Update On Rob

[Guest guest]

-,

I am so happy and glad to read that Robs surgery went so well, You

are not surprised that hes up and about so soon are you? you know

these kids, nothing keeps them down for too long. Hes a real trooper!!

How is the swelling now? i hope it has subsided and theres no need

for further intervention. By the time you read this im sure Rob is

already back to his normal self and not listenng to mom to slow down

a bit!!

hugs to you all

Helen and (9,systemic)

-- In , snooksmama@... wrote:

>

> Hello all, and thanks to all who were praying for Rob today!

> I tell you, he is one amazing kid.

> He had the knee arthroscopy today, and did well. They found a lot

of scar

> tissue in an area called Hoffa's fat pad. It looked like shreds on

the

> pictures the doc showed us after the surgery. He cut the scar

tissue out.

> He said there might be alot of bleeding, and his knee is very

swollen

> tonight, I think it must have filled up with blood. He said it

might have

> to be drained if it swells too much.

> Anyway, he thinks that was the main problem, and hopefully in about

6

> weeks healing time, Rob will be a new man! Well, at least a man

with a

> new knee...lol

> He's doing well tonight, back to eating us out of house and home,

and

> hobbling along with crutches. He is amazing!! I'll be talking to

the doc

> tomorrow about the swelling.

> Thanks again for your prayers.

> and Rob 17 Spondy

>

[Guest guest]

Thanks , except today, the knee is horribly swollen. He has been

doing way too much and not letting himself heal.

We read him the riot act and today he is using crutches and trying to

stay off of it as much as possible, using ice to get the swelling down.

I just hope he doesn't have to have it drained now, because it is so

swollen.

I hope that you had a wonderful Christmas.

If you could please pray for a friend of mine's granddaughter. She has

polyarteritis nodosa and is going through a really rough time right

now.Its a very serious autoimmune disease. Luckily, they are able to go

to Cincinnati and see Dr. Passo (Rob's rheumy) and so hopefully, he will

get her under control.

Rob goes to Cincy on Tuesday to see Passo and nephrology.

I'm rambling here...

Take care!

and Rob 17 Spondy

On Sat, 30 Dec 2006 18:07:27 -0000 " sonia1md " <sonia1md@...>

writes:

,

So glad to hear that the surgery went well!

(aundrea 11 systemic jra/gerd)

>

> Hello all, and thanks to all who were praying for Rob's surgery!

> I tell you, he is one amazing kid.

> He had the knee arthroscopy, and did well. They found a lot of scar

> tissue in an area called Hoffa's fat pad. It looked like shreds on

the

> pictures the doc showed us after the surgery. He cut the scar tissue

out

> (partial synovectomy).

> Anyway, he thinks that was the main problem, and hopefully in about 6

> weeks healing time, Rob will be a new man! Well, at least a man with

a

> new knee...lol

> Thanks again for your prayers.

> and Rob 17 Spondy

>

[Guest guest]

,

I am sure you must have been so frustrated with Rob. He came

through the surgery so well, yet kids think they are invincible and

don't really know how to pace themselves. It really is so important

to give that knee some rest. taking care to stay off of it while it

heals will mean in the end he will heal faster without causing delay

from added injury. I am sure you have told Rob all this...Why don't

these teenagers listen to us? I went through the same thing when

was fighting pneumonia. He'd feel good for a couple hours and

then he would go train with his basketball team, by that night he

couldn't move off the couch! ugh My mom would say that this will be

a life long challenge. My mother is 60 and my baby sis with chrones

disease is 28. My mom still stays after her to take her meds, rest,

drink fluids, eat the right things, keep appointments, get labs

checked....Some jobs with motherhood just never go away! :-)

I will pray for your friends grandaughter. I have never heard of

that autoimmune disorder. I am glad she has a good rheumy. Can you

give me the girls first name so that I can add her to my prayer

journal.

I hope you have an awesome New Year!

(Aundrea 11 systemic jra/gerd)

> >

> > Hello all, and thanks to all who were praying for Rob's surgery!

> > I tell you, he is one amazing kid.

> > He had the knee arthroscopy, and did well. They found a lot of

scar

> > tissue in an area called Hoffa's fat pad. It looked like shreds

on

> the

> > pictures the doc showed us after the surgery. He cut the scar

tissue

> out

> > (partial synovectomy).

> > Anyway, he thinks that was the main problem, and hopefully in

about 6

> > weeks healing time, Rob will be a new man! Well, at least a man

with

> a

> > new knee...lol

> > Thanks again for your prayers.

> > and Rob 17 Spondy

> >

>

>

>

>

>

>

>

>

[Guest guest]

Diane,

Thanks so much for getting us that info. I wondered if you meant Rob

was in ICU instead of the recovery room? I thought the recovery room

was for the immmediate period while a patient was coming around after

the anesthesia? Maybe they have a different setup there in HSS though.

Just curious.

Hopefully we will hear more details soon, either from Robs wife, or

Edie after she gets in for a visit.

Good news either way.

Take Care, Cam

[Guest guest]

Dear Cam, No I did mean Recovery Room. At the HSS when my dura was

punctured during surgery I was kept in the recovery room an extra 48

hours. Evidently at HSS if they encounter any problems during surgery

they keep you in rr longer.

Diane

>

> Diane,

>

> Thanks so much for getting us that info. I wondered if you meant Rob

> was in ICU instead of the recovery room? I thought the recovery room

> was for the immmediate period while a patient was coming around after

> the anesthesia? Maybe they have a different setup there in HSS

though.

> Just curious.

>

> Hopefully we will hear more details soon, either from Robs wife, or

> Edie after she gets in for a visit.

>

> Good news either way.

>

> Take Care, Cam

>

[Guest guest]

Hi Cam,

When Dr. Baochie did my surgery, I stayed in the recovery room for about 12 hours after waking from the anestesia, and then went directly to my own room. They originally thought I would go to step-down unit for a few days, but I did so well that I didn't need that. Maybe things work a bit differently at HSS because it is an orthopedic hospital. I remember that Lorrie wound up in the ICU at New York Hospital because of lung problems. New York Hospital is a general hospital attached by a walkway to HSS.

Bonnie

[ ] Re: Update On Rob

Diane,Thanks so much for getting us that info. I wondered if you meant Rob was in ICU instead of the recovery room? I thought the recovery room was for the immmediate period while a patient was coming around after the anesthesia? Maybe they have a different setup there in HSS though. Just curious.Hopefully we will hear more details soon, either from Robs wife, or Edie after she gets in for a visit.Good news either way.Take Care, Cam

[Guest guest]

Hi,

I spoke to Rob yesterday & he is coming along slowly due to a very bad

flare up of his gout. It developed the day before surgery & so far

they were not giving him anything for it. His one foot ( left I

believe )is very swollen, and this is stopping him from ambulating as

much as he would like to. He has asked more than one dr for something

for his gout. Dr Boachie will not give him Indocin as he told Rob it

would interfere with the healing of his fusion. As Rob said to me "

there

must be something else they can give me " but so far ( as yesterday

anyway ) noone has ordered anything. He really enjoyed his visit with

Edie. He is still on liquids. No solid food yet. Because of the bad

flare up of gout he is not ambulating much and because of this nothing

is moving. ( I am sure you know what I mean ) He is very glad the

surgery is behind him and is looking forward to going home although as

yet there is no word on that.

Diane B.

PS Oh he is now in a regular room. His phone number at the hospital is

646-797-8105 if anyone would like to call him.

[Guest guest]

Does anyone remember if Rob was getting a one-stage or a two-stage

surgery? If it's a two-stage, I assume the second surgery would be

coming anyday now, unless the gout is delaying it..? I wish him the

best with everything. I was hoping to send him an e-card, but I

didn't see anything on HSS's webpage for doing that (or am I way off

and that's not where he's at?)

>

> Hi,

> I spoke to Rob yesterday & he is coming along slowly due to a very

bad

> flare up of his gout. It developed the day before surgery & so

far

> they were not giving him anything for it. His one foot ( left I

> believe )is very swollen, and this is stopping him from ambulating

as

> much as he would like to. He has asked more than one dr for

something

> for his gout. Dr Boachie will not give him Indocin as he told Rob

it

> would interfere with the healing of his fusion. As Rob said to

me "

> there

> must be something else they can give me " but so far ( as

yesterday

> anyway ) noone has ordered anything. He really enjoyed his visit

with

> Edie. He is still on liquids. No solid food yet. Because of the

bad

> flare up of gout he is not ambulating much and because of this

nothing

> is moving. ( I am sure you know what I mean ) He is very glad the

> surgery is behind him and is looking forward to going home

although as

> yet there is no word on that.

> Diane B.

> PS Oh he is now in a regular room. His phone number at the

hospital is

> 646-797-8105 if anyone would like to call him.

>

[Guest guest]

Hi , Rob had both done at the same time. Dr Boachie did an

Ant/Post. revision on March 20th. Rob was really glad as he did not

want to have to go back in a week later for a second surgery. No you

are not way off, Rob is at the Hospital for Special Surgery. Sorry I

cannot help you out as far as sending an e card goes. I have not

been to the hospitals website since right before I had my revision

there.

Diane B

> >

> > Hi,

> > I spoke to Rob yesterday & he is coming along slowly due to a

very

> bad

> > flare up of his gout. It developed the day before surgery & so

> far

> > they were not giving him anything for it. His one foot ( left I

> > believe )is very swollen, and this is stopping him from

ambulating

> as

> > much as he would like to. He has asked more than one dr for

> something

> > for his gout. Dr Boachie will not give him Indocin as he told

Rob

> it

> > would interfere with the healing of his fusion. As Rob said to

> me "

> > there

> > must be something else they can give me " but so far ( as

> yesterday

> > anyway ) noone has ordered anything. He really enjoyed his

visit

> with

> > Edie. He is still on liquids. No solid food yet. Because of

the

> bad

> > flare up of gout he is not ambulating much and because of this

> nothing

> > is moving. ( I am sure you know what I mean ) He is very glad

the

> > surgery is behind him and is looking forward to going home

> although as

> > yet there is no word on that.

> > Diane B.

> > PS Oh he is now in a regular room. His phone number at the

> hospital is

> > 646-797-8105 if anyone would like to call him.

> >

>

[Guest guest]

Please let Rob know how happy I am that his surgery is over and that he can now focus on his recovery!! Ken."Diane B." <roziedb@...> wrote: Hi , Rob had both done at the same time. Dr Boachie did an Ant/Post. revision on March 20th. Rob was really glad as he did not want to have to go back in a week later for a second surgery. No you are not way off, Rob is at the Hospital for Special Surgery. Sorry I cannot help you out as far as sending an e card goes. I

have not been to the hospitals website since right before I had my revision there.Diane B> >> > Hi,> > I spoke to Rob yesterday & he is coming along slowly due to

a very > bad > > flare up of his gout. It developed the day before surgery & so > far > > they were not giving him anything for it. His one foot ( left I > > believe )is very swollen, and this is stopping him from ambulating > as > > much as he would like to. He has asked more than one dr for > something > > for his gout. Dr Boachie will not give him Indocin as he told Rob > it > > would interfere with the healing of his fusion. As Rob said to > me " > > there > > must be something else they can give me " but so far ( as > yesterday > > anyway ) noone has ordered anything. He really enjoyed his visit > with > > Edie. He is still on liquids. No solid food yet. Because of the > bad > > flare up of gout he is not ambulating much and because of this > nothing > > is

moving. ( I am sure you know what I mean ) He is very glad the > > surgery is behind him and is looking forward to going home > although as > > yet there is no word on that.> > Diane B.> > PS Oh he is now in a regular room. His phone number at the > hospital is > > 646-797-8105 if anyone would like to call him.> >>

Bored stiff? Loosen up...Download and play hundreds of games for free on Games.

[Guest guest]

Thanks Diane!

That opens another question. I thought that doctors tried to stay

away from doing both the A & P surgeries in one day due to the

dangers of being under anesthesia for so long. Does anyone know how

long Rob's surgery lasted? I ask because my anterior surgery is

minimal compared to many others on this list, and is estimated to

only be about 2 hours. The posterior though is estimated to be

about 8 (assuming no complications, of course). I know that many of

you had surgeries that ended up being 10-12 hours. I would love to

be able to get both done on the same day, but of course I'd want to

do what the surgeon feels most comfortable and safe with

> > >

> > > Hi,

> > > I spoke to Rob yesterday & he is coming along slowly due to a

> very

> > bad

> > > flare up of his gout. It developed the day before surgery &

so

> > far

> > > they were not giving him anything for it. His one foot ( left

I

> > > believe )is very swollen, and this is stopping him from

> ambulating

> > as

> > > much as he would like to. He has asked more than one dr for

> > something

> > > for his gout. Dr Boachie will not give him Indocin as he told

> Rob

> > it

> > > would interfere with the healing of his fusion. As Rob said

to

> > me "

