I've heard from Susannajon [Archive] - National Scoliosis Foundation Forums

jc3

03-09-2005, 05:56 PM

i will definitely tell her that you all send your wishes for a smooth recovery. I'll post after i see them.
i know how you all are feeling before your childrens surgeries. I don't know what was harder the waiting before or the actual recovery, but yes the first two weeks are the hardest, but by about 3 1/2 weeks it was unbelievably better. I probably said this once before and i'll say it again because i can't remember who told me this after the surgery, but it was so true - that you can't judge the recovery process everyday, it's from one week to another that you see the most progress, you can't see much of a difference each day, but when you look back week to week it is incredible.
nikki and theresa hang in there it will be over soon. I'm sure it feels like the day will never get here already.
jennifer

susannajon

03-09-2005, 07:05 PM

Hi all, I've just stepped out of the recovery room for a few minutes. Grace is sleeping, thankfully. What a long day! The surgery lasted about 4 1/2 hours. Everything went according to plan: anterior surgery, fusing her T11 to L3. He thinks he was able to correct her to about 15% so we're thrilled.

When she first woke up it was awful. She was in agony and it felt like
forever before they got her PCA hooked up. She kept saying she couldn't
breathe and begging us to turn her on her side. It was breaking my heart.

Once the drugs kicked in, she was much better. I wish I could remember who
told me to bring her favorite stuffed animal, because she totally lighted up
when she saw that silly little stuffed dog. She's had it clutched to her
chest ever since. We also hooked her up to her I-Pod and put on some music.

She says she's feeling so much better, and she's even cracked a couple of
jokes, so I'm feeling huge relief right now.

She has a tube through her side to drain the fluid and keep the lung
inflated, and they took an x-ray to make sure the tube is in the right spot.
I got to see it, and I could see her spine, and wow! The back looks so
straight! It's really amazing. I was shocked at how big those screws
looked. They seem huge! I don't know what I was expecting...

Anyhow thanks to everyone for the advice, the thoughts and the prayers. It all worked!!

Susanna

blairf83

03-09-2005, 08:53 PM

Good to hear it went well!
It's such a shock to see those screws for the first time. I didn't see my xrays until my 2 week checkup... I don't know what I was expecting either... Maybe something small and delicate, seeing as it was my SPINE they were messing with... LOL... I could only look at my x-rays by looking at their reflection in the mirror accross the room... Silly, eh?
You both are in my thoughts!

nikyergen

03-10-2005, 02:55 AM

Sussana,
I was so glad to hear Grace's surgery went so well. We are still praying for you. We are all getting edgy at our house. Wanting Tuesday to hurry up and get here. We'll survive though.

We'll let you know how Crystal's surgery went.

You made it, and seem to survive this far. I sure hope I do. I am getting pretty grouchy due to the lack of sleep.

We're praying.

'til later,
Nikki

scoliosis-mom

03-10-2005, 08:19 AM

Susanna,

That's just wonderful about Grace's surgery.

She's cracking a couple of jokes on the first day - amazing!!!!

The worst is over now and she can focus on getting better :)

God bless your daughter and your family - we all knew she'd be fine.

4 1/2 hours - that's terrific, too!

Let us know how she's feeling.

Regards,

Susan

susannajon

03-10-2005, 03:46 PM

Hi everyone,

Well last night was awful, and I am so glad it's behind us. My daughter was miserable and unable to sleep. She was tachy with a heart rate around 135 and spiked a fever of 101. I know this stuff is pretty typical, but it doesn't make it any easier. Also, the stuff that was numb before started to wake up so she was really hurting. I finally went back to my room for a shower and something to eat around 10:00 and I fell asleep for a little while. Unfortunately, I missed Jennifer, her husband, and Nicole who had come to visit us.I am so disappointed, but maybe another time.

My daughter is better today. She was able to sit up for a little while, and I the hospital brought her a computer and she's happily chatting online with her friends.

Jen, you'll have to send me a picture of you guys so I can put a face with the name. My husband, Jon, said that Nicole looked fantastic, and it was really good for him to see her so healthy and happy 4 months after surgery.

Thanks again to everyone for your kind thoughts.

Susanna

nikyergen

03-10-2005, 06:35 PM

Susanna,
I am sure glad Grace's surgery went well. I am becoming a little more at ease today. I think just getting closer to Tuesday is helping. Crystal seems better today too.

I hope Grace has a better night tonight. I am not looking forward to having Crystal hurt after surgery. But, hopefully, it will only be temporary. Should be anyway.

Well, I need to go feed cows and then come in and feed the family. That's all I do some days, is feed some sort of hungry beast.

I will be looking for your posts.

We're praying.

