To Pat

[Guest guest]

Hi Pat,

If is refluxing and potentially aspirating even tiny amounts

of gastric contents into his airway, his cough is protecting his

lungs by attempting to propel anything in his airway out so it

doesn't reach his lungs. Is his fundo completely undone? If it's

only partly undone it could still partially protect him from reflux.

Does he eat by mouth? If so, does he swallow effectively or could

some of the food be trickling down into his lungs from above? Has he

had a swallow study to make sure it is safe for him to eat by mouth?

Jillie coughed and retched all the time prior to her fundo and for a

year after! She has a small airway and easily collected secretions

in the back of her nose and throat which would further make her

cough. Her pulmonologist put her on ATROVENT (ipratropium) nasal

spray which dried up the secretions which helped her cough. Further,

adding periactin later helped stopped her retching and this helped

stop her coughing. After the fundo, I knew she was no longer

aspirating and the cough was part secretions, part retching and part

habit. Nowadays, she coughs easily but not daily. You cannot be sure

isn't aspirating. A fundo or GJT would stop his potential

aspiration and prevent further lung damage. Is he too sick to

undergo either procedure? The meds he's on are good but won't stop

reflux - they just change the pH of the acidic reflux so the reflux

isn't quite as caustic to the lining of the esophagus (food pipe).

Jillie was quite ill prior to her fundo but was aspirating gastric

secretions even though she was on IV fluids and not allowed to eat

and having her stomach continuously drained. She underwent surgery

despite the risks of anesthesia because it was more dangerous to not

do it. Do you know why 's fundo came undone? Was he retching

a lot or coughing constantly? I wonder what percentage of fundos

come undone. I was told it was a low percentage but never actually

looked up the incidence nation wide. Would the surgeon who did

's first fundo, do the repeat??

I hope the little guy feels better soon and that Dr H has some magic

she can suggest if the fundo and GJT are not possible now. Atrovent

nasal spray may help if he's junky but that's my only yseful

suggestion. The rest of my rambling is thinking out loud!

Oh and by the way, according to your Mom, wouldn't suit me

either as I'm anything but petite at almost 6ft tall (and

unfortunately not thin anymore)!!

Can't wait to meet young and yourself in person! Have a safe

trip.

> Hi ,

>

> We are sure that 's problem IS reflux. We just don't seem

to be able

> to get a handle on it.

>

> has always had lung problems of some sort. He was

hospitalized

> frequently as an infant for bronchiolitis and/or aspiration

pnuemonitis.

> He's had a ton of problems with adalektisus (sp??) He has always

had a

> problem with retracting to some degree. His respirations usually

sit

> somewhere in the 50-60 bpm range.

>

> He had a severe case of RSV when he was 11.5 months of age. It

resulted in a

> 5.5 week hospital stay, 4.5 in the PICU, and 3.5 weeks on a vent.

He has

> been diagnosed with asthma, RAD, and has severe scarring of the

lungs due to

> all his problems early in life.

>

> We have been controlling his breathing problems this winter with a

regimen

> of Pulmicort 2xdaily, Singulair daily, and Zopenex added as

needed. It

> worked well for most of the season, but about 3 months ago, he

started with

> this cough, and we just haven't been able to get rid of it.

>

> We are currently attempting to control his reflux with a

combination of

> Prevacid and Zantac. We're going to ask Dr H for other ideas when

we see her

> at the convention. She has already recommended having his fundo

redone, or

> running a GJ, but that isn't possible right now.

>

> I just thought I would see if anyone else had any other

suggestions, or

> ideas for different meds, that we haven't yet tried. It's really

frustrating

> when everything you try doesn't work!

>

> Can't wait to meet you in person!!

> Pat (g-ma to , RSS, 30 months, 21.4#, 30.6 " , G-Tube)

>

> PS - Funny aside here. I was supposed to be named Lynn,

but when I

> was born weighing 8# 4oz, my mom changed my first name to

. In her

> mind's eye, a was a very small, petite, fragile-looking

little

> girl, and I was anything but! LOL Did she get it right????