Button Me Up!

There are lots of types of g-tubes out there and I am not going to pretend to know what they all are.  I am just going to give you the run-down of the ones we have used.

James had g-tube surgery at 2 months of age.  Surgery was successful, we prepared to be discharged from the hospital after a month, and were so looking forward to taking our child home.  James initially had a Mic-Key button but, the night before discharge, something went terribly wrong.  We still don't entirely know what happened, but his tube came out.  It looked like, somehow, the balloon had slit down the side and, when James' hand knocked against it, it just came out.  The nurses did everything right until the surgeon could handle it in the morning, but to no avail.  The hole was so new that it was impossible to get the button back in the right place.  It was sending liquid into the stomach cavity instead of the stomach itself.  Don't worry, this isn't a normal occurrence, just a freak accident I guess.  Moral of the story, just check the integrity of the balloon with an external inflation before placing it in the stomach.  So, we went back in for emergency surgery.  This time, in with a PEG (I believe that is what it was called), instead of a button.  Now, a year later, James has a Mini-One button.  Here we go:

PEG

This is a PEG, deemed an "old-fashioned" g-tube by our nurses and doctors.  Apparently, they are not used often.  James received this type after the original button came out as its exit ripped the stomach tissue and this tube has a more secure balloon.  The balloon is slightly flatter than the Mic-key's.

Advantages:

1. Security - We, of course, we paranoid about this coming out, but in the six months he had it we didn't have an issue. 

2. Ease of use - This one doesn't have a clamp and neither did ours, but I have seen some that do.  I liked the lack of clamp as (sometimes) it is just as easy or easier to clamp it by bending the tubing in half.  It was also extremely easy to use when out and about because you don't need to worry about attaching a tube extension and it was long enough to fit through the bottom buttons on onesies to keep it away from little hands.  

3. Sizing/Cleanliness - This device is all one tube, you just move the circular stopper to the point where it keeps the button close against the stomach wall.  This is nice because you don't have to change the tube as your child grows, you just give the tube a little more slack.  This also makes the stoma area much easier to clean as you can easily move the stopper to get to the skin.

Disadvantages:

1. Sizing - One MAJOR problem we did have with this tube was the ability to change the length of the tubing.  As James began to roll, the tube would get knocked all over the place.  One day, while he was playing, the tube must have loosened and the balloon moved farther into his stomach.  The balloon ended up lodged in the valve between his stomach and large intestine.  This caused mysterious vomiting which sent us to the ER, but was a VERY easy fix as all we had to do was deflate the balloon a bit and pull it back to the right length.

2. Mobility - This tube is not great for more mobile children.  It is much more obtrusive than a button.  The tubing tends to stick up more than button extensions, making daily activities (tummy time, physical therapy, rolling, etc.) more difficult and uncomfortable.  

3. Child's Curiosity - There is a tube there all the time.  You, the parent, have to be vigilant about tucking the the tubing away from your child's hands.  Bath time can be difficult.

Mic-Key Button

After the balloon-stuck-in-valve incident we elected to get James a button so that the balloon would stay securely against his stomach wall and it would be easier for him to move about.  We had a Mic-Key button which we didn't love.  Here is what we found:

Advantages:

1. Size - MUCH less obtrusive than the PEG. 

2. Tubing - The Mic-Key tubing is detachable, called an "extension."  It is wonderful to take this out when James is not eating because it is one less thing for him to pull around and it is less strain on the skin around the tube as there is no tubing to "stretch" it out.  Also, he couldn't pull on the g-tube the way he could with the PEG (it was a favorite pastime of his).

Disadvantages:

1. Balloon - We couldn't get James' button to stop leaking.  We even filled the balloon more than the recommended size to see if that would help.  It didn't.  The issue is, the Mic-key balloon is round.  That would seem to make sense except, you put a round balloon in a flat hole and you get gaps.  This was a huge factor for us in getting rid of the Mic-key.

Mini-One Button

This is the next and final button we chose for James.  We love this one!  See how the balloon is flatter at the top?  No gaps!  This button is even small than the Mic-key so take the advantages of the Mic-key, add a smaller button with little or no leaking, and you get a great button!  It does have a disadvantage:

Disadvantage:

1. Size - The button is so small that it can be difficult to grasp when inserting the extension or inflating/deflating the balloon.  We haven't had any major issues with it and my husband has huge hands, but it could be a deal-breaker for some.

What have you liked/disliked about your specific button?  Any suggestions?  Feel free to comment!

