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.