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

Doctor Google

I raise my hand.  Guilty!  I’m a huge Googler on all things medical.

Every medical professional will tell you, “Don’t Google this”…do they really think adults are any less tempted by the word “don’t” than a toddler?

For one thing, Doctor, if you spent more than 15 minutes with me, I may not need to Google it.  For another thing, Doctor, I need to both verbalize and see (read) information to best understand it.  Finally, Doctor, I’m a human.  I want to personalize the huge words, facts and statistics that you just gave to me.  How will my life be impacted outside of the clinic or the hospital? What are the questions, that I don’t even know to ask, that I should be asking?

While I can sing the praises of Google.  I do also understand the warnings.  For example, you may spend a little time on Google and suddenly become convinced that your  boyfriend (now husband) just gave you Chlamydia when you actually have a Bladder Infection.  You might even be so convinced that before you go to the doctor, you accuse your boyfriend (now husband) of giving you said STD.  It might be a little awkward, if you mess that up.  (No, of course, this is not a personal story, it’s just an example of what some random, irresponsible Googler might do.  Clearly, a very silly person).

Knowing that we all do it, here are my two rules for medical information and the internet.

  1. The internet is not for diagnosing:  
    1. Symptom Checker:  My earlier example should be the case in point enough, but let me belabor the point.  For the sake of an example, I just put in two lower abdomen symptoms;  Moderate, gradual discomfort and diarrhea   Guess how many possible conditions came back?  SEVENTY-NINE!  Just perusing the top 10 possible conditions, they ranged from menstrual cramps to rectal cancer.  Reading these things are just going to put you into a panic, when that may not be necessary.  If you’re worried enough to search it, just see the doctor.
    2. Social Media Forums:  I love my preemie and feeding tube groups as a place for support and camaraderie.  I ask questions like, “I’m considering a g-tube belt now that Owen’s more mobile.  Has anyone used them and with what result?”  or I might say, “Wow, Pediasure is expensive, any ideas of where to get it for the best price?” and I even might ask, “Owen’s PT  feels he might need a brace as he learns to walk.  We see the doctor next week.  Who has experienced braces and what questions would you suggest I ask as we make the plan?”  There are many times that other parents have great advice in these situations.  However,  I cringe every time I see someone go on a public forum with a list of 3-4 symptoms and ask a group what they think it may be.  And, then I cringe even more when people start answering with a diagnosis and a treatment.  NO,  NO. NO.  Unless your forum is your medical team that knows your complete history, they should not be diagnosing or treating you.  Remember, each person is unique in what symptoms they reveal and what medications work best to treat their symptoms.  Here’s an example; I know one preemie family that just stopped treating their child with oxygen as long as he keeps his oxygen saturation above 85 (pulmonary orders).  Owen’s pulmonary orders are to stay above 94 and I know that if he’s not above 96 that he’s sick and will go into distress if I don’t increase his support.  For Owen, 94 means I’m weighing the pros and cons of going to the doctor.  For the other family, 94 is a great day.  Both are preemies with severe BPD and assumed Asthma but they have completely different treatment because they respond differently to the treatment.
  2. Once you’ve seen your doctor and have a diagnosis, go to credible sources for further information. If you would not cite the source on a term paper it’s not credible.  Patient savvy doctors will tell you places to read more information, or might even print out some information for you.  If they don’t offer information, ask.  They owe you the ability to process and understand a diagnosis in the way that works best for your learning style.  You can also check out medical sites. Some of my favorites are:
    1. Mayo Clinic
    2. Medscape (emedicine)
    3. PubMed Heath
    4. MedlinePlus
I know those rules don’t seem very earth shattering, but I’m shocked how frequently I see them broken – especially on social forums.  Next time you see someone asking for a diagnosis on a social forum, please answer with something like, “Your doctor, or a nurse line would be the best place to get the answers that are specific to you. To get prepared for that doctor’s appointment, you might want to use this guide.”

 

Infographics to Share for Prematurity Awareness Month

To help share information on prematurity, I’ve been posting some infographics on Facebook, Twitter and Pinterest.  Please feel free to share with your community.

While you’re on Pinterest, check out the March of Dime’s Board.  It’s full of great information.

