hearing trouble, maybe facial droop. The most important thing was, regardless of any of these outcomes, I would recover.

I was in ICU for three days after the first surgery, and that hospital had no restrictions on immediate family visitors. Though I slept most of the time, my husband later told me that my 14 year old son sat with me in my room for hours watching the monitors. Every time he saw my heart rate start to speed up, he would come over to soothe me.

We went to HEI for my second surgery.  The whole family came both times.  HEI had more restrictions while I was in ICU - visits were limited to 2 people at a time for a total of 10 minutes each hour. Because I had a lot of family there, my kids would rotate in to check on how I was doing. They also flew home with a family member while I was still in the hospital, and my husband brought his laptop into my room so that we could Skype with them in the evenings. It was very important for them to continue to see me, that I was doing alright and continuing to get stronger. As I recovered, they gradually shared all of the stories of the things they had done while waiting for me. I have a terrific family and they had lots of laughs and adventures trying to pass the time. (There is LOTS of waiting!)

I think the most important thing for you and your family to remember is that you will get better. It will likely be slow-going, but you will gradually resume your normal activities. My kids have been awesome. I think they matured throughout the experience and our family grew closer.

As a side note, we chose to stay at the Marriott in Los Angeles instead of the HEI housing. The Marriott is only a couple miles from the hospital and offers a terrific rate for HEI patients on their concierge floor. It was a nice place for my family to relax away from the hospital. I ended up in the hospital for an extra week, and the Marriott was very flexible in continuing to extend our room.

Best of luck with your experience!

Pam

[psmix]

And...advice from my 17 year-old daughter to your kids...

Even though they will be nervous, let them know that they are very good at what they do at House. Even if there are complications, they know what they're doing and you will get the best care!

[kareno]

Hi Kathy:

My husband had a 3 cm AN removed Retro Tufts Boston Dr. Heillman last year.  I have two teenagers. I had mixed feelings on how to handle the kids.  We also at the time had a nephew courageously battling a cancerous brain tumor so we were on a whirlwind of emotions. Not one brain tumor in the family but know two coincidentally both named Mark.  I decided after speaking with the kids guidance counselor to let them come to the hospital and stay while the surgery was taking place.  They wanted to go and be there with our family and friends which all turned out fine.  They did see their dad very briefly after surgery as it was really late he had a 13 hour surgery and it was fine I was dizzy.  The next day visit he was doing much better but my daughter got very dizzy and had to lie down.  You know your children best I did explain the whole surgery and recovery process and was completely honest.  For us the worst part was the allergic reaction to the steroids,he was in a state of drunkenness. Other than that my husband did very well no facial paralysis, no taste or balance issues, does have SSD and some short term memory issues but he is doing great.  I did stress to the family the utmost confidence I had with the whole medical team and his outcome.

You will be in my thoughts and prayers as well as your family. 

Karen

[schmidtkat]

Hi everyone,
Our teenagers did make the trip to HEI with us and were here for surgery. We had additional family along who took them to see some CA sites on the pre-op day. That was a real treat for them to get to the beach and do some shopping on the pier. Certainly not the LA vacation we would have preferred, but they did get some CA action. They stayed in the waiting room for the surgery and were able to visit me in recovery and ICU. I was in a regular room by the time they flew home on Sunday. They handled it well, and we think this worked best for them to be a part of this. I'm sure it varies for everyone, but appreciate the advice from all of you in preparation for this. They are back in school now, on a routine again as much as they can be with us still in CA.
Thanks and God Bless,
Kathy