Change

I've never been very good with change.  I like my world to be in order with routine being very comforting.  Once I had kids, I realized that this was impossible.  Once I had Noah, I realized that my nice, comfortable world had become like a tornado.  I learned how to be flexible.  I learned to "go with the flow".  I learned things constantly change.  I don't necessarily like it but that's life. 

We have gone through many changes over the years.  This year, our big change is Noah going to a new school.  (I will post more on this later).  In the past few years, the biggest medical changes were a new vent, a new pediatrician,  and a new DME company.  A few years ago, one of the doctors who diagnosed him left for Seattle.  We were not happy but we still had our other two doctors and things were fine.  Last year, the head of Pulmonary, the doctor who helped diagnose Noah, the doctor who comforted me while giving the diagnosis, the doctor who assured me Noah would be fine, the doctor who got him home before Christmas, the doctor I trusted to keep anesthesia in line and do his bronchs,  LEFT.  Now, we only have one doctor who I completely trust.  Fortunately, we now only do the bronchs every other year so Noah will not have one this year.  This will give us a year to figure out what to do, as I do not trust anesthesia at all. 

Another big change is that the trusted RT, who is very good at his job, left the hospital.  He still continues to work with our children's hospital but he's not there every day.  At the last clinic, I was also told that there had been big changes to the DME company.  The two people who ordered Noah's supplies and made sure we had what we needed, left the company.  So now we have all new people at the DME, all new RTs at the hospital and we are left with only one doctor with CCHS knowledge.  My anxiety is high. 

This week, Noah had his annual sleep study, where they check his ventilator settings.  Usually, we would do the study, stay in the morning until the doctor (the doctor who left!) came around and made ventilator changes if needed. Now, a doctor doesn't come around.  We leave, wait for the study to be read and they call us with any changes. 

I got the call yesterday.  An unknown (to us) pulmonary doctor read the results and wants to change Noah's settings from 20 to 14.  (a 6 point jump).  Is this doctor familiar with CCHS?  I have no idea.  Most of the doctors I have found try to lump him in with normal ventilator patients like kids with CF or SMA.  Regardless, I'm questioning such a large change. 

The other issue is that I question the validity of our CO2 monitor.  These monitors are very rare with home use.  Most DMEs have not had any experience with them.  We were fortunate to get ours upon Noah's discharge, although there was an issue where the doctors were thinking about not releasing him from the hospital until we got the machine.  Thank goodness they let him go because it took several months after discharge to get the machine.   We used it for a year.   Then, Noah became sick.  We kept checking his co2 and the machine kept saying it was high but not dangerously so.  Using my instincts, I took him to the hospital.  They checked his co2 and it was so high they admitted him.  Our co2 machine had failed.  That was the first time I realized we cant fully trust these machines.  I made a call to the DME and they had to scramble around to get us another machine.  We came home, used the machine and all was well.  About a year and a half later, the machine started acting up and I called the DME.  They informed me it should be calibrated but they couldn't do it because they were only suppose to supply the machine, not work on them.  They had no idea what to do.  Eventually, over the course of a year they got someone from the company who makes the machine to come to the house.  He recalibrated it and said it was reading 20 points lower than it was suppose to be reading.  So for over a year, when his co2 said it was at 30, it was really at 50.  (When it hits 50, he is suppose to be on the vent 24/7 until his numbers come down.  See how important this machine is??? Its the second most important piece, with the ventilator being first.  We use the numbers from this machine to adjust his breath rate and pressure rate on the ventilator.  When co2 is high, we bump him up and give him extra ventilation). After I found this out, I was livid.  I informed them this was his life on the line and they needed to step it up. 

Not much really changed.  We continued to use the machine, although I didn't fully trust the readings.  I used Noah as a gauge.  I knew if he had a headache, acted more tired than usual and more lethargic, that his co@ could be up.  The manager of the DME was able to get a calibration machine from the manufacturer and he came to the house once more to calibrate it. 

Over the course of the next few years, the manager left the DME.  The one person who knew anything about the co2 machine was gone.  We have very few options for DMEs.  Most do not do ventilators.   Some do not take our insurance.  We were stuck.  

Flash forward to two years ago.  Shortly after our move to the new house, we received a call from the DME that they were discontinuing our service.  They were no longer going to have ventilators and they were no longer doing pediatric patients.  In fact, they were bought out by another company altogether and were becoming a new company.  They gave us a month to find a new provider and said they were going to come pick the vent up.

