Thursday, May 5, 2016

"Tubie" care crash course #2

Our son was tested for gastric emptying and he was fortunate that this was normal and that he could tolerate his feed so a G-tube was recommended after only 5 days with an NG tube (one down the nose into the stomach). 
 So our surgery was a hopefully one time thing and we are able to change his "button" ourselves with little difficulty. We have the Mickey style, low profile, 14mm French. It's important to learn the tube length(for us 1.2), width (14mm) and style (French). This makes it easier to get the supplies needed. Your surgeon or GI can also measure the length of tube needed as you go because it will change as the child grows. Too tight and it can become painful and inflamed or cause granulation tissue (will talk more about this in other posts) the Bain of every tubies existence.
Terminology is so important in the Tubie world and this list of vocabulary comes from the Feeding Tube Awareness foundation website.
Terms to know:
Flush: Administering water into the feeding tube, usually with a syringe, to clear food, formula or medication, and to keep it from clogging. The amount of the flush is dependent on the length of the tube, but is usually between 10–20mL (about half an ounce) of water.
Bolus Feed: A tube feed that is given like a meal. Typically, a larger amount is given in a short period of time, usually less than 30 minutes. There is often a break, lasting hours between feeds. Bolus feeds can be administered by syringe, gravity bags or a feeding pump. They can be pushed in by syringe or the pump– or allowed to flow in at a comfortable rate by gravity.
Continuous Feed: A tube feed that is slowly dripped in using a feeding pump. It runs over longer periods of time, either overnight or for many hours per day.
Vent/Venting: Letting the air out of the stomach with a feeding tube, usually through an open 60mL syringe.
Feeding Tolerance and Intolerance: How a child reacts to tube feeds. If a child seems happy or content during and after feeding, he is tolerating feeds well. If there is discomfort, coughing, vomiting or retching during or after feedings, then there is feeding intolerance.
Motility/Dysmotility: Motility is how food and liquids move through the GI tract. If there is a motility issue, referred to as dysmotility, then food isn’t moving through as it should. There can be dysmotility at any point in the GI tract, from the esophagus all the way to the stomach, intestines and bowels.
Stoma: The stoma is the tube site itself (for G-, GJ- and J-tubes). It is the opening that connects the feeding tube on the outside of the body to the stomach or intestine on the inside.
PEG: PEG specifically describes a long G-tube placed by endoscopy, and stands for percutaneous endoscopic gastrostomy. Sometimes the term PEG is used to describe all G-tubes.
Types of feeding tubes:
Nasal Tubes:
Nasal tubes are non-surgical and temporary. The choice between nasogastric (NG), nasoduodenal (ND) and nasojejunal (NJ) depends on whether your child can tolerate feeding into the stomach or not.
  • NG-tubes enter the body through the nose and run down the esophagus into the stomach.
  • ND-tubes are similar to NG-tubes, but they go through the stomach and end in the first portion of the small intestine (duodenum).
  • NJ-tubes extend even further to the second portion of the small intestine (jejunum). Bypassing the stomach can be beneficial for those whose stomachs don’t empty well, who have chronic vomiting, or who inhale or aspirate stomach contents into the lungs.
Gastric Tubes (or G-tubes):
The most common type of feeding tube is the gastrostomy (G) tube. G-tubes are surgically placed through the abdominal wall into the stomach.
There are a number of types of G-tubes. Any kind of G-tube can be placed initially. Often it is the surgeon or the gastroenterologist who determines the first type of G-tube placed. These are some of the most common types of G-tubes you may encounter.
  • PEG and Long Tubes: These are one-piece tubes held in place either by a retention balloon or by a bumper. They are often used as the initial G-tube for the first 8-12 weeks post-surgery.
  • Low Profile Tubes or Buttons: These tubes do not have a long tube permanently attached outside the stomach.  Instead, they have a tube called an extension set that is attached for feeding or medication administration and then disconnected when not in use. When an extension set is not attached to the button, it lies fairly flat against the body. There are two types:
    • Balloon buttons:  These are held in place by a water filled balloon. These are the most common G-tubes used in children. They can be changed at home.
    • Non-balloon buttons: Non-balloon buttons are harder to pull out than balloon buttons.  Non-balloon buttons cannot be replaced at home. They are placed in the doctor’s office or at the hospital, sometimes with sedation or a topical pain reliever.
GJ-tubes:
When you need to bypass the stomach for feeding, there is the Gastro-jejunal (GJ) tube. GJ-tubes are placed in the stomach just like G-tubes, but inside the stomach there is also a thin, long tube threaded into the jejunal (J) portion of the small intestine. The vast majority of children who get GJ feeding tubes begin with G-tubes; it is rare for a GJ-tube to be placed initially. Most GJ-tubes have separate ports to access both the stomach (G port) and the small intestine (J port), though some tubes, often called Transjejunal (TJ) tubes, only allow access to the small intestine. GJ-tubes are available both as buttons or long tubes.
Jejunal (J) Tubes:
It is sometimes necessary to place a separate J-tube that has a stoma (tube site) directly to the intestine. This is not usually an initial feeding tube placement for a child.

I hope this was informative and for more information check out feedingtubeawareness.org or check them out on Facebook. 
More to come...

