Thursday, August 13, 2015

A Better Way

The CCHS community is in mourning now.  A young mother with two small children had CCHS.  She somehow went to sleep without hooking herself up to her ventilator and passed away. I did not know her and had no interactions with her but somehow it has hit me hard.  I can't imagine the pain her family is going through. 

We work so hard when our kids are young.  We fight for services, go through endless hours of lack of sleep, become nurses when we have no formal training, work tirelessly to keep our kids healthy and alive, even to the point of neglecting ourselves.  Then they begin to grow up.  We start letting go a little at a time.  We send them to school.  We allow them to go places without us.  They grow up.  Giving a vent dependent child their independence is extremely difficult.  I know that one day I will have to let Noah go.  He will leave our home and have his own home.  This is the most terrifying thing.  When our CCHS kids live with us, we control when they hook themselves up, we can hear the alarms and respond while they are sleeping, we drive them around in our cars.  What happens when they grow up?  They leave the house and are responsible for hooking themselves up at night, they are responsible for hearing (or not hearing) their alarms and responding, they are responsible for driving themselves alone.  What happens if they fall asleep watching tv?  or studying? What happens if they get in their car, have an accident and are knocked unconscious?  All of us, at one time or another, have fallen asleep, whether it was during a movie, studying, or even when we weren't feeling 100%.  Our kids do not have this luxury.  One small mistake of not hooking themselves up.  One small car accident.  This could cause them to lose their lives. 

As a fellow CCHS mom said, there has got to be a better way.  Relying on these machines to live is terrifying.  Machines fail.  People make mistakes and neglect to hook themselves up.  Our kids pay for it with their lives.  This is what scares us CCHS parents.  We need a cure.  We need a better solution.  We need to find a way to make our kids lives better. 

RIP Lauren.  May your family and friends find comfort in this difficult time.  May your parents know that they did everything they could do for you.  They are the heroes in that they let you live your life the way you wanted to live.  They let you grow up.  God bless you and your family. 

As for the rest of the CCHS family, we continue to fight.  We continue to look for answers.  We continue to look for a better way. 

(Special thanks to CCHS mom S. Yang for the inspiration for this blog and the blog title)

Friday, August 7, 2015

The Ventilator Change

During the month of June, Noah was admitted to the hospital to change over from the LTV 950 ventilator to the trilogy ventilator.  This is our experience with the changeover.

On June 29, 2015 Noah was admitted to the hospital to receive a new ventilator.  During this time, he also received his annual sleep study, his annual holtor monitoring and his annual neuroblastoma check.  This was a very interesting hospitalization because he was not sick.  During the day, he was allowed to roam the hospital and the nurses only checked in with us a few times since this was not the usual hospitalization.   Ventilator training was extremely easy since we already knew how to work a ventilator (a more complicated ventilator).  Going from the LTV to the Trilogy was an extremely easy transition.  I realized very quickly that the Trilogy is an easier machine to work and also easier to transport places. 
Here is a picture for comparison.  The Trilogy is on the left and the LTV 950 is on the right.  The Trilogy is much lighter.  It has a handle at the top for easy transport.  It is all digital.  There are 4 buttons on the front.  One is the power button, one is the silence alarm button and the other 3 are used to access the menu.  There is the menu button in the middle and an up and down button on either side that is used to scroll through the menu.  The LTV has many more buttons and menus that are hidden and hard to find. With the Trilogy, you just scroll through the options, hit select, make whatever changes are needed and then hit the ok button to accept the changes.  It's extremely easy to work and change the settings. 
Here is a comparison of the power cords.  The Trilogy is on the left and the LTV is on the right.  The LTV power cord was very heavy and bulky.  The Trilogy cord is just the same as a laptop computer cord and it can be bought at any computer store. 

Here is the battery comparison.  Trilogy is on the left and LTV is on the right.  The Trilogy battery stays in the back of the ventilator so it is always charged.  The LTV battery is a lot bigger and heavier and needs its own power cord to charge. 

