Re: breathing issues- to

[Guest guest]

-Hi

Remind me again what Kirk's trouble with secretions is? Are they too

thick? Too much? Drool going down the wrong pipe?

Yep postural drainage is big here too. still coughs on her

own sometimes but not nearly deep or frequent enough to keep the

gunkies under control. We find that IV hydration helps A LOT. Keeps

the secretions thin if she's well hydrated. spits out her

saliva if she can't swallow it. This is a conscious thing and we're

fortunate that she can cognitively do this. I've heard about robinul

and scopolamine and I guess there's surgery that can dry up saliva.

We haven't looked into it at all.

CPT works but my arm is killing me. We've been doing it every 4

hours around the clock since Tues morning. We hadn't done it for

over a month prior to that. If we have to keep this up we would look

into the Vest for her. Would your insurance cover it? We do

pulmocort nebs twice a day when she's well, and 3 times a day plus

xopenex every 4 hours when she's sick. We're trying to hold off on

antibiotics because she has c diff flareups whenever she's on them.

Plus she has major yeast issues and we want to keep it under

control.

I hear you on the 24 hour care. I'm glad you have good nursing

coverage usually. It makes such a big difference! has 2

nurses who each do about 20 hours and they're both great. But,

's roughest time is about 6pm to 1am and we never have nursing

at that time. She's been sleeping in her Kimba stroller in front of

the TV for part of the night because she's more upright and I say to

**** with bedtime routines and the problems with getting a child

dependent on sleeping in front of the TV! We pop in an elmo video

and let her watch it over and over until she goes to sleep. She can

discuss this with her therapist when she's an adult, LOL. Same goes

for the binky, which she can bring to college for all I care.

Hang in there!

Heidi, 's Mom

-- In Mito , Kilbride wrote:

> Hi Heidi;

>

> I don't have any experience with CPAP but

> Kirkland's breathing problems seem to mirror those of

> . I don't know if you noticed but I just

> posted for ideas on secretion control as we try to be

> able to manage Kirkland at home.

> He's been getting nebulizer treatments at home

> since last Friday and they seem to be helping him

> cough up more. I'm just hoping that this might keep

> his pneumonia at bay. He finished his last dose of

> clindamycin on Sunday and usually within 24 hrs, his

> breathing's so bad we need to take him in to hospital.

> So far, we're managing at home but it's requiring

> constant monitoring and postural drainage positioning.

> It's becoming a fine Art to get him to cough. I

> too have good home nursing but one of them is on

> holidays and I'm heading into 2 days of 24 hr nursing

> on my own this weekend. It's exhausting and I'm not

> looking forward to it. I just had a duplicate stint

> last week-end.

> Little by little Kirkland's becoming too difficult for

> my husband to manage so this gives me very little

> breathing space when the nurses aren't here.

> I just wanted you to know that you aren't alone.

> I'll be interested to look at the replies to your

> e-mail too.

>

> Take care,

> , mom to Kirkland 3.5 yrs, Complex One Def.

>> > Thanks

> > Heidi, 's Mom

> >

>