Jump to content
RemedySpot.com

Re: 's finally home

Rate this topic


Guest guest

Recommended Posts

Cheryl, thank you for the update on ; I am glad

that it went so well, and that he did not miss the holiday,

in fact sort of had two--now, YOU get your rest!

Love to you and to yours, and cfparents,

n Rojas

's finally home

> Hi all, Well..both Matty and mommy have survived the first hospital

> admission. He cultured PA and had the 10 days of IV antibiotics. We

> got home a day early, which was great. He must have had about 8-9 IVs

> done on him while in the hospital. He lost another one on Friday

> morning so the doctors said go home. We were pleased. was able

> to trick or treat with his brothers. It's just so nice to sleep in my

> own bed. He is on inhaled Tobi, which is added to his ventilin and

> polmicort. I haven't heard him cough in a while now, it's nice. We go

> back to clinic on the 14th, they said they would do another culture

> then, fingers crossed its clear.

>

> I met so many wonderful people and children at the hospital. I took

> trick or treating at the hospital before we left for home. It

> was an opportunity to see all the children who are in the hospital, it

> was nice to see them all out enjoying themselves, if that's even

> possible in the hospital. It was also sad though, a lot of them did not

> look so good. It makes me think sometimes that I am lucky that Matty

> has CF and not something else. Don't get me wrong though, CF sucks.

> It's just so scary to see these young kids with tubes and wires and meds

> everywhere. It's a sad thing to see.

>

> Enough depressing talk, hope everyone is doing well. I am hoping for a

> good finish to this year. Trying to get thru each day, being thankful

> for the things I have and appreciating everything and everyone in my

> life.

>

> Cheryl, mom to 3 boys, Zac 7 yrs wocf, Jake 3 yrs. wocf, Matty 21 mos.

> wcf

>

>

>

Link to comment
Share on other sites

I am happy you're home with your precious family & that Matty had a fun

time in spite of it all. Your experience was a better one than you had

thought & that is a super happening!! Stay well & have a really nice

holiday time ahead!

LOVE & HUGS, grandmomBEV

's finally home

Hi all, Well..both Matty and mommy have survived the first hospital

admission. He cultured PA and had the 10 days of IV antibiotics. We

got home a day early, which was great. He must have had about 8-9 IVs

done on him while in the hospital. He lost another one on Friday

morning so the doctors said go home. We were pleased. was able

to trick or treat with his brothers. It's just so nice to sleep in my

own bed. He is on inhaled Tobi, which is added to his ventilin and

polmicort. I haven't heard him cough in a while now, it's nice. We go

back to clinic on the 14th, they said they would do another culture

then, fingers crossed its clear.

I met so many wonderful people and children at the hospital. I took

trick or treating at the hospital before we left for home. It

was an opportunity to see all the children who are in the hospital, it

was nice to see them all out enjoying themselves, if that's even

possible in the hospital. It was also sad though, a lot of them did not

look so good. It makes me think sometimes that I am lucky that Matty

has CF and not something else. Don't get me wrong though, CF sucks.

It's just so scary to see these young kids with tubes and wires and meds

everywhere. It's a sad thing to see.

Enough depressing talk, hope everyone is doing well. I am hoping for a

good finish to this year. Trying to get thru each day, being thankful

for the things I have and appreciating everything and everyone in my

life.

Cheryl, mom to 3 boys, Zac 7 yrs wocf, Jake 3 yrs. wocf, Matty 21 mos.

wcf

Link to comment
Share on other sites

Sara - I don't have advise for a 2 yr. in a hospital but with the Tobi try to

get him to wear the mask while watching his favorite tape. I love the mask.

It helps lungs and sinus cavity.

I am sorry about the PA.........its better you know so you get treat it

---otherwise you could get scar tissue.. When I found out grew it I cried

for

an hour!!

CF - is like a ladder - we keep going up the steps............

Rosemary in NY with 3 children (13, 10.11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

Link to comment
Share on other sites

Hi Cheryl,

Zach's doc just called and told us Zach has Psuedonomas. This is

our first time. The doc says we will do 28 days of TOBI and

reculture. If it is still there we are going in for IV's. This

scares me, but I do want this treated agressively.

