Saturday, December 15, 2012

Coming Home

December 15, 2009.  The day I will remember forever.  The day we finally got to bring Noah home after almost 4 months of being in the hospital.  One of the happiest and the scariest days of my life.

Babies do not come with instructions,  unless your baby has a trach and a ventilator.  Before being allowed to bring your ventilated baby home, there are many things that have to be done.  The first is that you have to be trained on how to take care of him.  This takes several months of training.  Our training consisted of myself, my mother and my mother in law being at the hospital 3 days a week for a month.  We were required to do three each of everything (three trach changes, three circuit changes, three trach cleanings, three bolus feedings because at the time, Noah still had a g tube, and even three baths.  Yes, bathing a ventilated baby is not easy, especially when you are trying hard to keep the water away from the trach).  Another requirement for discharge is that they give you a list of things you must have then they come inspect your home to make sure it is similar to the NICU.  Finally, after the training is over you must do a 4 day trial in the hospital.  This is where you spend 24/7 at the hospital providing all of the care.  The doctors and nurses come in occasionally to check vitals but other than that, you are on your own.  Another requirement was that we go home with a CO2 monitor.  This was (and still is) unheard of.  These machines are rarely used, especially in the home.  Supposedly, the doctors and the DME (equipment company) had taken care of getting us this machine.  However, they had the wrong machine.  Instead of one that can be used continuously, they only had one that did spot checks.  It's always a bad sign when 2 doctors and the ventilator nurse comes in and tells you we need to talk.  Fortunately, they recognized that we had been taught well and were capable of keeping Noah alive at home so they signed the release papers with the promise from the DME that they would get us a better CO2 monitor.

The day finally arrived.  However, it wasn't as simple a homecoming as I would have liked. Chris had to take Hannah to the doctor and she was diagnosed with a stomach virus.   Beth had her first band concert that very night at school.  The DME was to meet us at home with all of the supplies and help us set everything up.  Somehow, we made it through the day.  My daddy stayed with Hannah.  My mother and father in law stayed with both Hannah and Noah that night so that we could go to Beth's band concert.  The DME met us before the concert to bring all of our supplies and set everything up.  In addition to our regular supplies, they brought us oxygen, which Noah had not needed, and they had to show us how to use that.  We finally made it home that night and got everyone in bed.

Looking at Noah at home in his crib, I was both elated and terrified.  At the time, he was hooked up to his ventilator, pulse oximeter, sleep apnea machine, and his feeding pump.  Our dining room had been transformed to a mini ICU.  Watching him sleep, I was overwhelmed with the thoughts of how in the world can I do this?  How can I keep my baby alive?  How am I suppose to do all of this doctor/nurse stuff when I have no medical training? Not only was I worried about all of the medical stuff, but I was also worried about the boy stuff.  Having 2 girls, I had not been exposed to things like cars (except Barbie cars), superheroes (except Wonder Woman), what was I going to do with a boy?  This was when I seriously wished that there was an instruction manual.

In addition to all of this stress, Noah decided to get sick.  I remember on Christmas Day keeping him on his vent and using the oxygen.   Christmas was a little weird that day but at least we were all together under one roof and we were home.  Because of this,  Christmas is even more special to me.  The Christmas trees in Children's Hospital's lobby always remind me of our time there. 

Noah has been home for 3 years now.  I guess I didn't need an instruction manual after all.  We have learned so much.  Some things were taught to us by other people but most things we learned by trial and error. 

In the midst of all of the gift giving, eating, and visiting during Christmas, I always take a few minutes to reflect on where we were three years ago.  We are so truly blessed.  I always wondered if Mary felt the same overwhelming fear when she had Jesus.  I wonder if she sometimes wished for an instruction manual too.

Happy 3 year homecoming anniversary my sweet, strong Noah.  

Wednesday, October 31, 2012

The Things We Take for Granted

Imagine this scenerio:  You and your spouse are driving in the car.  It's a beautiful evening, you've had a busy day and your children are all snuggled in the backseat ready for a long ride home.  You look in the rearview mirror and see that your baby is asleep in his carseat.  All is right with the world.  Or is it?

Scenerio #2: You have had a busy day and a long night.  You sit down to feed your infant and he falls asleep.  You reposition yourself on the couch and lie your baby on your chest.  Both of you take a nice peaceful nap together with you holding him on your chest.  What a peaceful scene.  Or is it?

Scenerio #3:  You've spent the day at the zoo.  Your baby is in the stroller and falls asleep.  You finish your walk through the zoo while your baby sleeps peacefully in the stroller.

Scenerio #4:  You and your family have a late evening and go to a restaurant to eat.  Your baby is tired from the busy day and falls asleep in his baby carrier while you are eating.  You finish your meal while your baby sleeps beside you.

Now, imagine your baby has CCHS.  None of this is possible without a lot of planning.  In all of these scenerios, a ventilator would be a necessity.

CCHS scenerio:  You notice that your child is asleep in his carseat.  First of all, you would have probably already hooked him up to his vent before you started the car.  But, if for some reason you forgot, you would immediately pull over and hook him up.

CCHS scenerio #2:  You cannot fall asleep with your child on your chest without lugging the ventilator in the room, unhooking the heater wire and making sure the battery is full and the inline HME is in the circuit.   You hook him up while the tubes hang off of you and the couch. 

CCHS scenerio #3:  Your child can sleep at the zoo in the stroller but you must first make sure that your vent is packed for travel and hanging on the stroller somewhere.  You must secure the circuits to make sure the stroller wheels do not run over them and if necessary, your pulse ox should be charged and ready to be attached to baby's foot.

CCHS scenerio #4:  You try to plan your meals around naptimes so you don't have to carry the ventilator.  However, sometimes thats not realistic so you throw the vent over your shoulder and carry your baby into the restraurant while trying not to unhook the circuits accidentally, which would cause the vent to beep loudly.   You walk in the restraurant with people looking at you strangely and try to find a table that can accommodate you, your family and your load of equipment. 

All of the above "normal" scenerios happen all the time without anyone thinking about them.  Walking, talking, eating, swallowing and breathing are all things you do without thinking about it.  We tend to take these things for granted.  But what happens when your body doesn't breathe?  Life is so much more complicated.  The ventilator becomes a vital part of your life.  Even such simple tasks such as travelling in the car, eating out and taking a nap snuggled up with your child becomes complicated. Usually a sleeping child evokes a peaceful, calm feeling in people.  For CCHS parents, its a whole different story.  We worry that our child's machine will malfunction and we will not know it,  we worry there will be an accidental decannulation during the night and the stoma will close up, we worry that our child is getting adequate ventilation so the CO2 will not climb.  When I see a sleeping baby now the first thing I think of is that they need to be hooked up to their machines.

My point is that everyone takes the simple things in life for granted.  Take the time to slow down and enjoy the little things.  Just walking to the bathroom is a miracle for some people.  Talking is the main way of communication but some people must find alternate ways, which makes life more difficult.  Eating is usually enjoyable but imagine if you must eat through a feeding tube while everyone around you is enjoying their food.  Swallowing is something that happens without you even thinking about it but imagine a life where you can't swallow; how hard would that be?  Breathing is a vital, necessary part of living but imagine if your body forgets to breathe, which is what happens in Noah's case.  If you don't breathe, you die.  It's as simple as that.  So the next time you walk to the table, sit down and converse while you are eating and swallowing your food and breathing, just remember how blessed you are.  Count your blessings and enjoy every moment of life. 

