Re: Jodi and Alyssa Update LONG

[Guest guest]

Jodi and all,

Well now that things have slowed down a bit I thought I would tell you about our

visit to NY and subsequent G-tube placement. FYI I am soooo wordy!!!

We had our first visit with Dr. H in mid October. Our appt was for 9am and we

were with someone by 9:30am. This was a pleasant surprise!! After taking

Alyssa's history we saw Dr. H a short time after. She spoke with us about 10

minutes. She mostly asked about Alyssa's food intake, (of course). She said if

Alyssa were a NY patient she might work more with Periactin and trying to

increase her calories. She asked how we (my mom was with me) felt about it and

before I could answer, she asked my mother not me! Apparently, I am biased!!

My mom mentioned Alyssa's waist size is going down not up (mom makes her pants)

and that was the last word we had. She said okay lets do a g-tube, (which we

expected and were prepared for). The next 30 minutes were spent getting

authorization from our insurance company and that was it. Our appt was over.

She set up surgery for exactly 1 week later she was admitted 3 days later for

all the tests to see if she needed the triple procedure.

We were admitted the following Sunday eve for a Delayed Gastric Emptying Monday

morning. The results. . . . 2290 minutes!!! The strange thing is the same test

was run here and came up with 80 minutes. Luckily (or unluckily) no signs of

reflux so an Upper GI was done later that day. Again, no reflux so a PH probe

was set up for Tuesday-Wednesday (it's a 24 hour test). So, we were just

scheduled for the tube placement.

The surgery went very well, but the worst part was the itching from the morphine

they gave her. At first the nurses thought she was freaking out from the pain,

so they kept giving her more and more often. I thought she was so upset from

the large amount of wires and monitors and the 4th tube up her nose in 5 days!

Finally, I mentioned her nose seemed to itch (they had just removed the NG tube)

and the nurse went " oh " and got some benedryl. It finally kicked in about 3

hrs later and she slept. That was the worst and we were discharged6 days later.

We finally saw other families (Jodi Rollison and Amy ) about 2 days before

we left. I also met Bobbi McGrath in the office our first day and Pattie Warren

our last day. They were all soooo helpful!!

Now that we are home, everything has gone pretty well. We are currently having

a minor leaking problem as well as some granulation tissue.

If you made it this far and have any advice I AM ALL EARS!! They gave us some

TAC cream for the granulation tissue and I'm hoping the silver nitrate won't be

necessary. Any alternatives would be greatly appreciated. Also, because of the

tissue her disc is not flush with her skin and it is not terrible stable.

We go back for a Mic-key button placement on January 13, 2004.

Now, I had heard about the 3 hour appts. 1st time patients usually have with Dr.

H. Our time with her was under an hour and most of that was spent getting

authorizations for the surgery (which was great of her to do personally). She

only checked on us one time about 4 days before we went home and then I had to

track her down for discharge instructions the day we left which is also the day

she asked us to participate in research. Is this unusual?? I have left NY with

a much healthier child (she has gained 3lbs in 5 weeks!!!!) and am so grateful.

But I didn't get any of my questions answered. It was just a little frustrating.

Anyway, I have rambled wayyyyy tooo long. Thanks for reading!!!!

Dayna, Mom to Alyssa, 2, 18lbs 10oz and 31.5inches!! not any taller but 3lbs

heavier!!

[Guest guest]

Which Jodi are you addressing?

Jodi Z.

[Guest guest]

Dayna & others,

I am curious... Where are you from? I, too, have heard that Dr. H spends hours

with a

first time patient. In fact, my son has his initial appointment with her on

12/11. I am

from Florida & this trip is going to cost us a lot! I sure hope we get to spend

more

time with her. Has anyone else out there had initial appointments that weren't

as

long as they anticipated? Does anyone else have an appointment with Dr. H on

12/

11?

Kim C.

> Jodi and all,

>

> Well now that things have slowed down a bit I thought I would tell you about

our

visit to NY and subsequent G-tube placement. FYI I am soooo wordy!!!

>

> We had our first visit with Dr. H in mid October. Our appt was for 9am and we

were

with someone by 9:30am. This was a pleasant surprise!! After taking Alyssa's

history

we saw Dr. H a short time after. She spoke with us about 10 minutes. She

mostly

asked about Alyssa's food intake, (of course). She said if Alyssa were a NY

patient she

might work more with Periactin and trying to increase her calories. She asked

how we

(my mom was with me) felt about it and before I could answer, she asked my

mother

not me! Apparently, I am biased!! My mom mentioned Alyssa's waist size is

going

down not up (mom makes her pants) and that was the last word we had. She said

okay lets do a g-tube, (which we expected and were prepared for). The next 30

minutes were spent getting authorization from our insurance company and that was

it. Our appt was over. She set up surgery for exactly 1 week later she was

admitted 3

days later for all the tests to see if she needed the triple procedure.

>

> We were admitted the following Sunday eve for a Delayed Gastric Emptying

Monday

morning. The results. . . . 2290 minutes!!! The strange thing is the same test

was

run here and came up with 80 minutes. Luckily (or unluckily) no signs of reflux

so an

Upper GI was done later that day. Again, no reflux so a PH probe was set up for

Tuesday-Wednesday (it's a 24 hour test). So, we were just scheduled for the

tube

placement.

>

> The surgery went very well, but the worst part was the itching from the

morphine

they gave her. At first the nurses thought she was freaking out from the pain,

so

they kept giving her more and more often. I thought she was so upset from the

large

amount of wires and monitors and the 4th tube up her nose in 5 days! Finally, I

mentioned her nose seemed to itch (they had just removed the NG tube) and the

nurse went " oh " and got some benedryl. It finally kicked in about 3 hrs later

and she

slept. That was the worst and we were discharged6 days later. We finally saw

other

families (Jodi Rollison and Amy ) about 2 days before we left. I also met

Bobbi

McGrath in the office our first day and Pattie Warren our last day. They were

all soooo

helpful!!

>

> Now that we are home, everything has gone pretty well. We are currently

having a

minor leaking problem as well as some granulation tissue.

>

> If you made it this far and have any advice I AM ALL EARS!! They gave us some

TAC

cream for the granulation tissue and I'm hoping the silver nitrate won't be

necessary.

Any alternatives would be greatly appreciated. Also, because of the tissue her

disc is

not flush with her skin and it is not terrible stable.

>

> We go back for a Mic-key button placement on January 13, 2004.

>

> Now, I had heard about the 3 hour appts. 1st time patients usually have with

Dr. H.

Our time with her was under an hour and most of that was spent getting

authorizations for the surgery (which was great of her to do personally). She

only

checked on us one time about 4 days before we went home and then I had to track

her down for discharge instructions the day we left which is also the day she

asked us

to participate in research. Is this unusual?? I have left NY with a much

healthier child

(she has gained 3lbs in 5 weeks!!!!) and am so grateful. But I didn't get any

of my

questions answered. It was just a little frustrating.

>

> Anyway, I have rambled wayyyyy tooo long. Thanks for reading!!!!

>

> Dayna, Mom to Alyssa, 2, 18lbs 10oz and 31.5inches!! not any taller but 3lbs

heavier!!

>

>

>