Any advice you can give me for handling a 21 month old in a hospital

would be greatly appreciated and I hope I never have to use the

advice!

Sara - mommy of Zach almost 21 months

> Hi all, Well..both Matty and mommy have survived the first hospital

> admission. He cultured PA and had the 10 days of IV antibiotics.

We

> got home a day early, which was great. He must have had about 8-9

IVs

> done on him while in the hospital. He lost another one on Friday

> morning so the doctors said go home. We were pleased.

was able

> to trick or treat with his brothers. It's just so nice to sleep

in my

> own bed. He is on inhaled Tobi, which is added to his ventilin and

> polmicort. I haven't heard him cough in a while now, it's nice.

We go

> back to clinic on the 14th, they said they would do another culture

> then, fingers crossed its clear.

>

> I met so many wonderful people and children at the hospital. I

took

> trick or treating at the hospital before we left for

home. It

> was an opportunity to see all the children who are in the

hospital, it

> was nice to see them all out enjoying themselves, if that's even

> possible in the hospital. It was also sad though, a lot of them

did not

> look so good. It makes me think sometimes that I am lucky that

Matty

> has CF and not something else. Don't get me wrong though, CF

sucks.

> It's just so scary to see these young kids with tubes and wires

and meds

> everywhere. It's a sad thing to see.

>

> Enough depressing talk, hope everyone is doing well. I am hoping

for a

> good finish to this year. Trying to get thru each day, being

thankful

> for the things I have and appreciating everything and everyone in

my

> life.

>

> Cheryl, mom to 3 boys, Zac 7 yrs wocf, Jake 3 yrs. wocf, Matty 21

mos.

> wcf

>

>

>

Link to comment
Share on other sites

I cried too. I am glad I am not the only one. I was afraid I was

overreacting. I am going to ask for the mask. I think Zach will be

better with that then trying to hold something in his mouth.

Getting the tobi in the sinuses is a good idea too. Zach has a lot

of ear infections too.

Sara

> Sara - I don't have advise for a 2 yr. in a hospital but with the

Tobi try to

> get him to wear the mask while watching his favorite tape. I love

the mask.

> It helps lungs and sinus cavity.

>

> I am sorry about the PA.........its better you know so you get

treat it

> ---otherwise you could get scar tissue.. When I found out

grew it I cried for

> an hour!!

>

> CF - is like a ladder - we keep going up the steps............

>

> Rosemary in NY with 3 children (13, 10.11 and 7)

> with CF. I have a dog named TOBI and have

> coined the phrase " BREATHE DAMMIT "

>

>

>

Link to comment
Share on other sites

Hey Sara,

I am sorry to hear that, that is what had too. I hope that the

inhaled Tobi will clear it. Because was having trouble

breathing they decided to admit him and treat it intravenously. But if

we had just gone to clinic and his culture had come back positive for

pseudomonas, they would have just sent us home on inhaled tobi.

As for advise on the hospital stay, bring lots of books for you and your

son. We watched Barnie, I swear, a million times. Lots of yummy snacks

too. I am in the process of designing a hospital gown that is a little

more IV friendly for toddlers. Matty always had pee pee over flow in

the morning and it was so hard to change him because of the IV thru the

gown. I am hoping that my design will work. I am going to make a couple

and take them to the hospital for a few moms to try for their kids.

I'll let you know what they think in case you or anyone else wants one.

I am learning to use a sewing machine for the first time. Should be

interesting.

When was Zach born? is 21 months tomorrow.

Cheryl, mom to 3 boys, Zac 7 yrs. wocf, Jake 3 yrs. wocf, 21 mo.

wcf

Re: 's finally home

Hi Cheryl,

Zach's doc just called and told us Zach has Psuedonomas. This is

our first time. The doc says we will do 28 days of TOBI and

reculture. If it is still there we are going in for IV's. This

scares me, but I do want this treated agressively.

