TRY-SO-MY LIFE... HAS MEANING

Trisomy 18 is a scary thing. Statistics sadly state that 90+% of the babies die before birth. That doesn't even include all of the babies that are aborted, which is probably already >90% of those that know about the trisomy 18 before birth.

There is a Hebrew word, Chai (חי). The numerological value to Hebrew letters, the letters Het (ח) and Yud (י) add up to the number 18. The Hebrew word and symbol Chai (חי) mean "life". So 18 = LIFE.

Trisomy 18...

TRI-SO-MY 18...

TRY SO MY LIFE... 

♥ TRY SO MY LIFE... HAS MEANING ♥

God bless all the parents who have given their trisomy 18 child's life meaning. It doesn't need to be counted in minutes, hours, days, or years. Each one is uniquely designed by God for a specific purpose.

Thank you to my new trisomy 18 friend, Tanya Meyer-Herrera, for sharing such a beautiful thought with me today. ♥ Please pray for her unborn trisomy 18 baby girl.

Please Vote For The Lift Assist Amazing Research Project!

Please go here ==> http://fllinnovation.firstlegoleague.org/liftassist <== and VOTE repeatedly from now until March 1st! This vote is a popularity contest, but I guarantee if this were based on utility and possibilities, our team would win! We need lots of votes! Explanation below...

Our son is on a First Lego League (FLL) Robotics team for Langston Charter Middle School. This is LCMS's first year in the competition, and Elijah's team got 2nd place in our regional competition! They go on to state competition on 2/23. 

The FLL competition "Challenge" is based on three equally-weighed parts:
1) the Robot Game
2) the Project
3) the FLL Core Values 
This year's project is based on the 2012 theme "Senior Solutions" - the goal is to improve the quality of life for seniors by helping them continue to be independent, engaged, and connected in their communities.

Below is a description of the Gear Turner's project. 

The Gear Turners have listened to several members of the senior citizen community and decided that physical mobility becomes difficult as people age. To answer this issue, we have constructed the LiftAssist. The LiftAssist is a device that helps elderly people get in and out of chairs. One of the most important advantages in the LiftAssist is that it is portable and lightweight. Consisting of two durable air bladders, the device inflates to comfortably support the person and lower them into the chair by deflating. When the person wants to get out of the chair, they reflate the air bladders to a semi-standing position. Then the senior citizen can comfortably move from the chair to a standing position.

We can't show pictures or give more details because the competition isn't over. But the Lift Assist product that was designed for the year's theme of 'Senior Solutions', and it has applications that far exceed that population! It could be used for anyone who needs help getting out of a chair (after surgery, with a disability, weak muscles, etc). It is extremely portable and easy to use. I could also see it being used for disabled children like our trisomy 18 daughter, Rebekah. The team has submitted it for a temporary patent. If they go further in the competition, we'll probably try for the full patent (but it is lots of $$)! This project far exceeds many of those on the leaderboard and we are woefully behind. But we know this is an amazing product!

Go and VOTE: http://fllinnovation.firstlegoleague.org/liftassist

Have You Hugged a Tubie Today?

It's feeding tube awareness week! Have you hugged a tubie today? I have!

There are many reasons why people have feeding tubes - accidents, illnesses, swallowing disorders, esophagus disorders, muscle tone issues, etc. But, just like a genetic disorder, having a feeding tube does not define who a person is.
Here is Rebekah's feeding tube story:
Rebekah is completely fed by feeding tube. This wasn't always the case. She actually came home from the hospital at 7 days old drinking from a bottle. Although it took a lot of energy and time to feed her those bottles, she gained weight and grew. 

At 6 weeks she got her trach and we got a g-tube at the same time because it was very likely that she would be unable to coordinate her suck/swallow with an open airway, as traches increase the risk for aspiration. She barely passed her swallow study, but we could keep feeding her orally! The only problem was that it took her twice as long to drink a bottle now because of the open airway (no pressure to help you swallow vs having the food/drink go down you windpipe) so feeding became a bigger challenge and was taking too many of her calories. So we supplemented with the g-tube since she had one.