Wednesday, October 10, 2012

Pros/benefits of having CCHS

1.  You never have to wait when you go to the ER.
2.  You get handicapped parking because of all of the equipment you have to lug around.
3.  Even the parking attendents at the hospital know who you are.
4.  You have a whole team of doctors and specialists.
5.  You are on the emergency power list and actually get a real person when you call to          report a power outage.  Our neighbors love us.
6.  You are on the emergency list with the fire department.
7.  You never get lost at the hospital because you know where the home vent clinic is located, where to go for speech therapy, where the xray lab is located, where to find one day surgery, you know which floor and where the sleep study lab is located, the cafeteria is one of your favorite places, you know which floor to find pulmonary and the respiratory therapists.  You can even help people who are lost because you also usually know where they are going.
8.  You have a free pass to sleep during the day because you were up all night with the endless alarms.
9.  You do not panic in an emergency.
10.  When your child says a cuss word you can pretend that you don't know what he is saying because his speech is not clear sometimes. 
11.  You have friends all over the world and met them through special needs facebook pages.
12.  You get preferential treatment at Disney World.
13.  When you have to call the doctor, there is no wait.  They return your call immediately.
14.  If you are having a bad day people assume it is because of the beeping alarms keeping you up at night.  You can blame everything on the ventilator.
15.  You always have plenty of medical equipment with you in case of an emergency (gauze, plastic tubing, alcohol swabs, latex gloves and an ambu bag to resuscitate someone.
16.  In the event of an emergency (tornado, earthquake, blizzard, etc) or invasion by a foreign country you have plenty of sterile water bags stored at your house. 
17.  People think you are so smart because you know all kinds of medical terms (vent, trach, circuit, low min vol, peep, ST, OT, PT, vital stim, sats, pulseox, Shiley, Bivona, HME, Passey-Muir, etc).
18.  You are never bored because your calendar is filled with appointments.
19.  You are an expert on breathing issues, feeding issues, swallowing issues, gastrointestinal issues, speech issues, etc. 
20. You never have to buy moving boxes again because you get so many every month with your ventilator/trach supplies. 

Sunday, October 7, 2012

Life lessons from CCHS

Here is a list of things that I have learned from CCHS and having a special needs child

1.  Doctors don't know everything.  This is a hard lesson to learn.  I previously assumed that having going to medical school and having a degree made one very knowledgeable in the medical field.  When dealing with someone who has CCHS, this is not necessarily true.  We found that the NICU doctors at St. Vincent's had no idea of CCHS.  There were many specialist brought in to help figure out the diagnosis.  The geneticist told us he "didn't feel good" about Noah.  The NICU doctor handed us a small paragraph out of a medical journal and informed us that Noah would have to be institutionalized the rest of his life and said "I'll leave you to digest that".  Nurse friends said that nothing about CCHS was in any of their nursing books.  Once we moved to Children's, everything began to improve.  The doctors admitted that they have not had many cases of CCHS but were very encouraging and told us that Noah would be just like any other child, except that they didn't recommend deep sea diving.  Once he was turned over to the pulmonologist at children's, we became a part of a team of specialists that were willing to work with us and listen to our concerns.  His pulmo doctor does research on CCHS.   The only negative experience we had at children's was when Noah was admitted to the hospital after being home for a year.  His regular doctor was off that weekend and the doctor on call knew nothing about CCHS.  He ordered unnecessary tests, which I declined and we spent the whole weekend in the hospital even though I could have provided the same care at home.   Although I know that they do not have all of the answers, I feel like he is now in the best possible care.  So even though the doctors and specialists are not familiar with a rare disease, they can learn. 

2.  Being on a ventilator is not a death sentence.  I have watched many fictional medical shows.  On every one any time someone was on a ventilator, they were close to death.  I will admit that before Noah when I heard someone was on a ventilator, I thought it was horrible. When he was first intubated, I was horrified and scared.  So many thoughts ran through my head but the main one was that he was probably close to death because he was on a ventilator.   Now when I hear that someone is on a vent, I know that they just need some extra help breathing and it doesn't scare me at all. 

3.  My girls are extraordinary.  When Noah was in the hospital, the girls were so supportive.  I remember crying a lot and trying to hide it from them.  I was on the front porch one day when they came out.  Before Hannah saw me, Beth turned around and guided Hannah back in the house to give me some time and keep Hannah from being scared.  I will never forget the first time they saw him.  They were both so eager to hold him, regardless of all of the tubing and wires.  They were not scared at all.  They have learned so much about trach care and the ventilator.  Both of them are experts at turning it on and off, hooking him up and unhooking him.  Beth helps with trach care and Hannah delights in telling all of her friends all about CCHS and trachs and ventilators.  They have become so understanding of special needs.  Hannah has a boy at her school with a trach and he has obvious learning issues. She always waves and smiles at him.  Her teacher even let her go to the special ed class and work with him some.  Hannah has wanted to go to dance again but she informed me that if it was too hard on me traveling around with Noah that she would not take dance.  Needless to say, she is starting dance.  Beth really wanted to play regional volleyball last year but settled for playing locally.  She said it would be less stress on us because the regional team travels to other states.   This year, we have told her if she wants regional to go for it and we would manage.  I have always been careful to try to prevent Noah's health issues from interfering with the girls "normal" lives.  It is sometimes difficult juggling nap schedules with volleyball and dance but we manage.  Since birth, the girls and we have been going to the beach every year and I decided early on that we were still going, regardless of a trach and a vent.  They have been so supportive and understanding.  I am so proud of them.

4. Beeping will drive you insane.  Being a kindergarten teacher, I have always been able to tune out noises.  The kids can be running around the house making noise and it doesn't bother me.  I'm use to noise.  Then Noah comes along and the endless beeping began.  There are different beeps for different machines.  The ventilator beeps, the pulse ox has at least 2 different beeps, the CO 2 monitor has 2 beeps.  I have learned what each beep sounds like, without even having to see the machine.  Now I hear EVERY beep.  It drives me nuts when people leave their keys in the car and pump gas with the door open.  All I hear is beep, beep, beep.  The grocery store is horrible.  It's just constant beeping.  We can be sitting in a resturarant , walking in a store, etc and I hear the beeps.

5.  Kids are curious.  I already knew this from teaching but I notice it more now.  They have no problems coming up and asking me what's in Noah's neck.  Several of them have asked if it hurts him.  I explain that it is a trach and it helps him breathe.  They always nod and then smile at him. 

6. Blue is a bad, bad color.  One day without thinking, Noah ate something blue and it stained his lips.  A little while after eating it, I noticed that his lips were blue.  For a small moment, I went into a panic thinking I would need to check his sats and put him on the vent.  Then I realized his lips were just stained.  Crazy, I know but I had flashbacks of his birth when I was holding him and his lips were tinged blue.  Last week at school, Beth texted me that her hands were blue.  I asked her to send me a picture, which she did.  Chris and I were analyzing them and it was so funny because we were commenting on how her fingers were still pink, not blue and her nails were not blue.  Turns out it was just her new blue jeans getting dye on her hands.  But, it made me realize that the color blue is serious business in our house.

7.  Carbon Dioxide is deadly.  The human body is very complicated.  I never really thought about carbon dioxide before Noah came along.  I never realized how important it is for the body to not retain CO2.

8.  "Normal" is what you make it.  I'm not going to go into a lot of detail here because I wrote a blog post on this but I have learned that humans have an amazing way of adapting to any situation and we decided from the first moment of diagnosis that we were going to try to live as "normal" as possible.  Please see blog post entitled "Normal".