Any advice you can give me for handling a 21 month old in a hospital

would be greatly appreciated and I hope I never have to use the

advice!

Sara - mommy of Zach almost 21 months

> Hi all, Well..both Matty and mommy have survived the first hospital

> admission. He cultured PA and had the 10 days of IV antibiotics.

We

> got home a day early, which was great. He must have had about 8-9

IVs

> done on him while in the hospital. He lost another one on Friday

> morning so the doctors said go home. We were pleased.

was able

> to trick or treat with his brothers. It's just so nice to sleep

in my

> own bed. He is on inhaled Tobi, which is added to his ventilin and

> polmicort. I haven't heard him cough in a while now, it's nice.

We go

> back to clinic on the 14th, they said they would do another culture

> then, fingers crossed its clear.

>

> I met so many wonderful people and children at the hospital. I

took

> trick or treating at the hospital before we left for

home. It

> was an opportunity to see all the children who are in the

hospital, it

> was nice to see them all out enjoying themselves, if that's even

> possible in the hospital. It was also sad though, a lot of them

did not

> look so good. It makes me think sometimes that I am lucky that

Matty

> has CF and not something else. Don't get me wrong though, CF

sucks.

> It's just so scary to see these young kids with tubes and wires

and meds

> everywhere. It's a sad thing to see.

>

> Enough depressing talk, hope everyone is doing well. I am hoping

for a

> good finish to this year. Trying to get thru each day, being

thankful

> for the things I have and appreciating everything and everyone in

my

> life.

>

> Cheryl, mom to 3 boys, Zac 7 yrs wocf, Jake 3 yrs. wocf, Matty 21

mos.

> wcf

>

>

>

Link to comment
Share on other sites

Zach was born 2/8/2002. Matty and Zach are really close in age.

Zach has a morning overflow problem too, so I will keep that in mind

if we are sent to the hospital. Let me know how the gowns turn

out. That might be a really helpful thing to have.

Zach loves books and Elmo, so maybe that would keep him

entertained. We would also try to arrange some visitors so that

Zach wouldn't get too bored with just MOM, like ususal.

I just had a thought. Would attaching a velcro closure to a childs

bathrobe work for a hospital gown?? I am not sure how the iv's are

attached so I have no idea if this could really work, but it just

popped into my head.

Thanks for the advice. I will let you know how our TOBI experience

goes.

Sara

> > Hi all, Well..both Matty and mommy have survived the first

hospital

> > admission. He cultured PA and had the 10 days of IV

antibiotics.

> We

> > got home a day early, which was great. He must have had about 8-

9

> IVs

> > done on him while in the hospital. He lost another one on Friday

> > morning so the doctors said go home. We were pleased.

> was able

> > to trick or treat with his brothers. It's just so nice to sleep

> in my

> > own bed. He is on inhaled Tobi, which is added to his ventilin

and

> > polmicort. I haven't heard him cough in a while now, it's

nice.

> We go

> > back to clinic on the 14th, they said they would do another

culture

> > then, fingers crossed its clear.

> >

> > I met so many wonderful people and children at the hospital. I

> took

> > trick or treating at the hospital before we left for

> home. It

> > was an opportunity to see all the children who are in the

> hospital, it

> > was nice to see them all out enjoying themselves, if that's even

> > possible in the hospital. It was also sad though, a lot of them

> did not

> > look so good. It makes me think sometimes that I am lucky that

> Matty

> > has CF and not something else. Don't get me wrong though, CF

> sucks.

> > It's just so scary to see these young kids with tubes and wires

> and meds

> > everywhere. It's a sad thing to see.

> >

> > Enough depressing talk, hope everyone is doing well. I am

hoping

> for a

> > good finish to this year. Trying to get thru each day, being

> thankful

> > for the things I have and appreciating everything and everyone

in

> my

> > life.

> >

> > Cheryl, mom to 3 boys, Zac 7 yrs wocf, Jake 3 yrs. wocf, Matty

21

> mos.

> > wcf

> >

> >

> >

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...