14

Every year I find myself writing the same things about you on your birthday. I just get to add another year. Today you turn 14. You've given us another year of loving you. It's so hard to believe that you are turning into a young little man. We've had our frustrations of your mind being like a 6 month old's stuck in this 14 year old body that's the size of a 9 year old's body. It's all quite confusing. To us & to you.

But it's ok. Because we'll love you no matter what you're going through. I will go through the frustrating days with you while we wait for a day filled with laughter & giggles. You never disappoint. You always come back to your happy disposition even after days, and a few times after weeks, of crying & biting out of frustration. I know that always comes from the lack of communication that you're able to give us. But you always come back to happy.

Those happy times have been some of the happiest days of my life. I love your smile. I love your laugh. I love the few times that you've found the coordination to actually squeeze me to give me a hug. I love all of you. From the moon, to the stars, to the heavens above. Always & forever, buddy.

I make a big deal about your birthday every year. Even though you have no idea what's going on. Since you can't shout it from the roof tops that you're another year older, I'll do it for you.


Happy 14th, David Webb! You are one of my biggest blessings on this earth.

 

 

My First Guest Blog :)

Yesterday's kick off to Feeding Tube Awareness Week 2014 was all about David's journey with his tube and how it helps to sustain his quality of life. These feeding tubes are definitely life saving devices we are lucky to have.  Many people live their lives with feeding tubes. Including many adults. I've asked a friend of mine through Facebook to share her story with us. She has fought her own battles, but has continued to do things to help us with David. She loves her family, her dogs, her Facebook "tubie kids", and God. She inspires me with her journey. So here it is.

Natalie,

Thanks for allowing me to share my story on your blog.  And, without further ado, this is my story:

People of all ages may require a feeding tube at some point in their life.  There are too many reasons to count that would cause someone to need one.  Some use them for feeding.  Others use them for "venting."  They can be long tubes fed through one's nose down into their biliopancreatic limb as a means of nutrition.  They can also look like a big tangling rubber contraption hanging out of one's stomach or lower intestines.  They can also look like a little rubber plug in one's stomach or lower intestines.

Hi, my name is Melissa.  I became an adult "tubie" in August 2007, at the age of 33, following gastric bypass surgery that resulted in complications. I awoke from an induced coma and found a percutaneous endoscopic gastrostomy (PEG) tube sticking out of my stomach and I was on total parenteral nutrition (TPN) through a catheter.  The PEG was being used to drain bile from my remnant stomach which had become temporarily (we hoped) paralyzed.  I had developed two not-so-lovely ulcers in my newly created gastric pouch which left me unable to eat by mouth.  Being diabetic, I was given TPN to feed my body and continued insulin to regulate my blood sugar. I was hospitalized for five weeks before being discharged with home visiting nurse care.

Slowly over the next three months, my stomach began to wake up and the surgeon removed the PEG tube in his office.  Things resumed somewhat normally until March 2011 when I developed a grapefruit sized cyst in my right ovary which needed to be removed before it twisted and cut off blood supply.  Recovering from the oophorectomy, I became more and more nauseous and could keep nothing down.  We thought I may have adhesions (scar tissue) causing problems.  

I had surgery again in July 2011 to remove all abdominal adhesions.  Things seemed fine until I was placed on a clear liquid diet.  Again, sever nausea and vomiting.  I was rushed to radiology and the images showed that my stomach was so distended that the surgeon feared it would perforate.  It was paralyzed yet again.  The surgeon ordered an Interventional Radiologist to place another PEG tube.  Because of the gastric bypass surgery, my anatomy has been altered making it complicated to reach my stomach. Nonetheless, the PEG was in and all the contents drained out.

As time went on, we realized my stomach was not waking up.  I had several tests performed to where barium was fed through my PEG and I was tilted on a cold table back and forth and almost upside down trying to get the barium to empty my stomach to no avail.  I finally received the diagnosis of Severe Gastroparesis. 

To be honest, I have been exhibiting signs of Mitochondrial Disease (Mito) from the age of 20 when I was hospitalized with a perforated bowel due to Diverticulitis.  I was told then that "Diverticulitis couldn't be possible (despite a pathologist's report) because that is a disease for geriatric patients--not young people."  But hey, I was told it wasn't possible to have gastroparesis either because I had gastric bypass surgery.  But I do.  I have both diseases and they along with other side effects I have, read right out of the textbook for Mito. I have exhibited progressive gastrointestinal dysmotility, satiety, nausea, dysphagia (trouble swallowing food), gastroesophageal reflux, abdominal pain/distention, neuropathy leading into parethesias (tingling, numbness, and pain), symmetric and distal weakness. I've been told by one gastroenterologist that Mito is "rare."  Sadly, it is NOT rare. And, it's not just a childhood disease.

Since the placement of the PEG in 2011, I have switched over to a feeding tube button like my friend, David Watkins.  It is much more convenient for me and is less likely to get caught in my clothes, zippers, drawers, and door knobs.

