I wanted to take a minute to wish all of my trach kids a HEALTHY, happy
holiday season!
Attached is a Christmas picture of my three boys.  All are 9 years old and
can't wait for Santa!

Sincerely,
Cindy Bissell
More than you ever wanted to know about the Bissell's at www.bissells.com
Aaron's Tracheostomy Page:  www.tracheostomy.com

Hi All,

Received a nice email from a mom who's child has been decannulated.  She has
some trach supplies that she would like to give to someone who could use
them.  Below is a list of the supplies.  Please email Alison personally to
arrange shipping.  Her email address is:  alison@....

Cindy Bissell
**************************

Shiley Trach 3.0 NEO (1)

Shiley Trach 3.0 PED (5)

Shiley Trach 4.0 PDC (4)

8 French Suction Catheters (about 100) with sleeve.

6 French Suction Catheter Kits - 1 use only.  (about 40).

6 French Suction Catheter Mini Tray - 1 use (21)

Posey Trach ties (about 50).

Nebuliser with Air Entrapment and Immersion Heater Adapter (bottle for
humidifier)  4

Mini Trach Care Tray - (21)

Sodium Chloride Solution 3ml phials (about 75)

Oxygen Tubing with connectors 2.1 metres.

Tubing and bottle for portable suction machine (1)

Thermovent T - about 50

I hope these can be of help to someone.  I know how difficult it is when you
are trying to manage and your insurance will not pay for things.  I was OK
but I often had to fight for things!  I am sure this will be a familiar
story to others out there.

I know how lucky I am - although at times I found it hard to believe we
would get through this.  I used to read over and over the stories of
decanulation and hope that one day it would be Jack.. I want others to know
that it can get better and that the memory does fade.  We will never forget
how things were but we have learned how fortunate we are.
Thanks

Alison

I am forwarding this message from Noah's Mom Anri.  Noah is on Aaron's Page
and passed away last year.  His mother is working on an exciting project
that will be helpful to both English speaking and German families.  If any
of you have time to take a look at the tracheostomy section of the site
listed below and could send feedback to Anri Schramm anri@..., your input
would be very helpful and appreciated.

Sincerely,
Cynthia Bissell

-----Original Message-----
From: Anri Schramm [mailto:anri@...]
Sent: Wednesday, September 18, 2002 6:55 PM
To: Cynthia Bissell
Subject: Stiftung NOAH


Dear Cynthia,

This is Anri. mother of two trached kids, Noah and Ruben. You may
remember me from the Trach Ties mailing list.

As you may recall, our oldest son Noah died last year. After his death
we set up the Stiftung NOAH - or NOAH Foundation - a public non-profit
charity aimed at helping parents to care for special children by
coordinating the expertise of parents, doctors and caregivers on any
given condition or disease, organizing the information thus gathered and
publishing it both online and as books in the form of Care Guides, which
are made available free of charge.

In the long run we plan to create an exhaustive resource covering as
many diseases or conditions as possible, by connecting with parents of
children with other care-intensive conditions and helping them to write
and structure Care Guides for their particular situation and make them
available via the Stiftung NOAH.

The Care Guides will be published in both German and English in order to
reach as many people as possible. Our primary focus are children in
Germany, because there are not many free online German language
resources for people caring for a sick child and because this is where
we have gathered our experience with doctors, medical customs and
bureaucracy.

Because both our kids have trachs and feeding tubes, we were able to
write the first two Care Guides on Tracheostomy Care and Enteral
Nutrition ourselves, in close cooperation with a number of doctors and
specialists. The Trach Care Guide is now finished in English and it
would mean a lot to me if you could read through the material and tell
me what you think of it.

You can find it at http://www.stiftung-noah.de .

I would also like to post the link on the Trach Ties mailing list, in
order to get the opinions of all the specialists on it to help us iron
out the remaining mistakes and bugs.

Your work has been an inspiration and a help to us from day one! I look
forward to hearing from you.

Regards

Anri Schramm
Stiftung NOAH
anri@...

Greetings!

Aaron's Tracheostomy Page has just reached 200 kids with tracheostomies!
WOW!!  We
are definitely not alone.  I have recently added an alphabetical list to
make it easier to find kids.  You'll find the list at:
http://www.tracheostomy.com/trachkids/namelist.htm
I was thinking it might be nice to include a little national flag next to
each child name and page number.  This would make it easier for parents,
especially those not in the US, to connect with one another, since standard
of care and services can vary for our kids.  In the US and Canada, the
state/province may also be helpful since states and provinces are sometimes
run like a different country...:-)

Many of the biographies do already list counties and I will be going through
those, but if your child is listed on Aaron's Page, it would be helpful if
you would send me a note as to where you are in the world.  Thanks!

Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com

Greetings!

Aaron's Tracheostomy Page has just reached 200 kids with tracheostomies!
WOW!!  We are definitely not alone.  I have recently added an alphabetical
list to
make it easier to find kids.  You'll find the list at:
http://www.tracheostomy.com/trachkids/namelist.htm
I was thinking it might be nice to include a little national flag next to
each child name and page number.  This would make it easier for parents,
especially those not in the US, to connect with one another, since standard
of care and services can vary for our kids.  In the US and Canada, the
state/province may also be helpful since states and provinces are sometimes
run like a different country...:-)

Many of the biographies do already list counties and I will be going through
those, but if your child is listed on Aaron's Page, it would be helpful if
you would send me a note as to where you are in the world.  Thanks!

Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com

Dear Group,

As mentioned previously, the service we used for the tracheostomy message
board is no longer offering free services.  I've found the inexpensive
boards to be very limited.  For example, the board we are currently using at
Multicity only allows 1,000 posts with not way to archive or download old
messages.

Michelle Brose, who is an adult with trach and vent 24/7, (Retrofit Web
Design, http://www.retrofit.net/) kindly offered her expertise to install a
message board on my hosting account.  So, we will no longer be dependent on
outside services for our message board!

The board she has installed is called Ikon Board
(http://www.ikonboard.com/).  While it may take a bit of time to adjust to
the new board, it is quite superior to the boards we have used in the past.
It is a powerful program with lots of options and new possibilities.
Currently, the new board is set up with two forums, one for pediatrics and
one for adults with tracheostomies.

The new board is ready to use at:
http://www.twinenterprises.com/cgi-bin/ikonboard/ikonboard.cgi.  I will be
canceling my account at Multicity and closing the old board soon.  Please do
stop by and try out the new message board.  Let me know if you have any
questions or problems.

Thank you Michelle for your kind and generous assistance setting up this
program!

Sincerely,
Cynthia Bissell
www.tracheostomy.com

Still waiting to hear from tech support regarding the best way to manage to
message board and maximum posts.  In the meantime, I've trimmed off the
oldest messages down to about 800, so you'll be able to post again.  Please
email me if you have any question or comments.

Sincerely,
Cindy Bissell
www.tracheostomy.com


> Dear Message Board Users,
>
> The service that we use for Aaron's Tracheostomy Page Message Board,
> MultiCity.com, will stop offering free message boards beginning March 1,
> 2002.  Most of the other decent message boards have already begun charging
> for services or will begin doing so soon.  Because we are already setup at
> MultiCity and realizing the need for this resource, I have agreed to pay
the
> "starter package" fee, which allows a maximum of 1,000 posts.  We are
> already well over that limit, so it will take a bit of time to clean
things
> up.  So, you will temporarily be unable to post to the board.  I'll get
this
> cleared up ASAP.  Sorry for any inconvenience.  Will send another message
> when the board is ready to use again.
>
> Cindy Bissell
> www.tracheostomy.com
>
>

Dear Message Board Users,

The service that we use for Aaron's Tracheostomy Page Message Board,
MultiCity.com, will stop offering free message boards beginning March 1,
2002.  Most of the other decent message boards have already begun charging
for services or will begin doing so soon.  Because we are already setup at
MultiCity and realizing the need for this resource, I have agreed to pay the
"starter package" fee, which allows a maximum of 1,000 posts.  We are
already well over that limit, so it will take a bit of time to clean things
up.  So, you will temporarily be unable to post to the board.  I'll get this
cleared up ASAP.  Sorry for any inconvenience.  Will send another message
when the board is ready to use again.

Cindy Bissell
www.tracheostomy.com

Happy Holiday's!!
Eric, Anthony and Aaron.

Cindy Bissell
Aaron's Tracheostomy Page:  www.tracheostomy.com
Home:  www.bissells.com

I am currently in the process of building Aaron's Tracheostomy Page in
different languages.  This is being done through the generosity of bilingual
volunteers (which are more accurate than software translators).  I already
have volunteers working on Swedish and Portuguese.  If any of you are fluent
in Spanish, French, German or any other language and would like to do some
translating, please email me privately at: cbissell@....  Of
course, you will get full credit for your work.  Medical background helpful,
but not required.  Only the vital trach care information is being
translated, not the whole site.

Cindy Bissell
www.tracheostomy.com

Hi All,

Aaron's Tracheostomy Page was recently sited in a new American Medical
Association publication as an example of a community web site.  Just wanted
to share.

http://www.tracheostomy.com/misc/amabook.htm

Cindy Bissell

Hi All,

I've just set up a Tracheostomy Web Ring to link tracheostomy-related home
pages.  The ring is intended for adults or children with tracheostomies and
their families. Sites related to life with a tracheostomy, living with a
child with a tracheostomy, or tracheostomy care may join.  No commercial
sites please.

