things going wrong

[amber682]

 I realize this may be a sensitive topic, so please bear with
me. I saw something on tv a while back about a teenage girl with cf
who was in the hospital for a tune up. Last I saw she was sitting
on the bed with her legs crossed indian-style chewing gum while
someone did CPT to her back. I got distracted by my son and left
the room during a commercial. By the time I got back to watch it,
she had died. I don't know what happened, she seemed well and
looked good. It always bugged me that I didn't know why.<br>
    I've recently read a few peoples posts or
blogs about this happening to loved ones. (I mean going in for a
tune-up and unexpectedly not coming home.) Please believe I do not
want to dredge up bad memories or make anyone upset, I am just
wondering what went wrong so bad so fast. I'm sorry to even bring
it up, but I keep thinking about it since the dr. said he will
admit my son for a picc line and bronchoscopy  next week if
he's not back to 100%.

 

[Jane]

That's one of the weirdest things about CF, kids usually don't look sick. Although sometimes there can be rapid decline in health, its pretty rare for someone to go in for a clean-out and not come home. She could have been pretty sick to start with. The interview could have been done earlier in her illness, many years earlier.

It IS unnerving to see this happen. Before my kids were sick with their cf issues, I had a girl in school with CF. She was lovely and energetic, a cheerleader. I used to hope my kids would stay as healthy as she was. During her senior year she started having more frequent clean-outs. Her freshman year in college she got a bacterial infection that went into her blood. She died later that year. I remember thinking, how does that happen so fast?

Its a hard topic to talk about.

 

[LisaV]

Jane writes "bacterial infection that went into her blood". Scepticimia. That's what my husband died from while he was in pulmonary rehab.

It is hard to talk about. And, unfortunately, it does happen....even with the most expert of care.

 

[NoExcuses]

.

 

[amber682]

Thank you all, I know its a hard topic. I wondered all night last
night if I should have even asked, I felt bad about it.

 

[mneville]

Amber- I think I saw the same one but she didn't die. At the end of
the one I watched, the narrator said she finally decided to get a
port and was currently on the volleyball team and doing well? But I
clearly remember her sitting on the bed getting CPT chewing gum-
she was a cute kid.<br>
<br>
<br>
On a positive note- we just came back from a trip to Minnesota to
see Dr Warwick. He is certain that  Aidan (23 months) will be
around to take care of us in our old age! So I think we all need to
believe that for our children. Warwick firmly believes that the
right preventative treatments can keep our kids just as healthy as
a kid without CF. I would definetly look into getting the VEST for
your son. Warwick's company Incourage makes vests for the little
ones. The sooner you get him used to it, the better. Aidan wears
his an hour a day with no problem. We think that will add years to
his life.<br>
<br>
Megan

 

[amber682]

I'm really wanting a vest. My son just switched cf centers, we just
met the RT last visit. I asked about it, she said they usually
start it around age 3, but then said we like to get kids off of
manual CPT as soon as possible because its difficult with the
little ones. I think I'll ask her every visit because I'd like one
sooner. Its hard to do CPT on a toddler, and I usually feel like
I'm not doing a good enough job. My hands are too big for his small
back to always get that nice cupping sound. Plus he's a
wiigle-worm! I don't want it because its easier for me, but rather
better for him, ya know what I mean?<br>
<br>
I wonder if we saw the same show and I missed more than I thought I
did? It may have followed more than one person's story and I got
confused? I know at the end of the show a doctor was saying how
stubborn cf kids are I think because they've done the hospital
thing so many times. Anyway, I hope it was the same show and I was
wrong.  

 

[NoExcuses]

.

 

[LisaV]

Amy is right that sepsis is quite uncommon in the early stages of CF.
In the later stages when one is almost bedbound tho' it is quite common - much more common that death by car accident.

 

[karon72]

Amber,

When I do manual CPT on Erin (4), I use oxygen masks with tape on the hole where the oxygen when come in. Our RT gave us some when Erin first started doing CPT. It is much easier than trying to cup your hands on their small little backs. To clarify, they are the masks used in surgery, not nebulizer treatments.

 

[2005CFmom]

Amber,

Our clinic gave us these rubber cups for doing CPT (I'll try to attach a picture at the end). They are called Manual Percussors. They make doing manual CPT much easier (in my opinion) and I believe they come in different sizes.

<img src="http://i40.photobucket.com/albums/e213/2005cfmom/20068030.jpg">

<a target=_blank class=ftalternatingbarlinklarge href="http://www.allergysupply.com/proddetail.cfm?CFID=2678816&CFTOKEN=54575573&ItemID=64&SubCatID=10">Link to a site that sells these</a>


I hope you are able to get a VEST soon though....we just got ours about a week ago!

 

[amber682]

Thank you guys, the PT kills my arms sometimes. I actually was
using one of those masks for a long time, from diagnosis at 4 mos.
until I'd say a few months ago. The dr. at the clinic had wanted me
to start using my hands, he said it was better. (I'm not sure I
agree 100%) I'm not sure how the dr. (or RT) thinks of it at the
new clinic, we've only been twice, last week and the week before,
and we haven't got to discuss much because we're being squeezed in
for sick visits to clear up this exacerbation and focusing mainly
on that. (The dr. did apologize for this and promises our usual
visits will be much longer and we'll discuss much more)<br>
I did ask about the vest, I think I may have to be a little pushy
about that one, they think age 3. I don't see why not now, he's
over a year and a half and not small for his age (like too small
for a vest) If they are going to make me wait, I think I'd like one
of those percussors.<br>
 Thank you for all the info, very helpful! By the way, do
those percussors remind anyone else of the pieces you use to play
the boardgame "Sorry" ? I think that's kinda ironic!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

We were given a teeny tiny percussor for DS was he was diagnosed as a newborn. But his doctor also encouraged us to use our hands. I think his philosopy was "you will always have hands", what if you lose a percussor. They do make a cool popping sound when you use them though. Sometimes I felt like I was slapping DS and not doing an adequate treatment when I used my fingers/hands.

 

[amber682]

That's exactly it, I feel like its more of a slap than a cupping
sound sometimes. I just don't feel like its the best airway
clearance technique he could be getting.

 

[anonymous]

I'm 18 now but when I was a baby my mom used the "manual percussioner" We called them the clappy things. but They work really good, I have used everything and I don't really like any of them I mean acapella gives me a headache and the vest makes my chest area hurt and very sore for about 45 minutes after a treatment... Has you kid tries the vest yet? If not you aught to let him before investing the money into one b/c he may not like it.

 

[anonymous]

Are yetalkin about the episode on Channel 4 i think ! It was following two girls journey to transplant ! And this girl who was 28 was only a minor past of the documentary and the reason she died was b/c she had her own reasons to not have a transplant she needed! She died nine days after talking on camera ! Hope this helps !!!!!!!!!!!!!

 

[anonymous]

Are yetalkin about the episode on Channel 4 i think ! It was following two girls journey to transplant ! And this girl who was 28 was only a minor past of the documentary and the reason she died was b/c she had her own reasons to not have a transplant she needed! She died nine days after talking on camera ! Hope this helps !!!!!!!!!!!!!

 

[anonymous]

Are yetalkin about the episode on Channel 4 i think ! It was following two girls journey to transplant ! And this girl who was 28 was only a minor past of the documentary and the reason she died was b/c she had her own reasons to not have a transplant she needed! She died nine days after talking on camera ! Hope this helps !!!!!!!!!!!!!