I am a GN student who has a 10 year old child with spastic quadriplegia CP, is 100% fed through MIC-KEY, has a nissen fundiplication, is non-communicative and is 100% dependent on all ADLS.

She is having increasing difficulty handling her secretions. She is pooling them at the base of her throat. She sounds like (pardon the comparison) Darth Vader wheezing/whistling on inspiration. Her pulse O2 sats are in the low 90's and her RR is 30-35 breaths per minute. She is on Robinol, Trilepta (for szr's), diazapem, Trazadone (for zzzz), Zyrtec; is neb'd with Albuterol and has a Flo-vent. None of the above meds are alleviating the problem.

I suction her extremely frequently, yet everytime I think I "got it this time", it starts over again.

I read somewhere that replacing a G-tube/button with a J-tube helps decrease the secretions in the throat. (I use the term throat because I am unaware of where she is pooling her saliva. )

HAs anyone heard of this? Does anyone out there have any suggestions on how to help her, other than using the standard aspiration precautions?

Any input would be great!

Wendy

Originally posted by wendellchef-rn

I am a GN student who has a 10 year old child with spastic quadriplegia CP, is 100% fed through MIC-KEY, has a nissen fundiplication, is non-communicative and is 100% dependent on all ADLS.

She is having increasing difficulty handling her secretions. She is pooling them at the base of her throat. She sounds like (pardon the comparison) Darth Vader wheezing/whistling on inspiration. Her pulse O2 sats are in the low 90's and her RR is 30-35 breaths per minute. She is on Robinol, Trilepta (for szr's), diazapem, Trazadone (for zzzz), Zyrtec; is neb'd with Albuterol and has a Flo-vent. None of the above meds are alleviating the problem.

I suction her extremely frequently, yet everytime I think I "got it this time", it starts over again.

I read somewhere that replacing a G-tube/button with a J-tube helps decrease the secretions in the throat. (I use the term throat because I am unaware of where she is pooling her saliva. )

HAs anyone heard of this? Does anyone out there have any suggestions on how to help her, other than using the standard aspiration precautions?

Any input would be great!

Wendy

I have nothing to suggest and I am sorry....How do you decide when enough is enough? Her days are filled with discomfort-they must be so long for her......

I currently work in LTC, we use scopalomine patches for excess secretions. One small patch is placed behind an ear and replaced every 3 days. Possibly decreasing her secretions will help with the problem.

Excellent idea! We also use scopolomine patches, usually for patients who have lost their swallow reflex. They sound so much more comfortable without the gurgling.

Could there be some sort of lung changes going on as well? A small pneumonia. I would suggest speaking to her MD to make sure there isn't something else going on. How do her lungs sound??????

I brought her to the doctors 10 days ago. She did have crackles in her RLL and diminished lung sounds on her right side. She has just finished her antibiotic therapy.

Thank you for the Scopolomine patch suggestions.

As for the person who responded to "let her go", get out of nursing!!!

I'd still doublecheck with her MD -- perhaps she still has some lingering pulmonary infection. Fine to ask questions on nursing boards ... but always check with your MD. Diagnosing is not part of nursing scope of practice (although nurses are usually "right on target.) Nevertheless, sort through any advice you get -- and decide what you would like to ask her doctor. And never forget ... that you know your daughter better than anyone else ... you are her best advocate. God bless.

Between nursing school and your daughter's chronic medical condition ... make sure that you find support for yourself.

Originally posted by wendellchef-rn

I brought her to the doctors 10 days ago. She did have crackles in her RLL and diminished lung sounds on her right side. She has just finished her antibiotic therapy.

Thank you for the Scopolomine patch suggestions.

As for the person who responded to "let her go", get out of nursing!!!

Sorry if I offended....I have been in nursing for many yrs and have faced these issues personally.I consider end of life issues the most important part of my job and do everything within my power to help families come to terms with this... I did not suggest to"just let her go" I was asking if it is time to start looking at quality of life versus quantity....That is the reality of nursing and needs to be brought to the forefront of every care plan.....not hidden....

Thank you for your response!!

She probably still does have a lingering infx of the lungs. I'll call her pediatrician tomorrow. (Monday) The weird thing is, just 4 days ago, we saw an ENT and he gave her a clean bill of health.

She was originally put on Gantrisin daily to get rid of lingering bugs from an ear infection she had a month ago. Her pediatirician had me put her back on it now that the omnicef is completed. For some reason, though, her body just doesn't respond well to antibiotics. They never seem to completely clear up any infection. I

The reason for my posts is because the pediatrician is even scratching her head on what to do. She treats many disabled children and told me she sees this all of the time. I asked her about seeing a pulmonary specialist and she told me Amanda isn't ready for that yet. She told me she would still write the referral, but at this point it would be a waste of time.

Last night, my daughter scared the heck out of myself and my husband because her throat congestion was worse than ever. When I sat her up at a 90 degree angle, it went away, but lying her back down, it came back. To get her at a 90 degree angle, I had to hold her from behind and support her head with my hand to keep her at this angle which is a very tiring position, especially since I am pregnant. We put wedges under her that raised her to about a 30-35 degree. I haven't been able to find a way to elevate her more than that without her sliding down to the base of the wedge.

Anyway- I really thank you for your responses. They help!!

Wendy

Has the anatomy changed in any way that could be evaluated by some sort of radiological exam? If the pediatrician says she sees this "all the time," and it didn't used to happen w/Amanda before, is there then some sort of change that occurs over time, that can be appreciated by, say, CT or MRI, or some other exam? Is there erosion/scar tissue, --- I don't know what.

And, what exactly happens to the saliva when she's 90 degrees up-- where does it go, and why won't it go there when she's supine or slightly elevated? Radiology might possibly do a modified gastrograffin "swallow," tilting the table upright to see where the heck the stuff goes . . . and if it's obstructed unnaturally from going where it ought when she's supine. . .

Bless you and yours, and I hope a solution is found. -- D

Have you tried the positioning I have used a few times for Flash pulmonary edema? I put a pillow (or two) on top of a bedside table and dangle the feet off the bed and lean the patient over the table placed just above waist so the pillow supports the ribs and chest but the secretions can dribble out till the ambulance gets there. (plus it takes some of the edema to the feet)

can be used with wheelchair if needed too.

I am not sure what equipment you have available at your home so these are just suggestions for positioning in acute respiratory crisis without a lot of physical support from the care taker.

I also am not sure about contractures and positioning problems you are dealing with but this might be revisable to your benefit with some thought.

Good luck and you have my prayers.

you might want to consult a speech language pathologist to give you some advice. They are the experts when it comes to swallowing problems.

I urge you to rule out temporary causes of this problem, but you need to take into account the possibility that this is not a temorary change -- that there has been a neurological deterioration. It's incredibly sad when someone loses their swallow reflex, and I know the feelings of utter helplessness that you feel. You just want to do SOMETHING to help her, but unfortunately there aren't a lot of options other than positioning and anticholinergic medications. In my line of work where aim our care at providing symptom control and comfort care, this is usually a sign that there is a significant deterioration and the body is "asking to be let go", and it's time to stop heroic measures. As for scopolamine patches, They are usually a very effective short term treatment, but eventually lose their effectiveness. I can't imagine the discomfort of feeling as if I was drowning all the time. YOu could try using a route other than transdermal. Atropine always helps.