Re: Update on 's surgery

[Guest guest]

Hi ,

Thanks for the update on Ben. How well we know how

busy life can be so don't feel you need to apologize

for taking care of your family. It sounds as if Ben

is doing well. It's not a bad idea to protect his

surgery site as it's still new. It's pretty normal

to protect any surgical site for a while. Kids are

naturally rough at times, so I don't blame you.

I'm sorry he heard the tinnitus. It was probably scary

for him. Hopefully, he won't deal with it again. I

also hope the dizzy feel goes away very soon.

It's going to be fun to read about his hook up

experience. I'll be waiting.

Alice

--- <stephanie@...> wrote:

Hello everyone! First, my apologies for taking so

long to let you all know how is doing. I

have been extremely busy -------------

[Guest guest]

,

So glad to hear Ben is recovering well, I had been wondering about

him, but like you, with summer being so busy, just never got the

chance to post and ask.. You beat me to it <smiles>

I can't wait to hear about his hookup, no matter what he hears, we

want to know how everything went so please do keep us posted.

Kids are rough and tumble, and as long as the wound is still tender,

it's fine to be protective.. You're a mother, that's your job..LOL

Continued good wishes for Ben's recovery and hookup.

Hugs,

Silly

[Guest guest]

I am so sorry you are having to deal with this. I will pray she stays healthy and can have the surgery done ASAP. Unfortunately, most docs don't get a ton of training in prescription meds and that is why stuff like that happens. The pharmacists usually know more about meds than the docs do.

Noelle (12-2-01)Ian (8-15-04)

Update on 's surgery

Hi everyone

I believe I told all of you about 's Surgery being canceled and that we are waiting for a new surgery date. Well I found out today that we are looking at Jan and possible Feb before she can get another surgery date. Pretty scare knowing how fast she is progressing and the fact that the doctor looked me right and the eye and explained that if doesn't get this surgery as it progress this will kill her. ( Due to lungs being crushed and then heart failure). shot and email off to the doctor about this to find out if he's ok with waiting as he doesn't do his own schedule.

We are also very stressed to find out that the meds her peds doctor gave her is what caused the problem in the lungs to stop the surgery when what has is allergies. They gave her tussin which increases the secretions which caused it to run down her throat and in to her chest and lungs and made the cough a lot worse even her nurse when we got back knew soon as I told her what she put her on she was like you have to be joking she knew that it did this. This doctor all but guaranteed me that by putting her on this it would keep it out of her chest and lungs and her cough would be gone by the surgery date if we kept her on it. What a joke because of this doctors misdiagnose and lack of research is at greater risk of problems. We explained and explained how badly needed this surgery now she on hold again because of a doctors mistake. I know we are all human but something this important I would of thought that she would of checked and doubled checked what all it could do and cause. So now we wait some more all we can really hope for is the progression to slow down and for a cancellation. Please continue to keep in your prays and if your churches have pray list please see about putting her on it. I know some of you have already done this for me. We need all the prays we can get and I know prays work her tumor was a great testament to that as it had recessed a way from her spinal cord and out of her spinal canal by the time surgery came around and there is no other way to explain it so please keep praying for , hope everyone has a happy thanksgiving. God bless you all. We are very blessed to have friends like you'll. Love the Kezar family

[Guest guest]

, Praying for in Kansas!!!!!!!!!!!!!!!!!!!!!!!!!!!! Shellie Kezar <hogmech1@...> wrote: Hi everyone I believe I told all of you about 's Surgery being canceled and that we are waiting for a new surgery date. Well I found out today that we are looking at Jan and possible Feb before she can get another surgery date. Pretty scare knowing how fast she is progressing and the fact that the doctor looked me right and the eye and explained that if doesn't get this surgery as it progress this will kill her. ( Due to lungs being crushed and then heart failure). shot and

email off to the doctor about this to find out if he's ok with waiting as he doesn't do his own schedule. We are also very stressed to find out that the meds her peds doctor gave her is what caused the problem in the lungs to stop the surgery when what has is allergies. They gave her tussin which increases the secretions which caused it to run down her throat and in to her chest and lungs and made the cough a lot worse even her nurse when we got back knew soon as I told her what she put her on she was like you have to be joking she knew that it did this. This doctor all but guaranteed me that by putting her on this it would keep it out of her chest and lungs and her cough would be gone by the surgery date if we kept her on it. What a joke because of this doctors misdiagnose and lack of research is at greater risk of problems. We explained and explained how badly

needed this surgery now she on hold again because of a doctors mistake. I know we are all human but something this important I would of thought that she would of checked and doubled checked what all it could do and cause. So now we wait some more all we can really hope for is the progression to slow down and for a cancellation. Please continue to keep in your prays and if your churches have pray list please see about putting her on it. I know some of you have already done this for me. We need all the prays we can get and I know prays work her tumor was a great testament to that as it had recessed a way from her spinal cord and out of her spinal canal by the time surgery came around and there is no other way to explain it so please keep praying for , hope everyone has a happy thanksgiving. God bless you all. We are very blessed to have friends like you'll. Love the Kezar family

FareChase - Search multiple travel sites in one click.

[Guest guest]

I, too, am a strong believer in the power of prayer, and I believe

that it CAN change things. Your will be in our prayers.

God bless you all,

mom to and Jake

>

> Hi everyone

>

> I believe I told all of you about 's Surgery being canceled

and that we are waiting for a new surgery date. Well I found out

today that we are looking at Jan and possible Feb before she can get

another surgery date. Pretty scare knowing how fast she is

progressing and the fact that the doctor looked me right and the eye

and explained that if doesn't get this surgery as it progress

this will kill her. ( Due to lungs being crushed and then heart

failure). shot and email off to the doctor about this to find

out if he's ok with waiting as he doesn't do his own schedule.

>

> We are also very stressed to find out that the meds her peds doctor

gave her is what caused the problem in the lungs to stop the surgery

when what has is allergies. They gave her tussin which

increases the secretions which caused it to run down her throat and

in to her chest and lungs and made the cough a lot worse even her

nurse when we got back knew soon as I told her what she put her on

she was like you have to be joking she knew that it did this. This

doctor all but guaranteed me that by putting her on this it would

keep it out of her chest and lungs and her cough would be gone by the

surgery date if we kept her on it. What a joke because of this

doctors misdiagnose and lack of research is at greater risk of

problems. We explained and explained how badly needed this

surgery now she on hold again because of a doctors mistake. I know we

are all human but something this important I would of thought that

she would of checked and doubled checked what all it could do and

cause. So now we wait some more all we can really hope for is the

progression to slow down and for a cancellation. Please continue to

keep in your prays and if your churches have pray list please

see about putting her on it. I know some of you have already done

this for me. We need all the prays we can get and I know prays work

her tumor was a great testament to that as it had recessed a way from

her spinal cord and out of her spinal canal by the time surgery came

around and there is no other way to explain it so please keep praying

for , hope everyone has a happy thanksgiving. God bless you

all. We are very blessed to have friends like you'll. Love the Kezar

family

>

[Guest guest]

I hope the surgery goes smoothly. My family will be thinking of her.

Noelle (12-2-01)Ian (8-15-04)

Update on 's surgery

Hi everyone

Well looks like is going to get her surgery before the end of the year. They have scheduled it again for the 28th of Dec. This time she will be admitted the night before. We have to drive up on the 21st for pre-op on the 22nd. So we are going to have a very busy week before Christmas. Thanks for all the prays guys please keep them coming for . I will let you'll know if it's a go after her pre-op.

[Guest guest]

, we put egg crate on top of a normal mattress for Moriah. Glad you guys are home now. It is a tough run, but a worthwhile procedure. Shellie Kezar <hogmech1@...> wrote: Hi all Sorry I haven't posted yet about this things have been totally crazy since we got home on Wednesday. As most if not all of you know we left the day after Christmas to go up to Philly. had a clinic appt on the 27th at 8 am and more X-rays, phyiscal, basicly making sure she was healthy enough to have surgery which she was. Then we had her MRI scheduled for the 28th at 12:30 and she was also being admitted to the hospital that

morning so we arrived at 9 am like we were told. She was admitted then they had to start an IV line which having NF can be very hard to do they didn't give her the stuff we call goofy juice which had they waited until we got to MRI they would of. She also wasn't allowed to eat since midnight the night before and could only have juice up until 2 hours before the MRI so her last sip of juice was at 10:30 am. We needless to say they were running really late and they never sedated her until 3:15 so she was begging for juice and also wanting to eat. Then the MRI was suppose to be for her brain and her spine well they only had the order for the spine so when we asked the question at 2:30 they started making calls trying to find out what was going on of course her doctor was actually still on vacation and had only come back to see her Tuesday in the clinic and was coming in Thursday to do her surgery. So everyone and their brother was trying to contact different doctors to see if anyone

else knew what was going on thank god for one of the doctors partners who had the office notes about the Brain MRI. So they ordered. Then we were told it would be hour and half to maybe 2 hours so to go get something to eat and come back to the waiting room and they would let us know when she was back in recovery. Well the MRI ended up taking over 4 and half hours needless to say I was wearing a hole in the carpet from walking back and forth and thinking it was only an MRI and I still had the surgery to get through the next morning. we never even saw her until just after 8pm that night. then again she wasn't allowed to eat after midnight or drink well she wasn't up to eating that night she drank a couple cups of juice. Then we started with the surgery pre and all the next morning at 5:30 am We talked with her doctor who said that his part would take about an hour hour and half and if they needed the muscles in her rib cage cut to spread then her other doctor who removed the tumor

back in July was going to be in the OR right next door and would come into to do it. Well at the 3 hour mark he came in to the waiting room to talk to the parents of the child he had just finished with and we had seen him like 4 times by then and when he was done with them he told us that us he had to help with 's surgery as well and Dr Betz was finishing up and should be out to see us soon. Well it was another 2 hours before we saw him so needless to say I was in a panic mode by then. He informed us they were closing her up and someone would be out to get us in about 30 minutes to come back and see her. Well the time came and went and every parent that had come in to the waiting room after us had come and gone and we were still waniting another hour and half after seeing Dr Betz so I told to call in to the nurses station to find out what was going on and that's when Dr Greywall walked in and asked if we had seen Dr. Betz yet we explained we had talk to him over an hour

earlier so he said he would find out what was going on for us that's when he came back and told us she had been out of the OR for about 45 minutes and was already in PICU as she started with a temp and they couldn't recover her in the normal recovery area they need more things that the ICU had and the recovery didn't so needless to say my heart skipped a beat. When we saw her it was a pretty bad sight the oxygen and all the tubes and plus 3 IV's and 2 drain tubes instead of just one was coming out of her. When she woke all she kept asking for was juice which every other time she had been sedated or had surgery she was able to have within 5 minute this time she couldn't as her tummy as they said was still sleeping and it would of caused her to throw up. This went on for hours her begging for juice and the fact that she hadn't eaten since about 6 pm Tuesday. We were told that they would see in a few hours. Well needless to say she was never able to drink until 9am Friday morning. and

still wasn't allowed to eat. Then around 10 am her new nurse which was a guy told us that we had to start her physical theapy right away and we would start just by holding her in a sitting position for a while. Well with all the tubes and the catherder (spelling) I can tell you I was scared to death I would hurt her. Plus she kept screaming that she wanted her bed. well they moved us back to the Shriners ward later that day and we had so many people coming in and telling us what all we needed to do and who would be seeing us over the weekend. Then the physical therapist came in and made us get her up and try to get her to walk we made them pull the cath. She again cried and screamed how much it hurt and she wanted her bed. This went on twice a day for the first two days then the nurses where also making us get her up. Then on Sunday one of the other doctors who believes kids heal better at home came in and asked if we were ready to go that day or if we wanted to wait until Monday

since we had a long drive ahead of us we were floored as her doctor had told us we would be there at least through Monday and she still had three IV's and one of the drainage tubes in her. Then needless to say her doctor showed up on Monday morning and said no she wasn't going anywhere that day that maybe Tuesday we could leave if she could do more with the walking and the other physical theapy stuff. They were worried that they may have to send her home with a walker which up until an hour before we left looked likely. But she was doing better she didn't ever want to get up but when you would tell her if you do this and that then you could lay back down she would do it ( mad but she did it and would tell us I go bed now) So finally we got the ok to leave then all the paper work x-rays and everything we had to do before we could be released. So we had already decided to stay one more night at the ronald mcdonald house and we were glad we did since we never got out of the hospital

until just after 3:30 pm. But I have to say it was a lot better then when she had her tumor removed and they let her lay in bed for the whole five days. Also As you'll know we spent New years eve in the hospital Well we were shocked to say the least that around 11 pm we were being told to stay away from the windows around midnight cause of gun firer we thought they were kidding until one of the guards came up on the floor as there was only and 3 others in the hospital over that weekend. And said the same thing so and I decided to go out and have a smoke before midnight when we were going to go into lock down completely they had already locked down the doors except for out in to the garage but the garage was locked down for anyone trying to come in or out. Well needless to say it was a quarter till and some people decided it was time to start celebrating. We heard like 7 different shots so we decided it wasn't woth our lifes for a smoke and put them out and went back

inside. Well at midnight the city went crazy we heard automatic weapons and all it went on for about 30 minutes and I were like oh my god this is crazy come to find out every major holiday they do that. So that was our excitment for new years eve. We are now home trying to get back into the swing of things. I'm also looking for a bed for as she can no longer sleep on a crib mattress cause of the Veptr implants, they are so close to the surfs that if she rubs the wrong way or is in a hard chair or a chair sit for to long that the rubbing could cause the implants to break through her skin, the doctors said she need a pillow top mattress. So I'm looking to get her a full size bed I started looking for my little pony bedding that I had seen online a few months ago in a full is no longer being made. So I have decided to make her curtains and valances then I'm going to make her throw pillows for her bed. So I'm going to be pretty busy for a while as I still need to make the

fleece pony blanket sometime lol. Also we have to go back to Philly on the 2nd for a follow up appt we are grateful that they decided that we didn't have to come back up this week actually tomorrow. Well I think that's about it lauren seems to be doing really well still not walking much but doesn't complain much she just more demanding then normal for things she wants. Hope everyone else is doing good I'll post again when I get some time take care all.

Photos Ring in the New Year with Photo Calendars. Add photos, events, holidays, whatever.

[Guest guest]

Wow! It sure sounds like it was an eventful week for you. I am glad the surgery is done and over and I am sure every day she will feel a bit better. It must have been a stressful time for you. How much has her curve improved?

I used to live in a pretty bad part of Philly, so I know it is never a dull moment there.

Also, try looking on eBay for those discontinued My Little Pony bedding items. You very well may be able to find them there.

Noelle (12-2-01)Ian (8-15-04)

Update on 's surgery

Hi all

Sorry I haven't posted yet about this things have been totally crazy since we got home on Wednesday. As most if not all of you know we left the day after Christmas to go up to Philly. had a clinic appt on the 27th at 8 am and more X-rays, phyiscal, basicly making sure she was healthy enough to have surgery which she was. Then we had her MRI scheduled for the 28th at 12:30 and she was also being admitted to the hospital that morning so we arrived at 9 am like we were told. She was admitted then they had to start an IV line which having NF can be very hard to do they didn't give her the stuff we call goofy juice which had they waited until we got to MRI they would of. She also wasn't allowed to eat since midnight the night before and could only have juice up until 2 hours before the MRI so her last sip of juice was at 10:30 am. We needless to say they were running really late and they never sedated her until 3:15 so she was begging for juice and also wanting to eat. Then the MRI was suppose to be for her brain and her spine well they only had the order for the spine so when we asked the question at 2:30 they started making calls trying to find out what was going on of course her doctor was actually still on vacation and had only come back to see her Tuesday in the clinic and was coming in Thursday to do her surgery. So everyone and their brother was trying to contact different doctors to see if anyone else knew what was going on thank god for one of the doctors partners who had the office notes about the Brain MRI. So they ordered. Then we were told it would be hour and half to maybe 2 hours so to go get something to eat and come back to the waiting room and they would let us know when she was back in recovery. Well the MRI ended up taking over 4 and half hours needless to say I was wearing a hole in the carpet from walking back and forth and thinking it was only an MRI and I still had the surgery to get through the next morning. we never even saw her until just after 8pm that night. then again she wasn't allowed to eat after midnight or drink well she wasn't up to eating that night she drank a couple cups of juice. Then we started with the surgery pre and all the next morning at 5:30 am We talked with her doctor who said that his part would take about an hour hour and half and if they needed the muscles in her rib cage cut to spread then her other doctor who removed the tumor back in July was going to be in the OR right next door and would come into to do it. Well at the 3 hour mark he came in to the waiting room to talk to the parents of the child he had just finished with and we had seen him like 4 times by then and when he was done with them he told us that us he had to help with 's surgery as well and Dr Betz was finishing up and should be out to see us soon. Well it was another 2 hours before we saw him so needless to say I was in a panic mode by then. He informed us they were closing her up and someone would be out to get us in about 30 minutes to come back and see her. Well the time came and went and every parent that had come in to the waiting room after us had come and gone and we were still waniting another hour and half after seeing Dr Betz so I told to call in to the nurses station to find out what was going on and that's when Dr Greywall walked in and asked if we had seen Dr. Betz yet we explained we had talk to him over an hour earlier so he said he would find out what was going on for us that's when he came back and told us she had been out of the OR for about 45 minutes and was already in PICU as she started with a temp and they couldn't recover her in the normal recovery area they need more things that the ICU had and the recovery didn't so needless to say my heart skipped a beat. When we saw her it was a pretty bad sight the oxygen and all the tubes and plus 3 IV's and 2 drain tubes instead of just one was coming out of her. When she woke all she kept asking for was juice which every other time she had been sedated or had surgery she was able to have within 5 minute this time she couldn't as her tummy as they said was still sleeping and it would of caused her to throw up. This went on for hours her begging for juice and the fact that she hadn't eaten since about 6 pm Tuesday. We were told that they would see in a few hours. Well needless to say she was never able to drink until 9am Friday morning. and still wasn't allowed to eat. Then around 10 am her new nurse which was a guy told us that we had to start her physical theapy right away and we would start just by holding her in a sitting position for a while. Well with all the tubes and the catherder (spelling) I can tell you I was scared to death I would hurt her. Plus she kept screaming that she wanted her bed. well they moved us back to the Shriners ward later that day and we had so many people coming in and telling us what all we needed to do and who would be seeing us over the weekend. Then the physical therapist came in and made us get her up and try to get her to walk we made them pull the cath. She again cried and screamed how much it hurt and she wanted her bed. This went on twice a day for the first two days then the nurses where also making us get her up. Then on Sunday one of the other doctors who believes kids heal better at home came in and asked if we were ready to go that day or if we wanted to wait until Monday since we had a long drive ahead of us we were floored as her doctor had told us we would be there at least through Monday and she still had three IV's and one of the drainage tubes in her. Then needless to say her doctor showed up on Monday morning and said no she wasn't going anywhere that day that maybe Tuesday we could leave if she could do more with the walking and the other physical theapy stuff. They were worried that they may have to send her home with a walker which up until an hour before we left looked likely. But she was doing better she didn't ever want to get up but when you would tell her if you do this and that then you could lay back down she would do it ( mad but she did it and would tell us I go bed now) So finally we got the ok to leave then all the paper work x-rays and everything we had to do before we could be released. So we had already decided to stay one more night at the ronald mcdonald house and we were glad we did since we never got out of the hospital until just after 3:30 pm. But I have to say it was a lot better then when she had her tumor removed and they let her lay in bed for the whole five days. Also As you'll know we spent New years eve in the hospital Well we were shocked to say the least that around 11 pm we were being told to stay away from the windows around midnight cause of gun firer we thought they were kidding until one of the guards came up on the floor as there was only and 3 others in the hospital over that weekend. And said the same thing so and I decided to go out and have a smoke before midnight when we were going to go into lock down completely they had already locked down the doors except for out in to the garage but the garage was locked down for anyone trying to come in or out. Well needless to say it was a quarter till and some people decided it was time to start celebrating. We heard like 7 different shots so we decided it wasn't woth our lifes for a smoke and put them out and went back inside. Well at midnight the city went crazy we heard automatic weapons and all it went on for about 30 minutes and I were like oh my god this is crazy come to find out every major holiday they do that. So that was our excitment for new years eve. We are now home trying to get back into the swing of things. I'm also looking for a bed for as she can no longer sleep on a crib mattress cause of the Veptr implants, they are so close to the surfs that if she rubs the wrong way or is in a hard chair or a chair sit for to long that the rubbing could cause the implants to break through her skin, the doctors said she need a pillow top mattress. So I'm looking to get her a full size bed I started looking for my little pony bedding that I had seen online a few months ago in a full is no longer being made. So I have decided to make her curtains and valances then I'm going to make her throw pillows for her bed. So I'm going to be pretty busy for a while as I still need to make the fleece pony blanket sometime lol. Also we have to go back to Philly on the 2nd for a follow up appt we are grateful that they decided that we didn't have to come back up this week actually tomorrow. Well I think that's about it lauren seems to be doing really well still not walking much but doesn't complain much she just more demanding then normal for things she wants. Hope everyone else is doing good I'll post again when I get some time take care all.

[Guest guest]

Hi !

Thanks for the update! We've all wondered how things

went. Hopefully is doing well and getting back

to her normal self. Speedy recovery wishes still

coming your way!

Re: bedding... Braydon doesn't have any different

mattress. He uses a regular mattress on his bed.

When he was younger, I used a sheepskin pad just under

the sheet of the bed. It seemed to be nice and soft

in the back area. One of the bed in our house has a

3-inch memory foam pad. It cost less than $200 (much

cheaper than an entire pillow-top mattress). It is

very soft for him to sleep on.

Braydon is also very lean. MOST of the VEPTR kids

have issues with being very lean and needing all the

help they can get to have enough fat-pad to close the

incisions. Especially after major manipulation during

the implant surgeries. The skin may be stretched to

its limit. Keeping the rods from rubbing

unnecessarily under the skin is important, but don't

obsess about it. Being an active toddler is the best

therapy she can have.

My best!

Carmell

mom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon 10, VACTERL,

GERD, DGE, Titanium Rib Project patient #137 (dbl implant 8/01), thoracic

insufficiency, rib anomalies, congenital scoliosis (fusion surgery 5/96),

missing coccyx, fatty filum/TC (released 4/99), anal stenosis, chronic

constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney,

ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic

bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion,

clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97, 3/04), pes cavus, single

umblilical artery, tonsil-adnoidectomy and ear tubes (3/98), etc.

http://carmellb-ivil.tripod.com/myfamily/

__________________________________________

DSL – Something to write home about.

Just $16.99/mo. or less.

dsl.

[Guest guest]

Hi ,

I was so happy to hear from you.!!

I have been checking to see how is. Your post was so good, i

mean you really explained everything good. The VEPTR parents have

been asking about and everyone has been praying for her. I

hope things get a little bit better each day.

>

> Hi all

>

> Sorry I haven't posted yet about this things have been totally

crazy since we got home on Wednesday. As most if not all of you know

we left the day after Christmas to go up to Philly. had a

clinic appt on the 27th at 8 am and more X-rays, phyiscal, basicly

making sure she was healthy enough to have surgery which she was.

Then we had her MRI scheduled for the 28th at 12:30 and she was also

being admitted to the hospital that morning so we arrived at 9 am

like we were told. She was admitted then they had to start an IV

line which having NF can be very hard to do they didn't give her the

stuff we call goofy juice which had they waited until we got to MRI

they would of. She also wasn't allowed to eat since midnight the

night before and could only have juice up until 2 hours before the

MRI so her last sip of juice was at 10:30 am. We needless to say

they were running really late and they never sedated her until 3:15

so she was begging for juice and also wanting to eat. Then the MRI

was suppose to be for her brain and her spine well they only had the

order for the spine so when we asked the question at 2:30 they

started making calls trying to find out what was going on of course

her doctor was actually still on vacation and had only come back to

see her Tuesday in the clinic and was coming in Thursday to do her

surgery. So everyone and their brother was trying to contact

different doctors to see if anyone else knew what was going on thank

god for one of the doctors partners who had the office notes about

the Brain MRI. So they ordered. Then we were told it would be hour

and half to maybe 2 hours so to go get something to eat and come

back to the waiting room and they would let us know when she was

back in recovery. Well the MRI ended up taking over 4 and half hours

needless to say I was wearing a hole in the carpet from walking back

and forth and thinking it was only an MRI and I still had the

surgery to get through the next morning. we never even saw her until

just after 8pm that night. then again she wasn't allowed to eat

after midnight or drink well she wasn't up to eating that night she

drank a couple cups of juice. Then we started with the surgery pre

and all the next morning at 5:30 am We talked with her doctor who

said that his part would take about an hour hour and half and if

they needed the muscles in her rib cage cut to spread then her other

doctor who removed the tumor back in July was going to be in the OR

right next door and would come into to do it. Well at the 3 hour

mark he came in to the waiting room to talk to the parents of the

child he had just finished with and we had seen him like 4 times by

then and when he was done with them he told us that us he had to

help with 's surgery as well and Dr Betz was finishing up and

should be out to see us soon. Well it was another 2 hours before we

saw him so needless to say I was in a panic mode by then. He

informed us they were closing her up and someone would be out to get

us in about 30 minutes to come back and see her. Well the time came

and went and every parent that had come in to the waiting room after

us had come and gone and we were still waniting another hour and

half after seeing Dr Betz so I told to call in to the nurses

station to find out what was going on and that's when Dr Greywall

walked in and asked if we had seen Dr. Betz yet we explained we had

talk to him over an hour earlier so he said he would find out what

was going on for us that's when he came back and told us she had

been out of the OR for about 45 minutes and was already in PICU as

she started with a temp and they couldn't recover her in the normal

recovery area they need more things that the ICU had and the

recovery didn't so needless to say my heart skipped a beat. When we

saw her it was a pretty bad sight the oxygen and all the tubes and

plus 3 IV's and 2 drain tubes instead of just one was coming out of

her. When she woke all she kept asking for was juice which every

other time she had been sedated or had surgery she was able to have

within 5 minute this time she couldn't as her tummy as they said was

still sleeping and it would of caused her to throw up. This went on

for hours her begging for juice and the fact that she hadn't eaten

since about 6 pm Tuesday. We were told that they would see in a few

hours. Well needless to say she was never able to drink until 9am

Friday morning. and still wasn't allowed to eat. Then around 10 am

her new nurse which was a guy told us that we had to start her

physical theapy right away and we would start just by holding her in

a sitting position for a while. Well with all the tubes and the

catherder (spelling) I can tell you I was scared to death I would

hurt her. Plus she kept screaming that she wanted her bed. well they

moved us back to the Shriners ward later that day and we had so many

people coming in and telling us what all we needed to do and who

would be seeing us over the weekend. Then the physical therapist

came in and made us get her up and try to get her to walk we made

them pull the cath. She again cried and screamed how much it hurt

and she wanted her bed. This went on twice a day for the first two

days then the nurses where also making us get her up. Then on Sunday

one of the other doctors who believes kids heal better at home came

in and asked if we were ready to go that day or if we wanted to wait

until Monday since we had a long drive ahead of us we were floored

as her doctor had told us we would be there at least through Monday

and she still had three IV's and one of the drainage tubes in her.

Then needless to say her doctor showed up on Monday morning and said

no she wasn't going anywhere that day that maybe Tuesday we could

leave if she could do more with the walking and the other physical

theapy stuff. They were worried that they may have to send her home

with a walker which up until an hour before we left looked likely.

But she was doing better she didn't ever want to get up but when you

would tell her if you do this and that then you could lay back down

she would do it ( mad but she did it and would tell us I go bed now)

So finally we got the ok to leave then all the paper work x-rays and

everything we had to do before we could be released. So we had

already decided to stay one more night at the ronald mcdonald house

and we were glad we did since we never got out of the hospital until

just after 3:30 pm. But I have to say it was a lot better then when

she had her tumor removed and they let her lay in bed for the whole

five days. Also As you'll know we spent New years eve in the

hospital Well we were shocked to say the least that around 11 pm we

were being told to stay away from the windows around midnight cause

of gun firer we thought they were kidding until one of the guards

came up on the floor as there was only and 3 others in the

hospital over that weekend. And said the same thing so and I

decided to go out and have a smoke before midnight when we were

going to go into lock down completely they had already locked down

the doors except for out in to the garage but the garage was locked

down for anyone trying to come in or out. Well needless to say it

was a quarter till and some people decided it was time to start

celebrating. We heard like 7 different shots so we decided it wasn't

woth our lifes for a smoke and put them out and went back inside.

Well at midnight the city went crazy we heard automatic weapons and

all it went on for about 30 minutes and I were like oh my god

this is crazy come to find out every major holiday they do that. So

that was our excitment for new years eve. We are now home trying to

get back into the swing of things. I'm also looking for a bed for

as she can no longer sleep on a crib mattress cause of the

Veptr implants, they are so close to the surfs that if she rubs the

wrong way or is in a hard chair or a chair sit for to long that the

rubbing could cause the implants to break through her skin, the

doctors said she need a pillow top mattress. So I'm looking to get

her a full size bed I started looking for my little pony bedding

that I had seen online a few months ago in a full is no longer being

made. So I have decided to make her curtains and valances then I'm

going to make her throw pillows for her bed. So I'm going to be

pretty busy for a while as I still need to make the fleece pony

blanket sometime lol. Also we have to go back to Philly on the 2nd

for a follow up appt we are grateful that they decided that we

didn't have to come back up this week actually tomorrow. Well I

think that's about it lauren seems to be doing really well still not

walking much but doesn't complain much she just more demanding then

normal for things she wants. Hope everyone else is doing good I'll

post again when I get some time take care all.

>

[Guest guest]

Carmell

Thanks for that we are looking into every option we can but since

we are going to buy her a new bed I may end up getting her the

better mattress and there wasn't much different in cost regular and

the pillowtop. We are Sam's club members and they have good deals on

there mattresses we got our king set there last year Serta pillowtop

for under $800 and the same ones at the furniture store were over

$1500 so for the price I may go with pillowtop but thanks for the

other ideas so I know of a few other things to look into.

>

> Hi !

>

> Thanks for the update! We've all wondered how things

> went. Hopefully is doing well and getting back

> to her normal self. Speedy recovery wishes still

> coming your way!

>

> Re: bedding... Braydon doesn't have any different

> mattress. He uses a regular mattress on his bed.

> When he was younger, I used a sheepskin pad just under

> the sheet of the bed. It seemed to be nice and soft

> in the back area. One of the bed in our house has a

> 3-inch memory foam pad. It cost less than $200 (much

> cheaper than an entire pillow-top mattress). It is

> very soft for him to sleep on.

>

> Braydon is also very lean. MOST of the VEPTR kids

> have issues with being very lean and needing all the

> help they can get to have enough fat-pad to close the

> incisions. Especially after major manipulation during

> the implant surgeries. The skin may be stretched to

> its limit. Keeping the rods from rubbing

> unnecessarily under the skin is important, but don't

> obsess about it. Being an active toddler is the best

> therapy she can have.

>

> My best!

> Carmell

>

>

>

> mom to Kara 19, idiopathic scoliosis, Blake 15, GERD and Braydon

10, VACTERL, GERD, DGE, Titanium Rib Project patient #137 (dbl

implant 8/01), thoracic insufficiency, rib anomalies, congenital

scoliosis (fusion surgery 5/96), missing coccyx, fatty filum/TC

(released 4/99), anal stenosis, chronic constipation, horseshoe

(cross-fused) kidney, dbl ureter in left kidney, ureterocele

(excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic

bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial

torsion, clubfoot with 8 toes (reconstructed 2/96, 3/96, 1/97,

3/04), pes cavus, single umblilical artery, tonsil-adnoidectomy and

ear tubes (3/98), etc. http://carmellb-ivil.tripod.com/myfamily/

>

>

>

> __________________________________________

> DSL – Something to write home about.

> Just $16.99/mo. or less.

> dsl.

>

[Guest guest]

Thanks

I know I have been so bad with posting that I feel bad I still need

to post on my Veptr message board too and haven't I may just copy

this one and send it lol.

> >

> > Hi all

> >

> > Sorry I haven't posted yet about this things have been totally

> crazy since we got home on Wednesday. As most if not all of you

know

> we left the day after Christmas to go up to Philly. had a

> clinic appt on the 27th at 8 am and more X-rays, phyiscal, basicly

> making sure she was healthy enough to have surgery which she was.

> Then we had her MRI scheduled for the 28th at 12:30 and she was

also

> being admitted to the hospital that morning so we arrived at 9 am

> like we were told. She was admitted then they had to start an IV

> line which having NF can be very hard to do they didn't give her

the

> stuff we call goofy juice which had they waited until we got to

MRI

> they would of. She also wasn't allowed to eat since midnight the

> night before and could only have juice up until 2 hours before the

> MRI so her last sip of juice was at 10:30 am. We needless to say

> they were running really late and they never sedated her until

3:15

> so she was begging for juice and also wanting to eat. Then the MRI

> was suppose to be for her brain and her spine well they only had

the

> order for the spine so when we asked the question at 2:30 they

> started making calls trying to find out what was going on of

course

> her doctor was actually still on vacation and had only come back

to

> see her Tuesday in the clinic and was coming in Thursday to do her

> surgery. So everyone and their brother was trying to contact

> different doctors to see if anyone else knew what was going on

thank

> god for one of the doctors partners who had the office notes about

> the Brain MRI. So they ordered. Then we were told it would be hour

> and half to maybe 2 hours so to go get something to eat and come

> back to the waiting room and they would let us know when she was

> back in recovery. Well the MRI ended up taking over 4 and half

hours

> needless to say I was wearing a hole in the carpet from walking

back

> and forth and thinking it was only an MRI and I still had the

> surgery to get through the next morning. we never even saw her

until

> just after 8pm that night. then again she wasn't allowed to eat

> after midnight or drink well she wasn't up to eating that night

she

> drank a couple cups of juice. Then we started with the surgery pre

> and all the next morning at 5:30 am We talked with her doctor who

> said that his part would take about an hour hour and half and if

> they needed the muscles in her rib cage cut to spread then her

other

> doctor who removed the tumor back in July was going to be in the

OR

> right next door and would come into to do it. Well at the 3 hour

> mark he came in to the waiting room to talk to the parents of the

> child he had just finished with and we had seen him like 4 times

by

> then and when he was done with them he told us that us he had to

> help with 's surgery as well and Dr Betz was finishing up

and

> should be out to see us soon. Well it was another 2 hours before

we

> saw him so needless to say I was in a panic mode by then. He

> informed us they were closing her up and someone would be out to

get

> us in about 30 minutes to come back and see her. Well the time

came

> and went and every parent that had come in to the waiting room

after

> us had come and gone and we were still waniting another hour and

> half after seeing Dr Betz so I told to call in to the nurses

> station to find out what was going on and that's when Dr Greywall

> walked in and asked if we had seen Dr. Betz yet we explained we

had

> talk to him over an hour earlier so he said he would find out what

> was going on for us that's when he came back and told us she had

> been out of the OR for about 45 minutes and was already in PICU as

> she started with a temp and they couldn't recover her in the

normal

> recovery area they need more things that the ICU had and the

> recovery didn't so needless to say my heart skipped a beat. When

we

> saw her it was a pretty bad sight the oxygen and all the tubes and

> plus 3 IV's and 2 drain tubes instead of just one was coming out

of

> her. When she woke all she kept asking for was juice which every

> other time she had been sedated or had surgery she was able to

have

> within 5 minute this time she couldn't as her tummy as they said

was

> still sleeping and it would of caused her to throw up. This went

on

> for hours her begging for juice and the fact that she hadn't eaten

> since about 6 pm Tuesday. We were told that they would see in a

few

> hours. Well needless to say she was never able to drink until 9am

> Friday morning. and still wasn't allowed to eat. Then around 10 am

> her new nurse which was a guy told us that we had to start her

> physical theapy right away and we would start just by holding her

in

> a sitting position for a while. Well with all the tubes and the

> catherder (spelling) I can tell you I was scared to death I would

> hurt her. Plus she kept screaming that she wanted her bed. well

they

> moved us back to the Shriners ward later that day and we had so

many

> people coming in and telling us what all we needed to do and who

> would be seeing us over the weekend. Then the physical therapist

> came in and made us get her up and try to get her to walk we made

> them pull the cath. She again cried and screamed how much it hurt

> and she wanted her bed. This went on twice a day for the first two

> days then the nurses where also making us get her up. Then on

Sunday

> one of the other doctors who believes kids heal better at home

came

> in and asked if we were ready to go that day or if we wanted to

wait

> until Monday since we had a long drive ahead of us we were floored

> as her doctor had told us we would be there at least through

Monday

> and she still had three IV's and one of the drainage tubes in her.

> Then needless to say her doctor showed up on Monday morning and

said

> no she wasn't going anywhere that day that maybe Tuesday we could

> leave if she could do more with the walking and the other physical

> theapy stuff. They were worried that they may have to send her

home

> with a walker which up until an hour before we left looked likely.

> But she was doing better she didn't ever want to get up but when

you

> would tell her if you do this and that then you could lay back

down

> she would do it ( mad but she did it and would tell us I go bed

now)

> So finally we got the ok to leave then all the paper work x-rays

and

> everything we had to do before we could be released. So we had

> already decided to stay one more night at the ronald mcdonald

house

> and we were glad we did since we never got out of the hospital

until

> just after 3:30 pm. But I have to say it was a lot better then

when

> she had her tumor removed and they let her lay in bed for the

whole

> five days. Also As you'll know we spent New years eve in the

> hospital Well we were shocked to say the least that around 11 pm

we

> were being told to stay away from the windows around midnight

cause

> of gun firer we thought they were kidding until one of the guards

> came up on the floor as there was only and 3 others in the

> hospital over that weekend. And said the same thing so and I

> decided to go out and have a smoke before midnight when we were

> going to go into lock down completely they had already locked down

> the doors except for out in to the garage but the garage was

locked

> down for anyone trying to come in or out. Well needless to say it

> was a quarter till and some people decided it was time to start

> celebrating. We heard like 7 different shots so we decided it

wasn't

> woth our lifes for a smoke and put them out and went back inside.

> Well at midnight the city went crazy we heard automatic weapons

and

> all it went on for about 30 minutes and I were like oh my

god

> this is crazy come to find out every major holiday they do that.

So

> that was our excitment for new years eve. We are now home trying

to

> get back into the swing of things. I'm also looking for a bed for

> as she can no longer sleep on a crib mattress cause of the

> Veptr implants, they are so close to the surfs that if she rubs

the

> wrong way or is in a hard chair or a chair sit for to long that

the

> rubbing could cause the implants to break through her skin, the

> doctors said she need a pillow top mattress. So I'm looking to get

> her a full size bed I started looking for my little pony bedding

> that I had seen online a few months ago in a full is no longer

being

> made. So I have decided to make her curtains and valances then I'm

> going to make her throw pillows for her bed. So I'm going to be

> pretty busy for a while as I still need to make the fleece pony

> blanket sometime lol. Also we have to go back to Philly on the 2nd

> for a follow up appt we are grateful that they decided that we

> didn't have to come back up this week actually tomorrow. Well I

> think that's about it lauren seems to be doing really well still

not

> walking much but doesn't complain much she just more demanding

then

> normal for things she wants. Hope everyone else is doing good I'll

> post again when I get some time take care all.

> >

>

[Guest guest]

Glad to hear that about ...keep up the good work,were thinking about you ....VonnieSharon Green <sharon.green18@...> wrote: Good news, folks. I've received the following message from 's sister : "HI SHARON, VAL IS OUT OF SURGERY AND IN RECOVERY. THE DR SAID ALL WENT WELL. I WILL WRITE MORE TOMORROW AFTER THE OTHER SURGERY. KEEP YOUR FINGERS CROSSED. LINDA" So keep those prayers and good thoughts

coming. Sharon

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Messenger with Voice.

[Guest guest]

Hi Sharon~ Thank you for the report on valerie!! Fingers crossed and prayers being said!!! SuzieSharon Green <sharon.green18@...> wrote: Good news, folks. I've received the following message from 's sister : "HI SHARON, VAL IS OUT OF SURGERY AND IN RECOVERY. THE DR SAID ALL WENT WELL. I WILL WRITE MORE TOMORROW AFTER THE OTHER SURGERY. KEEP YOUR FINGERS CROSSED. LINDA" So

keep those prayers and good thoughts coming. Sharon

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Messenger with Voice.