Ian still Uncomfortable and Endoscopy Biopsy

[Guest guest]

We went to the doc to have Ian's wound site checked and it hasn't

gotten any better - nor has it gotten any worse. So, until the

results of the culture come back - we are continuing the antibiotics

until we know for sure it is the correct one for this type of

infection. Ian is still uncomfortable. It is red, swollen and

irritated - along with gross, pussy and ugly. It is NOT fun

cleaning the site. I made the doc do the " second " cleaning today!

LOL I told her it was time and made her do it! LOL She asked me

if I was using the sterile q-tips the hospital gave me. I said yes -

look at my face - can't you tell?? LOL I still feel like vomiting

every time I see it. Yuck! LOL

Also, I forgot to mention the GOOD NEWS. Ian has been doing

wonderful on his feeds (except for the time when the tube opened in

the car this morning and stomach contents were everywhere. I

thought to myself that I smelled vomit while I was dreaming and

thought I was imagining things until I pulled over!LOL) Anyway.

When they did the surgery - they did an endoscopy biopsy and found

that he has NO signs of reflux at this point! So, I'm so glad we

are starting fresh. He is starting to get constipated though and

has been for a few days - so, I requested and received a

prescription for Miralax and I'm starting him on that today. I'm

hoping it helps.

Okay - so, I just want to say that I feel for all those parents out

there with the children who have to take so many different types of

medications. I typed out a schedule last night and couldn't believe

how our lives are centered around such an invasive schedule. I'm

thinking I'll let my dh try a day this weekend so he knows how

complicated it all is. Isn't that nice of me?? LOL I know - a

nice wife wouldn't do that to her dh - but, I'm not feeling so nice

lately! LOL LOL Just kidding. Sorry, have to have some humor.

Thanks for everyones well wishes, thoughts and prayers. We are so

appreciative.

- H

[Guest guest]

ly, I sometimes feel guilty posting here because everyone has

so much mo re on their plates, I feel lucky and guilty at the same

time...I think you all are doing such great jobs!!!

>

> We went to the doc to have Ian's wound site checked and it hasn't

> gotten any better - nor has it gotten any worse. So, until the

> results of the culture come back - we are continuing the

antibiotics

> until we know for sure it is the correct one for this type of

> infection. Ian is still uncomfortable. It is red, swollen and

> irritated - along with gross, pussy and ugly. It is NOT fun

> cleaning the site. I made the doc do the " second " cleaning today!

> LOL I told her it was time and made her do it! LOL She asked me

> if I was using the sterile q-tips the hospital gave me. I said

yes -

> look at my face - can't you tell?? LOL I still feel like

vomiting

> every time I see it. Yuck! LOL

>

> Also, I forgot to mention the GOOD NEWS. Ian has been doing

> wonderful on his feeds (except for the time when the tube opened

in

> the car this morning and stomach contents were everywhere. I

> thought to myself that I smelled vomit while I was dreaming and

> thought I was imagining things until I pulled over!LOL) Anyway.

> When they did the surgery - they did an endoscopy biopsy and found

> that he has NO signs of reflux at this point! So, I'm so glad we

> are starting fresh. He is starting to get constipated though and

> has been for a few days - so, I requested and received a

> prescription for Miralax and I'm starting him on that today. I'm

> hoping it helps.

>

> Okay - so, I just want to say that I feel for all those parents

out

> there with the children who have to take so many different types

of

> medications. I typed out a schedule last night and couldn't

believe

> how our lives are centered around such an invasive schedule. I'm

> thinking I'll let my dh try a day this weekend so he knows how

> complicated it all is. Isn't that nice of me?? LOL I know - a

> nice wife wouldn't do that to her dh - but, I'm not feeling so

nice

> lately! LOL LOL Just kidding. Sorry, have to have some humor.

>

> Thanks for everyones well wishes, thoughts and prayers. We are so

> appreciative.

>

> - H

>

[Guest guest]

Hi, I am sorry to hear about Ian. Poor guy, and poor you! Sounds so

painful.. I am so relieved the feeds are going well though. I know

how invasive all this can be! THe reason I am always on the ocmputer

so late is because I stay up to do Autumn's feed. It used to be one

in the middle of the night now it is 2. First one before bed, then

one 3 hrs later, and another 3 hours later, then make sure she either

drinks it or bolus some during the day. If I went to sleep, I'd have

too hard a time getting up, so I just stay up, although I would love

more than 5-6 hours of sleep! My husband never did middle of the

night feeds, but I ended up going to Florida to visit my mom for her

last chemo, and he had to do all the feeds and boy was he grumpy!

