Tracheostomy and Feeding: 

The first steps into eating is massage

Most children with trachs have them because there is an underlying problem with breathing.  If you do not have the comfort of normal breathing you can't eat.  (Think about how difficult it is to eat when you have tight nasal congestion, or think how difficult it would be to eat after you just ran a fast sprint.) Therefore, the trach helps give children more comfort and safety breathing, but it does not necessarily allow for normal breathing and swallowing coordination.  In fact, the trach can anchor the natural neck movements and laryngeal movements needed for swallowing.  In some instances a child may require a tracheostomy for their airway lifeline, only to develop dyspahsia.

There are various ways to help strengthen swallowing and loosen the neck muscles to aid in breathing and swallowing.

 1.  Gently massage the neck muscles.

              Tight neck muscles pull the collar bone and rib cage up, making breathing more  labored, but they will also put the chin and larynx down.  We want these trached children to be able to move freely and without pain.  Many parents have told me they are concerned about massaging around the neck because the tracheostomy is there.  It is very important to not compromise the tracheostomy, but don't be afraid of the child's neck muscles. 

2.  Gently massage under the jaw

               With one hand softly supporting the jaw, take your thumb and massage the underside of the jaw.  You will gently press up and out toward the chin.  You want the tongue to move as well inside the mouth with the up and out motion of your thumb.


3.  Loosen the jaw with massage.

                  Start by gently massaging the muscle at the back of the jawbone.  Use circular motions forward and back, then in opposite directions.  When the child's jaw joint is loose enough, you can carefully move the jaw side to to side.  Place your thumb on the muscle in the back of the jaw with soft pressure.  Then with your other hand use the thumb and forefinger at the chin and push ever so carefully to the side.  Repeat on the other side.  


 The most important thing to remember is not to be afraid of touching the neck and trach area.  Those muscles need to be loosened and massaged. 

Feeding Therapy Introduction

 For those of you without tube feed children, you probably don't know why a child would need feeding therapy.  Well, there are truly children in this world who refuse to eat.  I don't mean being a picky eater, or one who struggles to eat vegetables.  I am talking about kids that have had so many physically traumatic medical events, or children with heightened sensory issues, or children who have suffered allergies, GERD, or constant vomiting, that their ability and desire to intake orally is not sufficient enough to survive.  Not only are there medical reason for food refusal, they have developed behavioral issues because of the medical issues.

Many may also wonder why parents and guardians would put forth Herculean efforts in order to get their children to eat orally when the child has a g-tube?  Some parents do decide to not push for oral feeds, and that's their prerogative.  However, there are parents like myself who want to push their children to perform tasks like other children their age.  We want our children to develop normally and meet important developmental milestones. We desire our children to overcome the heavy challenges placed in front of them.  We want our children to sit down with their friends and family and eat, just simply eat.

How do parents and therapists most effectively help a child with a feeding disorder eat?  There are many philosophies about how to best help a child eat.  I think the answer for each family will be based on the severity and medical needs of their children.  However, a family must be careful to follow the philosophies that are based on scientific evidence, not ones that are based on "feel good" ideas.  Always ask a feeding clinic what their success rate is and how that rate was determined.   If there is a high success rate you can feel confident you can find some success there as well.

You will also need to look for clinics that follow a multi disciplinary model. You need a pediatrician or GI doctor following closely with the feeding.  You will need Occupational Therapist and a Speech Language Pathologist as they help build the muscles and swallowing skills needed to eat orally.  You will need a nutritionist to follow your child's weight gain. You will need a behavior therapist to modify behavior that prevents your child from eating.  Even if you do not have a clinic that has all the disciplines together in one place, you will want to find doctors and therapists that will coordinate with each other.  As the parent you may need to be the one that coordinates the professionals and make sure they are all working together for your child.

You will find many clinics that focus on making the child feel good in the meal, and making a meal a happy time.  This may be a good place to start getting the child with eating disorders to be able to touch the food and become desensitized to the different textures of food.  In some instances this therapy can help kids who do not have severe feeding disorders.  However,  for most severe children it does not help them change their behaviors when it come to eating enough to support themselves.  For this advanced therapy behavior modification with strict protocols prescribed by a BCBA (Board Certified Behavior Analyst) is needed.   Behavior analysts observe and record behavior,  then they use solid data which indicates what works to reinforce or change behavior. These behaviorists are the real magic makers.  They tie all the therapy and medical needs into real behavior changes.

Watch out for therapies that want the child to only touch the food, kiss the food then throw away, or to chew the food and spit.  You must be very careful not to increase the child's inappropriate behavior toward food.  This may seem like an good way to get the child to eat, but any therapy that allows the child to "escape" from actually swallowing the food will ultimately lead to that behavior being reinforced.  That is why you really need to find a clinic or behaviorist that understands how critical it is to work on intake, not just food exposure.

