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  • Update and Sibling Question

    Thought I'd bring you up-to-date with Allie's appointment today. It looks like she will be fused T6 (maybe T-5) - L4. The information I received from this website was so helpful with the questions I asked the doctor as well as how comfortable I feel. Thank you to everyone for contributing.

    The doctor said I will be able to be in ICU with her at most times except when the nurses need me to leave for a few minutes. This information made me feel better as well.

    Allie was so nervous before her appointment, she said she felt like she'd through up. However, she did great. I think she actually tuned the majority of things the doctor was saying out. As she looked like she was in a far away place.

    My son is 10. He will be turning 11 when Allie is in the hospital. What advice do you have regarding him? We are not planning on him seeing her until atleast 2 days post-op.

    Thank you for your advice. Teri

  • #2
    When I had my surgery I was 13 and my sister was 16, and it was at the time of her year 11 exams. Mum and Dad did not bring her in until the third day (i think) after I had surgery (i think it was because they thought it would be pretty scary to see me like I was and that her mind needed to stay on other things. My sister said that this was pretty harrowing and traumatic to see me like this (i don't remember her coming in so i was pretty drugged still), but she was glad that she didn't come any earlier. For your son, and for most sibilings for that matter (especially younger) I would not suggest them being their/ brought in until at least the fourth day, or when Allie is is back in a normal ward/a little more alert/ not so many tubes etc coming our of her/no longer in ICU. I think it would be a little tough for him to see his sister like this. If he insists that he wants to go earlier,or you think that he is mature enough to cope with going in earlier spend a lot of time explaining why the tubes are there/ why she is asleep, and watch out for signs of distress. From what I remember, two days post op, you are still often asleep most of the time, spend time throwing up, and feeling very sore for yourself, and you are not really aware of your surroundings. Interesting aside, supposedly when I was in high dependency, I gave mum all these instructions on how to use my asthma inhaler, and then took it (even though I have absoltely no recollection of this. ). The time frame for me was that I had surgery on the Tuesday, was in high dependency until Friday, ,had visitors on Saturday from my Girl Guide unit (my leaders visited), had a few more visitors then was out the next Tuesday/Wednesday)

    Alison

    Heres some additions (i have just come home from school and am rereading this

    : regardless of when your son goes in make sure you keep your son fully informed on what's going on with Allie, how the surgery went etc. I think if I had been the sibiling, I would want to know. It is easy to forget this because your mind will be on billions of other things and it can be easy to forget
    :try and keep your son's birthday as normal as possible (unless it is on the first day of Allie's surgery), sing happy birthday, have a cake etc (i don't know how to explain this, but i think you know what i mean :-)
    : Allie was probably listening a bit more than she appeared to. It is probably starting to really, really sink in and it is a bit of a shock when it does, she was probably also trying to keep herself calm. If she did space out, it may be her way of coping with it all

    Last edited by Alison; 06-02-2004, 04:53 AM.

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    • #3
      Yes, I am sure she was listening even if she was in her "own world". On the way home from the doctor she said the appointment wasn't as bad as she thought it would be. She did say that seeing x-rays of others post-op was the hardest. I certainly understand that!

      My husband is going to have an impromptu party for Allie's brother. We think that gramma is going to come and help. I agree that it needs to be as "normal" as possible but I can't/won't leave the hospital. Hopefully, he understands!

      We really need to rethink and play it by ear when he gets to see her. I don't want him to be scared!

      Thanks for your advice. It really helps! Teri

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      • #4
        Hi Teri,

        I think whatever your family works out, will be best. Each family is different. My son started having surgery as an infant (not fun) and my other children were 10 and 5. I made sure we talked - A LOT! They needed to know (on their level) how things were going and how their brother was doing. They also needed to see him. I waited until he was stable before grandma brought them to the hospital. Tubes and wires and especially intubation tubes are frightening. He won't need to see that. Maybe, if you don't want him to see her in person, take a picture for him to see her. The picture will show that she's resting well and doing fine.

        I also agree with you 100% that you need to stay with her at all times. You need to be her advocate. One little tip is that the first night, she will be heavily sedated. This is a good time for you to get a full nights rest. You'll need your strength for the rest of the hospital stay.

        Take a notepad with you. Its so important to write things down. Write down the pain management plan BEFORE the surgery. This way you will be able to keep the nurses on their toes and on time for meds. It is much easier to control the pain/discomfort before it gets too severe. Also, write things down that you need to remember. My notepads are filled with partial sentences, but those lines are very important (things I wouldn't remember later, like when the doc came out after surgery and said the autonomic nerves all look great, etc.). Your daughter may want to read the events throughout the early days of her post-op recovery. Most people don't remember those first few days, and sometimes they can be quite entertaining. I have 3 pages of notes from when my hubby had elbow surgery in March - he was talking in his sleep! My kids think its funny to hear the things he was talking about during his "coming out of anesthesia".

        Make sure you drink plenty of water in the hospital. Hospitals are very dry. You need to stay hydrated.

        There are so many things I could write, but each person has a little different experience. I'm sure you'll do great. Keep talking with your family. They will be a great source of support.

        Oh, I also wondered if your daughter will feel bad if she misses out on her brother's birthday. If she will feel bad, maybe you could have a family celebration for his birthday early - like maybe dinner and a movie before her surgery. Then, grammy can help him with his "real" party later. Just a thought...

        Take care and we'll be thinking of you both.
        Carmell
        mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

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        • #5
          Amber only spent 19 hours in ICU. Surgery was Wednesday and she was back to a normal ward Thursday afternoon. 3 of her sisters came to visit her on the Saturday. By then she had most of the tubes removed and she was awake enough to enjoy their visit. They appreciated seeing for themselves that she was OK. They are aged 13, 11 & 10. I don't think that they would have coped well seeing her with all the tubes though. My parents who were looking after my other children thought that it would be best if the youngest (she is 3) didn't come as it was a 2 hour drive (if there was no traffic) and she is very clingy to me. They were worried that if she came wouldn't leave. That was hard on Amber as they are very close but she understood and it made coming home even more special. Take lots of photos but before showing them to your son tell him that there are lots of tubes. You don't need to go into too much detail but you do need to prepare him so that he is not frightened. I sent sms messages to my other kids a few times a day to keep them up to date on how she was going. Things like drips etc coming out, getting up, first shower, seeing doctors, having x-rays. If I was missed sending one for a few hours I'd get in trouble. It helped them alot.
          One thing for when you take photo's. Jot down the names of the staff, Amber asked me who they all were. Luckily I had written their names down or I wouldn't have remembered. Write everything down. You will have so much going on and be so tired that nothing will stay in your memory. Amber's surgery was 3 weeks ago and if I don't look at what I wrote I can't even remember what day things happened.
          As for your son's birthday maybe you could try to arrange your daughter to do a video message for him that you could play at his party. Or even just a tape recorded birthday greeting.
          Hope all goes well.
          Cheryl.

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          • #6
            just my humble opinion . . .not seeing your sibling who is having a major procedure would be a lot more scary that actually seeing her and seeing that all is well or as well as it can be in the recovery phase. Little minds can run wild with fears when they are not allowed to see and experience the realities of life. Maybe there is a child life department at the hospital and they can help you and your daughter and your son figure out the best ways to cope.

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