'til later,
Nikki

jc3

03-10-2005, 10:18 PM

hi susanna
i am so sorry that we missed you also, but i'm glad you were able to get some much needed rest. It sounds like you had a rough night. I hope tonight is better. Like i said though it was great to meet your husband, he was so nice and we got to meet the girl next door to you guys. She was awake and and was so sweet. Grace was sleeping peacefully when we got there and i got to peak in on her. Her braids looked adorable!! I hope the gift we brought gave her a little smile for a minute and in with the gift we put some lotion and a chap stick (nicole's idea) her lips were so dry all the time, we used chapstick alot and someone brought us lotion while we were there and nicole used it.
It sounds like she is doing much better today. I can't believe she sat up and went on the computer. Nicole didn't go on the computer for days and screamed everytime she had to sit up, so she sounds like she is doing really good!
I will try and find a picture of us, so you can put a face on these e-mails. Keep in touch and update me on her.
Jennifer

susannajon

03-11-2005, 02:22 PM

Hi Jennifer. Yesterday, she sat up just long enought to dangle her legs. I brought the computer in after, and she lay back down and propped the keyboard in her lap and chatted online for a while. She did it for too long, though, and tired herself out. Last night was really bad again, but pain management came this morning and adjusted her meds and she's doing much better.

Today, she sat up again, and took a couple of steps. She was really dizzy, but she did fine. My little one is a tough cookie, stronger than I give her credit for. We showed her the x-rays today and she was really excited. It makes it all worthwhile.

Susanna

jc3

03-11-2005, 02:27 PM

hi susanna
sorry she had another bad night. Well now that pain management came maybe tonight will be better. How did she do walking?? That was the hardest part with nicole. She would scream. I was so embarrased, but they said they are used to it with the scoli patients, thank goodness when we were the the floor was pretty empty. Everytime p/t would make her sit or walk they would have me leave because she would yell louder when i was around. it was horrible and heartwrenching seeing her scream and cry for me to make them stop making her do it. How are you and your husband holding up? Did you sleep on the chair bed yet??
keep posting on what's going on
jennifer

scoliosis-mom

03-12-2005, 07:16 AM

Susanna is right - our girls our tough little cookies!

As hard as the first week after surgery is, they do get through it.

I found that if my daughter just moved a bit more each day, it really helped her mental state. And, by the time she could walk around the ward, it helped with the "stiffening" they get laying in bed so long.

Your daughter may have another tough day - sometimes their body takes a small step back before improving.

My daughter, who was 16, was arguing with the interns that came in every morning and basically telling them to "go away and come back later". She threw some teenagers out of her room who were getting community service hours coming around cheering up the kids. I knew she was getting well because she was feisty.

But, she liked the nurses and even tolerated the little chest pounding they did to clear up fluid from the long anesthesia (12 hours). It got to the point that I had to leave the room every time they showed up to do that. You have to keep it together and be positive. The kids are looking to us to see how they're doing.

It's very hard to watch your child in pain, but she really doesn't remember the worst of it from that first week.

Susanna - we're thinking of you guys! Post again when you have time.

Susan :)

nikyergen

03-12-2005, 09:23 AM

Susan, Jennifer, Susanna, Theresa,
Not sure if I am looking forward to the first few days after surgery. Sounds pretty tough to me. I am going to be praying a lot to get us through it. I just hope Crystal will "Cowboy Up" and want to get moving and get home. She usually has that "Cowboy Up" mentality. I've seen a colt dust her hard, and she has gotten right back on in tears and had that colt do what mad him mad in the first place.

I don't think I could do what these kids do. They are so tough. I am just a weenie when it come to pain. I even hate going to the dentist, because I can't stand their shots when they have to work on your teeth.

Susanna, Let us know how your day with Grace was. We are certainly praying for you everyday.

'til later,
Nikki

susannajon

03-13-2005, 10:55 AM

Hi Everyone,

It's day 5, and I thought I would update you on my daughter's recovery. Yesterday was a great day. The chest tube came out, she was able to start on ice chips and a little water, and she's starting to be a little bit feisty and more of her normal self. The PT folks got her up and she took a few steps. She had a visit from one of her best childhood friends who lives in New York now, and she was able to stay awake for more than an hour and chat. She was pretty wiped out last night, and today has been pretty rough, but that's to be expected at this stage of the game. She's transitioning from the pain pump to Vicoden, and she's been having some issues with the Vicoden making her feel wierd. Her stomach has been a little queasie and this morning she said she felt like she couldn't catch her breathe and we put her O2 back on. All in all, though, she so much better, and we feel like we're over the hump.

Thanks to everyone for the thoughts and prayers. We will most likely be here 'till Wednesday, if she continues to do this well.

nicoles mom

03-13-2005, 12:39 PM

Susanna
So Glad To Hear Grace Is Doing So Well. We Go In 16 Days. I'm So Greatful For Your Posts. Now I Will Know What To Expect Some What. Hopefully My Nicole Does Just As Well As Grace. Wishing You All The Best In The Days Ahead.
Theresa

susannajon

03-13-2005, 01:36 PM

Hi Theresa, I won't lie, the first few days are grim and exhausting, but we saw a boy today who's curve and surgery were identical to our daughter's. He is going home on day 6. He was walking unassisted, smiling and cracking jokes, and it made us feel so much better. Turns out our daughter was miserable this morning because her intestines were waking up (UGGG) but after a suppository things started working, and within a couple of hours she was resting comfortably and doing much better. It's two steps forward, one step back. You will get throught this! In the end it's all worth it.

