Trach Myths

1.  If your child has a trach they cannot talk--This is not necessarily true.  The trach can interfere with speech but there are some things that can help with this.  The PMV (speaking valve) allows the air to be breathed in through the trach but back out of the nose. The cap completely closes off the trach and the person is able to breathe the natural way.  It took Noah 2 years (yes Years) to get use to the PMV.  He hated it.  We would put it on and he would scream.  One day while at the beach we popped it on to show everyone how he screamed while wearing it and miraculously he did nothing.  He tolerated it and even began making noises.  I found that the PMV dried him out terribly and we had to be really careful to prevent plugs  (this is where the trach becomes plugged and no air gets in or out.  It is dangerous for trach patients).  Shortly thereafter we tried capping him.  The first try was disastorous.  He also hated it.  But a few months later he didn't even realize we had put it on him.  Now he wears it any time he is not hooked up to the vent.  It is a miraculous little invention.  Who would have thought such a little piece of plastic could be so important and amazing.  Noah did learn how to make sounds and even could say a few words without using the PMV or the cap but his voice was very soft and he only said a few words.  So, even if one doesn't tolerate the PMV or cap, it is still possible to vocalize around the trach.

2.  Your child can never take a bath or shower.  They must be spongebathed--We have always given Noah baths.  As a baby, we used the baby bathtub.  Now he sits in the big tub. Before being capped, he always wore his HME in the tub.  Now we use the cap.  I keep the water shallow and let him splash to his heart's content.   I have him hold his head back and rinse his hair. 

3.  Your child cannot swallow with a trach--Depending on the diagnosis, this is not necessarily true.  A lot of trach babies have problems with aspiration but no trouble swallowing. In Noah's case, he cold swallow but after doing a swallow study, we found that the possibility of his aspirating was high.  Because of this, we had to thicken all of his liquids.  He had many swallow studies and we did vital stim therapy for about a year (this is where electrodes are placed on his throat and a small current is used to stimulate the throat).  Finally, after 2 years he passed his first swallow study and showed no signs of aspiration. 

4.  Your child cannot swim with a trach--We live in Alabama.  The summers are brutal and humid.  It is impossible to do anything outside for any length of time without water being involved.  We go to the beach every year for vacation and sometimes go several times throughout the year when it's not hot.  Swimming is a huge part of our lives.  Because of the trach, there is an open hole that leads directly to the lungs.  We have to be very careful to keep water out.  At first, we used HME's then graduated to the cap.  When Noah was a baby, I would put him in his baby float and keep the suction handy.  He was content to sit in that and float around.  Now that he's older, it's becoming more of a challenge to keep him safe in the water.  This past summer we went to an indoor water park for a week.  His favorite ride was the lazy river.  We were able to sit him in one of their double floats and he was able to enjoy the water without being submerged.  They had a huge kid area that was only about 2 inches deep.  There was a huge climbing structure that squirted and dumped water.  They also had a big regular pool.  We just carried him around in this one.  He actually did fall face first a few times and scared me to death, but he came up laughing and since he was capped there were no issues.  I made sure to keep the suction machine close at all times.  We also purchased a small life vest, which provided extra protection.  The trach was hidden behind it and I think that even when he fell face first, the trach never got in the water, just his face.  I also kept a swim shirt on him and tucked his trach (he has the longer bivona flex) underneath.   I remember once seeing a picture of another CCHS child in the pool and he even had his ventilator.  They just had the ventilator sitting by the side of the pool and he was in the shallow end, circuits and all.  This inspired me and I vowed to allow Noah to have the same experiences as his sisters.  Every child is different and doctor's should be consulted before trying any of this.  I am in no way advocating that every child with a trach should swim.  I'm just stating what has worked for us. 

5.  You can never travel in the car by yourself if your child has a trach--We have never had nursing so all of Noah's care is my responsibility 24/7.  With two older children, we are always on the go.  Plus, Noah was constantly required to be at many appointments when he was younger.  I really had no other choice than to travel alone with him.  It was definitely a pain when he was hooked up to the vent because he always seemed to pull his circuits off.  I made sure to keep him attached to his pulse ox and placed the ventilator so I could see the numbers.  I also had a mirror that I used when he was backwards facing.  Every time he pulled the circuit off, he was awake and the alarms were always false.  I just found a good spot to pull off the road and reconnect him.  Of course, traveling alone depends on the child's specific health issues.  Some children need a lot of suctioning and some children are dependent on the ventilator and cannot breathe if it gets disconnected.  In these cases, I would not travel alone.  Again, consult your doctor on traveling tips.