If you have a home page and would like to join, go to:
http://www.tracheostomy.com/ring/add.htm

Ring Home Page is at:
http://www.tracheostomy.com/ring/index.htm

Any questions or problems, please email me at:
cmbissell@...

Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com

Hi All,

Thank you to those of you who filled out the Pediatric Voice Outcome Survey.
Your input is very much appreciated.  We still need approximately 40 more
respondents to come to some meaningful conclusion regarding voice outcome.
If your child is between ages 2 and 18, trached or decannulated, please take
a minute to complete this short 7 question on-line survey.

Thanks so much for your help.

Pediatric Voice Outcome Survey:
http://www.tracheostomy.com/questions/voice.htm

<a href="http://www.tracheostomy.com/questions/voice.htm">AOL Click Here</a>

Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com

This is forwarded from the Trach-ties list, submitted by Kathy Rowe.  Sorry
for the repeat to those of you on both lists, but I thought this was worth
sending.

Suits spur new look at nursing facility
Chicago Sun-times

May 15, 2001

State public health officials say they plan to re-examine a North Side
nursing facility in the wake of lawsuits alleging negligence that led to the
deaths of three children.

According to the lawsuits, which were reported Monday night on WBBM-Channel
2, three children who were on breathing tubes died at the Progressive
Pediatric Rehab Institute, a facility that serves mentally and physically
disabled patients.

The report cited one case in which two former nurses aides detailed attempts
to get help from an on-duty nurse for a child who was having a hard time
breathing and needed his tracheotomy tube suctioned. The aides said their
pleas for assistance were ignored.

One month after that incident, two other children died, according to the
report. An anonymous complaint to the state alleged the children's
tracheotomy tubes were not suctioned in time or with the right catheter, but
investigators could not substantiate that.

In response to the report, Illinois Public Health Director Dr. Robert
Lumpkin promised to "take a much closer look at some of the events in the
past."

In the first case, the state cited the facility for failing to provide
adequate nursing services, but could not conclude whether this led to the
death. In the second case, the state cited the nursing home for neglect and
"substantial failure" to take corrective action to help the child.

The facility has denied all charges in the pending lawsuits and is appealing
the state's latest findings.

Annie Sweeney

Hi All,

I wanted to let you all know that Aaron's Tracheostomy Page has move to it's
own domain.  The new, permanent address for Aaron's Page is:
www.tracheostomy.com.

The old address www.twinenterprises.com/trach will forward you to the new
page, however if you are linked to any other pages or sections of Aaron's
Page such as the kid's pages, you will need to update your bookmarks and
links.

Sorry for any inconvenience.

Sincerely,
Cynthia Bissell
www.tracheostomy.com

Greetings,

To all those families who completed the final version of the Pediatric
Tracheostomy Quality of Life Questionnaire, I offer you a tremendous thanks.
We have finished with enrolling patients into this part of the study and
wanted to give all of you some sense of where we stand at the moment.  First
of all, we have demonstrated that the questionnaire is valid to be used to
reflect the voice of families with children who have tracheostomies.  This
is an important first step because it now gives an instrument, which is
accepted and carries some weight.  It allows us to start to share with the
public at large, with insurance carriers, with whomever, the child's
experience of having a tracheostomy and the families' experiences of caring
for these children.

As an example, part of the questionnaire that you filled out represented an
accepted questionnaire that is widely used to assess the health and "quality
of life" for adults with regards to their own life.  This questionnaire has
been given to so many adults across the US and the world that there are
standard inferences and statements that can be drawn from population
results.  We know for example that the mean score for US adults is a 50 on a
score from 0 to 100 (0 is poor and 100 is good).  Adults with heart disease
or diabetes generally score in the low 40's.  The scores you as a population
have averaged have been in the mid 30's, which demonstrates in a striking
way just how difficult and stressful caring for these children can be.  This
is important information.

What are the next steps?  I see them as three fold.  First, we would like to
be able to use the questionnaire to be able to evaluate families of children
with tracheostomies over a period of time after the tracheostomy has been
placed and to be able to help identify where more services or support might
be helpful. Second, we would like to be able to demonstrate just what an
effect removing the tracheostomy surgically has on the children and their
families.  Finally we would begin to enquire in more detail into the
particular aspects of quality of life that affect these children.  The first
two goals will be answered by long-term studies that we will be establishing
at Cincinnati Children's Hospital and the Massachusetts Eye and Ear
Infirmary.  The third goal begins now.