 

 

 

I’m planning on several more infographics.  If you’d like your child featured on one of them, please feel free to send a picture to me.  I could use 5-6 more.

Also, if you’re another blogger or preemie site that is sharing information for Prematurity Awareness…please, feel free to pimp your page!  Preemie Families Unite!

 

High Calorie Formula Mixing Cheat Sheet

So, I’m a day late with this post. I thought I’d have time Tuesday during Owen’s nap to finish up the post, but he had a couple of doctors appointments that went long and so he took his nap in my lap at the doctor’s office and I didn’t bring the computer with me. I’ll update on the appointments next week – but everything went well and Owen seems to be coughing less, so hopefully he’s heading in the right direction with his cold.

On to the post:

When Owen first came home from the hospital, I felt like I needed a chemistry degree to prepare his bottles for the day. He was on Neosure, which is a 22 calorie formula, but the doctors wanted me to make his 24 calorie formula. For Owen, the reason was to not give him too many fluids which can be hard on his lungs, but still give adequate nutrition so he could grow and thrive. By mixing his formula with more calories, it’s kind of like whole versus skim milk – he gets more calories for the same volume of milk.

Many, many preemies end up needing a higher calorie diet when they are discharged from the hospital. When your child is discharged from the hospital on a high calorie diet, you are sent home with a sheet of paper with mixing directions. The directions will say something like

“Mix 2 scoops of premature follow-up formula with 3 1/2 ounces (104 mL) of water.”

And chances are 3.5 ounces is not the size bottle your baby needs.

So then, sleep deprived mom or dad is left to do the math. Yes, it is very basic algebra, but isn’t it easier if the math is already done for you?

Well, I’ve done it and created an easy to use cheat sheet chart. Knowing that I’m not the only mom that hates figuring out how much water and how many scoops every time a change is made to my son’s diet, I figured I’d share the chart with all of you. Click on Powdered Formula Cheat Sheet to download or print the pdf.

In order to keep it simple, I don’t have every possible feeding scenario on this chart, so you may need to do some rounding, but it should get you close and it’s better than guessing.

Here’s how I use the cheat sheet to make a bottle for Owen who gets 190mL of Similac Advance mixed at 24 Calories

1) Similac Advance is a 20 calorie formula, so I go to the blue section of the chart that’s circled below.

2) I want to mix this formula into 24 calories per ounce, so I look for the 24 Calorie column in the blue section like circled below.

3) Owen’s feeds are 190 mL each, so I look for the closest number to 190, without going over, in the mL column as the arrow points out below.

**Note, the reason I didn’t choose 197 is because adding the formula will increase the volume, so by choosing 173, I won’t have as much waste.

4) I can now see that I should mix 173 mL (or just under 6 ounces) of water and 3.5 Scoops of Similac Advance to make Owen’s bottle.

Hopefully, you’ll find this chart helpful. If you have comments or suggestions to make it better, please let me know. I’m posting this one first, because it’s what I already use. However, if it’s a well liked tool, I’ll make similar charts for fortifying breast milk and using liquid formula concentrate in the future.

My disclaimers:
– I based the formulas on the cheat sheet off the mixing instructions found here
– You should double-check that the instructions your child’s doctor gave you align with this chart before using it. I’m only providing the math on the most commonly used instructions from the above site. Your instructions may be different, it’s up to you to verify.

How to change a g-tube

Had he not been hospitalized, Owen would have seen his surgeon on Monday to get a new g-tube button.  The buttons get replaced every 3-4 months and after the first couple changes, the parents do the changing.  So the outcome of the appointment was two-fold.  1) get a new button and 2) teach me how to replace it.  Since we couldn’t go see him, Dr. Hess came to see us in Owen’s room.

I was a little nervous to be messing with a hole (stoma is the medical term) going into his stomach, but have to admit it wasn’t that bad and was really surprised at how quickly it went. Owen didn’t seem to notice and the hole didn’t look that gross.  You can see the lesson for yourself (there is nothing too graphic but you will see me slide the button out of his stoma and then put a new one back in).

See, I told you this blog had more interesting stuff than CaringBridge!