9.  You get preferential treatment at emergency rooms when your child is on a ventilator.  A year after Noah had been home, he got really sick and his CO2 monitor stopped working correctly, which we were not aware.  The monitor never indicated that his CO2 was too high.  He was very lethargic, which I though was because of his high fever.  CCHS kids usually do not run a fever, and so my thought was that he was lethargic because of this.  We ended up taking him to the hospital and found his CO2 to be really high.  The funny part was when we arrived at the ER.  We walked in carrying his equipment, he was hooked up to the vent, and we had tons of bags with us.  The police officer at the desk was eating when we got there.  He put his food down and said he would have to search us.  When he saw the huge amount of stuff we had, he said "never mind.  You have too much stuff" and waved us through the metal detector.  This poor lady was behind us with her daughter.  He stopped her and made her let him search her bag.  She gave us the meanest look.  We then walked up to the nurses station and they immediately gave me paperwork and began taking Noah's vitals.  Without thinking, I started spouting off all of the medical terms and numbers to them (what his sats were, CO2 numbers, medicines and times, etc).  I gave them a thorough assessment of Noah and we were taken immediately to a room, where they began breathing treatments.  After the nurses left, Chris told me that they looked at me in amazement while I was giving his symptoms and history.  I never noticed that because I was so focused on letting them know what was going on.  It was so nice not to have to wait in the ER waiting room.  Breathing problems are serious business at the hospital.

10.  Medical shows are funny.  I was a big fan of the tv show ER and I love Grey's Anatomy.  It cracks me up when these shows show people on ventilators.  I'm always finding the mistakes.  I also understand much of the termonology that they throw around in an emergency situation.   I can only imagine what the real nurses and doctors say while watching these shows.

11.  Kids are stronger than adults realize.  Noah is such a strong little boy.  He has fought from the moment he was born to survive.  He has been through so many medical procedures in his short life.   For a long, long time he did not want anyone messing with his feet, even to put on socks.  I guess this is because they stuck him numerous times in his feet getting blood and having IVs.  He also hates bandaids, which is unusual for children.  We even have cartoon character bandaids and he still hates them.

12.  My husband is my hero.  He has been so supportive thorough all of this.  It has been difficult trying to juggle our every day life with all of the appointments, therapies, doctor visits, etc.  Through it all, he has been understanding and strong.  When Noah was in the NICU, he worked himself to death.  He got up and went to work while I sent the girls off to school and then spent the day at the hospital.  He met me at the hospital on his lunch break and spent his hour there.  I was home in time for them to get off the bus.  We then had dinner, did homework and spent some time together before the girls went to bed.  After tucking them in, he left and went to the hospital to see Noah while I stayed with the girls.  Every weekend, we sent the girls to their grandparents and spent several hours at the hospital.  During this time, they were not letting anyone other than parents in the NICU because of the swine flu outbreaks.  The girls were not even allowed to see Noah until he was moved out of the NICU to a regular floor.  This was our life for months.   I will never forget the night he called and told me they had intubated Noah.  They wouldn't let him go back there for awhile and we were terrified.  I could hear how scared he was but he was trying so hard to be strong for me.  That was the scariest night of our life.  The next day was even worse when we got the call for us to give them permission to give Noah a blood transfusion.  I sent the girls off to school and went to the hospital.  Seeing him intubated for the first time was devastating.  There was blood in his bed from the transfusion.  I couldn't stop crying and Chris was there to comfort both of us.  He has always been positive and encouraging with the diagnosis.  I suppose Noah gets his strength from his daddy.  They say that there is an extremely high divorce rate for parents of children with special needs.  I can see why this is true.  It is very difficult on a spousal relationship.  The stress level is high and there is no time for spending with one another.  I am blessed that he is such a strong and understanding man who honors his commitments to his family.

I have learned so much about myself, my family and my son.  One of the most important things I have learned is to celebrate the small stuff and do not take anything for granted.  Life is difficult, but even more so with a diagnosis like CCHS.  One of my favorite quotes is "Life is like a piano; what you get out of it depends on how you play it".  Take each day as it comes and live life to the fullest. 

Thursday, August 30, 2012

Things the Doctors Don't tell you

I have only been a special needs mom for three years.  Regardless of the diagnosis, I realized that most SN parents go through many of the same experiences.  These are just a few of the things I have learned these past few years.

1.  You will never sleep the same way again.  I have always needed my sleep.  I am so not a morning person and really do not wake up until around 10 am.  Many nights, I would have trouble going to sleep.  Since Noah has been home, this is definitely not the case.  I can sleep anywhere, anytime.  One of our really good friends worked crazy hours and when we would go over to his house, he would always fall asleep while we were there.  Didn't matter what we were doing (playing a game, talking, watching tv), he always fell asleep, sitting up.  I always wondered how he did that and now I know.  When you get tired enough, you will sleep anywhere, anytime.  The doctors never warned me about the lack of sleep.  Eventually, one gets use to it and the body compensates.  It's still hard sometimes but manageable.

2.  You will spend most of your time waiting.  I find myself waiting for appointments.  Sometimes it is at the doctors office, sometimes it is at home vent clinic, most times it is at home waiting for the equipment company, nursing agency, therapists and medicaid caseworker.  Which brings me to the 3rd thing doctors dont tell you.

3.  You will have a huge lack of privacy in your home.  We have never had nursing so I can't speak about that, although I know that is a huge privacy issue for some.  When Noah first came home, he had 3 therapists that came twice a month (thats 6 visits a month).  In addition to the therapists, we have the DME (equipment company) come once a month to check the vent and get numbers from it.  We also have the medicaid caseworker who comes once a month and the lady from the nursing agency.  (We do not have skilled nursing but we do have 6 hours of unskilled help).  So, thats 9 visits a month that I would have to schedule, plus go twice a week to therapy at the hospital.  Now, we are down to no therapists (Noah will be getting his services through the local school because he aged out of Early Intervention), the DME, the medicaid worker and the nursing agency.  Needless to say, they all call at different times a month (mostly the end of the month) and want to visit on different days.  This drives me insane.  I hate waiting for people to show up, especially when they say they will be here "between" a certain time.  Sure, they think its only a 5 minute visit.  What they don't realize is that all of these 5 minute visits add up to me sitting around waiting on them to show up.  Once, the DME didn't even call, they just came to the house.  We were not home.  After that, they always make sure to call.  I'm not sure what these people are going to do when he starts school.  I am taking a suggestion from another CCHS parent and am trying to schedule everyone on the same day of the month.  So far, its not working out so well.

4.  You will be the one to teach the doctors about your child's condition. Doctors do not know everything.   I have a lot of faith that Noah's doctors take good care of him.  However, they do not do the huge amount of research that I do.  His pediatrician is very good.  However, she informed me that she had never done a trach change.  I told her the steps involved and explained it to her.  When Noah was in the hospital, the nurses did not even know what CCHS was.  I explained it to many of them. 

5.  Storms will terrify you.  I have never been one to be scared of storms.  This all changed once Noah came home.  Power is a necessity in our house.  The ventilator has a battery backup but it only lasts about 45 minutes.  We have 3 external batteries that last about 5 hours each.  We could probably make it though one night without power.  When the tornadoes came through in January, we were without power for 3 days.  Thankfully, we had a generator.  We ran this during the day so that we could charge all of the equipment.  His equipment consists of the ventilator with the heater, suction machine, pulse ox, co2 machine and an oxygen concentrator (which we rarely use).  All of this equipment relies on power.  We are on the emergency power list at the power company but they cannot guarantee we will have power during emergencies, which was what happened during the April and the January tornadoes.  Being without power is not just an inconvenience, it can be life threatening.

