Re: need advice immediately

[Guest guest]

Hello Everyone,

Here is a quick update. Today ate well for the first time at breakfast.

I had the nurses give him the Phenergan as he was starting to eat. I am

heading back out to the hospital. I am going to discuss with the doctor this

idea. I want to schedule the Phenergan at meal times and bedtime, this helps

him

keep food down. He is on a pureed diet at my request, and I feel after so

long of a time vomiting, if the Phenergan keeps him from vomiting his stomach

can get used to having food in it again. Then I want to start reducing the dose

of Phenergan and see what happens. The surgeon checked him this morning and

said everything looked good and while he was doing the surgery he

automatically checked for any bowel blockage or problem. He said it all looked

good. We

are working on the gastritis with Prevacid and Reglan (small dose). I think

it is worth giving my idea a try. I will listen objectively to any suggestions

he has and see where it goes. I did have a talk with my doctor and told him

why I did what I did and he apologized to me. Hopefully now we will work as a

team. I told him I don't have an MD behind my name I have MOM behind it, and

I know him better than anyone else. I just don't want to be blown off as an

emotional mom. I am a worried mom and will tweak noses if I am pushed to do

it. I want to thank everyone again. Will let you know. Want to go so I don't

miss the doctor. Love to all.

Crickmore Mom to 21 year old cHaRGE

[Guest guest]

I had not heard of others going against Drs. before. I took wes to

a pulmonoligest once who said he had to be on this antibiotic all the

time. but his reg. dr. had been trying to

keep him off antibiotics. I told the Dr I would give him the antibiotic

for a month or so tell he was over what he had but then he shouldn't

be on it unless he needs it. she said all

trach kids are on antibiotics all the time. I said well he doesn't need

it he wont be on it. This Dr sent DCFS to my house to make sure I

was giving him the med. for the time he was

sick . IM like Im not stupid I want what is best for him. it was not

long after maybe a year that wes was sick again and I asked a

different dr about that antibiotic the other dr

wanted him on all the time. and was told that is a bad one shouldn't be

used unless absolutely necessary because it makes the body seseptable to

some bugs that are antibiotic resistant.

I guess what I am saying is its nice to see that others stand up for

what they see is right for their child even against what the Drs. say

who dont really know it all.

KayRena mom of wes 10 charge

Keedy wrote:

> I agree . Sometimes we just have to go over the doctors heads. It

> can be very difficult to do this as we often have a good rapport with

> our kids' physicians. But it sometimes is necessary for the well-being

> and lives of our children. I remember telling an ENT doctor that I

> would not allow him to put the same alternative trach in Kendra that

> nearly killed her. The residents standing around the doctor looked at me

> like I had 3 heads. In their circle, you just don't question the

> doctors.

>

> , I am so glad to hear that ph is receiving the treatment he

> needs. Congratulations for working so hard for his health. I will

> really look forward to hearing updates when you are home.

>

> Best wishes to you and ph.

>

>

> Mom to Kendra, and Camille

>

> Re: need advice immediately

> >Date: Sat, 27 Dec 2003 22:36:28 EST

> >

> >I have come home for a few minutes. ph finally was admitted to

> the

> >hospital on the 23rd after I demanded a referral to the surgeon that

> did

> >'s

> >hernia surgery when he was 5. was given an ultrasound and

> gallbladder

> >study

> >and endoscope. It was found that he has a hiatal hernia, and his

> >gallbladder

> >is only emptying at a rate of 14% when it should be at least 30%.

>

> had

> >surgery this morning and they removed his gallbladder. His regular

> doctor

> >is

> >mad that I went over his head. He was only doing what we had been

> doing

> >for

> >the last month. is feeling better somewhat. He did get mad

> tonight

> >that

> >there was no food on his tray tonight, only clear liquids. He has a

> lot

> of

> >irritation of his esophagus near his stomach. We will work on that

> next.

> >He will

> >be in the hospital for a while. The nurses are fussing over him,

> they

> >think

> >he's just so cute. I feel so much better. We have a long road to

> travel

> >yet

> >in his recovery, but we have at least taken care of one problem. I

> want

> to

> >truly thank everyone for their support. It means the world to me. I

> am

> >sitting

> >here writing this and crying my eyes out. I have not been very good

> at

> >stopping the crying lately. I am leaving for the hospital again. He

> is

> in

> >Ball

> >Memorial Hospital Muncie, Indiana. Our phone number to our room is

> >

> >(I think) You can call the hospital at and ask for room

> 9126.