I would like to ask those parents whose children are between the ages of two
and 18 (trached or decannulated) to complete a seven question survey.  This
short questionnaire will allow us to begin to study one of the aspects of
having a tracheostomy that is mentioned quite often but about which little
is known: the voice.

Pediatric Voice Outcome Survey
http://www.tracheostomy.com/questions/voice.htm

<a HREF="http://www.tracheostomy.com/questions/voice.htm">AOL Click Here</a>

Again, I thank you for all your time and interest in these projects.  Please
contact me with any questions regarding them that you might have.

Christopher Hartnick MD
harq4k@...

I have been touched and impressed by the numbers of people responding to
this request.  If you can forward the message that I will be talking with
my patient this week and letting him know of the opportunities you have
provided him with I would appreciate it.  Thank you and the group very much.

Kris Campbell

At 07:04 PM 3/1/01 -0500, you wrote:
>I am forwarding this message to the group(s).  This doctor is looking for
>older children or teens with trachs who would like to connect with this
>youngster who needs some encouragement.  Email address below for anyone who
>might be able to help.
>
>Sincerely,
>Cynthia Bissell
>Aaron's Tracheostomy Page
>www.tracheostomy.com
>
>----- Original Message -----
>From: "David Sandweiss//Kris Campbell" <maxsand@...>
>To: <cbissell@...>
>Sent: Thursday, March 01, 2001 12:46 PM
>Subject: teenager with a tracheostomy
>
>
>> I am a pediatrican caring for a young teen who has a congenital
>> malformation which will require him to be trach-dependent for life.  He
>> lives in a very rural area (on the Navajo reservation in Arizona) and has
>a
>> troubled family.  I am hoping to find contacts for him to encourage him
to
>> begin to develop some independence in caring for his own trach and to
hear
>> from other kids in his age range (or a bit younger) who are living with
>> trachs.  Do you have any suggestions?  He does not have internet access
>(or
>> a telephone) but we can arrange for him to have time on a computer if we
>> can help him make contacts.
>> Thanks in advance.
>>
>> Kris Campbell, MD
>> Department of Pediatrics
>> Chinle, AZ
>> 520-674-7001
>>
>> David Sandweiss and Kris Campbell
>> Chinle Comprehensive Health Care Facility
>> Chinle, AZ 86503
>> (520) 674-7001 - work
>> (520) 674-5907 - home
>> maxsand@...
>
>
>

David Sandweiss and Kris Campbell
Chinle Comprehensive Health Care Facility
Chinle, AZ 86503
(520) 674-7001 - work
(520) 674-5907 - home
maxsand@...

I am forwarding this message to the group(s).  This doctor is looking for
older children or teens with trachs who would like to connect with this
youngster who needs some encouragement.  Email address below for anyone who
might be able to help.

Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com

----- Original Message -----
From: "David Sandweiss//Kris Campbell" <maxsand@...>
To: <cbissell@...>
Sent: Thursday, March 01, 2001 12:46 PM
Subject: teenager with a tracheostomy


> I am a pediatrician caring for a young teen who has a congenital
> malformation which will require him to be trach-dependent for life.  He
> lives in a very rural area (on the Navajo reservation in Arizona) and has
a
> troubled family.  I am hoping to find contacts for him to encourage him to
> begin to develop some independence in caring for his own trach and to hear
> from other kids in his age range (or a bit younger) who are living with
> trachs.  Do you have any suggestions?  He does not have internet access
(or
> a telephone) but we can arrange for him to have time on a computer if we
> can help him make contacts.
> Thanks in advance.
>
> Kris Campbell, MD
> Department of Pediatrics
> Chinle, AZ
> 520-674-7001
>
> David Sandweiss and Kris Campbell
> Chinle Comprehensive Health Care Facility
> Chinle, AZ 86503
> (520) 674-7001 - work
> (520) 674-5907 - home
> maxsand@...

Dear Groups,

To those of you who have completed the final Pediatric Tracheostomy Quality
of Life Questionnaire, thank you so much.  We have received over 150 replies
so far.  If you haven't gotten to it yet, there is still time.  The
questionnaire can be completed on-line or it can be printed out and mailed
in.  You'll find both versions at:
  http://www.twinenterprises.com/trach/questions/index.htm
Any question, please email cmbissell@....  Even if your
child is decannulated, we would still like your input.
Results of the survey will be emailed and posted on Aaron's Page.
Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com

To all of you who completed the Pediatric Tracheostomy Quality of Life
Questionnaire, thank you for participating in this important survey.  Your
time is very much appreciated!  If you haven't gotten to it yet, there is
still time. You'll find the survey at:

http://www.twinenterprises.com/trach/questions/index.htm

We have had over 100 responses so far.  Results of the survey will be posted
for all to see.

Sincerely,
Cynthia Bissell

Not really trach-related, but interesting article on preemies.

Whose Miracle?
Samantha Collins

Wed. Jan. 3 2001 12:46 PM

When Laura Inglis found out she was pregnant with twins, she had dreams of
pushing them down the street in their double stroller. But, when Laura went
into labour only 26 weeks into her pregnancy her worst fears became true.

Laura gave birth to a boy and a girl, each weighing less than a pound.
Doctors told her their chances of survival, even with intensive
intervention, was sixty per cent at best. The twins, Carley and Tucker
Inglis, were in critical care at the neonatal intensive care unit at the
McMaster Medical Centre in Hamilton, Ontario.

The biggest threat in the first days of life for babies born this extremely
premature is lung damage. But that's just the beginning.

"There is always a lot of anxiety in the first couple of days with respect
to functioning of their lungs because their bodies are not really designed
to be breathing the atmostphere," says Dr. Michael Marrin, Director of
Neonatology at Hamilton Health Sciences Corporation. "So they are going to
suffer some damage to lungs. They're going to get worse before they get
better. They must also watch for bleeding in the brain. About ninety per
cent of the time, if that bleeding is going to occur, it happens in the
first three days of life."

Doctors describe life in the neonatal intensive care unit as a roller
coaster ride. Each day proved a struggle for life for Carley and Tucker and
was incredibly emotionally and physically draining for their mother. And
things can go from good to bad, to worse, very quickly.

"They are working on one and you turn around they're working on the other.
You just didn't know where to go or what to do," says Laura Inglis.

According to Dr. Marrin, parents must make difficult choices. If they choose
extreme intervention, there is a very high risk of severe disabilities, if
the baby survives at all. Extremely low birth-weight babies are at risk for
blindness, deafness, learning disabilities and a multitude of other
disabilities. On the other hand, for a parent, it is very difficult to
overlook the chance that the baby might turn out just fine.

"The parents ultimately have to make the decision. We have to be patient,"
says Dr. Marrin.

The choice parents must make is between saving the life of the child,
knowing the risk of future disabilities, and removing the breathing tube -
allowing the baby to die.

"Sometimes parents are able to make a decision within hours. Sometimes it
takes a couple of weeks," says Marrin.

A recent study, published last August in the New England Journal of
Medicine, found that babies born before 26 weeks had an eight per cent
chance of surviving. Of those alive at birth, only 13 per cent were free of
disabilities by age 2 1/2. Of those discharged from the Neonatal Intensive
Care Unit, about half were free of disability by age 2 1/2.

Ron Federchuk is considered one of the lucky ones. Born at only 24 weeks
gestation, he's hard of hearing and blind in one eye. Other than that he's a
normal kid. Federchuk is now in his final year at the University of Toronto.

His father certainly doesn't regret the decision they made to save Ron's
life as a premature baby. His mother calls him a miracle. "Acorns come in
little packages and make big oak trees, once they start growing normal,"
says Ronald Federchuk Sr., Ron's father. "He caught up in grade two."

But Gaelle Trebaol doesn't agree. Her son Erwan was born at 25 weeks
gestation - 15 weeks before full term. When Gaelle took him home, doctors
called his survival a miracle. But it wasn't long before Gaelle and her
husband, Louis Houle, realized Erwan would never be normal. "It's not a
miracle. It's a miracle of the hospital, not our miracle," says Trebaole.

By age one, Erwan was diagnosed with Cerebral Palsy. At 17 months, he was
diagnosed with severe deafness. At two, he had corrective eye surgery.
Convulsions started at age three.

Erwan now suffers from learning disabilities, attention-deficit disorder and
mild retardation. And Gaelle Trebaole has started an organization called,
"l'Association des parents d'enfants prematures du Quebec" (The association
of parents of premature babies of Quebec).

Dr. Hillary Whyte used to head the preemie follow-up program in two Toronto
hospitals. She is convinced that we shouldn't try to save babies born before
26 weeks gestation. "Even at best, when looking at a ten percent chance of a
baby being normal, it really doesn't justify this aggressive resuscitation
and intervention," says Dr. Whyte.

Dr. Marrin is worried parents don't look far enough ahead. "I've had people
say it doesn't matter Doc. We don't care if our child is blind or unable to
work," says Marrin.

"They are thinking when the child is a child, but if the child is now 45 and
the parents are in their mid 60s, it's quite a different matter."