Infant vomiting.....What is normal?

When babies are born almost all of them have "spit up."  You carry around your burp cloth and make sure your visitors have the cloth when they hold the baby.  It's embarrassing when your baby spits up on the lady down the street who just dropped by to see the new little one.  Baby spit up seems to be the norm, something we all expect and plan for.

A GI doctor once told me it IS normal for babies to have reflux, no not just the spit up, but reflux.  Why?  Babies have small stomachs and eat frequently.  Some babies love to eat and overfill.  Also, babies' esophageal sphincter, (the opening into the stomach from the esophagus that controls food getting into the stomach and staying there) may not fully be developed completely yet.  Babies muscle tone is low compared to adults, so sitting up straight and core control is not developed and therefore leads to reflux and vomit.  Take assurance parents, it is very normal for your baby to spit up.

So when does vomiting and reflux go from normal to a problem?  There are three things to look for that will indicate a problem:
   
                 1. The baby is not gaining weight.

                 2. The baby is in pain.

                 3. The baby begins to refuse food.

1. If the baby frequently vomits during feeds, or if the baby vomits all the feeds given at most feeding times, he or she will not gain appropriate weight.  That is why if you notice too much vomit, I suggest you go to pediatrician and have your baby weighed and talk openly about your worries.  Something underlying may be going on and should be addressed, especially if the baby is not gaining weight.  If the baby vomits a lot but continues to gain weight, there is not cause for concern.

2. If you notice your baby crying a lot after spiting up, if you notice the baby retching in pain, if you notice your baby arc his or her back, you can suspect your infant is in pain. Sometimes there is more reflux than what you notice.  You may only be seeing the baby vomit some of what is coming up into his or her esophagus.  There is acid in the stomach and when it is constantly refluxing silently or with vomiting into the esophagus it will begin causing irritation and many times pain in the infant.  This is a problem because you do not want your baby to be in pain and also it can lead to food refusal.  You should talk to your doctor if your baby seems to be in pain and ask the doctor about acid blocker medications.  These medications do not prevent reflux or vomiting, but it will neutralize the acid so your baby's esophagus is protected and has less irritation.

3. A baby may begin to reject feeds for a many reasons, but the most common reasons are pain associated with reflux and vomiting,  sensory issues, or breathing/aspirating issues when feeding.  Many times the baby is refusing consistently because there is an underlying issue.  If your child refuses food consistently you need to make an appointment to talk to your child's pediatrician.

Above all, always trust yourself and your child.  If you feel the baby is vomiting too much for any reason, please talk to your doctor.  However, always remember reflux and vomiting in infancy is the norm so try not to get too worried. 

Micro What?!?!?!?!

I've been absent writing posts for too many weeks, however I needed time to digest new information we found out about Mason.  I hope that by writing this post it will help me come to terms with the new information and hope others out there will be able to help me.

When Mason was about a year old our pediatrician sent us to see a geneticist at Walter Reed Army Medical Center.  We had the long interview, the physical examination, and a chromosome test.  At the time, 2007, the genetic testing wasn't as sensitive as it is now.  In 2007 there were no genetic syndromes found that could explain Mason's medical problems.

In 2014 after Lila, my youngest child, was also found to have the laryngeal cleft that Mason had, the ENT doctor at John's Hopkins referred us to a Genetics once again and explained there was a newer, more sensitive test and that Genetics was very different now than when Mason was a baby.

You see, as I understand it, for years doctors could only count how many Chromosomes a person had because the sensitivity of the testing and the cost to perform more in depth testing.  They could only count the recipe books so to speak.  However, once testing became more sensitive and more cost effective the doctors could count the actual genes and DNA in the body.  They could count the lines and words inside all those recipe books.

We took Mason in January to see the Geneticist at Johns Hopkins hospital in Baltimore, MD.  We again went through the long family history, explaining every medical or interesting fact about members for both sides of Mason's family.  We started with grandparents and ended with Mason's first cousins.  The genetics team decided that Mason should have blood drawn and the in depth genetic testing done.  They noted that although there wasn't an outright trend on Mason's dad's side of the family, there were enough strange medical issues to have him tested.  We also noted that Mason's cousin on his dad's side had a 16p13.11 deletion.  We didn't know what that meant, but mentioned it to them anyway.

After four weeks of waiting I received a call from the genetics councilor.  Mason did in fact have 16lp13.11 micro deletion like his cousin.  I was shocked because their symptoms were so very different.  I was also scared and devastated to learn that the little boy who I wanted to grow out of all these problems, would most likely not ever fully grow out of them at all.  He was missing parts of his genes!!!!