Spread feeding tube awareness and always be your own advocate for better health. You cannot change what disease or syndrome is thrown your way, but you can control how you react to it.  Become a champion by learning all you can about it.  Sometimes, you may actually be educating hospital staff on how to better take care of you or a loved one.

Much love and blessings, Melissa

 

Feeding Tube Awareness Week

Today marks the first day of Feeding Tube Awareness Week 2014.  While there are so MANY reasons why people have feeding tubes (and so many different types of tubes), I wanted to begin with David's personal journey about his GTube.

I have to admit, I wasn't familiar at all with what a GTube was until about 8 months before David got his. I knew they existed, but never took the time to understand what they were or, more importantly, why they were used.

David's journey started just over 5 years ago in November of 2008.  He went in for a swallow study (a test where you are given barium to drink then they are able to watch your swallowing on an X-Ray type machine) that we suspected would be bad, but didn't expect it to be AWFUL. He showed silent aspiration (food going into the lungs, or more frequently known as "going down the wrong pipe") on every single consistency of food/liquid we attempted. As humans, we all occasionally aspirate. But most of the time, there is a choking or coughing spell that goes along with that. David had NO sign that was happening to him. This is probably why David was continually ill with pneumonia or other respiratory illness.

The speech therapist that performed the study, immediately pushed us into David getting a feeding tube ASAP. We were scared and weren't ready to jump into major surgery until we figured out if there were other options for David. Our pediatrician was kind enough to go over some other options with us and for the next 7 months we tried different ways to feed David, including pureeing ALL of his meals into a smooth, fine consistency and thickening all liquids until they could be spoon fed to him. Unfortunately, he continued to get sick. Not as much with pneumonia, but other respiratory problems were present.

On July 3, 2009, our pediatrician said she thought we gave it a good effort, but she thought it was time to proceed with a feeding tube placement for David's nutrition. After that, it was a whirlwind of meeting with the surgeon, finding a new GI, and scheduling pre-op appointments. Surgery was scheduled for August 4, 2009.

That day came so quickly. We were so nervous. The surgery lasted for about 4 hours. When he was finished, the surgeon said he did well. She had placed a PEG tube at first (a long tube we had to keep taped down while not in use so it didn't get pulled out) but informed us that he would be getting a "button" 8-12 weeks post-op. 

This surgery was supposed to be fairly uneventful. Of course, that's not how David thought it should go. After a set of collapsed lungs that sent him to the PICU for 2 days and a horrible reaction to the anesthesia, our supposed 2 day stay turned into and 8 day stay. But then we were finally allowed to start our journey at home. At first, I let Michael handle all the ins and outs of the tube. I was horribly intimidated by it. But knowing Michael had to eventually go back to work forced me to jump in and learn the process. What I found was......it was so easy! And I was so relieved to be able to have a safe way to feed my child.

About 4 weeks after the PEG tube placement, Michael was getting David ready for a bath. I was in the kitchen & I was hoping that what I'd heard Michael yell from the bathroom was that David's tooth fell out. I was praying he didn't say tube! But he had. We had been warned that with a new placement, that we only had about an hour before the hole closed up. It was panic mode at our house, grabbing the "button" the hospital sent home with us, finding a neighbor to drop Kyle off too, and heading to the nearest ER. Once there, it was apparent this wasn't something that the ER doctors were very experienced in doing. They tried to keep us waiting FOREVER while we panicked about his nutritional source closing up before our eyes.  After Michael pretty much threatened to place it himself right there in the waiting room did they finally take us seriously.  Using the directions from the Mic-Key button box, the ER doc was able to place the button and then we had to have an X-Ray done with contrast to check to make sure it was place properly. Thankfully, it was.

After all of that. we visited the surgery nurse the next week and received proper training about placement of the button and care for it.  The button needs to be changed out every 3 months at home, and we weren't aware of that.

Fast forward 4 1/2 years later.  Michael and I have become pros at this Gtube thing. We can feed him his formula one handed at this point.  He is able to eat every 3 hours during the day time, through gravity bolus feeds with a syringe.  We change his button with ease in the comfort of our own home. Kyle learned how to change the button himself. He can also feed David, although it's not something he's done frequently.

At times, I wish I had known how easy it would be after those initial few weeks. I think I may have considered it immediately after the swallow study. But I know in my heart, I also would've regretted not trying other feeding methods before the surgery. In the end it all worked. I'm happy to say that David has gone from having respiratory illness every month to much longer stretches between doctor visits. We had to take him in on Christmas Eve and our doctor came in shocked that we hadn't been there since APRIL......longest stretch EVER so far.

While there are some things that aren't so great with the tube (granulation tissue, leakage, etc.) we have figured much of that out & can often combat it at home before things get out of hand.  But the best thing about the tube? 100%- The quality of life it has given to David that I didn't even realize was possible 5 years ago. It makes it all worth it.