The circuits are different as well.  Trilogy is on the left and LTV is on the right.  The Trilogy has one tube in the circuit while the LTV has 2, one of which is the PEEP valve.  The PEEP is built in on the Trilogy.  When setting up the circuits on the LTV, we always had to do a leak test.  There is no leak test with the Trilogy. 
As you can plainly see, the Trilogy is lighter, easier to use, and more easily portable.  We were able to eliminate a huge power cord, a ventilator stand (the Trilogy is flat and doesn't  need a stand), extra batteries, cords for the extra batteries and a long bulky circuit.  Another huge plus is that there are no unnecessary disc sense alarms.  Before with the LTV, the circuit had to be placed a certain way.  If it were turned upside down, then it would collect water and alarm.  This does not happen with the Trilogy.  There is also no autocycling.  Over the course of the night, water would collect in the LTV circuit, causing Noah to breathe very fast and pulselike.  We would have to get up several times a night and drain the water.  This does not happen with the Trilogy.  We have less vent alarms overall.  The only major issue was that Noah had a pretty big leak around his trach.  We compensated for this with the LTV by turning off the low min volume alarm.  However, we can't do that with the Trilogy because this is the main alarm.  Instead, we upsized his trach from a 3.5 to a 4 and we lowered the alarm rate.  This helped tremendously.  He is still able to talk well with the larger trach. 
The sleep study at the hospital was very awkward. This was done in his room.  The sleep technician sat beside his bed the whole night.  Neither I nor Noah got much sleep.  She sat there with her little light and her computer.  We heard her typing, shuffling papers, moving around in her chair, and her cell phone vibrating.  In addition to this, there were people in and out of the room all night.  The next day, the RT informed us that the sleep study wasn't "great".  I told him of course it wasn't because we did not get any sleep.  Noah is not use to having someone sit beside his bed all night.  I'm so glad we never had nursing because this would have driven us nuts night after night.  Regardless, they were able to get some numbers.  We increased his breath rate a little but he basically has the same settings that he did with the LTV.
After one night in the hospital, Noah was released.  The first night at home was interesting.  I was so accustomed to the louder noise of the LTV.  The Trilogy is much quieter.  It took a few nights to adjust to the quiet.  He alarmed quite a bit so I adjusted the alarms.  The next night was much better. 
Overall, the changeover from the Trilogy to the LTV was one of the best changes we have made.  The only negatives that I see are that the Trilogy goes through a lot more water.  We would go 3 days using one water bag with the LTV.  Now, we pretty much go through a bag of water a day.  Also, the Trilogy has a whisper valve that the LTV does not have.  The valve is near his chest.  I find that he covers it up with blankets or his bear, causing it to alarm.  I think it would work better if the valve was located towards the bottom of the circuit, similar to where the PEEP valve was on the LTV.  As I stated above, the quietness of the Trilogy was also a small negative but we have adjusted to it now. 
I highly recommend the Trilogy over the LTV.  It is more portable, easier to use and much quieter.  Our next step is to transition from the trach to a mask.  This transition will probably take a lot longer or even not at all.  Noah hates masks on his face.  I firmly believe it's because of the "smelly masks" they use for the bronchoscopies.  He doesn't even like Halloween masks on his face.  We are not going to push the issue.  As long as he is happy with his trach then that's what he will use.  We definitely want him to have some control over his care.  Maybe one day, there will even be a smaller, better ventilator than the Trilogy. 
Bye Bye LTV.  Thanks for keeping him alive for 5 years. 



Thursday, April 30, 2015

We are the Weeds

I will never forget the news I received in June 2009.  I was hugely pregnant with Noah.  We had just completed our annual one week vacation at the beach and were returning home when my phone indicated that I had an email.  Being bored while Chris drove home, I opened my email and my heart sank.  The email was from our good friend Kevin.  He explained that he had gotten the news from the doctor that he had been diagnosed with cancer.  He went on to explain the events leading up to his diagnosis and explained the prognosis,  which was good.  We were shocked and saddened.   The Weeds (see my explanation below) rallied around him and began sending messages of love and encouragement. 

