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. 

Normal...

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.