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Tuesday, December 11, 2012

Broken Femur!

Rebekah has been doing great physically and we had her doing sit to stand with support and standing against a couch with minimal support. My dreams of her walking one day are getting closer and closer!  We've been coordinating with her therapists to maximize efforts to train her body towards this goal - weight shifting, stomping one foot at a time, and learning to use both sides independently. Things were looking good until...
Rebekah with a broken femur, in a half-spica cast (over one leg only and around the hips).

We never thought Rebekah had an issue with her bones! Yet here we are with a broken femur derived from her daily regiment of calf and hamstring stretches. And having a broken femur is not taken lightly. Her break, which occurred about 1/4 of the way from the top of the femur (at groin level), was considered a "trauma fracture". The immediate response is to look for child abuse, so they ordered a bone scan and a vitamin D test to determine if Rebekah has any signs of previous breaks. There were none, of course.  Even a forensic radiologist/pediatrician was called in to look at the "evidence".  The final report was "hypodense and gracile bones" and that it was very probable that this break did occur as reported.

Here is some information about osteoporosis and general statistics.  And here is a good reminder for anyone taking medications, especially our kids whose chromosomal abnormalities often exacerbate the potential side effects of those meds: Don't Take That Drug Without the Right Supplement.

I kept asking the doctors about a bone density test (BMD - Bone Mineral Denisty), but they did not do one because they said the numbers are not accurate for pediatric patients. Bone density tests are special x-rays that measure calcium and minerals.  The most commonly used BMD test is called a DEXA scan. The BMD is reported in terms of a T-score. A normal T-score is anything better than -1, osteopenia starts with a T-score of -1, and osteoporosis starts at -2.5. However, these numbers refer to adults, and there aren't really comparable numbers for toddlers.  According to a conversation with Dr. John C. Carey (Professor, Geneticist, Author of hundreds of medical papers, Medical Advisor for SOFT - Support Organization for Trisomy 18, 13, and Related Disorders, and a great friend/advocate to the trisomy community!), many trisomy 18 kids have been reported to have BMD  T-scores of -3.

So I kept digging for more information. Commonly listed characteristics or health problems of trisomy 18 children include reflux, weak muscle tone, heart defects, kidney defects, neurological issues, among many other things. Even if health is great, diet is great, and bones appear to be developing normally, children who are nonambulatory have weaker bones and lower tone than typical kids. Also, what the lists don't tell you is that there are additional risks associated with the treatment of these health issues. Many of the medications given to address these health issues can affect other parts of the body.  For example, throw in proton pump inhibitor meds for reflux, and guess what... you have a potential recipe for brittle bones!  (In 2011 & 2012, the FDA issues some warnings regarding PPIs and the potential for bone fractures and breaks.) I did not really connect the dots to any of this until we experienced a broken femur and started researching different reasons why trisomy kids' bones seem to break easily.

A few days after Rebekah was casted, I spoke with our nursing agency's nurse supervisor about Rebekah's care in the spica cast. She reminded me about changing positions every 2 hours. I remembered reading that in the pamphlet, and figured it was to prevent sores, issues with pressure points, etc. She said to make sure some of those positions are sitting up as best as we can do (which is very difficult since they casted her leg with two angles - one at the hip and one at the knee. Best we can do is about a 45 degree sitting angle.)  Anyway, she told me the positioning change is to PREVENT PNEUMONIA. I didn't realize that. She suggested CPT too. Well, got me thinking... so many of our little ones are prone to pneumonia. I wonder if it is partially because they are lying down too much and not getting moved into different positions? Plus, maybe every little one should get CPT as just general care early on?  

Anyway, I see trends and correlations between all these things! I hope passing along this info helps other families as they face different health issues and risks associated with trisomy 18.

Saturday, December 8, 2012


Model 7305 with original
(discontinued) canister.

If you have an older gray DeVilbiss suction pump (7305 Homecare Suction Unit), or even if you recently switched to a newer pump, you probably have noticed that the canisters have changed and the filters are now BUILT INTO the top of the canister lid. This new design was made specifically for their new pump - Vacu-Aide Quiet Suction Unit but they made the design to also fit the gray machines and have stopped producing the old canisters with the external bacteria filter.
Vacu-Aide Quiet Suction with
new multi-model canister.


Here is what happened to me -
My trached child, Rebekah, vomited in the middle of the night.  As all parents of trached kids probably fear, my worst nightmare was realized - it went INTO her trach and she aspirated.  I went to suction her, and the motor was working but the tubing had no suction. The canister appeared to be occluded. I had just replaced the canister with the new canister model that I received with my monthly supplies. I thought maybe I had installed it incorrectly. Let me tell you, I panicked! Thank God I kept an old canister and I was able to grab the old one, switch to the old filter, and I was able to get her airway cleared.

I wash my canisters religiously and even before first use. I have personally destroyed 3 of the new filters before even using a canister successfully because I washed the lid and did not remove the top piece with the filter. After all, there were no instructions, no warnings, how was I to know? I always wash my canisters daily, even before first use. My daughter doesn't need constant suctioning, so it wasn't until the next situation that I finally realized the problem - THE FILTER WAS DESTROYED AND OCCLUDED THE CANISTER.

So I am now trying to remember (after 3 1/2 years of using the old canister system) to remove the top part of the lid with the filter. Last time I did this by the sink where I was washing the rest of the canister unit, guess what happened? Yep, the piece with the filter fell into the sink too and got wet.

What a poor and DANGEROUS design!! AND WHY DID I NOT KNOW ABOUT THIS CHANGE?? There was no instruction, no warning, no information whatsoever on how to use the new style canister. My DME didn't know to order extra "new" filters for me or tell me not to wash the top connector to the lid. I did not know to call the company for instructions or look on the website.

So I called DeVilbiss Customer Service to complain and warn them that this topic has come up on several special needs boards. I explained that I need a filter ASAP.  I am told the part number to order more filters (7305D-635 for a pack of 12). Well, that's NICE, but what if I had not had an old canister/filter lying around? It's "nice" that I can order more filters, but that certainly didn't help the immediate situation. I did search for quite some time online for these filters. All of the online suppliers, even nextag and amazon, only have the OLD filters! So I don't even know where you are supposed to purchase these.  Bottom line, if I didn't have an old canister, I would've had to call 911 and my daughter might have ended up with aspiration pneumonia, or worse.

But back to the call... I also asked customer service why there was no warning or instructions. I was told the online FAQs for the Vacu-Aide Quiet Suction does say that a wet filter will occlude the canister. Sure enough:

Q7: When should the filter of the disposable canister be replaced?
A7:   1. If it becomes wet (it will immediately occlude when wet)
         2. Between patients
         3. When disposing of a used canister (the filter actually becomes a plug for the suction
canister when disposed of)
However, this isn't even my model! I have the 7305. It is no where to be found on my model's FAQs. In fact, the manual and the picture for my model still have the old canister and filter system (which is no longer being made). But the an improved 7305 model IS still being made. So why isn't this vital information updated and posted on the website? Once again, the info is with the new pump info. 

I did find an example of the old versus new canister set up: DeVilbiss Disposable Suction Container Kit Configuration.

So, if you have a DeVilbiss pump, please call them and tell them:

  1. The new design is unsafe, 
  2. The marketing regarding the new canister is terrible, 
  3. The instructions and warnings for use are missing,
  4. The filters are difficult to find, and 
  5. Every bottle should come with an extra filter "just in case" you accidentally drop your canister and get the filter wet, wash the whole lid, or knock the filter top into the sink (like me).

Here is the customer service number: 800-338-1988