Lura

03-13-2005, 01:39 PM

Hi Susanna,

My name is Lura. I just found this site Friday night and posted that I have a son (Alex) with Down syndrome. His surgery is the 29th in Spokane, WA. I am encouraged by your posting around your daughters surgery! Still scared, but feeling less alone. I will pray for continued comfort for both of you.

Lura

jc3

03-13-2005, 07:35 PM

hi susanna
glad to hear things are moving along. How are you holding up? I cannot believe it is 5 days already. Wow, before you know it you'll be heading home. Have you seen the girl next door? The one i went to visit as well, i think her name is Chava. I hope she is doing okay also.
we're here still thinking of you guys and keep updating us
jennifer

susannajon

03-13-2005, 08:09 PM

Lura, Thanks for your message. My thoughts and prayers are with you.

Jennifer, We are actually roomies with Hava and her mom Debbie. Both of the girls are right on target. Hava was Boachie's second case on Wednesday, so the girls are about 7 hours apart in their recovery. The same curve, the same exact procedure and instrumentation. Pretty ironic, huh? Debbie says hello, by the way.

It pretty funny because we can almost predict what Hava will do based on what Grace is doing 7 hours earlier. Anyhow, thanks for your continued support, and I'll keep you guys in the loop.

ANIMAL LOVER12

03-13-2005, 09:07 PM

I'm glad to hear that they are both doing well. I communicate with Chava on another message board. I'm glad to hear their recoveries are going well.

Mary Lou

03-14-2005, 06:46 AM

I'm glad things are going well for all of you.

Susanna,

Is the Vicoden controlling the pain? Vicoden didn't take care of Jamie's pain and she was switched to Percoset (?) and did fine with it. Also, the fact that she hasn't really eaten anything yet, could have something to do with the upset stomach. Once she is allowed to eat, maybe she could eat a few crackers when taking her meds. Jamie's oxygen levels kept dropping and we almost put her back on oxygen. We found that if she sat up her stats came right back up.

Take care,
Mary Lou

jc3

03-14-2005, 08:21 AM

hi susanna
glad to hear things are going well. That is great that chava is your roommate. That is good to be able to compare notes. When we were there it was very empty and i wished i had someone in the same boat as me to talk to. How are the nurses and the hospital?? Did you have a nurse "richard"? He was our nurse most of the time, except when he left at night. He was good to us.
well keep the updates coming
jennifer

susannajon

03-14-2005, 12:43 PM

Hi guys,

We're having a good day. Both our kids were switch to Percocet and seem to be doing very well. No more problems with itching or nausea. My daughter is eating soup, rice crispies, and the like. Chava is still on clears. Debbie ordered fruit smoothies for the kids to try this afternoon.

Jennifer, Richard was our nurse Friday, Saturday, and Sunday, and he is a wonderful caring person, and we feel so lucky to have had his care. We also had good experiences with Shanaz and Erika.

Susanna :)

jc3

03-14-2005, 01:40 PM

glad to hear it's a good day and i'm sure from here on in, it's uphill from here. That is great that she is able to eat something! She's on her way now. Richard was the best. I even took some pictures of nicole and richard. He had a great sense of humor too. He was one of our favorites.
well thanks for keeping me updated on the girls!
Jennifer

susannajon

03-14-2005, 05:55 PM

Jennifer,

Dr. Boachie came by tonight and took a walk with the girls. It was the cutest thing. He cleared them both to go home tomorrow!

Yes, I promised Richard we would stop by and see him when we come back for her check up. We just loved him too.

Susanna

nicoles mom

03-14-2005, 06:59 PM

Susanna
So Good To Hear Your Going Home And Grace Is Doing Well.that Does Sound Cute. He Has A Great Bedside Matter.
Theresa

susannajon

03-14-2005, 09:38 PM

He brought his whole team, and it was so endearing. He took each of the girls for a spin down the hall and around the nurses station, and the surgical team followed behind like puppies at the feet of mama dog. He talked to each girl about what thay could expect over the next couple of weeks, and what he expected of the girls for them to heal properly. It was great.

jc3

03-14-2005, 09:40 PM

that is so nice that he did that. He didn't take nicole for a walk :(
Tell me what he said about what to expect and what he expected of them to heal properly. I'm curious.
thanks and i'm so glad that everything went well !

susannajon

03-14-2005, 09:59 PM

Hi Jennifer,

I just found out that Chava chats with Nicole on spinekids! Isn't that funny? He told our girls to walk a little every day (but no marathons). He just reminded them to avoid twisting or bending, reminded them to lift no more than 5-8 lbs, and to lay off NSAIDs. He said to take their pain meds if they needed them, with the goal to be off of the meds by the 4 week check up. That's about it. He also encouraged them about how well they were doing, and how proud he was of their progress. It was very encouraging for both of them. I'm sure he would have done the same for your Nicole if he'd had the time before she went home.