Our favorite RT, (the one who left) gave us the contact of our current DME. I called them, they came out with our new ventilator and setup.  Miraculously, they were much better than our old DME.  We were able to get a second ventilator, a better pulse ox and supplies were always on time.  Most times, the supplies were correct but if they weren't, they sent what we needed the next day.  Things were not backordered anymore and we were able to get saline bullets for the first time in years. 

As for the co2 monitor, they informed us that we owned the one we had so we should just keep it and use it.  I mentioned it at vent clinic every time we went but nothing was ever done. 

Flash forward to present day.  With the breath rate being so low, I need to be able to make sure his co2 doesn't climb too high.  Our favorite RT now works for our DME company.  This part is good.  The bad part is that when he called me yesterday about the monitor he informed me that he had moved to Gulf Shores.  So now, two of our 3 doctors and our RT who knows about CCHS are gone.
As for the co2 monitor, he ordered new ones.   He informed me that the downside is that even he does not know how to use them.  They are suppose to be mailing us one and we will have to figure out how to use it.  He informed me that the supplies that go with this machine (tubing, water traps, etc) should be sent every month with supplies.  This does not give me much comfort in the fact that they don't know how to use the machine and now he's 5 hours away and can't come help us.  He did tell me to call if I needed, which I most definitely will. 

So, I am left with a doctor I don't know making changes to  Noah's settings and a new machine that nobody knows how to work.  I am strong and I will figure this out.  It's so frustrating though.  Just once I would like for everything fall into place and have no complications.  It's beyond exhausting to deal with these machines, keep Noah alive, try to live as normal a life as possible, deal with a medical community that doesn't understand and watch trusted doctors and RTs leave. 

Such is the life of a rare disease.  I will update about the co2 machine once we receive it.

To be continued.....

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)

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. 



 

 

 

 

 



 

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

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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

http://kevinmichaelokelley.blogspot.com/2009/12/color-of-urine-2009-year-in-review.html

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.

 cancer.

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.

2009...

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. 

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. 

For the NICU Mom

To the NICU mom. I see you. I get it.  5 years ago I was in your shoes.

The day of your child's birth.  It's suppose to be a magical day but instead turns into a nightmare.  One minute you're holding your baby in your arms and the next minute they are wheeling him to the NICU. Some of you don't even get the chance to hold your baby before he is carried off in an incubator.  Instead of holding, feeding and loving your child your days are reduced to short visits by his bedside.  Nobody visits you and you don't want any visitors.  Nurses basically leave you alone and when they come to your room they have a sadness in their eyes and speak to you in hushed tones.  Your eyes are perpetually red from crying. There is a dark cloud hanging over you.  You can't eat. You can't sleep.  You go through the daily motions of life but you are numb.

You walk in to the nicu.  You would expect that a room full of babies would be loud. You'd expect to hear baby cries, coos, hear the babies moving around. But there is none of that.  All you hear is the soft sounds of machines.  Hear the occasional beeps of a monitor.  It's completely silent.

As you look at your baby, you see him covered in wires.  He lies completely still and looks like an alien.  You wonder what happened.  Was it something you ate. Something you did or didn't do.  Your husband is there too.  When you look at him you feel his sadness but he is trying to be strong.  Men aren't suppose to show emotions but you see how much this is tearing him up inside.  He's doing his best to comfort you.  But you can't be comforted.

The nurses are respectful.  They explain everything that they are doing. They give you updates. But it's not the same. YOU are suppose to be feeding your baby, changing his diaper, rocking him to sleep. Instead a stranger is watching him. They know his needs.  They are his caregiver.  You feel like a failure and a bad mom.

As you spend your days there, you watch other babies come and go.  You see the happy parents as they put their baby in the car seat to leave. They look at you with pity and sorrow.  Then they turn around and walk out of the room with their baby. They are going home.  You are not.  You feel a lot of envy. Then guilt because really do wish them well.

You worry so much about bonding with your baby.  You hear the experts say how important it is to bond.  How can you bond with a baby that is covered in tubes and wires?   How can you bond with a baby that has to live in the hospital while you live at home?  How can you bond with a baby who is always asleep every time you visit?  How can you bond with a baby when they won't even let you hold him?

