Re: To Much Again!!!

[Guest guest]

In a message dated 11/29/99 12:00:18 PM Pacific Standard Time,

svns@... writes:

<< I just need to vent----- We have 2 kids with cf. For those of you that

have more then one child with this how do you cope?? Even with one cf

child? It has been hard up till now. Now I would say it is more than

just hard!! I feel like my insides are falling apart! >>

Vicki!

I totally understand! My kids with CF are now 8 and 5. And yes, they

usually get sick at the same time! They haven't been hospitalized together

-- so far. At first, I thought that would be bad. But the last time

was inpatient, they kept checking Patty over to see if she needed to go in.

They almost hospitalized her 3 times -- INCLUDING the day he FINALLY was

getting out which happened to be 6 days before Christmas!

What I am getting at is, that yes it IS hard! And yes, sometimes I DO lose

it! One time was discharged on home IV's and they were both on

treatments four times a day! I really thought I was going to lose it! I

asked for homecare to come help me out. I knew that at that point in my

life, I couldn't do it without help!

Does their clinic have a Social Worker? Sometimes, talking to them can help.

I would be glad to give you my phone number! Or you can give me yours and I

will absorb a few long distant calls! Right now, you need to put yourself on

a schedule and deal with your days a piece at a time. Don't look at the big

picture if it is too overwhelming. This time of the year is hard enough!

Your reactions are pretty normal Vicki! Your are NOT a bad parent! You are

stressed and scared -- perfectly flipping normal! Sometimes you will be

stronger than other times. Try watching a sad movie -- crying may be

cathartic for you. If that doesn't work, try watching a funny movie or some

of your favs.

In your schedule, try to fit some down time for yourself. I know..... easier

said than done! I have three kids, two with CF. Luckily my " healthy " child

is older and very resilient and independent! Yours are younger so it can be

hard.

BUT, realize that YOU ARE NOT ALONE!!

Love,

Carol

[Guest guest]

Vicki,

Gosh, I am trying to figure out how to do a short reply on this one....I

guess I am not sure even still how we cope....day by day?

Carol, Angie and many others helped me cope in the early days, and everyone

more recently on this list help me daily.

The worst for us was last winter when was in the hospital til

Christmas Eve and I had to do all the shopping Christmas eve then stay up all

nite doing the tree and the santa thing! This year, I am already almost

done, having done catalog shopping, just in case we do a repeat of last year.

And it wasn't over at Christmas. We found out Christmas Eve that JOshua

cultured B. Cepacia from his bronch (and Maltophilia, but in the scheme of

things, we could have cared less about the Malto. back then...)and didn't

find out til end of January that it was a LAB ERROR (he def. did not nor does

he have cepacia) Anyway, then on Jan 29 or 30 Mallory was hospitalized for

RSV and we spend 2 weeks in an o2 tent (and I do mean we....me and Mall....)

But was admitted on New yrs eve for his central line (supposed to be a

picc line turned into femoral central line fiasco....) at a different

hospital, now that was a nightmare. The ped. felt so sorry for us that he

and his wife kept our other kids so we each could be with one kid....

Anyway, I guess I was really with two, since I was pregnant with ph at

the time, hehehe) Anyway, of course, we can't do anything simple at our

house, so in late Jan when Mallory finally came home after being moved to the

CF hospital and bronched, she came down with rotavirus the night she was

discharged, and then so did JOshua, so we did home IV fluids on Mallory for

two weeks (and horrid green pea diarhea) in addition to JOshua's home IV

antibiotics and had to add IV fluids to JOshua's. Thinking back, I have no

idea how we survived, but we did.

As far as daily routine, I suppose we just got used to it. Mallory has

always had to have lots of nebs, as early as 3 weeks was on nebs as often as

every two hours and was also on home oxygen off and on that first year (that

was not fun, trying to get her to cooperate with the nasal cannula) Anyway,

so we (and they...)got used to nebs as part of day to day routine. JOshua

has almost always been on 2-4 nebs a day when relatively healthy. When they

are doing well, we do cpt twice a day. ( now has the vest.) We added

PUlmozyme a yr ago and so are used to that now, and they have both been on

Tobi on and off 28 days since Feb. so we are used to that now, too. Tricks

for us, if that helps any, are that we use the pari baby masks and they hold

their own nebs, so really we just have to supervise more than anything. The

hardest (and yet the easiest) are the night time nebs. We have found that it

works better to do at least one set of nebs in the middle of the night (guess

who gets to do this?) while they sleep. So, before I go to bed, I do each

kids reg. neb (for Mallory, thats budesinide/ albuteral and atrovent, for

its nasalide/albuteral/intal) then I do their PUlmozyme, then cpt and

then the tobi if its a tobi month. I try (and most of the time this works)

to prop the nebs up with a stuffed toy or beanie baby for one of them, that

way I can do both their nebs at the same time (all in our kingsize bed) I

can usually even manage to breastfeed ph as long as one of them isn't

being unusually rowdy in their sleep. I watch satellite tv (usually the

brady bunch!) to kill the time...and stay awake (though when I was pregnant,

I admit I fell asleep more than once and Ron woke me up the next morning and

turned off the compressors...oops!) Ron does the AM nebs while they watch

Barney or whatever the craze of the day is.... Ron does Mallory's at

naptime during the day (which,by the way, is the only way you can get her to

take a nap now, anyway) and gets his at preschool at naptime (same

story, the teacher wishes she had " anasthesia " like 's for all the

kids...hehehe) then after bath, we just have a routine, they get all their

oral meds (bactrim which they are constantly on for maltophilia, adeks,etc.)

do nose spray (chased by ensure plus) than they get to get in mommy's bed and

do their nebs (just a regular neb, only 20 minutes) and watch cartoons on

satellite (the only time this privilege is bestowed...) Then later, I do

the midnite mask thing. Anyway, thats what works for us....

The enzymes, etc work out fine now that they both swallow them whole.

I guess the IV thing is the hardest because it isn't routine...hope we avoid

it this year thanks to Tobi.

I don't know if any of this helps. It must be harder if the kids haven't

needed nebs all along, because at least its just a fact of life for my kids

and they are so used to it they can do it themselves. My neice, , is

known to dump hers out, and she refuses the mask, but then they rarely do

nebs....so its what they know, I suppose.

I have no idea if any of this helps or not.

Mostly, I have found peace and comfort in the support I have gotten from my

online friends. Our local friends have absolutely no idea the grueling

schedule all of us on the list endure, they like to bitch about how hard it

is to get their kids to take the occasional antibiotic, so don't bother

looking there for support, huh?

Oh, and the doctor appt thing, all I can do is feed in.....with the Ent, we

wait hours and we see him every 2-3 months, the GI we also see every 2-3

months, the Pulm is hopefully every 2-3 months, though usually sick visits

require more often, and god forbid we have to take anyone to the regular Ped.

We did discover at this last visit, though, that that crayola magic foam is

great fun and a great way to occupy the kids while we wait (and I have also

been known to scare the receptionist at the ENT office into not making us

wait--you know, the ole, hey, did you know that my kids culture for stuff

that you do NOT want these other kids exposed to?) Bribe food always helps,

as do new toys that are time occupiers. ARen't your kids a little older?

Could you take along a bead babie kit for them to do? If you are really

desparate, get out your old stroller and load your tv and vcr on it and take

along movies (hehehe, but honestly, Ron threatened to do this at the last

appt.) If your appt is in the morning, don't feed them first, then feed

them in the exam room while you wait (we did that once, it worked great, they

were too busy eating to raise cain...)

OK, so I am out of ideas....

REmember, we do care about you though, so holler if you need to complain.

Hang in there

Jennie (enjoying the good times while they last....)

[Guest guest]

Hi Vicki,

I had been wondering how you were doing and had thoughts that perhaps

everything was going okay and that's why we hadn't heard more from you.

Guess not, huh? Without a doubt, you have your hands full. I hope you are

somehow managing some sanity breaks for yourself. Maybe we could all share

what we do to cope.

My coping mechanisms consist of trying to get out for walks, finding

something to laugh about, yelling at my ex-husband, laughing, sharing the

odd bottle of wine with a good friend, getting on-line and sharing a whine

with total but supportive strangers, and oh, did I mention laughing? I

also have a line of work where I can go and assist others in their

problems/conflict so at least I participate in some sort of resolution and

closure.

Focus on hanging onto the roller coaster and also finding ways to get a

break from it to allow some equilibrium. Hang in there - we're here for you.

In love, but only where there's laughter,

Mo

At 01:57 PM 29/11/99 -0800, you wrote:

>From: svns@...

>

>I just need to vent----- We have 2 kids with cf. For those of you that

>have more then one child with this how do you cope?? Even with one cf

>child? It has been hard up till now. Now I would say it is more than

>just hard!! I feel like my insides are falling apart! Ask me why now.

>Well this is the first time both kids have been on nebs 2 times a day

>and chest pt 2 times a day. One just gets done coughing at night and the

>other starts! It is so hard to have a sick child, but when you see both

>of your children going threw this it really is hard. I am sooooo sick of

>running up our credit cards with these meds to. It will just be a matter

>of time before that is maxed out!! It just seems to be to much right

>now. I am trying sooo hard to hold it together but I feel it getting

>ready to fall apart. I just sit and think...How are we supposed to

>handle this when things are even worse and they end up in the hospital

>(I know that day will come). How can parents stay strong for both their

>kids when they can not even hold it together for one?? Someone please

>tell me this cuz I would really like to know!! I do have faith in GOD

>But when you are calling the doctors, picking up meds, canceling their

>plans cuz the kids are sick, going in to the doctor with the kids,

>paying all these bills, staying up with a coughing child with no way to

>help them, it gets hard to have faith!!! I do good for about a month

>and then I get like this. Then to top it off I feel like a terrible

>parent cuz I am letting this get the best of me...But S>O>B this is hard

>and it is really not fair!! Why couldn't one of our kids have been

>healthy!!!!?

>Bye 4 Now

>Vicki (mom of 2 both w/cf 6 and 2)

>

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construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING

ANY MEDICATIONS OR TREATMENTS.

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