Unfortunately, we went through a rough 3 months as Rebekah apparently had issues with her Mic-Key Balloon button g-tube. She kept popping the balloon due to great pressure in her abdomen and, because the g-tube stoma wasn't yet mature, we had to go to the hospital to get her g-tube changed in those 3 months. She must have popped at least 8 balloons and, the strange thing was, they looked blackened. In fact, someone at the hospital actually turned us into DSS for child abuse for "slicing and burning" her g-tube in "Munchausen by Proxy" fashion to get attention, I guess? Here we are with a child that wasn't supposed to survive, and we kept begging for answers to the g-tube dilemma, and we were being investigated for "child abuse". This happens OFTEN to families with disabled children. I am glad to say that the case was dropped fairly quickly as there was no founded evidence to support the claim and we had a list of doctors that wrote letters to attest to the great care Rebekah was receiving.

I kept pressing the doctors to change her g-tube and found some information saying that this happens in some patients, they cannot tolerate the balloon g-tubes. I also figured out that the dark look on the tubes was due to her Prevacid. Apparently her stomach acid reacts kind of funny with it and it turns really dark in her stomach and does not seem to digest.  But we were ignored. Luckily another pediatric surgeon listened to us and immediately changed us to an AMT non-balloon button g-tube. Although it is more traumatic getting it in and out, and we must do it at the surgeon's office, there was IMMEDIATE relief in Rebekah with the change. She used to keep her head turned to the right all the time and we thought it was torticollis. Turns out she was turning away from the pain she was experiencing which seems to be pretty typical in infants. The profile is lower than the Mic-Key and the material is more flexible. So this is better for being on the stomach too!  We also changed from Prevacid to Nexium and, guess what? No more black gunk in her stomach or on the feeding tube!

At 4 months of age, Rebekah was hospitalized for 2 weeks in the PICU with some major upper respiratory issues. We were not allowed to feed her by mouth and I didn't even think about giving her a passy to suck since she was pretty out of it. Well, 4 months is about when the infant suck REFLEX turns into a LEARNED BEHAVIOR. And guess what, we missed the boat. She forgot how to suck!! She started gagging on everything and would aspirate.

We tried many times since then to get her back to some oral feeds but our attempts were not successful. However, I am happy to say that Rebekah, at 45 months old, started sucking her thumb again all by herself! So there is still hope! But we will not push her because the feeding tube has allowed us to focus on other things and not worry about the hours of feeding time it would take per day. We are grateful for her feeding tube!

As a side note, a local friend's child was faced with failure to thrive/grow at one point and they considered getting her a feeding tube. One of their pediatricians actually compared the child to Terri Schiavo (the comatose patient whose family/husband battled over the decision to pull her feeding tube). I am sorry, but a person with a feeding tube is not the same as a person who is in a comatose state, unable to communicate with anyone. Not that I would want to make that decision either, but it is ignorance that leads to statements like that, and parents are then afraid to do something that will HELP their child. I am happy to say that my friend's child managed to thrive without the aid of a feeding tube, but we are very happy with our decision too and it doesn't make our daughter any less deserving of care or consideration. It doesn't make her less of a person!

Feeding Tube Supports:

• Blenderized Food for Tubies Facebook Group
• Children With Feeding Tubes Facebook Group
• Feeding Tube Awareness Foundation and Feeding Tube Awareness Foundation on Facebook
• Feeding Tube Awareness Facebook Group
• Oley Foundation and Oley Foundation on Facebook

PEAP - Physician Education Awareness Program

Our state has an organization whose mission is to support families with children with special care needs. It is called Family Connections of SC.  While they have many programs, one that I particularly like is their Medical Education Programs:  Medical students and pediatric and family practice residents engage with families in home visits and connections outside the role of physician/patient to better understand family-centered care and the medical home.

Our local upstate chapter of Family Connections works with parents and 3rd year USC med students doing their residencies at Greenville Hospital System to provide PEAP - Physician Education Awareness Program.  I have hosted this twice at my house, and hope to do it many more times in the future! It's a wonderful opportunity to get young doctors in the homes of our "incompatible" children, and show them what they are REALLY like. I also get to explain how seeing a child in the hospital, or even for an office visit, does not give any medical professional an accurate picture of who the child really is and what they can accomplish.

This is from the Jan 2013 PEAP session. These 3 doctors hopefully have a more positive view of trisomy 18 in their careers.

This is Maddie, she as a 2q microdeletion and tag-teamed a PEAP session at my house in March 2012.

Our March 2012 session had a total of 6 med students. Here are four of them.

Here are the other two med students with Rebekah, my son - Jeremiah, and Family Connections' Michelle Johnson who coordinates this program in our area.

I polled my special needs families and trisomy families for input on what they would want to tell doctors and medical professionals about our children. This is what we came up with...

PEAP – Physicians Education Awareness Program

What Do You Do When You Have A Pediatric Patient With Multiple or Life-Threatening Disabilities?

1.  This is a child first and foremost 

• Use People-First Language (I included some PFL handouts which was already part of what Family Connections gave the Med Students.)
• People First Language (PFL) represents more respectful, accurate ways of communicating. People with disabilities are not their diagnoses or disabilities; they are people, first. PFL is not about "political correctness," it's about good manners and "the golden rule." 
• http://www.disabilityisnatural.com/
• Use the child’s name.
• Speak of an unborn child as a person, not a thing.
• Do not make assumptions about the capabilities of a child that you have only spent 5 minutes or less with. Ask to see pictures of the child in his/her home environment. Ask what milestones the child has reached. Ask how the child communicates. Children may be “nonverbal”, but still communicate effectively!
• Even if managing care for a child that has 10% chance to survive, that child still DOES have a chance. They are not “incompatible”, care is not “futile”.

2.  Be Open To Interventions And Care Options

• Parents (and doctors) can be realistic AND hopeful at the same time. Being realistic would include surgery recovery times, more aggressive and proactive care, etc.
• Parents want choices – do not force or assume palliative care or hospice is always in order for a specific child.
• Tell the WHOLE truth – not just the medical books truth. Give options and realistic expectations. If you don’t know what those are, don’t make assumptions. Be honest about it, or seek out documentation to support your views.
• Intervention is not always wanted to prolong life. Sometimes intervention is necessary to improve the quality of life a child has – regardless of how long they will be here.
• Give parents the information they need to make informed decisions. Don’t assert your personal opinion into the mix.
• SUPPORT A PARENT’S DECISION, whether you agree with it or not. Don’t question why a child is full code.

3.  Each Situation Is Unique

• Treat the child, not the syndrome. Each child is unique. Two children with the same syndrome will not have the same outcomes and issues. Don’t treat them with cookie-cutter care.
• Treat the family, not the medical issue. Each family is unique. The care path that one family takes will not be the same as another family facing a similar situation. Adjust your care to the needs of each family and child.
• Do not speak down to the parents, or treat them like they are idiots. For parents with an unborn child or infant, be compassionate. For parents with older children, they are probably far more aware of their child’s condition than you are.

4. Educate Yourself - Be Willing To Learn

• What you learned in school does not necessarily reflect “reality”.
• Listen to the parents – they will no doubt have insight into their child and maybe even the condition if it is something you have not had extensive experience with.
• Network with families so you can grow beyond book and clinical knowledge to understand how families manage caring for a child with disabilities.

5. Be Compassionate

• While you may see a child with a hopeless future, the parents see a child they love and cherish – no matter what. Don’t discount that love. A child cannot be replaced (“you can always have another baby”). One child is not more “valuable” than another (“save your time/effort/money for your other children…”).

6. Be Willing To Share

• Families of children with disabilities need long term care and access to resources. Familiarize yourself with programs and support systems so you can pass that on.
• Be willing to search and provide medical journal articles and supportive research papers that will help the family cope with their child’s specific issues.
• Help connect families with similar disorders – peer support is critical!

7. Always Remember That You Are Not Seeing A Child At Their “Best”

• There is a huge difference between seeing a child critically ill in the hospital, or sick in the doctor’s office, and seeing that same child in their home environment surrounded by comfort, familiarity, and love.
• There are many children who react differently around “strangers” than they do at home.

8. What Parents Want You To Know

• I love my child with fill-in-the-blank as much as I love my “normal” children.
• My child loves me back.
• My child communicates.
• My child experiences joy, love, happiness.
• My child with disabilities is special in many ways. They all have different needs.
• Ask yourself, “What would I do if (insert name) were MY child?”

MiraLAX Users - Caveat Emptor!

Users of MiraLAX and other generic polyethylene glycol products need to be aware of potential harmful side effects from using this constipation medication!  Generics for MiraLAX include brands such as Clearlax, GlycoLax, Healthylax, Purelax, Dulcolax, and many other products containing polyethylene glycol 3350 (PEG) as an active ingredient.

Many people, especially special needs children, suffer with chronic constipation, reflux, and slow motility issues. Most doctor-prescribed "remedies" are prescription or over-the-counter drugs designed to mask the symptoms and address the problem with a man-made chemical solution.  In our own household, we are guilty of using these remedies time and time again. In fact, for Rebekah, we use a daily regiment of reflux and constipation medications. One popular drug, Nexium, has received a lot of heat for bone depletion issues and I mention this topic in this blog post about the dangers of Nexium and other PPI-type medications.

I was recently made aware of the following link which explains why MiraLAX (and any laxative using Polyethylene Glycol 3350 (PEG for short) as their active ingredient) is not good for you.
http://www.gutsense.org/gutsense/the-role-of-miralax-laxative-in-autism-dementia-alzheimer.html
It is comforting to know that the main ingredient of these laxatives is a chain of ethylene glycol molecules - commonly used in brake fluid and antifreeze. There is evidence showing extremely concerning potential side effects. I try not to be an alarmist, I know there are many websites out there that tell similar stories about many products we use (like corn syrups, artificial sweetners, etc). But it becomes increasingly alarming to think that all of our advancements in chemistry have just led us to create unnatural products that are harming us more than helping.

According to this particular miralax claim, there is supportive evidence that shows that polyethylene glycol (PEG) is associated with neurotoxicity, nephrotoxicity, urticaria, and esophageal perforations. As an osmotic laxative, it blocks absorption of nutrients in the small intestine and leads to dysbiosis (lack of intestinal bacteria). The FDA's Adverse Event Reporting System (AERS) has included reports of serious kidney, rinary, bowel, blood, skin, and neuropsychiatric symptoms.  What I appreciate most (despite this not being a "medical" paper) is the appropriate links to actual medical journal papers that support the claims.

I did my own quick search and here are just a few of the things I found that support the article:

• WebMD says that common side effects of use are nausea, cramping, and gas (many of the symptoms we are trying to fix in the first place!), and that caution should be used if you have certain stomach & intestinal problems / obstructions (isn't constipation a form of obstruction and chronic constipation a stomach/intestinal issue?) or irritable bowel syndrome.
• The New York Times posted an article last year that states that there is no warning about use of MiraLAX with children despite lack of studies. Even more troublesome is that pediatricians are prescribing MiraLAX for long-term use despite the warning labels not to use it more than 7 days (my generic brand says 14 days).
• Even ehow.com states that long term use of MiraLAX can lead to diarrhea, dehydration, and mineral imbalance. (Given how many of our kids are on this as a long term regiment, how many of them are even having their blood checked for mineral imbalances?)

I don't know what to think anymore when you come across these websites that scare me into not using things. But it works! I have been thinking for a long time now how I can better help Rebekah and get her off of all of these unnatural medications for motility and bowel issues. We will be exploring blenderized diets and natural supplements, but I would be kidding myself if I said we are switching to all natural products and food. I can't put that kind of pressure on myself - I don't have the time or resources to do it all the "right" way. But I do know that educating myself helps me make better decisions and better choices for all of our family members, not just Rebekah.

So if you have something easy and affordable that works well, PLEASE share it with me! You may be able to help many other families besides mine.

Perfection

PERFECTION

by Michael Budd

(Written in honor of Rebekah Faith Budd- Full Trisomy 18 / Edwards Syndrome)

You play with toys, smile, laugh, and giggle;

You flap your arms, click your tongue, and wiggle.

You yell for joy, boredom, or disdain -

You want attention or to explain.

To a stranger it is unrecognizable noise;

To us it is cause to rejoice with the boys!

There is adoration in your eyes when you touch my face

And it shows me unconditional love and grace.

You roll, stand, and even, occasionally, we share a dance

Once this was only a dream and not even a chance.

You are designed as God wanted you to be -

Created in His image for all the world to see

That life is more about who you are

Than to what height you reach or what bar.

You are my amazing and precious little princess.

I cherish every moment we share and every success.

Some may treat you with rejection;

But we praise God for your perfection!

Everyone Poops

When you have four boys, rarely does a day (or a dinner) conversation pass without someone bringing up "poop". It inevitably is a part of our everyday conversation along with the other fun boy words like fart, belch, butt-head, smelly poopy-head, and the list goes on...

If it isn't the boys bringing it up, it's Rebekah's poopy diapers and poop explosions that seem to occupy my time. We just need to face it, POOP is a part of our everyday lives! If you don't believe me, then you obviously haven't read the book Everyone Poops by Taro Gomi.

Well, Tuesday was no different. Somehow, I expected it to be a grand day. Rebekah was getting her spica cast off! So on the way to the orthopedist's office, what happens? One last poop explosion up and out the back of the cast. That made for a lovely mess while they tried to cut the cast off.

To make things even better, I had orders to soak her in the tub until she was a prune to help her leg soreness. She wouldn't stay still in her bath chair and kept sliding down, so that wasn't working. I couldn't put her in a bath seat for babies because she had been casted at a 45 degree angle for 6 weeks and wanted nothing to do with sitting up fully. So I finally relented, put on a bathing suit, and sat in the tub with her. She was getting really irritable and started coughing. Well, with the coughing inevitably came... poop in the tub! I managed to hand her off to the nurse and started to drain/clean the tub so I could take a shower and clean myself off.

But there it was, at the bottom of the tub, as if mocking me... or perhaps just reminding me that I cannot escape my life doomed to poop at every turn. But living a sitcom kind-of-life, I didn't let a little poop bring me down. It can at least be washed off! So I did the only thing that I could do in a situation like this. I laughed and grabbed my phone and took a picture.  As the water continued to drain, another blob of poop formed a sad face, as if saddened, because it did not get the best of me!

"But there it was, at the bottom of the tub, as if mocking me...
or perhaps just reminding me that I cannot escape my life
doomed to poop at every turn."

"As the water continued to drain,
another blob of poop formed a sad face, as if saddened,
because it did not get the best of me!"

I promise that I did not "arrange" the poop in some sort of perverted manner. I just think God sometimes has a sense of humor.

Birdie, birdie in the sky,

Why'd you turdie in my eye?

I don't worry, I don't cry,

I'm just glad that cows don't fly!

And if you want to read more about poop, here is a link to Interesting Facts About Poop. My favorites from the list -

• The average human poops 1/2 pound per day, while an elephant poops an average of 80 pounds of poop per day!
• Poop can be classified into SEVEN groups. 

1. Separate hard lumps
2. Sausage-shaped but lumpy
3. Sausage-shaped with cracks
4. Sausage-shaped but smooth
5. Blobs with clear cut edges
6. Fluffy pieces, very mushy
7. Watery

Disclaimer: No poop was harmed in the creation of this blog post.

My Little Warrior Princess

The Warrior Princess Foundation - The Warrior Princess Foundation was founded by Michael and Chrissy Whitten after their precious daughter, Lilian Grace, earned her wings Thursday, August 5, 2010. She was born with T18, Edward’s Syndrome, on Sunday, April 25, 2010, and fought a daily battle for 103 days. Her parents realized the need and desire to help other families going through this similar journey due to the large costs and grueling daily battles this syndrome creates on a daily basis.  They wanted to create a way to help families, and so they began an annual fundraiser to help in that effort.

The foundation held it's second annual Trail Run fundraiser this past April 2012. They choose trisomy 18/13 children to recognize during the race. Rebekah was one of the these children honored both the first year of the run (2011), and the second year (2012).  We feel very blessed to receive an official Warrior Princess Medal which arrived for Christmas time.  Many thanks to the Whittens for honoring our trisomy children and for helping families in need! 

This is the medal that Rebekah received. The message reads,
"A small token/gift for your grace  & fighting spirit
through your true Trisomy Race. This medal is from the
2nd  Annual Warrior Princess Trail Run 10.3 miles, 10.3K &
Fun Run/Walk 1.03 miles races on April 25, 2012.
Love from Michael, Chrissy, Piper & Lilian (Angel)

Rebekah is totally thrilled at the honor of receiving an official Warrior Princess medal!

Navigate the slides to see more of Rebekah's funny faces. :-)

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.

• http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm213321.htm
• http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm213206.htm
• http://www.aafp.org/online/en/home/publications/news/news-now/clinical-care-research/20100601ppifracture.html

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.

IMPORTANT WARNING ABOUT THE NEW DEVILBISS SUCTION CONTAINERS

IMPORTANT SHOUT-OUT TO ANYONE USING A DeVILBISS SUCTION PUMP:

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.

PROBLEM - THIS FILTER CANNOT GET WET! IF IT GETS WET, THE MACHINE OCCLUDES AND WILL NOT SUCK!!

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