Now, he appreciates me more, although that's all he does, appreciate,

not do the middle of the night feeds, although he now takes

initiative to do bedtime feeds and breathing treatments a lot!

Summer also seems to sense and need to be nursed then too (middle of

the night)....ok, enough about that, I tend to ramble when tired...

That is great that Ian doesn't have reflux, Autumn didn't test for it

either, just typical and she can tolerate feeds very well, thankfully.

Hope the miralax works, it can be a godsend.

> >

> > We went to the doc to have Ian's wound site checked and it hasn't

> > gotten any better - nor has it gotten any worse. So, until the

> > results of the culture come back - we are continuing the

> antibiotics

> > until we know for sure it is the correct one for this type of

> > infection. Ian is still uncomfortable. It is red, swollen and

> > irritated - along with gross, pussy and ugly. It is NOT fun

> > cleaning the site. I made the doc do the " second " cleaning

today!

> > LOL I told her it was time and made her do it! LOL She asked

me

> > if I was using the sterile q-tips the hospital gave me. I said

> yes -

> > look at my face - can't you tell?? LOL I still feel like

> vomiting

> > every time I see it. Yuck! LOL

> >

> > Also, I forgot to mention the GOOD NEWS. Ian has been doing

> > wonderful on his feeds (except for the time when the tube opened

> in

> > the car this morning and stomach contents were everywhere. I

> > thought to myself that I smelled vomit while I was dreaming and

> > thought I was imagining things until I pulled over!LOL) Anyway.

> > When they did the surgery - they did an endoscopy biopsy and

found

> > that he has NO signs of reflux at this point! So, I'm so glad we

> > are starting fresh. He is starting to get constipated though and

> > has been for a few days - so, I requested and received a

> > prescription for Miralax and I'm starting him on that today. I'm

> > hoping it helps.

> >

> > Okay - so, I just want to say that I feel for all those parents

> out

> > there with the children who have to take so many different types

> of

> > medications. I typed out a schedule last night and couldn't

> believe

> > how our lives are centered around such an invasive schedule. I'm

> > thinking I'll let my dh try a day this weekend so he knows how

> > complicated it all is. Isn't that nice of me?? LOL I know - a

> > nice wife wouldn't do that to her dh - but, I'm not feeling so

> nice

> > lately! LOL LOL Just kidding. Sorry, have to have some humor.

> >

> > Thanks for everyones well wishes, thoughts and prayers. We are

so

> > appreciative.

> >

> > - H

> >

>

[Guest guest]

- never feel guilty. It's your presence and support that

makes it all better. Thank you for always being here.

- H

> >

> > We went to the doc to have Ian's wound site checked and it

hasn't

> > gotten any better - nor has it gotten any worse. So, until the

> > results of the culture come back - we are continuing the

> antibiotics

> > until we know for sure it is the correct one for this type of

> > infection. Ian is still uncomfortable. It is red, swollen and

> > irritated - along with gross, pussy and ugly. It is NOT fun

> > cleaning the site. I made the doc do the " second " cleaning

today!

> > LOL I told her it was time and made her do it! LOL She asked

me

> > if I was using the sterile q-tips the hospital gave me. I said

> yes -

> > look at my face - can't you tell?? LOL I still feel like

> vomiting

> > every time I see it. Yuck! LOL

> >

> > Also, I forgot to mention the GOOD NEWS. Ian has been doing

> > wonderful on his feeds (except for the time when the tube opened

> in

> > the car this morning and stomach contents were everywhere. I

> > thought to myself that I smelled vomit while I was dreaming and

> > thought I was imagining things until I pulled over!LOL)

Anyway.

> > When they did the surgery - they did an endoscopy biopsy and

found

> > that he has NO signs of reflux at this point! So, I'm so glad

we

> > are starting fresh. He is starting to get constipated though

and

> > has been for a few days - so, I requested and received a

> > prescription for Miralax and I'm starting him on that today.

I'm

> > hoping it helps.

> >

> > Okay - so, I just want to say that I feel for all those parents

> out

> > there with the children who have to take so many different types

> of

> > medications. I typed out a schedule last night and couldn't

> believe

> > how our lives are centered around such an invasive schedule.

I'm

> > thinking I'll let my dh try a day this weekend so he knows how

> > complicated it all is. Isn't that nice of me?? LOL I know - a

> > nice wife wouldn't do that to her dh - but, I'm not feeling so

> nice

> > lately! LOL LOL Just kidding. Sorry, have to have some humor.