Shortly after his diagnosis, Noah was born.  Unfortunately, we found ourselves  dealing with our own family health crisis.  The Weeds rallied around us this time and brought meals, love and encouragement.  One day at church, we were presented with a special gift for Noah.  Kevin and his family had a shirt made.  On the front, were the words The Mighty Noah and on the back were the words Trach This.  Kevin had given Noah his special nickname and his first trach this t shirt.  Throughout the whole 4 months Noah was in the hospital, Kevin constantly asked about him.  He was always concerned with his progress and when most people's interest was only polite, Kevin's was genuine.  When finding out about CCHS he asked us so many questions.  Later, when Noah was released from the hospital and we began all of his therapies and had all of his swallow studies, Kevin wanted to know all about it and seemed genuinely interested.  He didn't just listen.  He asked questions and seemed eager to learn about CCHS. 

Noah's first outing after being released from the hospital was our annual Weeds Christmas party.  Kevin was so excited to see Noah in person for the first time.  He held him and talked to him.  Throughout Noah's life, Kevin was there, commenting, showing interest and loving Noah. 

Flash forward 6 years later and we are attending the church for Kevin's memorial.  There was much sadness but in the midst, much happiness for the fact that we had been his friend.  He will always be remembered as a fighter, like the Mighty Noah.  His love for his family was deep.   His love for his friends was evident.  He will always be one of my favorite people.  One of my most favorite memories of him was shortly after Noah was born.  I was in the midst of travelling to the hospital twice a week for Noah's therapy and had many endless sleepless nights.  Our friends were still there but they didn't really ask us to help with anything for fear of intruding.   I was removed from a committee at church, which was fine and I know it was meant as a kind gesture to help us.  But, it made me feel somewhat isolated and not as useful as I had previously been.  During this time, Kevin asked me to make dinner for his family.  His wife was having some kind of procedure and he wanted dinner for his girls.  I was so excited.  Yes, it was a pain to take Noah as an infant to the store and get the stuff, come home, and make it.  But it was the best feeling ever.   Someone needed me to do something and it made me feel "normal" again.  Kevin did not let Noah's condition stop him from including us.   I will forever be grateful to him for that. 

Kevin was always there with a ready hug and his big smile.  Sure he could have a potty mouth and he was very strong in his opinions but he was one of the good guys.  He leaves behind a whole community of mourners.  His wife and his 3 young daughters will certainly feel his loss more than anyone. But looking around the church at all the people paying their respects shows the type of man he was and how much he was loved.  I saw a whole row of his coworkers, I saw former college class kids that were now grown up adults (Kevin taught a college age Sunday School class), I saw youth that were now grown (he was also the Youth Minister for several years), I saw older church members, I saw rows full of the girl's soccer team who had come to pay their respects.  People of all ages were there, remembering him and celebrating him. 

I sincerely hope he realized how much he was loved.  I deeply regret that we didn't spend more time together.  I think my husband said it best:

Father, Husband, Son, Musician, Follower of God, Bozo the Clown, Jesus Impersonator, Blogger, Advocate, Athlete, Fighter, Runner, Fantasy Football god, Manager, Youth Director, Leader, Football Fan, McRib Lover, Teacher... The list goes on but I am most glad that to me he was always a Friend

Kevin and The Mighty Noah

Kevin had a blog.  Below is my all time favorite blog that he wrote.  The whole blog can be found at

My favorite passage that he wrote is this:

i am not very well versed on being the victim of a curse. perhaps, you don't know that you are, in fact, cursed until you come out the other side. let's take a look at certain proverbial stones that struck the heads of the weeds class in 2009.


the death of a husband/father/friend.

the celebration of a newborn child tempered by the realization that something is amiss.

the passing of the mother of one of our emeritus members.

why did all of this happen to us? was it because we didn't get along very well with the previous pastor and he has used his black magic, upon leaving, to ruin our lives? well, that's my theory, but i am rarely (and by "rarely" i mean usually) right about anything.

were we just unlucky? maybe in some terms. in others, though...