But sometimes even the medical miracles fail. At Hamilton Health Science
Corporation, doctors were unable to save Carley Inglis. Her twin brother,
Tucker, grew stronger and went home with his mom and dad on Oct. 27th, 11
weeks after his birth. Still, the Inglis's, like other parents, hope for the
best. For only time will tell whether Tucker is truly a miracle baby.

Hi All,

For those of you on multiple lists, sorry for the repeated post.  I was just
cleaning out my files and moving from 2000 to 2001 and came across this
speech that my husband gave last year at a legislative breakfast.  The idea
was to help legislators understand what families of kids with special needs
deal with on a daily basis.  I'm sure many of you can relate!

************************

My name is Rich Bissell and I am the father of six-year-old twin boys who
have disabilities. In July of 1993, my wife Cindy gave birth to identical
twin sons who were born 3-1/2 months too soon.  Both boys had many of the
problems common among premature infants.  Eric's most significant problem is
spastic quadriplegic cerebral palsy.  Aaron's problems are mostly
respiratory, he has bronchopulmonary dysplasia and subglottic stenosis.
Aaron's airway was damaged from the ventilator tube when he was in the
Neonatal Intensive Care Unit (NICU).  The ventilator certainly saved his
life, but no medical procedure is done without the possibility of
complications.  Aaron had his tracheotomy surgery at one month of age.  His
condition was complicated by bronchopulmunary dysplasia and he was oxygen
dependent for several years.  After three months in the Neonatal ICU, the
boys finally came home.

When I was thinking about what I was going to say today I looked back in my
journal to see what life was like during those first few hectic years.  I
would like to share with you a small part of that journal.  This is pretty
much word for word the original journal entry made back in 1994.

  February 10th 1994

  1:00 AM - The perching alarm has been sounding for about a full minute
before I am able to pull myself out of a dreamless sleep. I know it has been
ringing because my wife has already managed to make her way to Aaron's
bedside and is in the process of checking his lead wires before I am even
out of the bed.  It is my turn to do the night shift and I have failed
miserably in allowing her to get some much-needed sleep. "Sorry Hon," is all
I can manage as she is already making her way back to bed.  The alarm is no
longer ringing and Aaron is sleeping comfortably. One of his monitor lead
wires had come loose and the apnea monitor was no longer getting a signal
telling it that Aaron was breathing.

   2:15 AM - I wake up to the incessant alarm of Aaron's saturation monitor.
I wipe the sleep groggily from my eyes and check the time. All of Grafton is
in restful sleep and I am envious. It was only a few months ago that we
brought our twin boys home from the hospital and neither Cindy nor I have
gotten a full-nights sleep since.  I quickly suction Aaron turn him on his
side and go back to sleep.

  3:25 AM - It feels like I have just gotten back to sleep when I hear Aaron's
"Darth Vader" like respirations. Whenever his secretions build up in his
airway, his breathing gets noisier and noisier until he is suctioned, making
him sound like a miniature replication of the Dark Knight from the popular
Star Wars movies.  I check his oxygen saturation; it's 92 and falling. If I
do not suction him soon the low saturation alarm will inevitably sound.  I
turn on the small night light next to his crib and look at this tiny
miracle. He has put on a lot of weight over the last few months and is now
up to a whopping 8 pounds.  The heavy drone of the suction machine is a
familiar sound and he does not stir. I clear the tube with normal saline and
then suction just deep enough to clear his trach tube. He barely even stirs,
having learned from birth that he would have lots of interruptions during
the night.  His sats crawl back up to 97; his color is good, his heart rate
and respirations, normal.  All is well.

  I take a moment to check on his brother Eric. Eric is sleeping restlessly
and looks like he will soon be up.  It's been four hours since we last fed
him, or was it Aaron who ate last. They look identical in every way when
they sleep. I take a moment to write down the time and saturation level in
Aaron's log and then crawl back into bed.

   4:30 AM - Eric is fussing and hungry.  I hurry to him, before Aaron is
woken by his cries.  I quickly make my way to the kitchen and pop a
previously prepared bottle into the microwave.  As Eric eats, the constant
beat of Aaron's heart rate monitor reassures me that he is fine.

  Tomorrow will soon begin the continuing routine of medical equipment,
therapies, medical bills, and a constant parade of therapists, nurses, and
case managers, as well as the administration of medications, treatments, and
feedings that fill our days from dawn till dusk.  That, coupled with the
many nights of broken and nonexistent sleep, and working full-time jobs,
make for cranky coffee filled mornings at the Bissell house.

  But for now, Eric's belly is full and he asleep. The constant hums and
beeps of Aaron's machines lull me back to sleep.  My last thoughts are not
of medical equipment, sleepless nights, or surgeries.  The thoughts that
send me to dream land are of two beautiful miracles that are sleeping in
those cribs next to our bed. In the morning, when Eric and Aaron are looking
up at me, my heart will fill with joy and pride. On the scale of life this
joy easily tips the weight of all the sleepless nights and all the worry
that I could ever imagine.