6.  You can't travel too far from home or your hospital--For us, this was never the case.  Our first trip was to the beach when Noah was 7 months old.   (3 months after being released from the hospital).  Since then, we have been to Disney, the beach every year, the Wilderness at the Smokies Water park,  and several other places.  I always pack a lot of supplies, several extra of everything.  Traveling long distances can be done, it just takes a lot of planning.  The hardest part is figuring out how to set the vent up in these different hotel/condos. We make sure to take our long extension cords and our power strip. 

7.   You must have a full time nurse--We've never had nursing.  Our insurance does not cover it.  I'm not going to go into a lot of detail here because I've already blogged about this but it is definitely possible to take care of your trached child with no nurses.  (See my blog on Nursing).

8.  Your child will never have a normal life--Again, I'm not going into a lot of detail here because I've already blogged about this.  (See my blog entitled Normal).  I must say that Noah is as normal as you or I.  He just needs help breathing at night and when he's sick.  He goes everywhere we go and has all of the experiences that my girls had at his age. 

9.  Your child will have to be institutionalized--Unfortunately, this is what we were told when Noah was in the NICU.  The doctors were baffled.  They ran every test they could think of and everything came back normal.  He had EEGs, EKGs, and tons of Xrays.  Everything was normal.  He had so much blood taken from him that he had to have 2 blood transfusions.  There is nothing more horrifying to a parent to come in the NICU and see an IV in your child's head.  Everyone around us was going home.  Day after day beds were being emptied and there we sat, waiting for answers which would not come.  "I don't know" became the doctors standard answer.  Finally, after he had a seizure and was put on the ventilator, they were going to transfer him to Children's Hospital.  The doctor came over to us, handed us a piece of paper and said that they thought that he had Ondine's Curse.  She said in all her 40 years of being a doctor, she had only seen one case.  She then went on to say that he would more than likely be institutionalized the rest of his life.  Her parting words were for us to read the paper she gave us and she was going to leave us to process.  I was in complete shock.  I looked at the paper and it was one paragraph on CCHS.  It was so complicated and very negative.  At this point, I lost hope.  I lived in a deep dark fog until he was finally moved to Children's and they were so encouraging.  The day we got the diagnosis, all the doctors gathered around (which is never a good sign) and told us they had the test results back and it was CCHS.  I immediately broke down because I had been reading things on the internet and after being told by that other doctor, I was thinking that he would not be able to live with us.  Through my tears, I heard his new doctors say that everything would be ok.  They told me he would live a normal life and be running around like a normal toddler.  They said he could do anything he wanted to do (except maybe deep sea dive).  I began to feel hope again.  They were very honest and said it would be a long process to get him home.  I remember saying "home?".  They probably thought I was hard of hearing or something because he kept repeating the fact that Noah would come home.  In our case, the doctor was wrong.  They did not understand the disease and were not very educated.  I think they underestimated us.  For some, an institution is the only option.  Some care is so involved that one person or even a whole family cannot handle doing it alone.  In Noah's case, it just did not make any sense. 

Living with a trach is certainly different.  The main thing is know what to do in an emergency situation.  (trach plug or decannulation-when the trach comes out accidentally).  It is important to know how to clean the trach site and prevent infections.   Other than that, it is not complicated at all.   My main goal is for people to see that the trach is no big deal.  It's really no different than someone using an inhaler or a shot for diabetes.  Don't be scared of it just because it's something you don't see every day. 

The Box

People like boxes.  They help with organization.  They help with the storage of materials.  They make things neat and tidy. They really do make life easier.  That is, unless someone tries to stuff you inside one of them.

People are always trying to place Noah in boxes.  Not really literally, just figuratively.  Every medical procedure has forms containing many boxes.  I am asked to check the boxes that apply.  I never check any of them, except the "no" boxes.  Then I am asked to explain myself.  Does your child have a lung disease--no; then why is he on a ventilator?  Does your child use oxygen--sometimes; how much oxygen--depends on his sats.  Is your child allergic to any medication--no but please do not give him propofol as a sedative because it could cause heart pauses;  Does your child see a cardiologist--no but we do annual holter monitoring.   See the pattern?  We do not fit into any of their little boxes.  This just seems to confuse them.  It is very difficult to comprehend that Noah has a trach and is on a ventilator but is perfectly healthy.  Yes, we do have to monitor him carefully but he lives his life just as you and I live ours. 

All of this can be very frustrating.  CCHS is such a complicated disease.  Every child is different.  Even children with the same mutation number can have different issues.  That is what makes this all so challenging.  Our kids do not fit into anyone's box.  It doesn't matter how many times you try to cram them in there, they just won't fit.  We live outside the box. 

I am hoping that one day there will be a cure for CCHS.  It would be nice to know that there was a simple medication that can make Noah breathe (there is currently a study being done with one of Noah's brave CCHS sisters, Zoe, who is testing this medication).  But until then, we continue to live outside of the box and will teach Noah that he is a unique individual who has a great capacity to teach the world about living outside of the box.