You have other children who need you so you leave your baby in the hands of strangers and head home to your other children.  You put on a brave face and try to act like everything is normal.  You go through the routine of cooking, eating, homework, hanging out at home all the while knowing someone is missing.  Your body is at home but your heart is at the hospital.  You don't show your other children your tears because it will scare them.  You put them to bed at might and allow yourself time to grieve.  You're grieving for the baby who does not have a diagnosis. You're grieving for the happy time that families have in the hospital after a baby's birth.  But you have no good memories.  No first pictures.  No happy visitors to your home.  No chance to dress your baby in the cute little clothes that still sit at home.  The baby needs no clothes only a diaper.  By the time your baby comes home he will have outgrown those cute clothes.

Every time the phone rings you jump. You race to see if it is the nicu calling.  You really begin to hate that place.  You know you need to be there but you really hate to go.  You wonder why you even bother because all you do is sit by your baby's bed while he sleeps. How is he going to know if you are there or not?  But you go.  You make yourself go because some small part of you hopes that he hears your voice and feels your touch.  You pray that he knows you're his mom and that he know you love him. Most of all you hope he knows how sorry you are that he has to stay there.

You wait for a diagnosis. The doctors tell you the tests they have done.  Everything comes back normal. You are relieved but your patience is wearing thin. Why can't they figure out what's wrong?  With all of his technology why is it taking so long?  Then the day arrives. As you visit your baby all of the doctors and nurses gather around.  Their faces are somber.  Nobody is smiling.  Your heart clinches in fear.  The doctor says what you have been waiting for but dreading to hear.  You have a diagnosis.  You hear the diagnosis and your heart breaks into a million pieces. You crumble and your husband reaches out to support you.  You cling together as the doctor keeps talking.  But you don't really hear him at first. There's this roaring in your ears. You feel like you are outside of your body.  Then you start to calm down and focus on what they are saying.  You hear the words "home" and "he's going to be fine" and you begin to feel a little hopeful.   You begin to realize that the other doctors were wrong. Your son will not live in an institution. He will come home.  It will take a long time and you will have to have a lot of machines to keep him alive but he tells you the magic words "YOU" will care for him at "HOME".  The diagnosis is terrifying.  You're so very sad that this will be your child's life from now on but there is a great relief in knowing what's wrong.  Now you have a plan.  Now you can work towards getting him home. There's a light at the end of the tunnel.

I am here to tell you that you can do it.  You're stronger than you think.  Life will never be "normal" but you find your own new "normal".  You will come out of this a stronger more compassionate person. You've been changed forever.  Not many people have been through what you have.

As you sit at home and hold your baby you realize how precious life is. You see how much of a fighter your baby is and he becomes your hero.  He's so strong and you know that he can handle whatever life throws at him because he's been through the darkness.  Occasionally you will be brought back to those dark days. You will smell hand sanitizer and be reminded of the hospital.  You will see a mom somewhere in public holding her newborn baby and have some regrets that it wasn't the same for you.  Your baby didn't get to wear the cute clothes.  Your baby didn't get to have a first photo.  Your baby didn't make a sound for a very long time.  But you realize that none of that matters now.  All that matters is that your baby is home where he belongs.  You have finally bonded and your bond is unbreakable.  You and your baby have come through hell and your love is fierce for one another. Now the little baby begins to grow and only wants you. Nobody else will do.  You never tire of the baby clinging to you.  You never complain about the sweet little boy who has grown up to make lots of noise. You embrace every hug, every kiss, every I love you. You even embrace the messes, the noise, the times you have to send him to the corner. You secretly love it when he's disobedient because that means he's alive and living his "normal" life.   You embrace all of it because you know how precious it is.  You enjoy every little moment.

Hang in there NICU mom.  One day you will look back on this experience as a bad dream.  There is hope. You're not alone. You will get through this.  

A Year in Review--The Fourth Year

Noah enjoying his birthday cake

Noah at Chuck E. Cheese

Today is Noah's 5th birthday.  I cannot believe that another year has passed so quickly. It seems like just yesterday we were learning about CCHS and ventilation and now we are moving onto kindergarten and investigating other ventilation options as he grows up.   This past year was a really good year.  He has really done a lot of growing up this year. Noah is very bright and constantly asking about everything he sees and hears.  He loves to tell everyone what he knows about his surroundings including all of the colors and numbers.  The best part from a medical standpoint is that he had no real medical issues this past year and has been very healthy and stable. 