I cried for many days as I tried to come to terms that my little boy, the boy I put so much effort into making healthy, had a deficiency that I could NEVER cure, only treat.  I know many parents have gone through this same process, with even more devastating news about the genetic issues their child carried, and I took hope in the support I knew I could find.  However, it was my little boy that didn't have all the DNA he needed.  It became scary.

We were told at an appointment soon after that first phone call more about the syndrome.  There are such a wide array of symptoms and issues that can be associated with this micro deletion.  Mason did fall into some of the more prominent  issues, but not all.  There was story after story about different symptoms and problems. It became hard to understand what to look forward to or what was the norm.  But that is the interesting thing about genetics, all humans are so varied even with genetic abnormalities.

We were told my ex-husband also had this same micro deletion.  So much of my failed marriage and my ex-husbands struggles to function successfully in life and relationships became very clear.  This comforted me but also scared me of what is in store for my Mason, especially with his schooling and social skills.  The geneticist reminded me there wasn't the focus on early intervention and special education when Mason's dad was in school and that we have already have a good head start with any problems that may come his way.  I took courage in that.  I also took courage that there are things we can look out for preemptively.  We can get his heart checked just in case something was overlooked.  We know that his struggles in school are based on this deletion and not a lack of us doing everything possible.  I know that his feeding difficulties were not solely because he had been NPO for so long or the cleft,  but because almost all cases have shown feeding difficulties.  Many things came into focus.

Now the next scary step is to get all my children tested for 16p13.11 micro deletion.  They all have a 50% chance of missing these important development genes.  I currently have that in the works but it takes a while to get insurance approval.  In the meantime I am researching and trying to remain as calm as possible.  I am looking at the amazing human Mason is, that he has survived very difficult issues at a very young age.  He is a fighter that has an indomitable spirit.  He is just the person to succeed and overcome despite the fact he is missing parts of his genes.  He is amazing!!!!

To Nissen or Not to Nissen?

I wish I could say that when the doctors told us about Mason's need to have a Fundoplication I studied it out thoroughly before I made a decision.  I did not.  I trusted the doctors that this was a life saving surgery for him, but I later doubted I had made the right decision.

He was vomiting most of his feeds at 6 weeks old and barely growing.  Not even the NG tube with continuous drip feed was helping keep all he needed to grow inside his stomach.  When the doctors told me about a surgery that would prevent him from vomiting, I was all for it.  It was an amazing thought that this Fundoplication, or Nissen ( named after the surgeon that pioneered it) was just what Mason needed to make him stop vomiting.  Knowing that he needed a tracheostomy and a g-tube placement I understood the importance of protecting his airway from vomited materials.  I agreed heartily to the Nissan along with the tracheostomy and gastrostomy. 

However, it was not the miracle I was hoping for and many parents I have met in hospitals since then have voiced the same concerns.

The Nissen is a surgery where a surgeon wraps the top part of the stomach around itself to make it very tight so no stomach materials could reflux out.  The surgeon was able to perform the surgery laproscopically on little Mason to save him the trauma of a cut from his public bone to his chest bone. I begged the surgeon to try it laprosocically,  - not sure why - just mother's intuition.  I was highly grateful that they did perform it with only three small cuts, but he was a baby weighing only 6 lbs so it was a difficult surgery laproscopically . 

At first it seemed that the surgery was successful.  He was not vomiting.  However he started vomiting a few days after of surgery.  He did not vomit as frequently as before, so that was good.  I was happy, but not fully satisfied as I was hoping for a miracle.  I noticed that it seemed to take him much more effort to vomit now and he seemed to be more in pain with the vomiting.  The Nissen gave us time to help him grow and keep more food in, but it also stressed me at the pain he exhibited when vomiting.  As he got older all the tests showed that his Nissan was in place and working, yet obviously it wasn't working fully as he was still vomiting.

Doctors suggested that we should redo the Nissan as it is possible for the wrap to get lose.  At that point I started researching the surgery more thoroughly.  This was also during the time Mason was inpatient at Kennedy Krieger Institute learning how to eat orally.  I was surrounded by other pediatric patients who had had Nissens performed.  I saw children retch violently but  were not able to vomit.  Yes, they kept their food in, but the retching was agonizing to watch.  Our roommate, a two year old little girl, became sick with a virus.  Her mother had the same illness.  The mother was able to vomit while her daughter simply retched and gagged without being able to rid her body of the virus in her stomach.   At that point I was grateful that Mason was still able to vomit.

Most G.I. doctors noticed how small Mason's stomach was when they performed an endoscopy .  I have asked if his stomach were so small  because the Nissan made his stomach smaller.  Various doctors stated it could have been a possibility the Nissan made his stomach smaller, but it is just a theory.  He struggles, even now, to fit a normal sized amounts of food in his stomach.  Although I cannot blame the Nissan for that fully, it is always in my mind.