Susanna

jc3

03-14-2005, 10:06 PM

That is so great that the chava and your daughter had each other to go through this together and i'm sure they will keep in contact with each other after this. It is something they'll both never forget and they did it together. It is funny how they are both recovering the same also. I think that is so great. Wait, what is NSAIDS??
It's funny because when we left the hospital and went for our 3 1/2 wk check up they said no bending, lifting, twisting then at the 4 month check it seemed like he was surprised that she never bent over. She did it there for the first time.
well, anyway, so glad to hear your going home. Write me from home when you get a chance. I'm sure tomorrow at home will be a little bit of an adjustment for her. Just find a comfy spot for her, you're the one who helped me with nicole when she got home.
jennifer

nikyergen

03-15-2005, 12:43 AM

Hello there,
Sure glad to hear the girls are doing so well. It is encouraging to me. Crystal was admitted this afternoon, with surgery at 7:30am in the morning. I am shaking like a leaf, but am very comfortable with things. The staff here are wonderful. And I thank all of you for your words of encouragement.

Give the girls lots of hugs for us. They are in our prayers as they continue to recover from their surgeries.

'til later,
Nikki

Mary Lou

03-15-2005, 05:24 AM

Susanna,

I'm go glad things are going well for both girls. Remember: pain meds must be taken before leaving the hospital so the ride home will be more bearable! I think it is great the girls have someone to recover with. As for the restrictions, they sound like what Jamie's were at discharge.

Tell the girls to keep up the good work!

Mary Lou

susannajon

03-15-2005, 06:40 PM

Hi Mary Lou,

We made it home just fine. We stole a couple of pillows from the hospital and put them on the front seat. We gave her the pain meds about an hour before we left to make the wheelchair ride bearable, and I just drove very carefully, looking out for pot holes and such. She snoozed most of the way, and it wasn't so bad. It feels so good to be home!!!

Jennifer,

My little one climbed right into her own bed, curled up with her "Comfort-U" body pillow and was out like a light. She tougher than I was after major surgery, let me tell you! I only had a 5 minute ride home from the hospital after my surgery and I was a basket case! NSAIDs are non-steroidal anti-inflammatory (ibuprofen, Motrin, Advil, Nuprin, naproxen, Excedrin, Motrin Sinus, Pamprin, aspirin, anything other than Tylenol (Acetaminophen). Basically they can take tylenol or narcotics for pain. The rest of it should wait for their fusion to be solid.

Nikki, I wish I could be there to hold your hand, but please know I am with you in spirit. I am sure everything will go well, as you are in the best of hands. Please feel comfortable asking any question, no matter how personal, over the next few weeks. PM if you need me for anything. I am here for you.

Susanna

jc3

03-15-2005, 08:20 PM

hi susanna
so glad you guys made it home safe and sound. She is a trooper! I cant' believe it's all over. That is great that she went in her own bed and i told my husband you guys were coming home and i was wrong about my nicole being there 7 days it was 8. What a difference. I'm sure it feels so good to be home and now being on the other side to be able to give support about others going into surgery and what to expect.
Keep in touch
Jennifer

nikyergen

03-15-2005, 08:59 PM

Susanna,
Glad you guys got home okay. The recovery will get better every day, at least thats what everyone here is telling me. I will keep you in our prayers.

I am just going to do one post on the Getting Ready for Surgery post. I am going to try to get a nap.

'til later,
Nikki

nicoles mom

03-15-2005, 11:32 PM

Wow your home thats great :D . Theirs nothing like your owe bed to recover in. Hopefully Nicoles surgery goes just as well. Anything I should know before we go. Did you shower in the room. Where did you eat I heard you can order in. My husband is going to stay two nights at the helmsley medical tower. The cost was a lot less then the belair. Than he will go back and forth from home. It's about 100 miles roundtrip. So glad to hear things want well.
Thanks for sharing your experience.
Theresa

jc3

03-16-2005, 07:13 AM

hi theresa
my daughter had surgery at hospital for special surgery a few months ago. We were there for 8 days and yes, i was able to shower in the room and for eating there was a deli right on the corner, so when nicole was sleeping i would tell the nurses i'll be right back and take a walk there, which the fresh air felt good anyway and it was good to get a little break. Towards the end, when we were feeling like it was starting to feel like home there the nurses gave me their book on menus and we ordered chinese food and they delivered it to us.
Jennifer

nicoles mom

03-16-2005, 06:52 PM

Thanks Jennifer
We did one of are last tests today.
We go on the 24th to see Dr. Boachie
Then we also need to see Pediatrics on the 5th floor.
When you went to Pediatrics the week before surgery what did they do????
Thanks Theresa

susannajon

03-16-2005, 08:27 PM

Hi theresa,

When we went for our pre-op, we had done a lot of the tests already, so they just reviewed the results, examined her, took blood and urine, and discussed what we'd need to do to prepare for surgery. It was not a big deal. We had already done the echo-cardiogram, EKG, MRIs, pulminary testing, and blood donation in our home town, and had the results sent to the hospital.

I have a list of things you should have for the hospital, and things for home. Let me know if you want me to send it to you.

Susanna

jc3

03-16-2005, 08:39 PM

hi theresa
good luck with pre-op next week. I think susanna covered everything you'll be doing there. It's just a long boring time with lots of waiting around. Tell your daughter nothing is painful, except she probably won't like when they have to do a blood test, but if she gave blood she shouldn't mind at all.
susanna,
did she need any blood during surgery? Just curious?
jennifer

susannajon

03-16-2005, 08:59 PM

Jennifer, Boachie used the cell saver to recycle her blood, however she did use the unit she had donated as well. My daughter had anterior surgery, where they go through the side and collapse the lung, so maybe that's why she had more blood loss?

