Advertisements

Feeding Tubes and Swimming

Feeding Tubes and Swimming

It’s a common question. “My child has a surgically placed feeding tube. Can they go in the water?” To answer there’s some context required so it’s best to consult with your physician. This is especially true if the tube site is less than 6 months old. Assuming the tube site has completely healed from the surgery and the stoma is well established, the rest of the post applies to you.

If your child gets in the water and the water goes through his stoma it lands in his stomach which is the exact same place it would end up with any other child. There are plenty of places where swimming is simply a bad idea. Lakes can grow many different types of bacteria which can make you sick. If you’ve been swimming in a lake your whole life you’ve probably already been exposed to whatever is in it and it’s unlikely you’ll get sick. A child who has never swum there before might get very sick from that same bacteria.

Continue reading

Advertisements

Cleaning the Inside of Your Vehicle

Cleaning the Inside of Your Vehicle

It’s pretty common to see parents of kids who vomit frequently in the car armed with a bottle or canister of scent removal spray. After all, we spend so much time cleaning everything else it’s sometimes tough to justify spending a whole lot of time cleaning one of the places we spend the least amount of time. You spray the right product and the smell goes away. Everyone’s happy!

Every once in a while, it’s good to get in there and really clean up all of the things that didn’t quite get clean when you wiped them down with a rag right after the vomit episode. There are also ways to protect your vehicle and make it so most of the mess can be drug out of the car and banished with a hose. Let’s talk about those first because, frankly, preventing a tough mess in the first place is really the only way things are going to stay somewhat clean.

  1. Auto Seat Protector – This handy device will sit under the car seat and make sure any vomit which overflows from the car seat’s undercarriage won’t lie around and keep the seat underneath wet. Yes, some of them will claim to completely protect your car’s interior. For most children this is probably true. Our son overflows ours from time to time.
  2. Rubber Floor Mats – These are a must have for many, many situations. We have the heavy-duty grooved rubber mats which cover a wider area than your traditional cloth mats. We use them to pile soiled clothes, diapers, and rags until we can get home. This keeps the soiled cloth from seeping out into the vehicle’s upholstery.
  3. Car Seat with a Machine Washable Liner – Not all car seats have this feature. I consider it a must have since children make messes regardless of whether or not there are medical reasons involved. Our He machine does an excellent job of scrubbing our seat’s liner as long as it’s pressed down into the bottom so the water will cover it. You’ll need to wash after you’re in for the day. I’ve yet to find a car seat liner which permits machine drying.

Continue reading

Car Rides with Vomiters

Car Rides with Vomiters

There are a lot of kids who vomit in the car and it’s mostly an annoyance. For our son with Noonan’s Syndrome every bit of food counts. He has difficulty gaining weight under normal circumstances and getting car sick makes it that much worse. If you find yourself thinking, “It’s not that big of a deal,” please remember it is a big deal for our son.

One of the first things we were told to do with our son to soothe him was to toss him in a car seat and drive him around. Our first pediatrician even recommended sleeping in a car seat as a way to lessen the discomfort of his reflux. We did try these things before writing them off but they weren’t helpful for us. The angle of the car seat seemed to guarantee our son would puke all over himself, in the car or out of it.

Continue reading

Life with a Tubie

Life with a Tubie

In honor of Feeding Tube Awareness Week, I thought it would be interesting to share what it’s like to have a child with a feeding tube. Yes, there are differences in how we do things sometimes but not as many as you might think. Not every family’s experience is the same so there may be some significant differences between our routine and someone else’s.

The first thing we do when our son wakes up is feed him. We have a schedule but it’s flexible enough we don’t need to wake him earlier than he’s ready to get up. He still drinks from a bottle even though he’s almost 2 years old because, typically, kids drink less when they transition from a bottle. Once he’s eaten as much as he wants we vent the air out of his tube. After, we feed him the rest of his food by gravity. We attach a syringe to his feeding tube without the plunger and pour his formula into the syringe. We allow his stomach to accept the food at whatever rate it’s comfortable and read books while he’s being fed. For most of this process, he sits or lays in my lap. We read two to three books during the remainder of the feeding keeping him relaxed and comfortable. We repeat the feeding process every three to four hours.