> > > there

> > > must be something else they can give me " but so far ( as

> > yesterday

> > > anyway ) noone has ordered anything. He really enjoyed his

> visit

> > with

> > > Edie. He is still on liquids. No solid food yet. Because of

> the

> > bad

> > > flare up of gout he is not ambulating much and because of this

> > nothing

> > > is moving. ( I am sure you know what I mean ) He is very glad

> the

> > > surgery is behind him and is looking forward to going home

> > although as

> > > yet there is no word on that.

> > > Diane B.

> > > PS Oh he is now in a regular room. His phone number at the

> > hospital is

> > > 646-797-8105 if anyone would like to call him.

> > >

> >

>

[Guest guest]

Dear ,

I had two revisions, 11 months apart, and each were one day operations, my first, anterior/posterior and my second posterior only. Both were in the ten hour range. I think some doc's stage the surgery due to their own preference of not having the surgery be sooooo long, afterall it's tough work and very hard on them, as well as the patient. I always knew going into both of mine, that if blood loss got too great, there was a chance they'd have to close me up and stage it. Since this is an operation with a lot of bone work, there is a chance for a lot of bleeding. I have closely listened to many stories here of patients that had staged surgeries, and sometimes I found myself jealous of their early stage recoveries, they seemed to be doing more faster than me at the same point. I would say by the one month mark they and I were at about the same stage, but early on they seemed much more with it than me. Just look at the remarkable E-Mails sent to us from Suzanne while still in the hospital. I never would have ventured onto the computer at that stage for fear of not being able to put a complete sentence together, and truly wasn't up to it. I just felt like I had been hit by a bus, and my big event for the day was the short walk in my walker to the bathroom, and then I'd lay down exhausted like I had just run a marathon. I just think all that surgical time, anesthesia, blood loss, just wipes you out.

[ ] Re: Update On Rob

Thanks Diane! That opens another question. I thought that doctors tried to stay away from doing both the A & P surgeries in one day due to the dangers of being under anesthesia for so long. Does anyone know how long Rob's surgery lasted? I ask because my anterior surgery is minimal compared to many others on this list, and is estimated to only be about 2 hours. The posterior though is estimated to be about 8 (assuming no complications, of course). I know that many of you had surgeries that ended up being 10-12 hours. I would love to be able to get both done on the same day, but of course I'd want to do what the surgeon feels most comfortable and safe with > > >> > > Hi,> > > I spoke to Rob yesterday & he is coming along slowly due to a > very > > bad > > > flare up of his gout. It developed the day before surgery & so > > far > > > they were not giving him anything for it. His one foot ( left I > > > believe )is very swollen, and this is stopping him from > ambulating > > as > > > much as he would like to. He has asked more than one dr for > > something > > > for his gout. Dr Boachie will not give him Indocin as he told > Rob > > it > > > would interfere with the healing of his fusion. As Rob said to > > me " > > > there > > > must be something else they can give me " but so far ( as > > yesterday > > > anyway ) noone has ordered anything. He really enjoyed his > visit > > with > > > Edie. He is still on liquids. No solid food yet. Because of > the > > bad > > > flare up of gout he is not ambulating much and because of this > > nothing > > > is moving. ( I am sure you know what I mean ) He is very glad > the > > > surgery is behind him and is looking forward to going home > > although as > > > yet there is no word on that.> > > Diane B.> > > PS Oh he is now in a regular room. His phone number at the > > hospital is > > > 646-797-8105 if anyone would like to call him.> > >> >>

[Guest guest]

Dear Ken, When I speak to Rob again I will be sure & tell him.