This is my overall feeling and opinion about the Nissan.  If your child's life in in danger because there is a high risk your child will aspirate (choke) on stomach materials when refluxing, you absolutely should consult your doctor and consider the Nissan.  However, if the doctors are recommending a Fundoplication to help with weight gain or just simply to alleviate pain from reflux, I would think more carefully on that and do more research.  Our G.I. doctor said studies show that more people are dissatisfied with the surgery and have other issues like bloating, painful meals, difficulty swallowing, and retching.  Most patients that I have talked to or have read about seemed to swap one pain for another.

If I would have known all I know now about the Nissen when the doctors first suggested it,  I believe I still would have agreed to it.  There are three distinct reason I would have gone through with it: 1) because at the time he had already had a life threatening aspiration,  2) he had an abnormal Larynx which made it more difficult to protect his airway,  3) he was vomiting with every feed making it more likely he couldn't protect his airway.  Yes, the Fundoplication did bring other problems but I believe it helped him live.  Am I frustrated that he still vomits and that he has a terribly small stomach, but it was a necessary evil to help him live.  Will I agree to Nissan, No.  I feel we can work his nutrition other ways with multiple small meals and his night g-tube feeds.  Right now it is not worth the risk to put him through that surgery again.

These are simply my experiences with the Fundoplication, please make sure you discuss them fully with your doctor and read all you can about it.  Always look at the risks vs the benefits from any surgery.  If the possible benefits are worth more than the risks, go for it.  If you are unsure, pause and research more.  Remember this is just my experience with Mason's Fundoplication, it is simply observations and opinions, look to medical journals and your doctors to make a final decision.

Uggg!!! That Alarm Again.

Sigh, the late night pump alarm that still causes immediate stress at the sound, even if it is simply telling me to turn the pump off.  For those of you who have heard this high pitched, monotonous "beep, beep" of a feeding pump alarm you know what I mean.  It's so annoying, especially in the middle of the night when you desperately need sleep.  The stumbling out of bed, half dazed shuffle to the g-tube pump  because the annoying alarm woke you becomes routine. However this routine happens every single night without a break and yes, it always disrupts a parent's sleep and absolutely adds up over the years.  

At first when the pump was so new to us, before Mason even got his g-tube and only had an NG (nasalgastric) tube at 2 weeks old, I had to figure out this new piece of machinery that would constantly beep.  Was it beeping because he was out of food in his bag?  Was it beeping because there was a clog in the tubing?  Was it beeping because the NG tube migrated into a place that was blocking the flow?  What about migration to his lungs, oh how dreadful!!  That beep always reminds me of being tired, stressed, and needing to figure out what is wrong, again.

I have placed in the pages section definitions for all the different types of feeding tube placement meanings and another page with tips on how to figure out what is wrong causing your child's pump to beep.  I hope this will help the newest members to the g-tube family.

However, when you are tired and your child's pump is beeping, remember you are not alone in this.  There are doctors and nurses who are only a phone call away who can help you work these problems out.  Also, remember that although it doesn't feel like it, there are millions of children who have feeding tubes in this world and you are not alone.  Remember that you have a living child thanks to that feeding tube and pump that is causing you so much trouble.  Remember you are doing a job most parents or caretakers will never know and that makes you special.  You have the ability to learn and overcome problems whether it is late at night, when you are on vacation, or just trying to have a normal day.  Feeding tubes and pumps give us freedom to have a child home with us and alive!  Although, yes, very annoying. 

Failure to Thrive

When I tell my friends or acquaintances about Mason's most current issues with  "Failure to Thrive" I mostly hear, "That would be a great movie title."  Ha ha.  It is true.  However, to many children in the US, that diagnosis is a reality.  How does a mother deal with the news that a child she spends so much time trying to help and encourage has failed to thrive?  It is not an easy question to answer.  I find myself feeling like a failure.

However, I must remember the extraordinary feats he has overcome to be standing, running, talking, going to school, and even eating at all.  Yes, we have come a long way.  So despite the issues I am  dealing with now, I cannot let the phrase on a doctor's paper deter me from all the good I am doing with a special needs son.  OK, he hasn't gained all the weight he needed to this year, but we are on a very wavy tight rope trying to balance proper tube feeds with oral feeds.  When we are in a hospital it takes a team of doctors, therapists, and nutritionists to balance this dilemma, so it is easy to see how a single mother of four finds it very difficult to walk across this tight rope alone all the time.  Right?!

Well, for all those mothers of g-tube fed children let's not get discouraged with feeding issues.  Let's keep moving forward and enjoy the miracles our children are and hope daily for some aspect of our children to thrive, even if it isn't weight gain. 

Let's figure this out together.