i lost a kidney, but not my life.

our class was blessed with healthy twins and a fighter in the mighty noah that will make all of us, most especially his incredible parents, better human beings.

one of us was a serviceable lay leader.

one of us rejoined our church's staff.

one of us will manage our facility with a strong, yet humble, hand.

one of us (with the help of the rest of us) will always make vbs rock even if she says this year is her last year.

one of us is now a city councilperson and can get me free stuff (oh yeah, and change her church AND her city for the better)

one of us continues to make our daycare a place worthy of a waiting list.

one of us championed our children, challenged our council and then led the way by shepherding our many faces of our future, herself.

one of us will bring our worship technology into the current millenia.

one of us will set an example for all our of church's mothers through the trials she has and will continue to overcome at home.

one of us, with his "questions", got this ball rolling.

were we cursed after june? as far as this blog was concerned, um, yes. absolutely.

in reality, crappy things happened, but lessons in perspective through the victories that we enjoyed together will forge, for us, a brighter tomorrow. that's a promise.

good riddance, 2009. don't let propaghandi hit you on the way out. because they will hit you. hit you in the face with my best record of the year.


the end of my world as i knew it.

Our Sunday School class is called the Weeds.  Weeds are strong and thrive even in harsh conditions.  Weeds are scattered everywhere.  Weeds are beautiful in their own way.  I think this is a wonderful way to describe Kevin.  Even though he was facing a terminal illness, he handled it with bravery.  His wife, Sarah, is so strong and stood by him through it all. Rest in peace my dear friend.  Know that your girls will always have someone to go to if they need it. 

To Tanya and Donald, Brad and Kathy, Deborah, Kim, Kevin and Sarah, and Chris and myself,  Donna, (and even Katie and Chris later on).  We will always be the Weeds.  May we honor Kevin's memory, love and support his family and live our life to the fullest until we meet him again.  #ftcs. 

Thursday, January 8, 2015

This Gets Easier---Or Does It?

When Noah was first diagnosed with CCHS I spoke with several CCHS parents and they all told me one thing--it gets easier.  I really doubted them but now I understand why they told me that. 

Noah's first year was filled with appointments.  Twice a week I loaded him and his equipment (no nurse available to help) by myself and went to his therapy at the hospital.  In addition to this, I also had to take him to all of the normal first year well check ups.  We also had to coordinate his speech therapist, occupational therapist and his physical therapist to come twice a month to our house for home visits.  Looking back, I wonder how I did all that alone.  It was definitely not easy. 

Travelling was also an issue.  We could not go anywhere without the vent.  As an infant, he would fall asleep at any time so we had to make sure his vent was with us, even if it was just a short trip to the store.  Definitely not easy. 

I can see now, that the older he gets the easier it can be.  We no longer pack the vent up to go places around town.  He no longer has the home therapies and we do not frequent the hospital as often.  In this respect, it has gotten easier.  But, now we are facing other issues. 

School is a big issue.   Do we keep him in private preschool where I will have to go with him everyday or put him in public where there is a chance that they have no idea how to care for him in an emergency.  I realize that these school nurses are suppose to know what to do but it's hard for me to believe that they can care for him when his condition is so rare.  Even the nurses at Children's Hospital have never heard of CCHS.  They refer to me and ask a lot of questions. So how can a school nurse really know what to do? Plus, the children in his pre K class accept him.   There is no bullying or making fun of him.  I'm sure at some point in the future this will not be the case.  He is going to have to deal with being "different" and I can only hope that he has surrounded himself with good friends and not care what anyone else thinks.   In this respect, I think its harder.   

I know that there are going to be many more issues that arise as he ages.  At some point, he will want to be self sufficient.  How can he do that if he doesn't even hear the alarms going off when he's asleep?  What happens if he's driving and is in an accident where he is knocked out?  What about college?  He's not going to want his mommy there to hook him up every night.

All of these (plus some I probably haven't even thought of) makes me think that it's not necessarily easier as he grows.  I think it gets harder.  I suppose we just take it one day at a time and figure it out as we go along.