We began the year by attending speech therapy at the elementary school twice a week.  He made such good progress that we were able to drop a therapy and only attend once a week.  His vent clinics went very well.  Noah's annual bronchoscopy was uneventful, which was a tremendous blessing given all of the turmoil that we had after the previous one.  No granulomas were found and there were no other issues.  His annual sleep study went well.   Everything was in the proper range and no ventilator settings were required.  He also had his holtor monitor (heart monitor)  and  neuroblastoma screening, which were both normal. 

This year was the year of travel.  With both his sisters playing travel volleyball, we were on the road most every weekend during the season.  We went to Tennessee, Georgia and several places here in Alabama for tournaments.  Noah became the unofficial assistant coach of the team and loved having 12 girls and their coach making him a part of the team.   During the summer, we spent a lot of time at Gulf Shores because his oldest sister played sand volleyball.  We had so much fun spending time at the beach.  Noah loved playing in the sand and the water.  We purchased a pop up canopy that was large enough to cover all of our beach chairs. We filled a large cooler with water, snacks and drinks and spent the days on the beach. Fortunately, the summer was fairly mild and it never got too hot during the tournaments.  As an extra precaution, I took a squirt bottle filled with water to squirt around the trach in case he got sand there but with the flextend trach, I really didn't need it.  I just put him in a swim shirt and tucked the trach under the shirt.  It worked very well.  I had to be very cautious with the heat and make sure he didn't get too hot.  He got very tired of me telling him to take a drink every so often, he just wanted to play in the sand. 

Noah had a really great time this summer at Vacation Bible School.  He really began interacting with the other children and actually participated in the activities.  He was very reserved last year so it was very encouraging to see him branching out socially.  It's so funny watching him.  He is very decisive and will tell them if he doesn't want to do something.  His personality is adorable.  He made several new friends at VBS and invited them to his birthday party. 

Another fun thing Noah did was to ride on Thomas the Train.  He loves trains and every year Thomas comes to visit our local train station.  They have a lot of fun activities related to trains.  He was very excited to be able to see Thomas. 

Noah was also able to spend the night with his Nana and Poppa.  They have kept him a couple of times this past year and have done fantastic with the vent and trach care.  It was a huge step for them and for us.  It has been fantastic for him to do the things that "normal" kids do and spend the night with his grandparents.  He loves staying there.  The spoil him terribly and he loves every minute of it.  Every time we go over there he asks when he is going to get to spend the night with them again. 

We recently had his birthday party at Chuck E. Cheese.  He invited several of his friends and a lot of family.  We spent the day playing games, eating pizza and cake and visiting with friends and family.  The noise level was little overwhelming for him at first but he quickly recovered and had a great time. 

 

Noah has also began 4K this year.  Currently, he attends twice a week from 9-1 at a local church based private kindergarten.  Because it is a private school, they do not have a nurse so I attend with him.  I stay in a room upstairs in case I am needed for a medical issue.  His starting school has not bothered me as much as I thought it would.  I guess its because I don't actually leave him.  I am on the premises.  Next year will be a whole different story.  He will be attending every day all day. The teachers and staff there have been fantastic and do a great job of watching him and making sure that he is ok.  They brought him to me once to check his trach because he had some nystatin powder around his neck.  We use the powder every night when we clean the trach.  They noticed some clumped up around the stoma and wasn't sure if it was a concern or not.  Now our other big decision is whether to leave him at his current preschool (which he loves) or put him in the public schools 5K program.  When we move him to public school, we will have to go through all of the negotiations with the school on nursing and Noah's care and what will have to be provided as a result of his condition.  I would prefer to leave him where he is now but if he went public, they would be required to have him a nurse and I could actually leave the school, which would be nice. I think that it will be a fight to get what we need with the public school.  I'm not looking forward to that part of it. 

Watching him grow and change has been such a blessing.  It is amazing to see how far he has come. 5 years ago I saw him being wheeled out of my room in an incubator going to the NICU.  I observed him with tubes and wires poking out of his body.  He never made a sound.  Now I see him talking constantly, playing in the sand, swimming in the pool, aggravating his sisters and I marvel at how strong he is, how much of a fighter he can be.  He is an amazing mighty little man and I am so blessed to be his mother.  They told me he would be in an institution the rest of his life.  He continues to show them just how wrong they were.   

Noah after his trach surgery

Noah's first birthday

Noah's first birthday



Coach Noah and the volleyball team

Noah and Thomas the Train

   

 

 

 

Happy 5th Birthday my Mighty Noah.  Mommy (and Daddy) are so proud of you.