> >I would love to hear from you. The phones are shut off at 10pm (EST)

> and

> >turned back on at 8am (EST). The address is 2401 W. University Av

> Muncie,

> >IN

> >47304. Again, thank all of you from the bottom of my heart. Our

> whole

> >family

> >is holding off Christmas until comes home. We are all leaving

> up

> our

> >decorations and will really have something to celebrate. I hate that

> I

> had

> >to get

> >(excuse this) pissy, but I was fighting for my son's very life. I

> will

> >check

> >my email again in a few days. I am staying in 's room with him.

> They

> >brought me in a cot. I always camp with him. My brother offered to

> stay

> >with

> >him so I could come home for a short while. Thank you all. I will

> keep

> >you

> >posted on his recovery. If anyone calls the hospital and wants to

> know

> >about

> >him ask about ph Bolinger and the code word is " mom " so they will

> tell

> >you

> >his condition. Love you all. You are the best. Will someone let

> Dr.

> >Blake

> >know how he is doing? She has been so good to help me. Will update

> later.

> > Crickmore Mom to ph 21 year old cHaRGE

> >

> >

> >

[Guest guest]

I had not heard of others going against Drs. before. I took wes to

a pulmonoligest once who said he had to be on this antibiotic all the

time. but his reg. dr. had been trying to

keep him off antibiotics. I told the Dr I would give him the antibiotic

for a month or so tell he was over what he had but then he shouldn't

be on it unless he needs it. she said all

trach kids are on antibiotics all the time. I said well he doesn't need

it he wont be on it. This Dr sent DCFS to my house to make sure I

was giving him the med. for the time he was

sick . IM like Im not stupid I want what is best for him. it was not

long after maybe a year that wes was sick again and I asked a

different dr about that antibiotic the other dr

wanted him on all the time. and was told that is a bad one shouldn't be

used unless absolutely necessary because it makes the body seseptable to

some bugs that are antibiotic resistant.

I guess what I am saying is its nice to see that others stand up for

what they see is right for their child even against what the Drs. say

who dont really know it all.

KayRena mom of wes 10 charge

Keedy wrote:

> I agree . Sometimes we just have to go over the doctors heads. It

> can be very difficult to do this as we often have a good rapport with

> our kids' physicians. But it sometimes is necessary for the well-being

> and lives of our children. I remember telling an ENT doctor that I

> would not allow him to put the same alternative trach in Kendra that

> nearly killed her. The residents standing around the doctor looked at me

> like I had 3 heads. In their circle, you just don't question the

> doctors.

>

> , I am so glad to hear that ph is receiving the treatment he

> needs. Congratulations for working so hard for his health. I will

> really look forward to hearing updates when you are home.

>

> Best wishes to you and ph.

>

>

> Mom to Kendra, and Camille

>

> Re: need advice immediately

> >Date: Sat, 27 Dec 2003 22:36:28 EST

> >

> >I have come home for a few minutes. ph finally was admitted to

> the

> >hospital on the 23rd after I demanded a referral to the surgeon that

> did

> >'s

> >hernia surgery when he was 5. was given an ultrasound and

> gallbladder

> >study

> >and endoscope. It was found that he has a hiatal hernia, and his

> >gallbladder

> >is only emptying at a rate of 14% when it should be at least 30%.

>

> had

> >surgery this morning and they removed his gallbladder. His regular

> doctor

> >is

> >mad that I went over his head. He was only doing what we had been

> doing

> >for

> >the last month. is feeling better somewhat. He did get mad

> tonight

> >that

> >there was no food on his tray tonight, only clear liquids. He has a

> lot

> of

> >irritation of his esophagus near his stomach. We will work on that

> next.

> >He will

> >be in the hospital for a while. The nurses are fussing over him,

> they

> >think

> >he's just so cute. I feel so much better. We have a long road to

> travel

> >yet

> >in his recovery, but we have at least taken care of one problem. I

> want

> to

> >truly thank everyone for their support. It means the world to me. I

> am

> >sitting

> >here writing this and crying my eyes out. I have not been very good

> at

> >stopping the crying lately. I am leaving for the hospital again. He

> is

> in

> >Ball

> >Memorial Hospital Muncie, Indiana. Our phone number to our room is

> >

> >(I think) You can call the hospital at and ask for room

> 9126.

> >I would love to hear from you. The phones are shut off at 10pm (EST)

> and

> >turned back on at 8am (EST). The address is 2401 W. University Av

> Muncie,

> >IN

> >47304. Again, thank all of you from the bottom of my heart. Our

> whole

> >family

> >is holding off Christmas until comes home. We are all leaving

> up

> our

> >decorations and will really have something to celebrate. I hate that

> I

> had

> >to get

> >(excuse this) pissy, but I was fighting for my son's very life. I

> will

> >check

> >my email again in a few days. I am staying in 's room with him.

> They

> >brought me in a cot. I always camp with him. My brother offered to

> stay

> >with

> >him so I could come home for a short while. Thank you all. I will

> keep

> >you

> >posted on his recovery. If anyone calls the hospital and wants to

> know

> >about

> >him ask about ph Bolinger and the code word is " mom " so they will

> tell

> >you

> >his condition. Love you all. You are the best. Will someone let

> Dr.

> >Blake

> >know how he is doing? She has been so good to help me. Will update

> later.

> > Crickmore Mom to ph 21 year old cHaRGE

> >

> >

> >

[Guest guest]

-

From the keyboard of Crickmore7@...:

> Here is a quick update. Today ate well for the first time at breakfast.

Yeah!

> .... I did have a talk with my doctor and told him

> why I did what I did and he apologized to me. ...

Good for him! And good for you for going over his head

and doing what needed to be done. I'm proud of you!!

Best wishes for a good recovery for and Happy Holidays

once he's home and better.

Hugs,

Debbie

--

+ Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html +

| Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & |

| Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and |

| birth defects, not by eliminating them or making them happen only to bad |

| people (He can't do that), but by summoning forth friends and neighbors |

+ to ease the burden and to fill the emptiness. " -- Harold S. Kushner +

[Guest guest]

-

From the keyboard of Crickmore7@...:

> Here is a quick update. Today ate well for the first time at breakfast.

Yeah!

> .... I did have a talk with my doctor and told him

> why I did what I did and he apologized to me. ...

Good for him! And good for you for going over his head

and doing what needed to be done. I'm proud of you!!

Best wishes for a good recovery for and Happy Holidays

once he's home and better.

Hugs,

Debbie

--

+ Debbie Tropiano -- debbie@... -- http://www.icus.com/personal.html +

| Mommy to b: 8/17/1995, ^Sara^ b: 10/25/2000 d: 11/7/2000 & |

| Leah b: 10/17/2001 a: 9/26/2002 " God shows His opposition to cancer and |

| birth defects, not by eliminating them or making them happen only to bad |

| people (He can't do that), but by summoning forth friends and neighbors |

+ to ease the burden and to fill the emptiness. " -- Harold S. Kushner +

[Guest guest]

glad to hear ate and is doing better and that you spoke with the dr.

here's hoping you are home soon.

hugs to all,

maria and the guys

Re: need advice immediately

> Hello Everyone,

> Here is a quick update. Today ate well for the first time at

breakfast.

> I had the nurses give him the Phenergan as he was starting to eat. I am

> heading back out to the hospital. I am going to discuss with the doctor

this

> idea. I want to schedule the Phenergan at meal times and bedtime, this

helps him

> keep food down. He is on a pureed diet at my request, and I feel after so

> long of a time vomiting, if the Phenergan keeps him from vomiting his

stomach

> can get used to having food in it again. Then I want to start reducing

the dose

> of Phenergan and see what happens. The surgeon checked him this morning

and

> said everything looked good and while he was doing the surgery he

> automatically checked for any bowel blockage or problem. He said it all

looked good. We

> are working on the gastritis with Prevacid and Reglan (small dose). I

think

> it is worth giving my idea a try. I will listen objectively to any

suggestions

> he has and see where it goes. I did have a talk with my doctor and told

him

> why I did what I did and he apologized to me. Hopefully now we will work

as a

> team. I told him I don't have an MD behind my name I have MOM behind it,

and

> I know him better than anyone else. I just don't want to be blown off as

an

> emotional mom. I am a worried mom and will tweak noses if I am pushed to

do

> it. I want to thank everyone again. Will let you know. Want to go so I

don't

> miss the doctor. Love to all.

> Crickmore Mom to 21 year old cHaRGE

>

>

>

[Guest guest]

I could cry! You have struggled and won such a crazy battle! No mom should be

faced with such obstacles -- but you faced them and overcame them! Hugs to

you!!!!

Michele W

Aubrie's mom