"Tubie" care crash course

One of the things we constantly get asked about having a "tubie" is... "How do you do it all?" Quickly followed by "I wouldn't be able to do it!"
Well here is a quick list, if you answer yes to any of these then let me tell you a secret. YOU COULD DO THIS TOO.

1. Are you a functioning adult?
2. Are you capable of loving someone or something more than yourself?
3. Can you bathe yourself? Or Generally clean any skin surface to where you don't smell?
4. Can you do laundry?
5. Can you follow written and verbal instructions from medical professionals?
6. Do you feel you have common sense?

I think as parents we constantly compare our "skills" with other's and that's not right.
We don't have the magic formula or really anything special that others don't have.
We love our children and want them to thrive no matter what that looks like.

Now that we have that out of the way let me tell you more...
As a parent of a tubie you will need #'s for these things:

"DME"- that is shorthand for your supply company, find one that is good about 24/7 customer care and reliable on delivery schedule.

GI-  gastroenterologist is pretty much a given since sometimes the reason for a tube is malabsorption or reflux.

Genetic counsel- it's always good to try to get a clear picture of your child even down to DNA, sometimes it can definitively tell you what is wrong.

Pediatrician that is willing to "hear" you, not just go by facts and figures.

Speech/physical/occupational therapists- you may need 1, 2 or all 3 of these at any time in the tubie journey make sure they hear your concerns as well.

And possibly the hardest person to find, but really maybe the most valuable...a babysitter.

I am not joking or exaggerating in the least. Having one who is comfortable and capable with your tubie is hard to find. As a parent who is still in search of that elusive team member I dream of a time when my husband and I can just call someone and go be "us" for as long gone as we need as often as needed.
Some families qualify for home health or some other assistance, but often that is not the case and the mental/physical exhaustion is inevitable.
Take heart if this is you...you are not alone. I pray that all of us find them soon.

Get involved on support sites, blogs, whatever social media platform you prefer should have them. It's a great resource for ideas or the chance to just vent frustration or share joy in what new things are happening. Sometimes only people who have been where you are or are currently going on the same journey will appreciate things the way you do.

I hope this has been helpful whether new to the tubie life or just curious. More to come...

Tuesday, May 3, 2016

On Mother's Day with children with special needs...

"...Bridge (subsitute your name here), this mom thing is crazy hard. And you're doing an amazing job..."
-"Mom's Night Out" the movie

     This quote is true for all mom's, but as a mom of 3 beautiful children and 2 of which have special needs it is something that hits home.
     I am not just "mom" or as my kids call me " Mom, mom, mom, mom." I am also...

A nurse.
An EMT.
An advocate.
A therapist.
A pharmacist.
A delivery driver.
A teacher.
A researcher.
A walking encyclopedia of my kid's medical history.
A cheerleader, and thier #1 fan.
And so many more...

And the unique difficulties are...

    Watching with my heart in my throat as my baby has procedures done to try and help or diagnose the problem.
    Sat and waited, crying, through 3 surgeries in the last year on 2 of our kids.
    Chronic exhaustion is my constant companion.
    Felt persecuted and lied to by medical/hospital staff.
     Had to defend the steps we've taken to help and keep these children safe or to find out what's really wrong.

And yet, somehow in spite of these things I am constantly in awe.
That God gave me these specific children's, equipped me in ways I didn't even think we're possible to keep them safe.
    
    I am blessed by all the things I've been able to witness...
    At times, and too many to count in 3 years, I've never been more scared and yet have been successful in removing a lodged piece of food and got them breathing again.
    I've met amazing therapists, in a town where I have doubts about the quality of medical care. Who love my kids, listen when I tell them what's going on and help teach us and them how to progress.
    I love hearing from the therapists when they meet a goal, and that "whatever you are doing at home keep it up!"
    I can see a 10lb weight gain in my child recently labeled as failure to thrive.
   I am seeing my son "running" after his sister's when just a month ago we weren't sure he would even be able to walk unassisted by his 2nd Birthday.
    I've heard my daughter tell me "mama you duh bes evah!" When 6 months ago you struggled to understand her sentences.
    Seeing the space between pediatric and gastroenterologist appointments get longer and longer.
    Watching my children meet "normal age appropriate" milestones on time despite the other body systems being delayed.
    My son taking sips in succession from a sippy cup without choking for the first time at 22 months old.
    And seeing them inspire others to try harder or do better.
    I don't always feel like a good mom or that I make much of a difference.
    I am better at being alone and crocheting when I have down time then to make plans and do something with others.
    I am strangely uncomfortable being praised for working to provide for my family, running kids to therapies or doctor's appointments, or in general taking care of thier needs because that is what I am supposed to do. I wanted these babies.

"For this child I prayed; and the Lord hath given me my petition which I asked of him..."
1 Samuel 1:27

    I don't need fanfare or a special day to honor the things I do as a mom. My children are worth all of it. My journey as a special needs mom won't be done any time soon, thier struggles are not yet done and may never fully go away.  No matter the outcome, my job as mom will always be to love them, cheer them on in thier progress, and push them to exceed espectations.
     I hope that all 3 of them will look back and remember I advocated for them without ceasing and was so proud to be thier mom.