Diane B

> > >

> > > Hi,

> > > I spoke to Rob yesterday & he is coming along slowly due to a

> very

> > bad

> > > flare up of his gout. It developed the day before surgery & so

> > far

> > > they were not giving him anything for it. His one foot ( left I

> > > believe )is very swollen, and this is stopping him from

> ambulating

> > as

> > > much as he would like to. He has asked more than one dr for

> > something

> > > for his gout. Dr Boachie will not give him Indocin as he told

> Rob

> > it

> > > would interfere with the healing of his fusion. As Rob said to

> > me "

> > > there

> > > must be something else they can give me " but so far ( as

> > yesterday

> > > anyway ) noone has ordered anything. He really enjoyed his

> visit

> > with

> > > Edie. He is still on liquids. No solid food yet. Because of

> the

> > bad

> > > flare up of gout he is not ambulating much and because of this

> > nothing

> > > is moving. ( I am sure you know what I mean ) He is very glad

> the

> > > surgery is behind him and is looking forward to going home

> > although as

> > > yet there is no word on that.

> > > Diane B.

> > > PS Oh he is now in a regular room. His phone number at the

> > hospital is

> > > 646-797-8105 if anyone would like to call him.

> > >

> >

>

>

>

>

>

>

> ---------------------------------

> Bored stiff? Loosen up...

> Download and play hundreds of games for free on Games.

>

[Guest guest]

Hi , I know how u feel. I am sorry but I didn't ask him how

long his surgery lasted. I know before the surgery Dr Boachie told

him he would try & do both at the same time BUT if he couldn't he

would have to have it done in 2 stages. I know Rob was very glad Dr

Boachie managed to do both at the same time. I had an Ant/Post

fusion done in 85 & he did them both at the same time. That time my

surgery took 8 hrs. When I had my revision ( by Dr Boachie

June8th,05 ) I was lucky that he mangerd to do it all from the back.

I don't know if Rob is home yet or still in the hospital. I know as

soon as he is abel he will post & I am sure you can ask him then.

Wishing you the best of luck,

Diane B

> > > >

> > > > Hi,

> > > > I spoke to Rob yesterday & he is coming along slowly due to a

> > very

> > > bad

> > > > flare up of his gout. It developed the day before surgery &

> so

> > > far

> > > > they were not giving him anything for it. His one foot (

left

> I

> > > > believe )is very swollen, and this is stopping him from

> > ambulating

> > > as

> > > > much as he would like to. He has asked more than one dr for

> > > something

> > > > for his gout. Dr Boachie will not give him Indocin as he

told

> > Rob

> > > it

> > > > would interfere with the healing of his fusion. As Rob said

> to

> > > me "

> > > > there

> > > > must be something else they can give me " but so far ( as

> > > yesterday

> > > > anyway ) noone has ordered anything. He really enjoyed his

> > visit

> > > with

> > > > Edie. He is still on liquids. No solid food yet. Because

of

> > the

> > > bad

> > > > flare up of gout he is not ambulating much and because of

this

> > > nothing

> > > > is moving. ( I am sure you know what I mean ) He is very

glad

> > the

> > > > surgery is behind him and is looking forward to going home

> > > although as

> > > > yet there is no word on that.

> > > > Diane B.

> > > > PS Oh he is now in a regular room. His phone number at the

> > > hospital is

> > > > 646-797-8105 if anyone would like to call him.

> > > >

> > >

> >

>

[Guest guest]

: I don't even know what to say to you. I will be keeping Rob and the whole family in my thoughts and prayers. I know God will be with you and Rob through all of this and I hope you can lean on him while you are worrying about your baby (they are always our babies aren't they?).

You may whine anytime you wish, I think you've earned the right with everything you are dealing with. I will be sending extra prayers and lots & lots of happy thoughts to you. Try and take care of yourself during all this too and keep us updated as you can.

Beth & Hannah, 10, unspecified arthritis; asthma; gerd; migraines

Sending prayers & happy thoughts,

Beth :-)

Update on Rob

Hello all.Updating on Rob...He has a pectus excavatum deformity of the chest (funnel chest) that he'shad since birth. It goes along with hypermobile joints, collagen diseasesetc. We elected not to repair in his childhood as it was termed 'not badenough' and at that point, it was a real risk for surgery given hisuncontrolled asthma. Over the last year he's been dealing withcostochondritis in the area. After further investigation, it was found itis now severely pushing on his heart and now it must be repaired. Thiswill involve major surgery, possibly an ICU stay and hospital for atleast a week. Rob can't have any NSAIDS due to his kidney disorder sopain control will be an issue. That, and as we all know to ask a personwith arthritis to rest and stay in bed is a challenge!! I will be withhim 24/7 and refuse to leave his side. Surgery will be June 15 at Kosairchildren's in Louisville and the doctor doing the procedure

has beendoing them for over 20 years. That is a comfort.As a side note, and what has me upset, is his pediatrician decided thatwith his variety of autoimmune disorders that she'd like to test him forantiphospholipid antibody syndrome. This is a clotting disorder that cancause strokes and heart attacks, seen sometimes in people with lupus.Well, Rob's test came up slightly positive so we are to seehematology/oncology for this. He will predonate his blood for surgerynext week as transfusion is a possibility. I'm not sure what otherprecautions will need to be done if he does indeed have the APLA syndromeas well. I haven't even told him about this result yet, graduation isnext Saturday and we will deal with it the following week. I just don'tknow how many more diagnoses this kid can take....it breaks my heart.Sorry to whine, its been a rough week.I'll keep you posted, and please keep Rob in your prayers for the nextfew

weeks.Thank you so much for listening! and Rob 18 Spondy

[Guest guest]

, You whine all you need to. I am sorry to hear of this. How awful for him and for you. It is so frustrating that when they should be concentrating on other things they have to worry about health issues. Sounds like a very painful procedure, but he is an amazing young man and will come through it strong. College will do him good, even though it is hard on us mom's. Our daughter joe has grown so much while there, and learned that mom knows a few things too. For instance, she has had a stubborn ankle since last week (and only 2 weeks out on Remcaide which is very frustrating). She has been taking Tylenol, then mentioned that she wasn't able to particate with her Institute group at church because of pain. I told her to take her Ultram. She did. Still hurting for about 6 days. Called the rheumy for her and left a message for on call to call her, he said up pred and try her cream that we had made (can't remember name). So, she tries

cream and the others and says it is doing better. Tonight though she is dying in pain and calls, I ask her again what doc said, and she realized she needs to follow his advice about the pred to get through the week. It is good for her to deal with the docs and have to make choices. She did try the home remedies of ice, rest etc without success. When she first went to university I had to go up and take care of her a few times, but her roomie is good and helps her and she calls and asks and listens now (before was not and I had to take this crying out of control child to clinic, now a young woman calls and we manage it-the maturation is coming even though it can be hard). Rob will be closer distance than joe is but still a good one, close enough to come home if needed or for you to go his way. What is he planning on majoring in? Glad to hear you are doing better. Sorry a little long winded there. My poor inbox has been spammed so bad it is

hard to find my messages anymore so I am trying to make up-lol esnooksmama@... wrote: Hello all.Updating on Rob...He has a pectus excavatum deformity of the chest (funnel chest) that he'shad since birth. It goes along with hypermobile joints, collagen diseasesetc. We elected not to repair in his childhood as it was termed 'not badenough' and at that point, it was a real risk for surgery given hisuncontrolled asthma. Over the last year he's been dealing

withcostochondritis in the area. After further investigation, it was found itis now severely pushing on his heart and now it must be repaired. Thiswill involve major surgery, possibly an ICU stay and hospital for atleast a week. Rob can't have any NSAIDS due to his kidney disorder sopain control will be an issue. That, and as we all know to ask a personwith arthritis to rest and stay in bed is a challenge!! I will be withhim 24/7 and refuse to leave his side. Surgery will be June 15 at Kosairchildren's in Louisville and the doctor doing the procedure has beendoing them for over 20 years. That is a comfort.As a side note, and what has me upset, is his pediatrician decided thatwith his variety of autoimmune disorders that she'd like to test him forantiphospholipid antibody syndrome. This is a clotting disorder that cancause strokes and heart attacks, seen sometimes in people with lupus.Well, Rob's test came up slightly

positive so we are to seehematology/oncology for this. He will predonate his blood for surgerynext week as transfusion is a possibility. I'm not sure what otherprecautions will need to be done if he does indeed have the APLA syndromeas well. I haven't even told him about this result yet, graduation isnext Saturday and we will deal with it the following week. I just don'tknow how many more diagnoses this kid can take....it breaks my heart.Sorry to whine, its been a rough week.I'll keep you posted, and please keep Rob in your prayers for the nextfew weeks.Thank you so much for listening! and Rob 18 Spondy

Ready for the edge of your seat? Check out tonight's top picks on TV.