  Even after six years of sleepless nights I still feel that way.

  A few months ago my wife and I received a call from a family living in
Springfield who had just brought home their three-month old daughter with a
tracheostomy.  Since their child has come home, they have had many sleepless
nights, medical equipment problems, insurance difficulties, and cranky
coffee filled mornings.

  I would like to be able to tell them that things are much better than they
were six years ago and that there is a lot more support out there.  But it
is really not so. Many nursing agencies are short staffed and they are
forced to either cut back or go out of business. A family who needs 8 - 16
hours a day of skilled nursing are lucky to get any.

  For families who need a PCA or personal care attendant the situation is
even worse. Nursing agencies are forced to compete with McDonalds for staff
that have the responsibility of caring for our children.

  Most of us would agree that children belong at home with their parents. A
parent of a medically involved or disabled child has the same love for that
child as the parent of a typical child does.

  In order to live at home many of these children require a certain level of
specialized care. It is my hope that we can work toward a goal of allowing
all children to have the best possible support in their own homes.

  I want to thank all of you for coming out today and hearing our stories.

*******************

P.S. If you have cared for a child with a tracheostomy, please fill out the
questionnaire at:
http://www.twinenterprises.com/trach/questions/index.htm
Thanks!
Cynthia Bissell
cmbissell@...
www.bissells.com

Greetings!

For those of you who have taken the time and effort to fill out the first
questionnaire, a tremendous thank you and a word to say that we are half way
home! For those of you who are reading this for the first time, welcome. We
received 128 responses to the pilot survey. At first pass, it is clear that
there is a reasonable diversity regarding the actual health of the children.
However, as regards the quality of life, it is striking how unified the
responses have been in describing both the quality of life for the affected
child as well as for the care-giver. This gives true importance to the
survey. What we have done is made several changes that became apparent as we
reviewed the answers. We also added several extra demographic questions to
target the responses more appropriately.

If your child has been decannulated, we would still like your input.  Please
fill the questions out from the time point of when your child had a trach.

The final version is now available. PLEASE TAKE THE TIME TO COMPLETE THIS
FINAL VERSION.  It may seem very similar as a whole, but it is CRITICAL that
you complete the entire survey in order for us to be able to draw meaningful
conclusions. Once we have the final answers tabulated, we will summarize our
conclusions for all to see.

Again, a word of thanks. If you have any questions, please feel free to
contact us.

Questionnaire:  http://www.twinenterprises.com/trach/questions/

Christopher Hartnick MD
Department of Pediatric Otolaryngology
Children's Hospital Medical Center
Cincinnati, Ohio 45229
Email: harq4k@...

Cynthia Bissell, RN
Email:  cmbissell@...
Aaron's Tracheostomy Page
www.tracheostomy.com

To the 128 families who completed the Pediatric Tracheostomy Quality of Life
Questionnaire, a tremendous thanks!  We have some initial data that is mostly
descriptive.  The overwhelming majority (>80%) of respondents noted that
their child received the tracheostomy between the ages of 0 to 2 years of
life.  Roughly 30% of these children have subglottic stenosis, 30% have
tracheomalacia, and 15% have bilateral vocal cord paralysis.

In terms of the questionnaire itself, families have responded in a fairly
uniform fashion about the amount of stress and psychological burden they feel
and their child feels.  The questionnaire also consistently reflects the
economic burden faced by those coping with a child with a tracheostomy.  The
most divergent area of the questionnaire is the assessment of the child's
status; this makes sense when one thinks that some of the children are
certainly sicker than others.  This is an area we will have to work on and
expand upon to more accurately characterize the group as a whole.

Based on the initial response we see a need to refine the questionnaire, so
that it can be truly representative of a unified and coherent voice.  Our job
now is to look at the data and refine the questionnaire so that it can be
truly representative of a unified voice.

We are now in the process of completing the analysis.  We hope to have a
final, expanded version ready by January.  Thank you once again for your time
and effort.  Please, as always, feel free to contact us with any questions
you may have.

Sincerely,
Christopher Hartnick MD
Department of Pediatric Otolaryngology
Children's Hospital Medical Center
Cincinnati, Ohio 45229
Email: harq4k@...

Cynthia Bissell
Email: cmbissell@...
www.tracheostomy.com

Dear Group,

I wanted to let you all know that we have had a very good response from the
questionnaire and I wanted to thank all of you who took the time to fill it
out!  Many of you expressed interest in the results of the survey.  I also
wanted to let you know that the findings will eventually be posted on Aaron's
Page.
For those of you who have not participated in the survey yet, there is still
time.  You will find the survey at:

http://www.twinenterprises.com/trach/questions

We would very much appreciate your input.  If you have any questions or
comments, please feel free to e-mail me at:  cmbissell@...

Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com

Dear Group,

Christopher Hartnick, MD (who works with Robin Cotton, MD, in Cincinnati) has
put together a Pediatric Tracheostomy Quality of Life Questionnaire for
caregivers of children with tracheostomies.  By completing this on-line
questionnaire you could help improve the quality of life for all children
with tracheostomies and their families.  You will find the questionnaire on
Aaron's Tracheostomy Page at:
http://www.twinenterprises.com/trach/questions/

Below is an introduction from Dr. Hartnick.  If you have any questions,
please feel free to e-mail me at cmbissell@... or Dr. Hartnick at
harq4k@...

Your participation is crucial and very much appreciated!

Sincerely,
Cynthia Bissell
Aaron's Tracheostomy Page
www.tracheostomy.com

*****************************

Greetings and thank you for your interest in the Pediatric Tracheostomy
Quality of Life Questionnaire. This questionnaire represents the work of
Pediatric Otolaryngologists, dedicated "airway" nurses, respiratory
therapists, and social workers, all of whom take care of children who have
undergone tracheostomies. Our hope is to create a questionnaire that
illuminates the particular concerns and problems that these children and
their families share and face every day. By developing such a questionnaire,
we aim to achieve several goals. First, we hope to be able to identify areas
within the field of pediatric airway disorders that need improvement, both in
terms of the care that children and their families receive in the hospital
and when they leave the hospital and return home. Second, we aim to create a
uniform voice representing the many families who have experienced frustration
with the daily trials that the care of a tracheostomy demands. The hope is
that a uniform voice would strengthen the demand for improved care such a
lobbying with the insurance companies for increased payments for home care
nursing and supplies. Finally, we aim to demonstrate to insurance companies
the true psychological, economic, and medical demands that a tracheostomy
places upon a child and his or her family, and to demonstrate the need for
continued coverage for airway reconstructive surgery.

To these ends, YOUR SUPPORT IS CRUCIAL! We are asking you to complete the
following questionnaire (please answer every question) so that we can
demonstrate that the results of the questionnaire speak to a large community
with common interests and concerns. If there are two parents/care-givers,
each can fill out the form separately as long as they don't talk about the
form while they are taking it.  If you know someone caring for a child with a
trach who is not on-line, please print out a questionnaire for them.  We
appreciate your time or effort. If you have any questions, comments, or
concerns, please feel free to contact us with your thoughts.

Thank you once again.
Christopher Hartnick MD
Department of Pediatric Otolaryngology
Children's Hospital Medical Center
Cincinnati, Ohio 45229
Email: harq4k@...

Dear Friends of Aaron's Tracheostomy Page:

I have added a new section to Aaron's Tracheostomy Page called "Associates."
I apologize for those of you who are annoyed by advertising, however, this is
an easy way to help defray some of the cost of maintaining and hosting
Aaron's Tracheostomy Page.  As the holiday season approaches, please consider
bookmarking and shopping via the links at www.twinenterprises.com/associates.
  Each time you make a purchase via these links. Aaron receives a commission
on the sale.  I have picked only the very best companies, in which I feel
confident recommending to you.

As always, thank you for your support and for helping to make Aaron's
Tracheostomy Page the Internets leading tracheostomy resource!

Some of Aaron's Associates
Disney Store
Outpost.com
e-toys
Amazon.com
Sharper Image
Staples
Brookstone
More.com
Petopia.com
Barnes & Noble
Thinks Remembered
CVS

Sincerely,
Cynthia Bissell
www.tracheostomy.com

New on Aaron's Tracheostomy Page under "Changing a
Tracheostomy Tube," a movie of Aaron having his trach tube
changed (2MB mpg file).
Changing a tracheostomy at:
http://www.twinenterprises.com/trach/change.htm
or access file directly via:
http://www.twinenterprises.com/trach/misc/video/change.mpg

Cynthia Bissell
www.tracheostomy.com

"What's New" is new!  To quickly find the latest additions to Aaron's
Tracheostomy Page, go to:

http://www.twinenterprises.com/trach/new.htm

Cindy Bissell
bissells.com

Dear Group,

If any of you are looking for a place to chat in real time, Aaron's
Tracheostomy Page now has a Chat Room powered by e-Groups.  You will need to
subscribe to e-Groups to use the room.
http://www.egroups.com/chat/tracheostomy

Cindy Bissell
www.tracheostomy.com