Susanna

nicoles mom

03-16-2005, 09:27 PM

Susanna
I would love to see the list.I spoke to the Dr. Boachies nurse to see if my Nicole needed a shower seat raise toliet seat and she said no. I was thinking this would make her more comfortable. My dads wife {Stepmom} gave me a toliet seat Its was my Dads he never used it. Nicole was a little freak about it he recently passed away anyway. I have that if she needs it. Hope Grace is feeling well sounds as if your all glad to be home best place to be. We did most of the tests here on long island also. So I guess it will be the same stuff you did.
Jennifer
I don't think the blood in going to bug her. Peeing in the cup is something shes going to freak out about. She never did this I was telling her the other day about it she says thats gross. O boy this is why I'm so worried she has no clue about the hospital.But I guess I will deal with that when it happens. We have to be there at 9:00 am. I just hope were home by 5:00 my Nicole best friends mom is having a party/sleepover with all 6 of her closer friends.
I Thank you both for being here for me.
Theresa

jc3

03-16-2005, 10:01 PM

susanna
i think i heard they do loose more blood with that type of surgery. How does the scar look? Did you have to go down before you left the hospital for an x-ray? They had us go down before we left and they practically forgot about us down there and left nicole sitting in the wheelchair for so long, i was so mad and then her drain started bleeding, it was horrible. Is she allowed to shower yet?
Jennifer

jc3

03-16-2005, 10:09 PM

theresa
i don't know about anybody else, but we definitely needed the toilet seat for at home. I don't care what boachie's nurse says that was a must for us at first. The shower seat we had, but nicole didn't use it. We didn't have the toilet seat, we didn't really think we would need one until we got home with her and it was painful for her to sit, my husband ran out and got a good one and it was great. You should definitely be home by 5:00.
let us know how it goes
jennifer

susannajon

03-17-2005, 08:44 AM

Jennifer,

The scar is really long but it's pretty thin and well hidden by the shadow of her arm. I think it will be barely noticeable. I just sent you before and after pics by e-mail. Let me know that you got the message and were able to see the pics. Pretty amazing! We did go down for an x-ray before we left. The tech left us down there, and I didn't wait for them to come back. My daughter was so wiped out and her pain meds were wearing off, so I wheeled her back to her room and got her back in bed.

Theresa, These are the "must haves" for your homecoming:

1) A raised toilet seat with arms so she can get up and down by herself
2) A shower seat
3) A reclining chair, preferably a light one that can be moved easily. LaFuma Zero Gravity Recliners are perfect, and they only cost about $150. We used a couple of pillows to make the seat and back softer.
4) Rent a hospital style table that can swing over the bed or chair (about $25 per month through a medical supply place)
5) A "grabber" arm, so she can pick small things up off the floor if she drops them.
6) Pillows, especially body pillows for bed. My daughter loves this thing called a "Comfort-U" pillow. It's a super long U shaped body pillow, and it is much easier than several smaller pillows that have to be rearranged. I bought it online. I weent to "froogle" and found the best price and a place that shipped free. I bought the fleece pillow case for it too.
7) cups with lids and straws
8) socks with sticky bumps on the bottom

Susanna

Mary Lou

03-17-2005, 11:17 AM

Susanna,

Glad things are still going well. As for the blood loss during surgery, I don't have any info. as to whether one type of surgery is more likely to cause bleeding or not. Jamie donated two units of blood and she needed both units in the O.R. and she had posterior only. She did well after surgery and didn't need any more blood.

nicoles mom

03-17-2005, 06:37 PM

Susanna
Thanks for the list I just need a chair. Did you have a list what to bring to the hospital too. I would love to see this list also. Thank you for sharing.
Theresa

Mary Lou

03-18-2005, 05:36 AM

Theresa,

This may seem odd, but Jamie's chair of choice was a high backed hard rocking chair with pillows behind her back. She said the high back supported not only her back but also her neck. Three months later, this is still her chair of choice. She sits on the couch or in the Lazy Boy recliner, but like the high/hard back better.

As for the preparations for her when she came home from the hospital, we made very few adjustments for her. We already had the chair. We brought her bed downstairs so she wouldn't be have to be upstairs and away from the family activities. We already had a shower with a built-in seat, so that helped for the first week or so. She was told in the hospital to bend ONLY at her knees, no turning, twisting or bending at the hips or any part of her back, so she learned pretty quickly how to pick things up from the floor by bending at the knees.

We took very little to the hospital. We took t-shirts and pj bottoms which Jamie wore as soon as the catheter came out. She didn't look at the magazines we took at all. Didn't even ask to play video games which they had at the hospital. Slippers with good non-slip soles are a must! Personal items such as toothbrush, hair brush, something to pull her hair back, lotion etc. Other than that, we really didn't take/need too much.

Mary Lou

susannajon

03-18-2005, 10:03 AM

Mary Lou,

That doesn't sound wierd at all. The LaFuma recliner is actually quite firm. It's meant for use as a deck chair, and we put two bed pillows on it to ease the pressure points, but it still provides firm support.