6.  There are no breaks.  It is next to impossible to find someone to watch your child.  Daycares, preschools, mothers day out programs are all scared to take your child.  Once you mention the word "trach" and "vent", there is a long silence.  Even if they would accept him, I'm not sure I would be comfortable leaving him.  Therefore, he goes everywhere I go. 

7. You will need lots of storage.  There are many supplies that go with having a trach and a vent.  Every month, we get 4 boxes of supplies.  Our basement looks like a storage unit.

8.  Sometimes there are extra problems that go along with the diagnosis.  Noah's official diagnosis is CCHS.  However, there are a lot of other issues that go along with this.  Because of the trach, he had trouble swallowing.  For 2 1/2 years we had to thicken all of his liquids.  He is also a little behind in speech because he would not tolerate the speaking valve.  He has really only been talking for a year now and I think he has made remarkable progress but there's still work to do.  There are also teeth issues.  He has a really big overbite because he was intubated for so long.

9.  Nursing is nonexistent here.  Noah does qualify for nursing.  However, because we are in the vicinity of such big hospitals (UAB, Children's, St. Vincents, Brookwood, etc) there is a huge lack of home nursing.  It's even more difficult to find nurses who are trach and vent trained.  I am so glad that nursing was not a condition for Noah to be released from the hospital, otherwise he would still be there 3 years later.

10.  There is not a lot of information about rare diseases.  When Noah was first diagnosed, I turned to the internet.  There was nothing, except for the CCHS network.  Now, there are support groups and other articles that have been written since.  People have heard of things like Down's Syndrome, Spina Bifida, Cerebral Palsy, etc but when you say CCHS, there is this blank stare.  (Unless you live in the Trussville, Pinson, Clay area where people think you are talking about Clay Chalkville High School).  I found it helpful to start a CCHS binder.  Whenever a new medical journal is published, I print it out and put it in the binder.  I also print out the articles on the CCHS network.

11.  You will meet many special people.  There are not many of us CCHS parents, but for those of us who deal with it every day, we are a small, tightknit group.  They are a lifeline when you need support and information.  I have met people all over the USA and even the world.  Our therapists have been amazing and are like family.  Noah's home vent team is awesome and provide great care for him.  I love his pediatrician.  She is willing to learn and listen to my concerns.

12.  Because of your child's special needs, you will have an amazingly strong bond.  The family bond is also stronger.  We now do not take anything for granted.  We enjoy the small moments in life and cherish the moments we have together. 

These are just a few of the things doctors don't tell you.  These may seem like a lot of negatives but there are actually positives to the above statements. 

1.  Sleep-- Well honestly I can't find any positives to no sleep.
2.  Waiting--Yes, waiting for all of these appointements is a pain.  However, I have become an expert at entertaining Noah.  It has also allowed me to become a more patient person and be more flexible.
3.  Privacy--I can't seem to find any benefits to lack of privacy either.
4.  Teaching doctors about his condition--Because CCHS is so rare, there is no preconceived notions in that there is no protocol.  The doctors listen to me and ask my opinion on things.  5.  Storms are terrifying-  Because Noah needs a lot of equipment, we are able to get on the emergency power list.  Whenever we have a power outage and call the power company, we are transferred to a live person, not a recording.  They are able to tell us the approximate time power will be restored.  Plus, our neighbors love us because our power tends to be restored before other areas.
6. No breaks--Yes there are few breaks.  However, I am so blessed that I get to enjoy him being little.  I am able to be there for every small moment (first word, first step, etc).
7.  Storage--People tend to understand why the house is so cluttered.  Plus, we have lots of boxes for any friends that need them for moving.
8.  Extra problems--I can't seem to find anything positive about the extra problems.
9.  Nonexistent nursing--I see this as a positive.  I do not have strangers in my home providing Noah's care.  I don't have to rely on them showing up or having scheduling problems.  I am also an expert in his care and do not have to worry about them suctioning too deep, not getting the ties tight enough, or waking him up to take vitals.
10.  Information--Because CCHS is so rare, we have the ability to create awareness.   I started this blog so that people could learn more about CCHS and how to live with it.  There are many support groups on Facebook where we can share ideas and support one another.

I am sure I probably left out a lot more things the doctors don't tell special needs parents.  If you are a special needs parent, I encourage you to find support where you can, research your child's diagnosis and learn all that you can.  Know that you will have both good days and bad days.  Don't isolate yourself or your child.  Let them experience life just as any "normal" child would.  Be flexible and patient (I still have to work on the patient part).  Most of all remember that you are not alone.  Enjoy the small moments and live life to the fullest. 

Monday, June 25, 2012


Normal.  What an interesting word.  Everyone has their own definition of "normal".  I guess, for me, "normal" is nothing special, just everyday ordinary things.  Maybe that's why we did the unthinkable.  We took our trach baby to an indoor water park for vacation.

Here in Alabama, it is so hot during the summer that you really can't do anything outside unless it involves water.  So, people here spend a lot of time in the pool.  Water and trachs do not mix.  It can be dangerous if water goes down the trach because it is a direct pathway to the lungs.  Aspiration pneumonia is a common concern for trached people.  Even baths are frowned upon by some people.  I know many trach mommies who do not even bathe their kids, they just get sponge baths.  Putting them in or near a pool is, to them, a HUGE no no.  The beach is out of the question.  To me, this is definitely not "normal".  I understand the seriousness of water being around the trach but to not take a bath seems kind of paranoid to me.  I do not want Noah to fear water.  I want him to respect it and be careful.  I want him to be able to enjoy summers without being stuck in the house and I want him to enjoy the beach as much as we do.  I guess I want him to be "normal".  So what do we do?  We go to a water park!!!  He loved it!!!  I did take many precautions and stayed with him (actually hovered over him) the whole time.  I made sure his trach was capped, then tucked it under his swim shirt.  He then wore a swim vest for added protection.  The suction machine was right there with us.  Regardless of the precautions, I knew that at some point while we were there that his face/neck would end up in the water.  Well, it did because he fell face first.  I had a small heart attack and grabbed him up.  He came up laughing.  There was no coughing, no gagging and we didnt even have to suction.  Thank goodness for caps. I am sure that some people watching me thought I was extremely overprotective the way I followed him around and was right behind him at all times.  I even tried to hold his hand some but he wanted no part of that.  Looking at him, you could not even see the trach because it was covered by the shirt.  He almost looked "normal".  I know there will probably be some trach mommies who read this and think I am the worst mother for allowing him near water.  But, for us, there is no option.  He needs to experience life just like my girls do and although extra precautions should be made, the trach and ventilator should not prevent him from enjoying life.

Everyone wants to be "normal".  We all want to be accepted and not treated differently.  This is especially true for special needs children and their parents.  Yes our lives are full of appointments, procedures, equipment issues, etc.  We are sleep deprived, stressed and sometimes overwhelmed, which is not "normal".  Right after Noah came home, we had to make many accommodations, one of which was our social lives.  Everything was still new to us and it was really hard to get out with him and all of his equipment.  We stopped going to church and stayed home most of the time.  Right at first, people would call and come by.  Once we were home for a few months, that stopped.  People began to stop calling because they did not want to interrupt our sleep.  We were dropped from church committees.  People stopped asking us for favors.   This became our new "normal" for awhile.  Then, one day a friend from church asked me to cook dinner for him and his family.  I forgot the reason but I readily agreed.  So, I went with Noah to the store to get the ingredients, came home and cooked their meal.  I must say I thoroughly enjoyed it.  For the first time in a long time I felt "normal" and needed.  It was an awesome feeling.  So a special thanks goes to Kevin for making a special needs mom feel "normal" again.

I can go on and on about this subject and I may do another blog on this later.  But for now, please realize that special needs families want the same thing as any "normal" family.  We want to belong and be a part of everyday life.  That's why we take trach babies to the beach and to water parks and give them baths.  Don't be afraid to call us.  If we are asleep, we will call you back.  Don't be afraid to ask us to do things.  We may have to juggle our schedule and get extra help but thats ok.  Don't be afraid to come by our home.  Our house will probably be a mess but we will enjoy the company.  Don't be afraid to ask questions.  We are like any parent and love to talk about our kids plus we want to raise awareness of special needs so any information we can give people is important to us.  Above all, remember that we want to be "normal" too. 

Wednesday, June 20, 2012


Throughout these almost 3 years of being a special needs mom, I have met many other special needs mommies.  It has been so helpful to me to know that I am not alone in this journey and although our kids have different issues, we still feel the same things and want the best for our children.   It is always exciting to read about a child who no longer needs the vent or who passed a swallow study, etc.

The other day, one of my new mommy friends posted that her son was going to be getting rid of his ventilator and then eventually his trach.  I was very happy for her.  That is, until she posted the congratulations certificate from his team of doctors.  The certificate was nothing special, just his name and it stated that he had graduated from home vent clinic.  Then I began reading the comments.  All of Noah's doctors had signed it.  (This little boy goes to the same vent clinic that we attend). His pulmonary doctor, his respiratory therapist, his nutritionist, his speech therapist, his home vent nurse--all of them congratulating this little boy who will no longer have to come to vent clinic and no longer have the aggravation of a ventilator.  It really hit me then that this will never, ever happen for Noah.  I had always had a pang of sadness when reading about a child's decannulation and their ability to get rid of the vent but with that sadness came happiness for them.  Not this time.  I just felt this crushing sadness and jealousy.  I realized that this will never go away.  Yes, Noah may be able to get rid of his trach.  But, he will always have a ventilator or a bipap.  He will always have to watch his CO2 and be careful when he gets sick.  He will always have to monitor his sats.  For him, the process will never be over.

Noah has been such a trooper with everything but I know there will come a time when he questions why he has this crazy disease.  He will become rebellious with his care and maybe even try to sleep without his ventilator.  This terrifies me.  It saddens me.  I hate that he has to carry this burden.  Yes this diagnosis has made us stronger, more knowledgable, more compassionate.  But, it still sucks.  Most days the good outweigh the bad, but in this instance the sugar coating has fallen away and what we are left with the realization that this is forever.

I truly am happy for this mommy and her little boy.  I know how hard it has been on her and I am so glad he can be rid of this cumbersome machine.  However, I am still sad and if I really sit and think about it just plain angry.

Thus, is the roller coaster life of the emotions of a special needs mommy.  One day you are fine with the diagnosis and the circumstances but the next you come crashing down to reality.  CCHS sucks.

Monday, June 11, 2012


     One day while reading to Noah I noticed small white dots on his hand. Upon examination, I found more dots on his other hand and on the tops of both of his feet. He also had a few in random spots around his ankle. I could not figure out what they were. They were not red or puffy. When I touched them, he didn't act like it hurt him. It took me several days but then it hit me. The little white dots were scars. They were little scars from the many times he had been poked and prodded for blood samples and ivs. It really upset me to see those little white dots. So many bad memories came flooding back, especially the one where he had an IV in his head.

     After awhile, I realized that these scars should not be making me sad. Instead, they show me how strong and brave my little boy is. It shows me how stubborn he is to survive and that he is a fighter  The scars are the badges of a survivor and should be celebrated.

     Everyone has scars. Some are easily visible and some are not. Some are on the skin and some are emotional scars. One can dwell on the pain from these scars or one can learn from them. I am so hoping there will be no more blood samples, no more IVs, no more scars. But if there are, they will be badges of honor and I will kiss each one with love and pride.

Wednesday, May 9, 2012


When Hannah was 4 years old her teacher was asked the class the question "Does a horse ride you?"  (I happened to be in the room because I was the teacher's aide three times a week).  Hannah raised her hand and simply said "yes".  Her teacher then proceeded to tell her that she was not correct and that horses do not ride people.  Hannah, not being one to argue with her teacher, proceeded to argue and say that horses did ride people.  I, of course, was surprised and had to bite my tongue and refrain from interrupting the teacher and reprimand her.  Even when her teacher got somewhat cross with her, Hannah stood her ground and insisted that she was correct.  She tried her best to explain why she believed that horses ride people and informed the class that when one gets on a horses back, the horse rides them around.  Finally I understood what she was trying to say.  In her mind, horses do ride people around because people sit on their backs and ride them so, therefore, horses ride people.  Once we understood her, we apologized and informed her that she was correct.  Her perspective was different from our own.  

The same can be said for special needs children and their families.  Everyone views the world differently.  Some people look at Noah and see his limitations.  We look at him and see how far he has progressed.  For instance, people pity him because we had to thicken all of his liquids.  We celebrate the fact that he no longer has a g-tube and can eat on his own.  People are amazed at how much equipment we have to carry everywhere.  We celebrate the fact that he is able to be out of the house doing fun things.  People look at him in stores when he is being loud.  We take joy in every sound he makes because for the longest time he made no sounds and we do not care in the least how loud he talks.  People see the ventilator as something scary and intimidating.  Our perspective is that it is a vital piece of lifesaving equipment and we are so grateful we have one because the alternative is unthinkable.

So, the next time you encounter one with special needs, please do not perceive them as weak or sad.  Do not feel pity for them.  Sure, they have limitations but so does everyone.  Their life is no less important or happy.

Saturday, May 5, 2012


I was originally going to write about something else but read something on Facebook that inspired me to write about nursing.  I even got into a small facebook fight with some other trach moms.  So, if you read this and get offended, I am sorry.

Before being discharged, we found that our insurance did not cover private duty nursing.  Many people have stated that they were not allowed to be released from the hospital without having a nursing plan in place.  Thankfully, the staff at Children's did not insist this for us, otherwise we would still be there over 2 years later.  Noah is on the waiver program but the problem with that is they cannot find ANY nurses who work in the program who have trach and/or ventilator experience.   Apparently all of the good nurses work at UAB, Children's and the Veterans Hospital.  So, even if we wanted nursing there are none available.  

We did find one nurse who had no trach/vent experience who said she was willing to learn.  She was a friend of a friend who volunteered to help.  I  called her and explained the situation and she was willing to do the Medicaid interview.  She did the interview, did the drug test, etc.  The next thing I knew, my caseworker called me and asked me why she backed out.  I had no idea she had changed her mind.  Instead of calling me, she just called the agency, which made the agency drop us and refuse to work with us again.  I never heard from her again. 

Nursing is a touchy subject for many.  I can't tell you how many times I read about how incompetent home nursing is and all of the crazy things they do while supposedly taking care of trached/vented children.  Mostly the complaints are about the nurses falling asleep.  I honestly do not see the big deal with this complaint.  If the nurse does fall asleep, they are in the same room with the child and the alarms are so loud they can wake the dead.  Beth and Hannah hear Noah's alarms and they are upstairs with their doors closed.  Anyone who could sleep through those alarms is either hard of hearing or has taken some kind of sedative.  I do understand that they are being paid and as with any job, if you fall asleep you are basically getting paid to do nothing.  In that respect, it would annoy me.  But only for that reason.

 I had at least 2 trach mommies say that trach children are never stable and if they were stable they would not need machines to help them breathe and to check their oxygen levels so that is why they need nursing constantly and someone to sit by their bed at night.   I strongly disagree with this.  Noah is extremely stable.  If he was not, he would be in the hospital.  Yes he needs a ventilator to sleep and we hook him to a pulse ox as a backup alarm but this does not make him unstable.  I know things can happen but we have multiple machines that alarm.  We even had to turn of one of his vent alarms because he has a trach leak and the vent would beep constantly.  I neglected to tell those ladies that tidbit because I figured I would be named the worst mother ever. We use his pulse ox as a back up alarm.  If his oxygen falls below the required setting then it will alarm and let me know he is not getting enough oxygen.   99% of his alarms are false (disconnections, water in the line, high pressure from him coughing, sensor off, etc).   In my opinion, he is very stable.  I would never put him in any danger and if I felt that we needed a nurse, I would fight to get him one.  I do not feel that he has to have someone to hover over him 24/7 just because he has a trach and a ventilator. 

People do not understand that Noah is exactly like them.  He is extremely healthy.  The only reason he has a trach is because he needs a vent to help him breathe.  I am a little more careful with germs and if someone is sick, I do not knowingly expose him.  However, I refuse to live in a bubble just because he has a trach.  Many of these moms never take their kids anywhere and let the nurse just stay at home with them while they go out to run errands or get away for awhile.  I understand how hard it is to pack everything up and load the car.  But, I quickly decided that I did not want Noah to be punished because he has a trach.  I want him to experience all of the things that the girls were exposed to (the zoo, the park, grocery stores, etc).  In my opinion, it is vital for him to be out in the environment so that he can learn.   Being on a vent 24/7 would make things a lot harder as far as driving in the car (if they disconnect you would have to pull over immediately and put the circuit back), carrying them on the vent to the car would be tough and loading and unloading the equipment (and him) in a stroller would be a pain.  But, I would do it for him and for my mental health.  This is where nursing would have been helpful.  However, many agencies tell their clients that nurses cannot travel with the patient, which doesnt help whatsoever.

I constantly hear people complain about scheduling nurses.  They call in and have no replacements.  They show up sick and expose the trached child to their germs.  I can't imagine how frustrating this would be.  Many times I hear parents say how they will have to stay up for the next several nights because they have no nurses for whatever reason.  I really do not understand why they cannot sleep too.  I truly feel that if one is totally responsible for the care of their trached/vented child every night that they would be more alert and able to respond to the alarms.

Back when Noah was in the hospital, we could not stay with him and had to visit when we could.  I remember one of the nurses asking me if Noah liked something and realized that I had no idea.  This was my child and I had not spent enough time with him to know his preferences.  That really upset me and I vowed that it would never happen again.  I know that this was nothing I could control.  I did the best I could under the circumstances but it was very upsetting.  I promised myself right then that the nurses would not know more about my son than I.  

Please do not think that I feel nurses are incompetent.  That is not the case.  I truly love those NICU nurses who bought Noah clothes and made him his own trach box.  There was one favorite nurse that Noah had for several months while in the hospital.  She was wonderful with him and truly seemed to care about him and us.  She even stocked us up on supplies before we were discharged.  Noah's home vent nurse is like our family.  She returns my calls promptly, listens to my concerns, and  actually asks my opinion on things.  We work as a team to make sure Noah has the best care possible and that is invaluable.  If I could hire one of these two ladies to take care of him at night, I would do so without a second thought and know that he would be in good hands.
Regardless,  nursing is a luxury with which we were not afforded.   I do know firsthand that trach/vent dependent people can live at home and have no nursing help.  It is difficult sometimes, especially when Noah is sick or he alarms several times a night.  But, we have our privacy.   I think that on those nights when Noah alarms a lot, a nurse would have been helpful.  However, after reading so many complaints about home nursing, I am glad we do not have to worry with the whole situation.

 I respect the moms who say that they cannot live without nursing.  Please do the same courtesy for those of us who do not have nursing.  We love our children just the same so do not imply that we are bad parents who are putting our children in danger just because we do not have someone sitting by their bed 24/7. 

Monday, April 23, 2012

The Equipment

Babies are a lot of work.  It's difficult to just get up and walk out of the door without planning because babies need diapers, food, extra clothes, toys, etc.  There is a lot of planning and packing for trips.  Babies with special needs are even more work.  Packing takes forever because you have to check and double check that you didnt forget anything.  After all, you can't just run to a local Wal Mart and pick up some vent circuits, trach ties, or pulse ox probes.  Even after all of the packing, when you get to your destination you have to unpack everything and figure out how to set up all of the equipment in a strange place.  It's a lot of hard work just to go on vacation but the fact is that us SN parents really need a break from the daily grind and it is worth a little extra effort to get away for awhile.

When Noah first came home from the hospital he had a vent, apnea machine, pulse ox, CO2 monitor, suction machine, feeding pump, plus all of the supplies that go to this equipment (leads, circuits, filters, etc.), plus all of the supplies for trach care (extra trachs, trach ties, suction catheters, etc).  I remember the first day home was so wonderful and scary.  Beth had her first band recital that night and Hannah ended up having a tummy bug.  We were so ready to get Noah home that we didn't care about any of that.  We rushed from the hospital and the DME (the equipment company) came to our home shortly thereafter.  We set everything up and they brought our supplies.  We were still so new at getting Noah out that we decided to leave him at home with his grandmother (Hannah stayed also since she was still sick) and we went to the concert.  Once we got home and everyone left, we tried to settle in to our new "normal".   We hooked Noah up to his vent, pulse ox, CO2 machine, feeding pump and apnea machine.  He had so many wires on him that he looked like a science experiment.  We were so tired emotionally and physically that we went to bed early.  Needless to say, we didn't sleep.  We immediately decided to turn off the apnea monitor.  It seemed useless anyway because we knew he didn't breathe much while sleeping so the thing was constantly alarming.   After a few nights of more beeping, we decided to unhook the CO2 machine and just do spot checks because water was getting in the line and messing up the readings.  After about a week or so, we finally were able to relax a little.  Then Noah got sick.  I called his nurse and they phoned in breathing treatments, antibiotics and oxygen.  We did not have any of this in the hospital so there were a few nights there that we had to get use to the new equipment (oxygen concentrator and nebulizer).    Eventually, he got better.  We were able to wean him off the vent (not because he couldn't tolerate it but because it made us nervous for him to be off of the vent).  Eventually we got rid of the feeding pump.  Now we have the vent, pulse ox (which we use every night), CO2 machine (which we do spot checks), suction machine, oxygen concentrator (which we use only when he's sick).  Depending on how long the trip, sometimes we even leave the vent at home or in the car.  We usually leave the suction machine in the car.  Noah's "go bag" goes everywhere he goes.  This bag contains everything needed for emergency trach changes and has an ambu bag (that blue resucitation bag you see on tv all of the time).  Traveling around town is still somewhat of a pain but it is much easier now.