Continue reading

Noonan Syndrome Awareness Month

Noonan Syndrome Awareness Month

February is Noonan Syndrome awareness month, so I would like to share some information about the condition I’ve learned through my journey with our son. It’s a genetic diagnosis. Our son was diagnosed in late 2015 through whole exome sequencing. There are characteristic facial features for Noonan Syndrome and a large head size is common.

Many children with Noonan Syndrome need feeding tubes. Even if a feeding tube isn’t necessary they’re likely to need some kind of high-calorie drink or formula to supplement their diet so they can gain weight. Those with feeding tubes do have a reasonably high chance of outgrowing the need for one if they do not have an oral aversion.

Continue reading

The Agony of Waiting

We’re waiting on exome sequencing results to come back for our son. They’re scheduled to come back early October. We’ve been waiting 12 weeks just for this test. We were waiting a little over a year for them to agree to run the exome sequencing because every other diagnosis had to be ruled out first. Depending on the test results, each specialist will make their recommendations. They’ve given no hint as to what they will recommend. They can’t, because we have no idea whether or not we’ll get a diagnosis much less what the diagnosis would even be.

Continue reading

Mistakes and Five Tips to Avoid them or Minimize their Impact

Mistakes and Five Tips to Avoid them or Minimize their Impact

Everyone makes mistakes, and we all know that. We’ve been told a million times, “everyone makes mistakes, don’t beat yourself up over it.” That doesn’t quite help at the moment though, because the stakes are a bit higher than they’ve been in the past.

Forgot to turn on the pump last night? That’s less calories a continuously fed child is going to get, and it’s not hard to do. Even more common, your child rolls just the wrong way and disconnects himself from the pump. He doesn’t wake up because he’s exhausted, and you have no idea. When one of you finally wakes up, the bed has gotten all of the feeding and some stomach acid. You try to prevent it, but nothing is fool-proof. Besides, you can’t connect it too tight because it needs to release if your child gets tangled in the tubing!

Continue reading

Undiagnosed

Undiagnosed

I have a love hate relationship with our son being undiagnosed. On one hand it allows me to be confident whatever he’s struggling with is not on the list of common issues with a poor prognosis. On the other, there’s no specific medical term to tell people when they ask why he has a feeding tube, low muscle tone, and random spells of fever for no obvious reason. I have met other mothers who have children with similar problems in online support groups, but most people have never heard of the combination of symptoms we’re dealing with.

Continue reading

What to Expect Before and After Your Child’s G-Tube Surgery

What to Expect Before and After Your Child’s G-Tube Surgery

Everyone’s experience is slightly different. Expect there to be some variation between your experiences and mine. Please, do not take any information in this post as medical advice. Any suggestions are simply that. Please do not take anything written here as reason to go against orders of your child’s doctor or nurse.

Before you leave home, I recommend taking the following with you:

  • Any medical supplies your child may need in case of an emergency on the way to the hospital.
  • Two days worth of clothes, and anything else you want to bring to stay the night. If there’s any concern about whether or not your child is developing an infection they may not discharge you after the first night.
  • A can of formula if your child is on something uncommon. If you can’t walk into your local grocery store and buy it, the hospital may not have it either.
  • Familiar cups / bottles / etc.

When you arrive at the hospital you’ll sign in and be invited to have a seat in the waiting room. The time of your surgery depends upon the age of your child. The youngest go in earliest in the morning. They’ll call you back when they’re ready to start with the paperwork and introductions.

Continue reading

Why My Child Doesn’t “Look” Like They have Special Needs

I love this! It’s so well explained. I’m frequently in this situation with my son since he mostly struggles with eating and gaining weight. It’s not obvious to strangers he has a feeding tube, and his therapy has significantly lessened the harmful effects of his hypotonia.

Special Needs parents often get many comments about why their children “look” fine. Here is my answer to why that is for my children and many others.

Source: Why My Child Doesn’t “Look” Like They have Special Needs

%d bloggers like this: