G-Tube Acceptance and our Experience with VitalStim

I’ve written a lot about the anxiety that I feel about Owen not eating.  I’ve tried to explain that he’s not just picky, I’ve vented about regression and I’ve given detailed summaries of what worked and didn’t work.

Owen turns 3 in 8 days (I know, I can’t believe it either) and he still doesn’t eat measurable amounts of food.  He puts things in mouth,  bites a piece off, chews and chews and then spits it out.  He asks for food, seems to enjoy the taste of food and even likes the sensory experience of it in his mouth, he’s even starting to express hunger.  He just won’t swallow.

He used to swallow, before what I call the “Pediasure debacle” and the suspected case of Eosinophilic Esophogitis (all described in excruciating detail in the link above).

In January, we started VitalStim Therapy.  VitalStim, in mom terms, uses electrodes to teach the muscles and the brain how to swallow.  It’s similar to how people who have paralysis will use electrodes to ride exercise bikes.  It doesn’t hurt – he is slowly transitioned into higher settings of electrodes.  As with all feeding therapy, the goal is for Owen to enjoy eating, so we keep him comfortable and often distract him with the iPad.  Here is a picture of Owen in feeding therapy with the electrodes in use.

20140411-084133.jpg

I had a lot of hope for Owen with VitalStim.  My expectations were probably unrealistic, but I kind of just thought since he used to like eating, if we could get this one piece solved for him that he’d jump right on board.

In reality, it’s been sssllllloooowwwww going.  First, Owen had several illnesses during cold and flu season that had him missing sessions.  The idea with the program is to be more intensive with 2-3 sessions a week.  Owen’s been averaging closer to 1 session a week.  The other thing is this is eating and eating just takes a long time to learn to do when you’re this old.

We’re definitely keeping up with therapy and keeping food fun.  I want Owen to eat and am going to provide the best environment to give him that chance.  But here’s the thing.

I AM DONE STRESSING ABOUT IT!

Owen is relatively healthy.  Other than some occasional constipation/diarrhea cycle issues, his gut is happy.  I no longer fear feeding him.  He’s a big boy.  37″ tall and 32 pounds.  He’s breathing on his own.  He’s walking on his own.  He’s talking in 4-5 word sentences.  Most importantly, he’s comfortable!  It’s taken 3 GI doctors and 18 months to finally get him back to comfortable.

We had a GI appointment today.  The doctor was realistic, he said that Owen’s allergies are going to complicate his ability to meet his caloric needs with a regular diet.  That’s not to say never.  It’s just to say, there is one more variable to overcome.  It’s never fun to hear of the roadblocks, but I do appreciate the candor and honestly.

He’s doing so well.  He can live a long healthy life with a g-tube.  I’ll keep trying to give him every chance to eat on his own and I’m never losing hope, but the truth is, if he always needs it, it’s okay…and it sure makes giving icky medicines a lot easier!

That’s my story and I’m stickin’ to it…at least as long as he needs a g-tube.

 

 

What to do When a G-Tube Falls Out and the Hole is Too Small to Replace it?

If you’ve ever been the caretaker for a tubie (someone who has a gastrotomy, a.k.a. g-tube), you’ve wondered what happens if it falls out.  In the back of your mind you fear that it’ll fall out and you won’t notice before the stoma (hole) closes.  I know this is many of our worries, because it just happened to me and many people responded with, “that’s one of my biggest fears!”

Some days I wonder, “does this crap happen to me just to give me something to write about?”

That may be, but since it did happen and I learned a thing or two I wished I had known in advance, I thought I’d share so others can hopefully benefit and avoid a drive to the ER wondering if your child is going to need surgery.  Note, I did not say you can avoid a trip to the ER.  I’d still recommend going in, but you just may have a better idea on the surgery or no surgery question.

Disclaimers:

Owen has a Mic-Key button so this information best fits this button.

Regardless of the type of g-tube your child has, please review your emergency plan with your doctor.  I’m sharing what was recommended as “rule of thumb” but every patient is different and has unique circumstances.

If the stoma is less than six weeks old, do not attempt to replace a g-tube.  Cover the stoma and get to a doctor as quickly as possible.

This information assumes you have been trained to replace a g-tube by a medical professional.  If you have not been trained to change g-tubes, cover the stoma and go to the doctor.

Emergency Kit:  You will want to keep this emergency kit with you at all times.  If at any time you try to replace a g-tube and can’t fit the tube into the stoma, this will be your back up plan.

  • 1-2 sizes of foley catheters that are smaller than your child’s g-tube.  (For example, Owen has a 12 French g-tube.  My kit has a 6 french and an 8 french foley catheter.  French measurement is the diameter of catheter.  Each unit is 1/3 mm).  To the right is an example of a Foley catheter. You should be able to get catheters from the same provider who supplies your g-tube replacements.
  • 5 ml syringe (use one from an old g-tube kit)
  • Lubricant (KY Jelly or similar)
  • A small diaper (newborn works best, but any size will do)
  • Tape that will stick to skin
  • Hand sanitizer (in case you’re not near a sink).

How to use your emergency kit when the g-tube won’t fit in the stoma:  The process is very similar to replacing a g-tube, however, you’ll instead use the foley as place holder to keep the stoma open until you can get to the doctor.

  1. With the syringe draw up the amount of water that your child’s g-tube calls for.  (3-5 ml are most common)
  2. Take catheter and dip the deflated balloon (balloon looks just like a g-tube balloon, note picture above) end in lubricant.
  3. Attempt to insert the catheter into the stoma so the balloon is fully inserted.  You may need to try the smaller size if the first one does not work.
    1. If neither size comfortable slides in, cover the stoma and go to the doctor.  Do not force it.
    2. If one fits, move on to step four.
  4. Fill the balloon with the syringe of water using med port.
  5. Wrap the open end of the catheter in the diaper to avoid stomach contents draining out and tape it closed.
  6. Tape the catheter onto the stomach to secure it from moving around or getting pulled.

Now, you can take your child to the doctor knowing that the stoma is still open.  The stoma should open a little wider than the size of the catheter so once you get to the doctor, they can try the next size up and then they will keep moving up the scale until the stoma is large enough to place the correct g-tube.  The process works well and shouldn’t cause much, if any discomfort, to the patient.  Owen did cry when they placed the g-tube but I think that it was more related to medical anxiety than actual pain.

Again, this is the general recommendation from the ER, however, please check with your doctor to make sure there is not a better plan for your child.  I really wish I would have known to have an emergency back up kit.  It would have lessened my fears and made for a much shorter ER visit.

For a tube replacement refresher, here is a great description with diagrams from BC Children’s in Canada.

tubie

Why we went to Gastroenterology and What’s the Plan

After my post on Thursday, I think it’s pretty safe to guess that you all know that we went to Gastroenterology (GI) last week.  I typically process things more before I just throw them out into the internet to be always available.  However, I’m okay with everything what I wrote Thursday and I slept quite soundly after getting it off my chest.

Today, I do want to share a bit more about why we went and what our plan is, because it seems that many of us have similar “sensitive tummy” issues with our former preemies.  I put “sensitive tummy” in quotes, because that’s often the nice way to say it, but for the families dealing with it, it’s much more than a sour tummy every once in a while.  GI issues are a huge struggle for many preemie families.

GI Issues in Preemies:  Some of the non-preemie readers might be asking why that is, and the non-doctor answer is digestion develops late in gestation.  Kellen’s 10 days in the hospital were mostly due to digestion.  He knew how to eat (suck, swallow, breath), but his stomach and intestines didn’t know what to do with it yet.  The food just pooled in his stomach and turned foul (it was removed via his nasal feeding tube).

Another problem that is prevalent in preemies is reflux.  If you walk into a feeder grower unit in a NICU, you will see almost all of the babies swaddled into their bed at an incline because keeping the head up can help reduce reflux.  It seems that nearly all of the preemies that I’ve gotten to know have had reflux treated with Prevacid, Reglan or some other alternative.  Reflux is painful for the babies and often makes them fussy.  Also it often inhibits their desire to eat.  In some cases, like Owen, reflux can be silent (doesn’t come all the way up) and they aspirate on it, causing dangerous damage to the lungs.

The digestion process not being mature enough is also one of the leading causes of death and long-term disabilities in premature infants.  In many of these cases, the bowels become inflamed to the point that the tissue dies (Necrotizing Entercolitis – NEC) .  When that happens, the intestines can perforate leading to intestinal fluids filling the body with infection requiring immediate and high risk surgery.  Those that survive the surgery and the days following it, are at greater risk for Short Bowel Syndrome (not enough bowel to properly digest food) or, like Owen, neuro (brain) development issues.

Owen’s GI History:  Owen has had very significant GI issues.  As I understand it, he didn’t actually have NEC,  There wasn’t dead tissue, but there were several perforations in the top part (jejunum) of his small intestine.  When they went in for surgery, they also discovered that Owen’s small intestine was not connected to his large intestine (Ileal Atresia).  It’s unknown if this was a deformity Owen had from birth, or it was caused by the virus that attacked his intestines.  Most of the perforations were sewn up, however, a few were bigger and so the surgeon had to cut out a few small sections of bowel.  Seven weeks later, Owen went back into surgery to have his bowels reattached.

After Owen started making bowel movements, he begin getting breast milk feedings.  It started at something like 1 mL an hour and slowly moved up.  At first, Owen exceeded everyone’s expectations and he was able to increase his volume daily.  However, he reached a point, where he could not take an increase for several days.  Interestingly, this change occurred at the same time that my breast milk ran out and he was switched to formula.  At the same time, Owen developed severe reflux, a raw bottom and a reputation of being high maintenance.

Eventually, Owen stopped breathing and dropped his heart rate two days in a row with feedings.  I was there for both.  I demanded that they stop feeding him until a solution was determined.  He was switched back to donor breast milk and his feeding tube was moved down past his stomach into his jejunum to help make reflux less severe.  We slowly ramped up on his breast milk volume (with me deciding when and by how much) and waited until his lungs had recovered enough to do a Nissen surgery to more permanently prevent reflux and to give Owen his g-tube.  The surgery did wonders for Owen, he came home from the NICU 3 weeks later, at six months old.

Compared to the issues in the NICU, his GI issues were relatively under control for the next year.  Whenever we were admitted to the hospital the nutritionist would want to increase his feedings and then we had issues with dumping (yes, that is a medical term) where Owen would barely process his food and send it out the other end in liquid form (sorry if you’re eating lunch).  I got good at managing how much he could tolerate at a time and the doctors allowed me to control how much we changed, as long as I was willing to keep inching towards the nutritionists targets.  When dumping wasn’t an issue, Owen struggled with constipation in that he cried every time he pooped, however, he pooped daily and was very sensitive to miralax or pear juice being causing diarrhea, so we just kind of lived with it.  He was growing well and happy except for his 1-2 poops each day.  At the same time it was a careful balancing act and everyone knew that I was the supreme ruler on all things feeding.

This last fall, Owen became mobile and started eating orally at the same time.  As he at orally, I backed off on his tube feedings a little.  Not surprisingly, he lost weight.  However, being a former micro preemie, weight loss is taken very seriously, so his calories were slowly increased with the addition of Pediasure to his diet.  The NP in the NICU F/U clinic and I managed his diet increases together, but it seemed no matter how slow we went, we struggled to keep him from retching.  With her monitoring, I tried slowing down how quickly he got his foods, when he got his foods, what mixture of Pediasure and regular formula he got; we tweaked and tweaked, but couldn’t get him comfortable.  By retching, I don’t mean a little coughing.  I mean violent, eyes bugging out, body convulsions that would last several minutes at a time.  I felt like I was forcing food into him and several days made the decision to back off on how much he got because I didn’t want him retching.  As a result, we were constantly playing the “weight game”.  I knew why he wasn’t gaining weight; I wasn’t giving him all his calories because it was making him miserable.  Also, during all of this time, Owen stopped eating orally.  He went from 300-400 calories a day to nothing and it all started when we introduced the Pediasure.  I reached the point that my knowing Owen best was no longer working.  I asked for a GI referral.

GI Consult:  By the time we got into GI, I had it to the point that Owen was “only” retching once a day.  The GI doctor had never seen quite the combination or technique in giving him his food that I used, but it’s the best that we had.  And it was “working” in that his growth was looking pretty good.  Last week Owen was 22.5 lbs and a little over 32 inches.  That means he’s gained about two pounds since December.

I was relieved to hear that the doctor wants to come up with a solution that isn’t “Mom slowly tweaking”.  It shouldn’t be this difficult.

The doctor suspects that Owen has an allergy to the formula.  Even though Owen has had a blood test that didn’t indicate a milk protein allergy, he said it could still be milk that’s causing the problems.  Or, it could be some other ingredient in formula.  The problems are worse with Pediasure, but he still had severe eczema and constipation with the other formulas.  In terms of ingredients, Pediasure and Neosure, that Owen had been on previously, aren’t that different except that Pediasure is shelf stable and 30 calories per ounce and Neosure is a powder and we mixed it at 24 calories per ounce.  He suspects there may be a preservative that is causing further irritation for Owen with the Pediasure.  While it could also be the greater calories, the doctor is less inclined to believe that’s the problem because Owen had much denser calories with purees and that didn’t cause him issues.

Our Plan:  We will give Owen one month on Elecare Jr, a formula that is hypoallergenic.  He will not eat any other foods during this time.  If he improves; eczema, stooling and retching, then we will slowly add in foods.  We go back in one month to plan the next steps.  If things clear up nicely, we will hopefully avoid an endoscopy.  If there are still questions, we will probably schedule that procedure in the coming weeks.