Theresa,

Here's some of the things you might want for the hospital:

1) A comfort item from home, like a stuffed animal. She might think she's too big, but trust me, it will be immensely comforting when she first wakes up from surgery.

2) Your daughter's basic toiletries (deodorant, tooth paste, tooth brush, soap, shampoo, conditioner, face wipes, acne cream, hair brush, covered elastic bands).

3) Some water free soap, like Cetaphil

4) Gold Bond body lotion to banish the pain med itchies

5) A small bottle of mineral oil to help get off the tape adhesive (she'll have patches of adhesive all over her from all the bandaids, tubes, IV's etc.)

6) Little tube of A&D ointment for her bottom (she's going to be quite sore after that first BM.) Also, a little tube of antibiotic cream to dab on old IV holes and such.

7) If her hair is long, put it in two braids, and try to brush it out every day and rebraid it. If it's short, get it cut even shorter right before surgery, because she's going to get a big rats nest on the back of her head if not.

8) Slipper socks with sticky bumps on the bottom.

9) Portable music (an I-pod, radio, or CD player with headphones).

10) DVD's which you can play in the computer (they'll bring you a PC to use in the room. Good distraction for mom too!)

11) A couple of mushy pillows from home (comforting and familiar). My daughter loves those bead filled bright colored pillows you can get at the department stores.

12) The hospital will give you these lemon glycerin swabs to wipe her mouth. Don't use them, they feel good for a minute, but then they make her mouth feel sticky. Wet a paper towel, and let her wipe her lips and tongue and suck on it a little. It's enough moisture to make her mouth feel better, and wet her mouth and throat a little, but not so much water it will hurt her.

13) Feminine supplies (even if she just got her period, she'll get it again. This always happens to women after surgery). You will probably want to warn your daughter to expect this, so she will be mentally prepared.

14) Soft loose PJ's for after the catheter comes out

That's all I can think of at the moment...

Susanna

nicoles mom

03-18-2005, 04:25 PM

Thank You Thank You So Very Much. I Brought Huggies Washcloths To Sponge Her Down {very Soft}. My Sister Uses They On Her Babies When She Travels. Half Of Those Things I Would Of Never Though Of. I Was Thinking About Her Period. Nicole Hasn't Gotton Her Period Yet But Any Day Now And I Bet It Will Be The Day Of Surgery Which Is Going To Be A Little Problem. But We Will Deal With That.
Thanks Susanna Great List
Theresa

susannajon

03-18-2005, 05:16 PM

:( She'll probably get it day three or four. Just be sure to warn her. Poor little thing! It's just adding insult to injury.

My daughter was 11 1/2 when she had it for the first time. I tried to make it a special rite of passage. We had a girls day out to celebrate her womanhood. We went out lunch just the two of us and got a manicure and pedicure. I hope it waits to come until after you guys get home from the hospital, but if not, maybe you guys can make plans for a special girls day when she's well enough to enjoy it!

Susanna

nicoles mom

03-18-2005, 06:41 PM

Boy Do We Think A like. Its So Funny Because I Told Her That When She Becomes A Woman That We Would Do Something Special. I Hope It Waits To Come I Was Telling My Husband That I Pray She Doesn't Get It. But We Can Have Are Special Something When She Feeling Better. My Poor Baby I Still Can Get That Sick Feeling Out Of My Stomach. As I Read Your Expereince In The Hospital And Nikkis Too I Was Starting To Feel Better. But Today I'm Going Crazy Again. I'm Looking For A Chair For Her. In My Living Room I Have A 2 Love Seats. In My Den A Big Old Leather U Shaped Couch. Hard Wood Kitchen Chairs A Computer Chair. I Was Looking At The Lafuma Chairs Is Grace Using Hers. I Was Thinking Of Buying An Lazy Boy Type Recliner. I Also Have A Rocking Chair You Know The Glider One Baby Shower Gift From Dad When My Nicole Was Born. We Are Bringing Her Bedroom Down Stairs. My Husband Make A Platform For The Mattress. Her Bed Frame Is Too High Mattress Is New 18" Thick. Well Anyone Susanna Thanks For The List Again And Let Me Know About How Grace Likes The Chair. Nicole Is Having Posteir Fusion I Don't Know If That Make A Different With The Tpye Of Chair You Use. I Think My Glider Moves To Much Getting Into It.
Theresa

susannajon

03-18-2005, 07:32 PM

Theresa,

My daughter is loving the LaFuma chair. She's pratically living in it now. She's using the padded computer chair to eat dinner with us at the table, but every other waking moment she's sitting in the LaFuma because it's easy on her back, and easy for her to adjust the angle and sit back if she needs it. It's a light comfortable option, and it's really portable and we can move it easily from room to room if needed.

Our place is all on one level, so she's sleeping in her own bed... I don't know how posterior surgery will differ as far as pain. I would suggest an egg crate, or a memory foam mattress topper to reduce her pressure points on the bed. Maybe get one for the bed, and a twin topper to use in her chair.