Vacation is another matter.  Noah has 4 suitcases. One with all of the normal baby stuff, one with all of the vent supplies (circuits, filters, swivels, water bags, etc), one with all of the trach supplies (trachs, trach ties, extra catheters, gauze, saline bullets, etc), and one for just all of the power cords.  Every machine has its own power cord and we always take our own surge protector plus extension cords and a stool to place the ventilator humidifier.  Then we have all of our suitcases.  Plus, blow up bed or playpen for Noah to sleep. Not to mention the huge stroller that we need to carry the equipment if we go out all day somewhere.  Chris bought a roof bag, which helps tremendously.

Over the last two years, we have learned a lot about traveling and packing for trips with all of our extra baggage.  If there are any moms (especially SN moms) out there who have questions or want to see pictures of our setup, please feel free to comment or email me. 

Traveling with a SN child is difficult but manageable.  The equipment is a pain to deal with but it keeps our son alive.

Tuesday, April 10, 2012

Welcome to my nightmare

I love the 80s.  I love horror movies.  One of my old favorites is Nightmare on Elm Street.  For those of you who do not like horror movies or haven't seen it the movie is about a group of teenagers who do their best to stay awake.  When they fall asleep, a very scary man named Freddy comes to them in their dream and kills them in real life with his razor sharp knife glove.  So they do everything they can to stay awake--drink tons of coffee, set their alarm to wake up every so often, make their friends sit by their bed and keep watch to wake them at any sign of distress, etc.   Nothing worked because they always fell asleep.  You sleep, you die. 

This is how I view CCHS.  Everyone has to sleep.  There is no possible way to stay awake indefinitely.  You may be able to stay awake for a day or even 2 days but eventually your body will give in and you sleep.  I think this is what makes CCHS so unique and scary.  You can't not sleep.   You can do everything in your power to stay awake but you will lose every time.  With CCHS, you sleep you die (if you are not hooked to your vent). 

I do not do well on little sleep.  I have always been a good sleeper (until I had kids).  When I was a teenager, my parents had our house remodeled by adding a den.  One morning I awoke to find that the back wall of the dining room was gone.  I heard nothing and slept right through the demolition.  If I did not get my 8 hours, then I was pretty much useless the next day. 

After the girls were born, I was still able to get some sleep but I did sleep more lightly.  I heard them when they would get up and sometimes even if they coughed it would wake me up.  Then comes Noah and there goes my sleep.  The irony is that he is a great sleeper.  He was sleeping through the night at 4 months.  When he was discharged from the hospital, he was on a feeding pump.  We would hook him up to it at bedtime and it would run slowly all night enabling me to forgo those nightly feedings.  Sounds good doesn't it?  Well, it did to me too. 

What I didn't expect was all of the alarms.  Between the vent and the sat monitor, I was up several times a night.  The first month was brutal because I was so worried something would happen to him on my watch.  We have never had nursing because BCBS doesn't cover it.  Once he qualified for Medicaid, we were supposedly able to get nursing but no nursing agency that Medicaid uses has anyone who knows anything about trachs and vents.  So I still did not get a nurse.  After awhile, I began to sleep again.  In fact, I got so tired that I could sleep anywhere, anytime.  I can even sleep sitting up. 

The doctors and professionals do not tell you about sleep deprivation.  They do not teach you how to deal with little to no sleep.  Sleep deprivation invades every part of your life.  It affects your ability to do every day tasks (cooking, driving, cleaning, etc), affects your relationships (you are more grumpy with people, can't stay awake at night to socialize with your family), affects your health (weight, blood sugar, etc), affects your memory (you can't remember appointments, go to the store without a list and forget half of what you need, etc), affects your social life (you are too sleepy to go out , go to church, etc), makes you neglect yourself (who cares what you look like?  You are doing good just to be dressed).  Sleep deprivation is incredibly difficult.  Add in the fact that your child's life depends on you being alert for all of the alarms (most of them false) and you realize that you will never sleep well again. 

You sleep-- your child dies.  How crazy is that? This is the nature of CCHS.  Its the worst form of torture. 

Eventually, your body will adjust, although it is still so hard.  Many mornings I have 4-5 cups of coffee and several diet cokes a day.  Not good for my body but necessary to function.  I try to grab naps when I can.  My house is a wreck because when Noah naps, I usually try to nap.  On a good night, I only get up about 2 times.  On a bad night, its 5 or more times.  Noah, of course, sleeps through it all, although I know he doesnt sleep as well as he should because the alarms are so loud.  99% of the alarms are false.  Low min vol--there is a leak somewhere (we actually turned off this alarm because he has a leak around his trach and it caused the vent to alarm constantly),  disc sense--that means there is water in the line and the circuit needs to be drained.  It can also mean the circuit is upside down and has to be turned over, High peep--usually means water is in the peep and has to be dumped, high pressure--he coughs or fusses a little, low pressure--he has pulled the circuit off, sat monitor beeping usually means the sensor is off (we only get 2 sensors a month and have to use the thing every time he sleeps.  This is ridiculous.  I will address this in a later post).  Then there are the nights when he beeps and you have no idea why.  Maybe a connection is loose, maybe there is a small bubble in the line, maybe the equipment is malfunctioning.  The other night the sat monitor kept going off and he was at 100%!!  I called the next morning and guess what their answer to that was--I DON"T KNOW  (see my previous post for my feelings on this answer).  They did come change the machine out and the alarms stopped.  There are so many things that alarm.  In the middle of the night when they are all alarming, it is dark and you are so incredibly tired, you just want to throw it all out the window or run away screaming. Then there are the nights when he alarms, I go in and fix the problem.  As soon as I lay back down, he alarms again.  There have been a few nights I am in tears because I am so tired. 

I am telling you this so you can be aware of how incredibly difficult it is sometimes for parents of special needs children.  If we are less patient, more grumpy, not as social, lack of sleep is usually the reason.  For you special needs parents out there, hang in there.  You will have your good days and bad days.  Just realize that eventually your body will make you sleep.  Sleep is like a drug.  You will crave it and try to plan your life around the next time you can get some sleep.  Don't let it get the best of you.  Allow yourself to rest when you can, even if things do not get done (cleaning, dinner, etc).  Realize that the doctors/specialists are no help because all they do is tell you to get more sleep, which is impossible when your child is on life support.  (ex:  my doctor said to get more exercise.  I asked her which gym takes special needs children.  There was a long pause and she said "I DON'T KNOW".  They never know because they don't have to live it, besides the fact that there is no gym that takes care of SN kids).  Realize that you are doing the best you can under the circumstances and be proud of yourself for surviving. 

You sleep-your child dies.  Welcome to my nightmare. 

Monday, April 2, 2012

I Don't Know

I don't know.  I always hated those three little words because I always thought there was a reason for everything.   When teaching kindergarten:  "Why did you hit him?  I don't know" (the answer is because he annoyed you), "Why did you just throw your whole juice box away without drinking it?  I don't know" (the answer is because you didnt like the flavor your mom sent you).  At home:  "Why did you leave your math book in your locker when you knew you had a test (this one is for Beth).  I don't know", (the answer is you forgot it).  For each and every one of these questions, there was an answer and it frustrated me to no end that the person would act clueless.

