Nicole's Surgery

[RugbyLaura]

Melissa,

Thank you for being so honest with us. What a ghastly experience!! Your post made me cry for you all (and to be honest, for us too). As you know, it will get better and life will return to something approaching normal. Hang on in there!

Laura x

[laurieg6]

The whole hospital experience is horribly surreal & draining. I felt like I needed a week to recover once I got home & we had constant family visiting for two weeks & then intermittently all summer. It's great that you're able to write & talk about it so soon.

Please remember that it will probably get better for Nicole (& therefore the rest of you) on a daily basis. Each day you'll notice her improvement & it will be such a relief. I'm so glad that the surgery went well & that you're on the "other side" of it now. Hang in there & try to sleep as much as you can so that you, too, can recover. Nicole won't even remember most of what she's been through & she'll be back to herself very soon!

[Snoopy]

Hey Melissa,

Wow, sounds like you had a pretty rough hospital stay. Is it the hospital's normal routine to keep kids in ICU for a while? I know some kids go to ICU and some don't. Jamie went to the Intermediate Care (the level of care between ICU and a regular room) for the night of surgery and moved to a regular room the morning after surgery.

Did she need any blood?

I'm sorry Nicole wasn't awake enough to insult you. I know you really needed that. How long was she in surgery? I'm sure that had something to do with how awake she was in the recovery room.

I'm glad the surgery is over. I'm sure now that you're home Nicole will do much better. I was in Philly on Saturday and had planned to stop by, but I ran out of time and it sounds like Nicole might not have been up to a visit anyway.

Remember to take care of yourself. Sleep when Nicole sleeps. And don't forget to eat.

Mary Lou

[gerbo]

melissa, so delighted to hear that the operation was succesful and went without complications, that is really the most important of all! My mum had heartsurgery 6 months ago, and was awful with regards to pain and depression after. However; the operation had been succesful and without complications, and bit by bit she picked up and is now a changed person and doing so well. It will be the same for Nicole, she will be in pain (does she get enough painkillers??) and she will be so uncomfortable and maybe still scared and anxious. You know what you have to do, and i am sure you are good at it, and that is to distract her, allow her to vent her feelings, cry with her and keeping painting this optimistic picture of the future (which won't be that far off). She and you will not regret it and be grateful that you made this decision!!

take care melissa

gerbo

[MATJESNIC]

Thanks, Everyone. My husband is staying home today and will go back tomorrow. I slept on the floor of Nicole's room and neither of us had much sleep. Nicole hasn't said she regrets the surgery because we didn't have a choice. She knows her curves were only going to get worse and would have to have it eventually. She just can't see that things will go back to normal.

We were in the Pediatric Intensive Care for 3 days because Nicole received morphine when they closed her up at surgery. It is a relatively new procedure. If you receive that, you automatically have to go to the ICU. Then she had low blood pressure for a while. I didn't mind being there because it was like having a private nurse. There were two patients to one nurse. Once we had two nurses at once because one was a new one being mentored. they were both wonderful. Nicole was a "character" calling out "Nurse, Nurse, help me." and "Claire, Claire." or whatever the nurses name was at the time. Throughout the course of our stay, we had about 13 nurses and there were only 2 that we didn't like. The others were wonderful. She stayed in the ICU and received her own unit of blood and then later some packed red blood cells. We actually made a mistake and Nicole is O positive and I am A positve so my brother and Jessica donated for nothing. Instead my husband and son should have donated. We realized that about a week before surgery and after crying for hours, I had to just accept it.

Throughout the ordeal, I never cried. Except one time. She had told all her friends they should not visit in the hospital. But one little boy who is also 13 walked through the door when we were still in ICU. I don't know him well but he was at her party. He walked in with his Mom and he was carrying a balloon and a tub of Johnson's caramel corn and I burst into tears. Don't ask me why, but that made me cry. There was Nicole, hooked up to oxygen and everything else and she barely knew he was there. "Hi Blake" was all she managed to say.

The worst was when Nicole was saying things like "God, God, why? why are you doing this to me, God? What did I do to deserve this?" She was very dramatic. She also told my husband and I to go to hell and a few other things arose. Like she would get mad at me because I was sleeping while Ed was with her. It was a combination of pain, fear and medicine. We kept track of all the things she said. Now she is acting normal but just saying things like "I want my life and my life sucks." I know it will get better.

The actual surgery lasted for 6 hours. While she was in ICU, each morning the doctors and nurses make their rounds to each patient and invite the Parents to come out to discuss your child's progress regarding pain management, mobitlity, etc. They told us if we continued to increase her dose of morphine and she layed in bed all day without moving that we were setting ourselves up for pnemonia. The valium calmed her down enough so that she wasn't pushing on her pump so much. She once pushed it 54 times in one hour. I really thought she got good care there. No stone was left unturned.
They want to see us in a week.

Anyway, remember that each child deals with pain and trauma differently. Nicole used to freak out if her shoe fell off when she was a baby, so you can see what her personality type is. Today she is walking much better, using the toilet, sitting in her new chair, eating herself. As soon as she can start getting some comfort, she will feel better. She is not in the kind of pain she was in when we were in the hospital. Thanks again for being there.

[gerbo]

i suppose after this operation it really must have "hit" her what the consequences where of what she has been suffering from and how it has had an impact on her life, it was relatively easy to escape from whilst still being treated "conservatively" but now she cannot and surely it does "suck" now.

I know i do not have to tell you what to say, but i am sure you combine the aknowledgement that indeed it sucks at the moment, that you are ever so proud of hoew she is coping and you can promise her it will only get better, slowly....

the things she was saying in hospital; that was the morphine speking, surely, potent stuff you know.....

I am sure you are a strong mum for her, doing as much as you can

gerbo

[emma12]

Your stay at the hospital sounds a bit like ours, but, doesn't it feel good to be on the other side of this surgery? My daughter also had some quite dramatic moments, especially the first time they sat her up in bed, and, even worse when they pulled the nasogastric tube out (she had bled and it was stuck inside her nose). The "Oh my God, why is this happening to me, I'm going to die and I want out of this place..." breaks your heart to watch your child going through this. The first thing she said in recovery was orange juice, and then begged for it for 2 days till she was allowed to drink. By the time she was released, I was totally exhausted also. She wanted only me to spend the nights with her, not grandma or dad, only me. It was tough. It took about a week to start feeling like myself again.

We were in ICU for 24 hours, that's their normal procedure for these kids. There was 1 nurse for 2 kids, on the other floor, there was 1 nurse for 3 kids, and actually we had 2 nurses because they were cross training on different floors. We were also warned about the lung function, on the second day they told us that her lung function was diminished. She got the blowing thing and they improved. They worry you that she has to get up and move, but the first time she sat up, I couldn't imagine she would be walking within a day. However, the next day, she was walking down the hall. When she heard that's what she had to do to get out of there, she was all for it with no complaints.

Her pain was best controlled when she also had the valium, that was the only times the pain was 0 or 1. The doctor didn't want to prescribe the valium to go home with, but I insisted on it. She used it for about 2 days, then, no more.

It is just such a relief to have this behind us--I am happy to hear that your daughter is doing as well as can be expected. Hoping and praying that Nicole's recovery continues along as well as our's appears to be.

[MATJESNIC]

Thanks, Gerbo,

While my husband is still here, I have to tell you all one funny thing. Nicole wanted me to take pictures throughout her journey in the hospital because she has seen so many others do that. Even when her pain was bad, throughout her stay, she would barely mutter, "picture." which meant I should grab my camera and take a picture. There she is moaning and groaning and there I am snapping away. When she took her first walk, my husband videotaped it on his cell phone and sent it to people. Now he is going out to have the pictures developed. It's funny because so far she does remember everything including all of the insults. There was one day when all she did was complain with the words, "Oh, man." and when she got moved to her real room on Sat. and they let her have a pillow, she acted like she won the lottery. "I get a pillow, yeah!!!!"

She just woke up from a 90 minute nap and I actually saw a smile.

I know everything will be okay. Soon she will know it too. Probably won't be on til later this week. You are all so wonderful. I kept reminding her of all the children who have made it through this and she wanted to hear all of the names. After Anastasia, Jamie, Jamie, Erin, Daniel, Alexander, my mind drew a blank so my husband and I just started making up names. She was satisfied with that. Of course, I reminded her about David and Lorena who were just little kids who went through surgery. All of you have been more of a help than you know. I appreciate it so much.

[Jacque's Mom]

Melissa,
Great news you're home and Nicole had no complications. What are her curves now? Congrats to all! Take care of yourself as well, Lynn

[Sherie]

Hi Melissa

I'm glad to hear you're home and the surgery went well. I would like to talk to you too, do you still have my cell phone #?

It's sad to hear that Nicole is not taking this well, but I'm sure it's going to get better as she's feeling less pain and she learns to adjust to her new body. That whole hospital experience sounds like a nightmare, I'm really not looking forward to it but I'm glad to hear a very realistic account of what to expect.

I'm at work, would like to write more but I don't have time now.
Take care and sending my hugs your way

[amandap]

Hi Melissa,

I'm glad you guys are home and that the procedure itself was successful. I can only imagine how horrible Nicole must feel but each day slow as it may be will be a better day for her and her pain will eventually be completely gone.

Now that your home I'm sure there Nicole's recovery will go much smoother and quicker and soon there will be a turnining point where Nicole will start to see things with a better attitude.

You guys are in our prayers ~

Amanda

[cherylplinder]

Hugs again today!!!!!!!!!!!((((HUGS))))

[mariaf]

Melissa,

I'm so glad Nicole is home and starting to feel a little better. You know that she'll improve a little each day, until she's back to being a normal teen again (bet you never thought you'd wish for that - LOL!)

You and Ed did a great job of recording her journey through photos and video and your e-mails were very descriptive as well. You made me laugh sometimes with things you said - and you made me feel like crying at other times.

Please keep us posted. I can't wait to hear how well she's doing in a couple of short weeks!

Hugs,

[Carmell]

Sending continued smooth and speedy recovery vibes to Nicole. I know how nasty the medications can make you feel. Braydon even knows he's being frustrated and on edge from them. It's so hard to watch him be so tense and keyed up, and in tears, apologizing because he's being snappy. That makes the recovery that much harder on everyone. I hope Nicole continues to work her way back to a full and active life. I know she will, probably sooner than she realizes. Great job everyone.

[OliviasMom]

Thank you to all of you brave parents who have shared your childrens' stories here. It has helped me immensely over the last few months coming to terms with my 12-year-old daughter's upcoming surgery on Oct. 1 (T3-T12 or L1).

While I don't post much, as I read the postings, your kids (and you) have been in my heart. The information you have passed on is invaluable. It's been a source of comfort to hear the successes that seem to come with each day, and it's good to know what to expect at the various stages of this "journey." I really don't know how I would have coped without it. Many, many thanks.

Susan