Today We Returned Our Pump

Today was a great day for the Pilegaard family.  We returned James' feeding pump!  James has had a feeding pump since October 2011 on his discharge from g-tube placement.  Back then, it was a lifesaver.  We had been doing bolus feeds through NG tube around the clock.  It was exhausting.  We would wake up every three hours and feed James in a syringe via gravity over about half an hour.  When we ended up back in the hospital and the nurses took over it was a lifesaver!  We didn't like being in the hospital, of course, but it was the first time we had a full night's sleep in a month.  I think the first night we both slept for about nine hours.  Now, for many reasons, we prefer to use syringes.  Here are the good and bad for each:

Pump Pros:

1. Ease of use
Especially for nighttime feeds, the pump is an answer to prayer!  Parents can wake up, plug the line into the g-tube, push start, and go back to sleep.  Wonderful!  Also great for longer car rides when it would be very difficult to do syringe feeds without stopping for an extended period of time.
2. Singularity
The feed bags that connect to the pumps are good for 24 hours before you have to worry about bacteria build up.  That means, if you want to, you could technically put all of your child's food into the bag in the morning, program the pump for how much you want for each feed, and you are done with food for the day! (Although, disclaimer, this is not recommended.  We, however, would do this because every time we tried to prime our pump with water to clean it between feeds our bags would break.  We decided that we would rather have bags that work.)
3. Portability
Because you can put larger amounts of food in the enteral bag it is easy to carry around your child's nutrients for the day.  Ours would easily fit in our diaper bag even when the bag was full.  No coolers to worry about!
4. Calorie Counting
The pumps are programmable to dispense the exact amount of liquid you need to get into your child's belly.  It is much easier to measure calories when you know your child is getting every last drop!
5. Continuous Feeds
If your child needs to be on continuous feeds this is probably the only way to go but I could be wrong.

Pump Cons:

1. Blended Foods?
It is much more difficult to do blenderized diets through the pump.  We had a Kangaroo Joey and didn't even think of putting James' blended food in it.  Some people have managed this feat but it takes a lot of straining, resetting the pump, and patience.  Some pumps out there are better quality and can handle it but may not be covered by insurance.
2. Leash
If your child is very mobile, the pump may not be for you.  James is rolling all over the place (and will, hopefully, be crawling soon) and the pump line became dangerous.  I had to be close at hand in case he managed to wrap himself up during his hour-long feed.  It was also very easy for him to pull the pump line out of his tube extension, leaving us with a mess.
3. Hanging Bag
Sometimes it can be hard to find a place to hang the feed bag when you are not around an IV pole.  We have come up with many ingenious ways to fix this problem (those infant ring links are a life-saver), but it isn't easy!
4. Hunger Association
When the machine comes out, your child sees it, and soon after feels full, it is hard to motivate oral eating.  Your child is thinking, "But mom, that thing makes me feels better, why would I use my mouth when I don't want to?"  This can happen with the syringe too, but the machine is visible for the entire feed whereas, if you are using a plunger syringe gradually over a period of time, the child only sees the syringe every so often.  If you are using a pump try to hide it out of sight (hung behind your child) so you can work on oral skills and hunger association.  Keeping it out of sight will be more difficult as your child gets older and more mobile.
5. Connection
We have had a very difficult time with the connection between the tube extension and the machine tubing.  The extension port would stretch over time and we would need to use "no more pull-outs" which worked sometimes and other times would need to tape the tubing together.  Not ideal.  We were, however, using a mix of syringe and pump which tends to stretch the port faster.

Syringe Pros:

1. Blended Diet!!!
This is a big deal to me.  Syringes are much more versatile when it comes to foods other than formula and breastmilk.  Syringes with plungers that push the food into the tube work great for the thicker blended meals.  We give James his feed over an hour (as we would with the pump) but we give him one ounce through the tube every ten minutes.
2. Leash
No leash for your child to get caught up in!  I like for James to be able to move around and enjoy himself during the four hours out of the day that he is eating.
3. Normalcy
Your child will not be hooked up to a pump.  Isn't it nice to give your child as normal a life as possible? :D
4. Cheaper
I need to check our bills but I am guessing it will be cheaper to get 2 syringes per day than to rent the pump and pole and buy bags each month.  This, obviously, is not a reason to change methods unless it will be beneficial for other reasons as well.

Syringe Cons:

1. Messy
Filling the syringes with thicker liquids can get very messy!  The pressure and dexterity it takes to work out the air bubbles is difficult to gauge.  I have, more than once, ended up with goo all over me or the ceiling or both.
2. Portability
Syringes are by far harder to port around.  Most times we carry around a half-pint mason jar (available at Target) filled with James' meal and refill the syringe as necessary.  But, as noted above, this can be dangerous, and much more so in public than in the privacy of our own home.  We also have to make sure we carry around good hand sanitizer to keep James' meals germ-free.  Some syringe brands have caps on them so that you can fill everything at home and uncap and go as needed on the road.  I believe the BD brand has this.
3. Car Rides
This is where it gets tricky.  If you are squirting a certain amount of food into the g-tube every ten minutes longer car rides can be difficult.  You have to work feeds around car trips or stop every so often to refill.

My assessment of the situation is that the pump can be very convenient for younger, less mobile children on breatmilk or formula diets and/or continuous feeds.  Syringes, however, are better as the child become more mobile and/or takes a blended diet.

What has been your experience withe feeding pumps and syringes?  Do you have tricks up your sleeve that make one or the other easier to use for your child?

How to Choose (or Change) Your Child's GI Doctor

Choosing a doctor is difficult.  Choosing a doctor to monitor the hole in your child's stomach, the only way to guarantee he is getting sustenance, seems downright impossible.  We struggled with this very situation for months with our son, James, and have seen other parents go through the same ordeal.  So, why not tell you what we have found in our quest for the perfect gastroenterology doctor?

Qualities to look for in a GI doctor:

1. Willing to listen to you, the parent.

Mother knows best, right?  Unfortunately, many doctors are not willing to listen when a parent says that something is wrong.  We have experienced this firsthand too many times and this criteria is an absolute must if we are going to stay with a practice.  A good doctor will listen to what you have to say, considering you are the primary caregiver for your child, give you his two cents and develop a plan of action based on both your opinions.  The doctor should ask you if you are comfortable with this plan of action for your child and be willing to work with you if you feel the plan needs tweaking.

2. Treats your child with the respect he deserves.

When a doctor takes the time to talk to and play with my one-year-old I know that he just may have my son's best interests at heart.  We have nurses and doctors at our practice who treat my son like a rockstar and it is extremely comforting.  When a doctor doesn't acknowledge my son's presence I don't feel comfortable with the doctor's level of commitment to my child's care.  Your child is a person and deserves that respect.  However, you do have to give some doctors a little leeway on this one.  Everyone has bad days and different social skills so don't use this as a deal breaker on the first visit unless it is a major issue. 

3. Willing to think outside the box.

Again, this is a major complaint from most parents: "GI views my son/daughter as just another case and here is the remedy to treat it."  Each child is different and there will almost inevitably come a time when the normal route will not be the right solution for your child.  A GI doc who is willing to do what it takes to actually CURE the problem instead of keeping it at bay is certainly a keeper.  

4. Accessible.

This is not so big for some people, but I find it crucial.  Accessibility includes:

- short wait times at the office, especially considering you need appointments to work with your feeding routine

- access to the doctor, not just the nursing staff, via email and/or phone

- quick appointments in "emergency" situations

 and 

- "on-call" service.  

Our doctors, for example, are great at communicating directly with us via phone and email (I can actually call and get the doctor on the other line!).  They are also great at quickly working us into the schedule should something crazy, like a balloon malfunction, happen and we need to see them asap.  This also includes criteria number one ("willing to listen to you, the parent"), especially when you need to talk to the on-call doctor at one in the morning because your son is vomiting stomach acid, for instance. 

5. Encourages Oral Development.

A good GI doctor wants to be out of business.  He should encourage, even push oral stimulation and feeding as long as it is safe for your child.  

6.  Advocates for your Child.

Most likely, at some point, you will hit a wall with some insurance or government service and will need help from a doctor to get your child the support she needs.  Your doctor's help (advice, phone calls, letters) will make all the difference for you to overcome these complications.  In order for this criteria to be fulfilled, your doctor must have criteria two ("treats your child with the respect he deserves") and four ("accessible").

7. Does NOT Believe Formula is the Greatest Thing Since Sliced Bread.

Ok, that is kind of a joke, but really important.  Formula could be the right thing for your child, but many times it isn't.  Unfortunately, most GI doctors seem to think it is the only option.  It is easy for them to quantify the calories and nutrients your child receives with formula.  You need to find a doctor who is willing to try a blended diet should your child be unable to tolerate formulas or should you, as the parent, want to give your child real food.  

We have found these seven points extremely helpful in choosing our GI doctor and nutritionist.  We also think that our doctor should not use "trial and error" as a way to fix the problem, but sometimes that is unavoidable so I did not list it in the actual criteria.

*Don't forget that you are the parent and you can and should change doctors if you are not happy.*

How have you chosen your GI doctor?  What criteria do you have for your child's doctor?