Susanna

nicoles mom

03-18-2005, 10:43 PM

Ok I Think I'm Going For The Chair.i Have The Memory Form. I Like That I Can Take It From Room To Room. Theresa

Mary Lou

03-19-2005, 07:20 AM

I agree with Susanna, get an egg crate. We had one on Jamie's bed before surgery and she still uses it to this day. If your daughter uses the rocking/glider chair at all, make sure someone holds it from moving in the beginning for her and always make sure she uses the arm rests to hold onto. Anterior/posterior surgery. I don't think that will make much difference. Your daughter will still have some pain. If she were having both, I would say there might be more pain if she were to lay on the side where the incision is located. As for the menstrual issue, I would plan on her getting it while in the hospital. No one told us to expect this before surgery but we had thought about it. We figured since Jamie had just had hers, that was something we wouldn't have to deal with. Wrong. She got within two or three days of surgery.

Mary Lou

susannajon

03-19-2005, 12:20 PM

Here I go with my ad again :D . I swear I don't work for these people, but the best price on LaFuma is comfortchannel.com. They're awesome.

Susanna

nicoles mom

03-19-2005, 01:27 PM

hi mary lu and susanna
I guess I will ask the doctor this but just wanding if she does get her period this would be her first time. Does it mean she will have it from than on. Or is it because of her age and having signs of getting it any day.
Theresa
ps I order the chair I hope see likes it.

susannajon

03-19-2005, 01:56 PM

Hi Theresa,

Periods can be really irregular in young girls, so there's no telling whether if she gets in in the hospital it will be regular after that. I hope she's spared, but just be sure to talk it over with her so she's prepared. Otherwise she might be very frightened if she sees blood. She might think there's something wrong, or her incision has opened or something. It's a little scary for most kids anyway without being in the hospital.

The nurses made us a nice heating pad that could be popped in the micro, so keep that in mind if she gets crampy.

Susanna

nicoles mom

03-19-2005, 04:06 PM

thanks susanna
She knows all about it. shes the only one left to get it. All her friends have started they periods. She feels left out I told her it will happen. She thinks the day of surgery it will come so thank god shes perpared for that. Doesn't mean she'll be happy about it but one never knows.
Theresa

susannajon

03-19-2005, 05:00 PM

Hey, as long as she knows what it is she'll probably be excited, since she's the last one to get it. Maybe she'll think of it as one good thing to come out of the whole surgery experience. My best friend was 17 before she got it for the first time, and she was starting to think it would never happen!

Susanna

jc3

03-22-2005, 10:30 PM

hi everyone
i was trying to get on the site this morning and it was down for some reason, but i am glad it is working now.
Susanna,
how is grace doing?? I can't believe it's two weeks already. It sounds like she is doing really good.
Everyone told me that nicole would probably get her period after the surgery and i was shocked that she didn't at all. I think most kids do.
Get this - Nicole asked me tonight if i could call the dr. tomorrow because she wants to go bowling tomorrow night w/her friends. She said the dr. said she could hold 10 lbs. Even if the dr. said she could i still do not want her to bowl! I am not taking any chances with anything.
Oh, how is that memory foam i want to get that for nicole. She still doesn't like to sleep in her bed, she says it's too hard.
jennifer

Risa

03-22-2005, 11:53 PM

Dear Susannajon,
I'm new at this site just wanted to say I'm glad your daughter is doing well.
God Bless Risa

susannajon

03-23-2005, 08:28 AM

Hi Risa, Thank you so much for your kind words!

Hi Jennifer, Memory foam is awesome and I bet a nice thick topper will really help Nicole get back in her own bed. My daughter says her bed felt "too flat" before we put the topper on the bed. She seems to be resting much more comfortably with it.

As far as the bowling, there's no way I'd let her bowl. Too much bending and twisting with a heavy weight in her hands. Maybe she can go along as a cheerleader?

Susanna

Mary Lou

03-23-2005, 12:07 PM

Jennifer,

I know where you are coming from completely with the bowling issue! As you know Jamie is one month behind Nicole (and much more restricted by her doctor) and she is really minding her restrictions right now and we are stuck with them until at least June! She would like to ride her bike (we assume she isn't allowed) but I would worry that she would hit a patch of stones left over from the last snow we had and slip and then who knows. Do you think Nicole would go along and just hang out with her friends? I'm finding that Jamie would rather stay home than go along and just watch.

Have you noticed that Nicole has sort of "outgrown" some of her friends since her surgery? Jamie's maturity level has sky-rocketed since her diagnosis and surgery, that she now finds her friends are very trivial. She still hangs out with the same friends, but she just doesn't relate to them very well anymore. She comes home from school and says about the typical teen things they complain about and she just shakes her head, like, if only they had a clue what really is important in life.