> >

> > Thanks for everyones well wishes, thoughts and prayers. We are

so

> > appreciative.

> >

> > - H

> >

>

[Guest guest]

- I just found out that the formula can sit for 12 HOURS! -

so, we don't get up in the middle of the night for the continuous

feeds. Am I to understand that Autumn is getting bolus at night?

Is she not on continuous? Just curious.

Thanks for your thoughts. Having a rough morning myself. Let me

know about her feeds - because if you could not have to get up in

the middle of the night - that has helped me greatly for sleep

reasons.

- H

> > >

> > > We went to the doc to have Ian's wound site checked and it

hasn't

> > > gotten any better - nor has it gotten any worse. So, until

the

> > > results of the culture come back - we are continuing the

> > antibiotics

> > > until we know for sure it is the correct one for this type of

> > > infection. Ian is still uncomfortable. It is red, swollen and

> > > irritated - along with gross, pussy and ugly. It is NOT fun

> > > cleaning the site. I made the doc do the " second " cleaning

> today!

> > > LOL I told her it was time and made her do it! LOL She

asked

> me

> > > if I was using the sterile q-tips the hospital gave me. I

said

> > yes -

> > > look at my face - can't you tell?? LOL I still feel like

> > vomiting

> > > every time I see it. Yuck! LOL

> > >

> > > Also, I forgot to mention the GOOD NEWS. Ian has been doing

> > > wonderful on his feeds (except for the time when the tube

opened

> > in

> > > the car this morning and stomach contents were everywhere. I

> > > thought to myself that I smelled vomit while I was dreaming

and

> > > thought I was imagining things until I pulled over!LOL)

Anyway.

> > > When they did the surgery - they did an endoscopy biopsy and

> found

> > > that he has NO signs of reflux at this point! So, I'm so glad

we

> > > are starting fresh. He is starting to get constipated though

and

> > > has been for a few days - so, I requested and received a

> > > prescription for Miralax and I'm starting him on that today.

I'm

> > > hoping it helps.

> > >

> > > Okay - so, I just want to say that I feel for all those

parents

> > out

> > > there with the children who have to take so many different

types

> > of

> > > medications. I typed out a schedule last night and couldn't

> > believe

> > > how our lives are centered around such an invasive schedule.

I'm

> > > thinking I'll let my dh try a day this weekend so he knows how

> > > complicated it all is. Isn't that nice of me?? LOL I know -

a

> > > nice wife wouldn't do that to her dh - but, I'm not feeling so

> > nice

> > > lately! LOL LOL Just kidding. Sorry, have to have some

humor.

> > >

> > > Thanks for everyones well wishes, thoughts and prayers. We

are

> so

> > > appreciative.

> > >

> > > - H

> > >

> >

>

[Guest guest]

She is all bolus. She handles them well although I am on the verge

of passing out from exhaustion. It used to be 2 4 oz at night, now

it is 3 4-5 oz at night. I try to do one at 7 before bed, one at 10

and one at 1. Sometimes with teh 4 kids and stuff happening, it runs

a little late. Summer also nurses right after the last one and gets

up around 6:30 to nurse again. I have to wake my older son up for

school so I am up at 7 unless i keep hitting snooze...which I do.

The docs wanted bolus becasue she could handle it and they said was

simpler and cheaper than a pump. It used to only be 2 at night but

the 3rd is added on to give her extra calories during sleep a good

itme before she wakes up, that way she is hungry when she wakes up.

She drinks 3-6 oz in the morning and I sneak in small boluses

according to how she eats. Her weight/length was not getting better

so this is what we are trying now. She sees gi in 2 weeks and it

might change then.

> > > >

> > > > We went to the doc to have Ian's wound site checked and it

> hasn't

> > > > gotten any better - nor has it gotten any worse. So, until

> the

> > > > results of the culture come back - we are continuing the

> > > antibiotics

> > > > until we know for sure it is the correct one for this type of

> > > > infection. Ian is still uncomfortable. It is red, swollen

and

> > > > irritated - along with gross, pussy and ugly. It is NOT fun

> > > > cleaning the site. I made the doc do the " second " cleaning

> > today!

> > > > LOL I told her it was time and made her do it! LOL She

> asked

> > me

> > > > if I was using the sterile q-tips the hospital gave me. I

> said

> > > yes -

> > > > look at my face - can't you tell?? LOL I still feel like

> > > vomiting

> > > > every time I see it. Yuck! LOL

> > > >

> > > > Also, I forgot to mention the GOOD NEWS. Ian has been doing

> > > > wonderful on his feeds (except for the time when the tube

> opened

> > > in

> > > > the car this morning and stomach contents were everywhere. I

> > > > thought to myself that I smelled vomit while I was dreaming

> and

> > > > thought I was imagining things until I pulled over!LOL)

> Anyway.

> > > > When they did the surgery - they did an endoscopy biopsy and

> > found

> > > > that he has NO signs of reflux at this point! So, I'm so

glad

> we

> > > > are starting fresh. He is starting to get constipated though

> and

> > > > has been for a few days - so, I requested and received a

> > > > prescription for Miralax and I'm starting him on that today.

> I'm

> > > > hoping it helps.

> > > >

> > > > Okay - so, I just want to say that I feel for all those

> parents

> > > out

> > > > there with the children who have to take so many different

> types

> > > of

> > > > medications. I typed out a schedule last night and couldn't

> > > believe

> > > > how our lives are centered around such an invasive schedule.

> I'm

> > > > thinking I'll let my dh try a day this weekend so he knows

how

> > > > complicated it all is. Isn't that nice of me?? LOL I know -

> a

> > > > nice wife wouldn't do that to her dh - but, I'm not feeling

so

> > > nice

> > > > lately! LOL LOL Just kidding. Sorry, have to have some

> humor.

> > > >

> > > > Thanks for everyones well wishes, thoughts and prayers. We

> are

> > so

> > > > appreciative.

> > > >

> > > > - H

> > > >

> > >

> >

>

[Guest guest]

- UGH - I can't imagine. I am a complete useless cranky

horrible person when I don't get enough sleep (how was that for a

few adjectives? LOL) If there is any way that someone could help

you get a nap a couple of times a week during the day - I would

strongly suggest you consider it. I took a nap yesterday for 2.5

hours and then went to bed at 9:00 pm - I'm a much better person

today because of it. I so hope that you can find some more time for

sleep. You seem to be doing incredibly well without it - but, I

know you could probably use more! <grin> Thinking of you lot's.

- H

> > > > >

> > > > > We went to the doc to have Ian's wound site checked and it

> > hasn't

> > > > > gotten any better - nor has it gotten any worse. So,

until

> > the

> > > > > results of the culture come back - we are continuing the

> > > > antibiotics

> > > > > until we know for sure it is the correct one for this type

of

> > > > > infection. Ian is still uncomfortable. It is red, swollen

> and

> > > > > irritated - along with gross, pussy and ugly. It is NOT

fun

> > > > > cleaning the site. I made the doc do the " second "

cleaning

> > > today!

> > > > > LOL I told her it was time and made her do it! LOL She

> > asked

> > > me

> > > > > if I was using the sterile q-tips the hospital gave me. I

> > said

> > > > yes -

> > > > > look at my face - can't you tell?? LOL I still feel

like

> > > > vomiting

> > > > > every time I see it. Yuck! LOL

> > > > >

> > > > > Also, I forgot to mention the GOOD NEWS. Ian has been

doing

> > > > > wonderful on his feeds (except for the time when the tube

> > opened

> > > > in

> > > > > the car this morning and stomach contents were

everywhere. I

> > > > > thought to myself that I smelled vomit while I was

dreaming

> > and

> > > > > thought I was imagining things until I pulled over!LOL)

> > Anyway.

> > > > > When they did the surgery - they did an endoscopy biopsy

and

> > > found

> > > > > that he has NO signs of reflux at this point! So, I'm so

> glad

> > we

> > > > > are starting fresh. He is starting to get constipated

though

> > and

> > > > > has been for a few days - so, I requested and received a

> > > > > prescription for Miralax and I'm starting him on that

today.

> > I'm

> > > > > hoping it helps.

> > > > >

> > > > > Okay - so, I just want to say that I feel for all those

> > parents

> > > > out

> > > > > there with the children who have to take so many different

> > types

> > > > of

> > > > > medications. I typed out a schedule last night and

couldn't

> > > > believe

> > > > > how our lives are centered around such an invasive

schedule.

> > I'm

> > > > > thinking I'll let my dh try a day this weekend so he knows

> how

> > > > > complicated it all is. Isn't that nice of me?? LOL I

know -

>

> > a

> > > > > nice wife wouldn't do that to her dh - but, I'm not

feeling

> so

> > > > nice

> > > > > lately! LOL LOL Just kidding. Sorry, have to have some

> > humor.

> > > > >

> > > > > Thanks for everyones well wishes, thoughts and prayers.

We

> > are

> > > so

> > > > > appreciative.

> > > > >

> > > > > - H

> > > > >

> > > >

> > >

> >

>