August 26, 2009 was one of the most exciting and sad days of my life.  I went into labor that morning at 2 am.  Noah was born around noon.  It was an uneventful pregnancy (other than gestational diabetes which I had with both Beth and Hannah).  Actually, it was the easiest pregnancy of all three children because I was not sick at all.  Even though Noah was a month early, I knew he was big enough to survive with no problems.  When he was born, he did not make any noise for awhile, which worried me. In fact, he never cried, just made a small noise.   Mother's intuition kicked in and even though they said everything was good, I still felt uneasy.  Soon after his birth, Chris left to go check the girls out of school and I was able to cuddle him.  I noticed that he had a blue tinge to his lips.  The nurse came in and took him to the nurses station to check his sats.  She came back in a few minutes later and was holding an oxygen mask over his face.  She informed me that his sats were a little low and that she was going to stay in there with us and check him for awhile.  She then rolled him out again.  The next thing I knew they were asking where Chris was and informed me they were going to take him to the NICU for awhile because his sats were low.  They said they could only wait 5 more minutes then they would take him.  I called Chris in a panic and he was in the parking deck so they waited.  The girls came in and were able to spend about 5 minutes with him.  We were able to get one picture of us with him and then they took him away.  Of course, I was a basket case and holding it together for the girls was extremely difficult.  Little did I know our long journey was just beginning.  The girls did not get to see Noah again until he was almost 3 months old.  In fact, nobody but Chris or I was allowed to go to the NICU because that was the year of the swine flu and they were overly cautious.

When he got to the NICU, they ran every test known to man.  He was pricked and poked so many times that he still has little white scars all over his hands and feet.  He hated anyone to mess with his feet and it took him a very long time to get over that.  One of the worst days was when we came in the NICU to visit and he had an IV in his head.  That was heartbreaking.  All of his tests came back normal.  They told us he would only be in the NICU for a few days.  When we asked when he would come home they said "I dont know".  When we asked when tests results would be back they said "I don't know".  WHAT IS WRONG WITH MY BABY ???  I DON"T KNOW.  I have never been so frustrated in my life.  Finally after a week and a half he had a seizure and had to be intubated because his CO2 was so high.  "Why is his CO2 so high?  I don't know".  So because we dont know we are going to pump him with Phenobarbital which makes him sleep (NOT GOOD FOR A CCHS PATIENT but at the time they didn't "know" he had CCHS).    We finally had him moved to Children's Hospital because it was clear ST. Vincents had no idea what to do with him.  Before we left, the doctor came in and gave us this one sheet of paper and told us they were checking for Congenital Central Hypoventilation Syndrome, which is an extremely rare disease.  She then informed us he would more than likely be institutionalized the rest of his life then left so we could "digest the information".  I have never felt so helpless in my life.

After being in Children's NICU for several weeks we got the diagnosis and it was in fact CCHS.  So now the answer was we DO KNOW whats wrong with your baby and we can manage it.

So that is why I do not like the words I DONT KNOW.  There has to be an answer to everything right?  I now realize that there may be an answer but you may never know what it is.  Why do things like CCHS exist?  I don't know.  Why can't you use all of this advanced technology to come up with something better than a heavy ventilator?  I don't know.  Why is there not a drug out there to help him breathe better? I don't know.  Why is it such a struggle day to day dealing with this stupid disease?  I don't know.  How is it going to affect him in his later years when he wants to live on his own?   I don't know.

So when you see me, and if I ask you a question please do not respond with "I don't know".  I have enough of this answer for a lifetime.

Tuesday, March 27, 2012

Ondine's Curse

It took me forever to figure out a name for my blog.  I really wanted to use "Trach This" but Chris stole it :).  So, I decided to go with Your Curse is My Miracle.

Last year Chris was invited to write a short piece for our church's devotional book.  His piece made me cry because it was about Noah.  He entitled it Your Curse is My Miracle.  So thanks, Chris, for my blog name.

As many of you know, my son has a very rare genetic disorder called Congenital Central Hypoventilation Syndrome (CCHS). ( Anytime I say CCHS in my blog, it will refer to his disorder and not a local school,  Clay Chalkville High School).  He is one of 4 people in Alabama to have this and one of around 800 worldwide.  (numbers are estimates).  This disorder is one that affects the autonomic nervous system (ANS).  Noah's brain does not tell his body to breathe, causing his CO2 to rise while sleeping so he must have some form of mechanical ventilation the rest of his life.  Currently, he has a trach and a ventilator.  His mutation (mutation being the PHOX2B gene mutation) is 20/25.  Normal in you and me is 20/20.  He is considered mild and only needs his ventilator when sleeping or sick.  He has a lot of medical equipment, which I will talk about in a future post.  We have to constantly monitor his CO2 and oxygen levels.  Some patients with CCHS have abnormalities in heart rate, heart problems such as arrhythmia and bradycardia,  blood pressure problems, eye problems, neural crest tumors, bowel problems (Hirsprungs Disease), temperature control problems and I am sure I left some things out.  Noah has some of the eye issues, swallowing issues, had bradycardia as a baby and temperature control problems.  We go annually to sleep studies to check ventilator settings.  Also bronchoscopies are done annually (this is where they sedate him and scope the trach/throat area to check for granulomas, which is scar tissue).  We also have home vent clinic several times a year, annual holter monitoring (heart monitor), and endless therapies.

Another name for CCHS, is Ondine's Curse.  However, I am not very partial to this one and do not use it often.  According to the myth, there was a water nymph who had an unfaithful mortal lover.  He swore to her that "every waking breath would be a testimony of his love".  When she found out he was cheating on her, she cursed him so that if he should fall asleep he would forget to breathe.  Eventually he fell asleep and he stopped breathing.  (Taken from Wikipedia).

Now, you may think that having a child with a trach and ventilator is difficult.  You are so right.  We have to be very careful and take the vent everywhere with us.  There is a lot of equipment to maintain and tons of supplies to organize and store.  Traveling is very challenging because we have to take our mini ICU with us (we call our van the traveling ambulance).  It is a very hard way to live.  But, do we see it as a curse?  NO!!!!!  We have a love/hate relationship with all of the equipment because without it, Noah would die.  So we hate having to care for it, lug it around all of the time, worry about it failing, etc but we desperately need it.

We see Noah as our miracle.  CCHS is extremely difficult to diagnosis.  In fact, the NICU doctors had no idea what was wrong with him at first.  They had only seen one case of CCHS the entire time they practiced medicine.  Our pediatrition had only heard of it but never knew anyone to have it.   It is a miracle to us that he was diagnosed so early so that we could begin the life saving treatment.  Because of this, he has no cognitive problems and is extremely healthy.

So you see, Noah is not our curse at all.  He is our miracle.  He is extremely tough and resiliant because he has been through so much in his short life.  He has taught us so much about ourselves and has changed our perspective on life.  He is not our curse, he is our blessing.  Our own personal little miracle.

Sunday, March 25, 2012


Why?  That is a question that I get asked frequently and over half of the time I have no answer.  "Why does God have teeth", "Why do butterflies taste with their feet instead of their mouths", "Why are people mean".  These are just a few of the "why" questions that I have received for which I have no answers. 

The one "why" that I can answer is "why did you start a blog?"  For one reason,  my husband keeps bugging me so I decided to try writing one.  However, my main reason for writing this blog is to try to help other mothers/families who are going through some of the same things that we have and are currently experiencing.  If I can help one mother who is in the NICU, one mother who has a child with a rare disease, one mother who is terrified of having a child on a trach and a ventilator,  or one mother who is having trouble juggling "normal" life with a "special needs life" then I will be happy.  My goal is to help raise awareness for my son's rare disease and to give people an insight into the daily struggles and triumphs of raising a family dealing with a rare diagnosis. 

So, welcome to my blog and thanks for reading.