Mary Lou

jc3

03-23-2005, 04:59 PM

hi susanna
there was no way i was letting nicole bowl even if the dr said she could, but i didn't even call him and ask. She doesn't mind not bowling though, she'll just hang out. I have been in every store looking for the memory foam and cannot find it in a twin size, everywhere only has king and queen. I am going to have to order it online. Where did you get yours? Was it online? What do you do for grace's check ups? Do you have to go all the way back to the city?
Jennifer

jc3

03-23-2005, 06:23 PM

hi marylou
I definitely agree that they do mature after what they've been through and their friends just don't understand what they've really been through. Nicole doesn't mind about not bowling, she'll go anyway and just hang out. Maybe Jamie feels like she'd rather stay home if it is something that she can't do that her friends can do. I can understand that. About their restrictions, I can't imagine not being a wreck after that 1 year mark when they are allowed basically to do anything they want. When she allowed to play gym next year i will be scared that she will get hit in the back with a ball or something, especially i hear alot of these kids play basketball, what if they got hit in the back with a basketball. I'm sure summer will be hard with playing around in the pool and stuff. I'll be scared she'll get kicked in the back or someone will jump in the pool on her back. The worry never ends. Some of these kids who had surgery drive, forget it i'd be so scared of an accident.
jennifer

susannajon

03-23-2005, 07:32 PM

Hi Jennifer,

I got ours at:

http://www.comfortchannel.com/prod.itml/icOid/900,

This place is totally awesome... good prices, free shipping, and great customer service. We've bought a bunch of stuff from them.

Susanna

susannajon

03-28-2005, 04:04 PM

Hi everyone, just thought I'd post a brief update. My daughter is 19 days post-op. She is still experiencing lots of pain, but it gets better every day. I have noticed that she often will have a very good day followed by a not so good day. She needs pain meds every 4 hours around the clock. She is now able to tolerate about two hours sitting up in a chair, and is able to take brief walks. She spends most of her day in the recliner. Her concentration is better, and she is reading, playing video games, and doing a little homework. The steristrips are off and her incision looks very good. She doesn't have some of the sensitivity issues along the incision that some of the other kids have suffered from. She does have some areas that are numb, such as next to her incision, as well as a spot at the base of her spine, and one just below her belly button. She has one spot on her leg that concerns me a little, because she says she feels a little pain and numbness, but it appears to be fading. Her ribs are bothering her more than anything else. The shoulder and neck pain that was giving her fits the first couple of weeks seems to have pretty much gone away. All in all, she's doing great!

Mary Lou

03-28-2005, 05:30 PM

Susanna,

I was just thinking about sending you an e-mail. Sounds like everything is going according to schedule with your daughter. I'm so glad the steri-strips are gone. They were a big issue with Jamie-I had to remove them because they were still on at about seven weeks! Since the incision is well healed, has she taken a shower yet? If so, how did it go? The first few are the hardest, but like everything thing else, it gets better with time. As for her leg, Jamie had some issues with her left thigh area for a while, but it has gone away. Tell her to keep up the good work!

Mary Lou

P.S. How are you holding up?

jc3

03-28-2005, 05:57 PM

hi susanna
sounds like you guys are doing good. As for the leg numbness i don't think it's anything to be concerned about. Nicole at the beginning was complaining alot that one arm felt like it was asleep alot and i was worried alittle about it, but it eventually went away.
It is good that her steri strips are off, nicoles were still on when we went for our 3 1/2 week check up, except for some that fell off and they took them off at the appointment, she wasn't happy. I think when they are about 3 -
3 1/2 weeks they make a big turnaround.
Keep updating us
Jennifer

susannajon

03-28-2005, 06:59 PM

Hi Jennifer & Mary Lou,

Dr. Boachie wanted the steri-strips changed before we left the hospital, so she took a nice long shower while we were still there, and the nurse changed the steri-strips. I watched VERY carefully, so when it was my turn, I would know what to do.

My daughter hated the dangling steri-strips more than she feared the pain of pulling them off. Plus, she'd experienced them being taken off once already. She took her first shower at home about day two, and again every other day, and about day 8, she'd had enough. They were itching and pulling, and she wanted them off. We took a nice long shower, and rubbed some Neutrogena shower oil into the old steri-strips. We pulled them off in the shower, and then very gently rubbed the incision with some Dove shower wash and a scrubby. The combination of the oil followed by the shower scrub took off a lot of the old adhesive, and most of the remaining scabs, and she looked and felt so much better.

We just took it very slow and gentle, and she took her pain meds right before we got in the shower. She sat in her shower chair, and we made sure the steri-strips were totally saturated before we started. After the shower, I just put fresh steri-strips over the incision for the chest tube, because that area still looked pretty raw.

How am I doing? I am completely exhausted and sleep deprived, but I am so much stronger emotionally because I have had this wonderful bonding experience with my daughter. It has been such a good opportunity for us to reconnect. I am also so relieved that the surgery is over and she's doing exactly what she should be doing as far as the healing process.

Thanks again to both of you for providing support!

susannajon

03-28-2005, 07:01 PM

P.S. to Jennifer...

Did you get that memory foam mattress yet, and did it help Nicole be more comfortable? My daughter is loving hers and it has helped so much.

Susanna

jc3

03-28-2005, 08:08 PM

hi susanna
wow, she is brave to let you do that to her incision!
I agree with the "bonding" My daughter was really against having the surgery, but we knew that she really needed it and we had to make the decision for her, so we had a lot of problems getting along with her in the months leading up to the surgery. She was very angry with us. That all changed after her surgery and it was a really great "bonding" experience i had with her. We are so much closer now and she is a much happier person now.
Jennifer