Four days of the new formula in, Owen still has some retching but it’s less severe when he does it.  Now it’s more the cough and less the convulsions and bugged eyes.  He also has diarrhea 1-2 times a day instead of constipation.  I’m giving that another week before I call the doctor, because most kids do have stool changes with food changes.  Eczema hasn’t changed dramatically for the better or worse.

Formula Cost:  Our insurance does not cover formula, however, because Elecare Jr is very expensive, they are reviewing his case and may cover it.  If we ordered his formula through our medical equipment supplier, it would cost $1800 a month!  There are no stores in the metro that carry Elecare Jr (infant is available at select Walgreens), so I am ordering it through Amazon.com for a little more than $20 per can.  He goes through 18 cans a month!  Pediasure suddenly feels inexpensive!  For perspective, here’s a picture of the size of Elecare Jr can of formula next to a can of coke.

the size of a can of elecare Jr

Fingers crossed insurance will cover it!  More importantly, fingers crossed Owen is feeling more comfortable soon.

I know that’s a really dense post, so thanks to those that made it through.  However, I wanted to share, because I know we aren’t alone in these issues.  I’ll take advice from those ahead of us on this stuff too!

 

Feeding Disorder versus Picky Eater

A lot of people, myself included, have a really hard time understanding Owen’s feeding issues. Just before sitting down to write this post, I was catching up on Pinterest and salivating at all the delicious pictures a friend was posting. It’s hard for me to fathom that seeing food does not trigger a hunger response in Owen. Not only does the image of food not do it for him, neither do hours and hours of an empty stomach. If hunger registers in Owen’s brain, I’ve not seen him express it through a behavior change.

There are often two responses that people have regarding Owen’s eating.

  1. When he’s hungry enough, he’ll eat OR
  2. He’s just picky (or stubborn)

In fact, those two statements describe picky eaters. Picky eaters will eat take in adequate nutrition and continue to thrive while being selective with their food choices. In general, picky eaters will not tire of their favorite food choices and can learn to broaden their selections.

What Owen has is a feeding disorder. Feeding disorders, not to be confused with an eating disorder (anorexia or bulimia), is a term used to describe children who have difficulty consuming adequate nutrition by mouth. Feeding disorders can be very severe leading to failure to thrive, chronic illness and, in the most severe cases, death. Even when hungry, Children with feeding disorders may not consume enough to thrive.

According to this, often sited, 2000 paper for Journal of Clinical Gastroenterology, by Manikam, Ramasamy Ph.D.; Perman, Jay A. M.D., feeding disorders are, in fact, very prevalent As many as 25% of children have some degree of a feeding disorder. When you just count those who are developmentally delayed the number jumps to 80%!

Feeding disorders are multifaceted and often include medical, behavioral, psychological and environmental aspects. They can be found in healthy children, but the healthy cases are more likely to be temporary and environmental in nature. More frequently, and often more severely, feeding disorders are found in children with digestive disorders or those with special needs.

I really like the way this Journal of Pediatric Psychology article from 2007 breaks eating disorders into three, easy to understand categories; tube dependent, liquid dependent and food selective. Clearly as a parent who makes a conscious effort to not be stressed about Owen’s eating (or lack of), I was interested to see that, according to this study, intensive (extended in-patient, multidisciplinary treatment) has the best outcomes and the least stress for parents.

Honestly, Owen’s feeding disorder, is one of my biggest forms of stress in his care. While, I wouldn’t wish any type of disorder on him, physical and cognitive disabilities are easier for the rest of the world to accept. Eating and enjoying food is often the backbone of culture. I want for my son to be able to participate in his environment with food, and I do believe he can and will. However, getting there is really frustrating – especially when you add in his wheat, egg and peanut allergies. I basically am throwing darts blind folded looking for foods he will eat and then when we find one, he eats only that for a while and then gets sick of it, or starts teething or has some other disruption and then we start all over. It is costly and is very, very time-consuming and in reality, all the work may just be a band-aid to get us to the point when he’s ready for an inpatient program.

So, please, when you look at Owen, don’t think he’s being picky or stubborn. While not a perfect comparison, nobody would ever say Owen is still on oxygen because he’s too stubborn to breathe without support. We all understand that his multiple lung and airway disorders are working together making it difficult for him to fully wean from oxygen. His eating is similar, this is a medical disorder that involves many facets of his development. Just like he will one day be off oxygen, I know he’ll one day be done with his feeding tube. But it does take time. Sometimes seemingly excruciating amounts of time.

In the meantime, we keep working on it. Here he is checking out a strawberry, with a little apprehension.

Click to Pin on Pinterest

Click to Pin on Pinterest