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. 

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.