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.

(Un) Parallel World

Do you ever feel like you're living in the same world as everyone else, yet it seems like you're on a different path?  That's how I feel sometimes.

Don't get me wrong. I'm happy with who we are and the path that we're on. But there are some days that I just want someone to say "I get it."  And actually get it.

I have great friends and great family. But sometimes I feel like I'm in this dream world while they're out there living in reality. I watch as they are out and about with their families enjoying the fall season (or whatever season we're in) and I am sometimes wishing that I can be in that reality too. Without having to worry about wheelchair accessibility. Or tube feedings. Or spitting/throwing up. Or where to change a 13 year old's diaper.

I guess I'm a little bit envious. Jealous. Whatever you want to call it. I am. I think it's perfectly natural to feel that way.

BUT......

I am also thankful.  In actuality, my dream world is OUR reality. And I love our life. The wheelchair. The tube feeds. The throwing up-not so much. The diapers.....sometimes. I have a glimpse of a different world that not too many get to see. I have met many families with many more obstacles to overcome. They are the ones who have walked in my shoes and truly "get it".  Social media can sometimes be my enemy, but through it I have been introduced to so many families with similar struggles and have come to care for so many kids (and their moms)  that I don't even personally know.  I WILL overcome the obstacles we have in order to provide my family a wonderful life. Because in the end that's what really matters. Them.

Where Did Summer Go?

I can't believe it's the end of the summer. Didn't school just let out?  We've already gotten our school supplies bought & kids are registered. I can't possibly have a second grader & an eighth grader (sort of).

I just figured out that I am THAT mom. The kind who has laid out plans in May for the absolute PERFECT summer. Play dates, pool time, vacation, zoo trips, day trips, & summer camp outs. Yea. Only about 25% of that actually became reality. Because life gets in the way. Work gets in the way. Weather gets in the way. We are all just people who do the best with what we've been given. Our kids don't think we're bad parents. If fact, if you can accomplish even 10% of your perfect world, they think we're pretty wonderful.

Try to remember it's not always the 'big' things that they look forward to. It's the small ones too. I'm sure Kyle & Michael formed some pretty awesome memories on their 6 mile bike rides together this year. And David will be happy with a big kiss and some tickle time.

I still have one last big hurrah planned for Kyle before school starts. Just an overnight trip with a good friend & her son. But to the boys going on the trip, they will think it's like a trip to Disney World.

I have to start remembering to live life knowing that sometimes all the big things in this world aren't so different from the little ones. Especially in the mind of children. To them, a memory is a memory. Big or small.

Brothers

"You know when you and daddy die, I will take really good care of David for you"~Kyle Matthew. July 23rd, 2013. Out of the clear blue while at work with me.

A moment in time that I won't quickly forget. Those words made my heart sink. They made my heart swell. They made my heart race.

No one ever wants to think of leaving their children alone in this world. Unfortunately, that's most often the case. It is nature. It sadly may not always be the case though.

We have no official diagnosis for David. Which means we really don't know what his future holds. He does have a weaker immune system & gets hit harder with most illnesses than a person with a normal immune system. While he could be taken from us before we leave this earth because of this, he could also live a very long life long after we're gone. I've seen him when he's sick. He's a fighter.

Either situation makes me sad. I will always keep David in my care for as long as I possibly can handle him. I know that Michael & I know him so well & can give him the best care as long as he is with us. It's because we love him so much. But what happens when we're gone?? It's crossed my mind. We discuss it occasionally behind closed doors at night because we would never want to worry Kyle at age 7 with such things. We both agree that it would never be fair for Kyle (or his wife & children) to take David into their home one day. Which means that David will have to be somewhere where he can be taken care of.

Obviously, Kyle has thought of things of this nature. I am so proud of him. I hope he knows that I want him to be able to make a life for himself and eventually his family. Eventually, we will have to have this discussion with a Kyle who is mature enough to realize that we want him to be able to have a life that is his own, but the knowledge to be able to make loving and caring decisions regarding his brother. I want him to teach his own children about his brother & not to be afraid of people who are different in the world. I have so much love for Kyle when, at age 7, he can utter the words that he did to me today. I know he sees David as part of his future. I love these two brothers.

Life begins and ends with family :)

*Pictures done by TeriLyn Lifestyle Photography

https://www.facebook.com/TeriLynLifestylePhotography

Growing Up

Tomorrow my baby turns 7.

How? I don't even know how it happened. One second he was an infant. Then a toddler. Then he went to school. It went so fast. Second grade is right around the corner for him. And us.

Even though he's my youngest, he has given me many many firsts as a Mommy. Seeing one of my kids walk for the first time. Feeding himself was huge. Riding a bike. Those little things I have never experienced before.

And most recently-as of tonight-waiting for an X-Ray to show if he had any broken bones in his foot. Because he "fell" off the high bar on the playground at school. Yup. God gave me your All-American typical little boy. Always busy and not afraid of much.

I can't imagine my world without him in it.

Happy 7th birthday tomorrow, Kyle Matthew.  You filled a huge hole in my heart and I hope you know how much you mean to us!

PS-X-Rays came back ok. Just bruised it pretty good!

Perfection?

I was feeling rather brave today. I went to work with both kids. Then, since I must've been feeling lucky, I took them both to the grocery store with me. Now, this is something that rarely happens. I usually wait and go on a day Michael's off. Just the thought of dragging the wheelchair in and relying on a 6 year old to guide it smoothly through the store is terrifying on some days.

But today we did it. And it went pretty well. Kyle's little head can barely see over the David, but he got the job done without injuring another human being or knocking over displays of baked goods.

Along the way, I noticed that we had seen the same older woman in several of the aisles. She approached me as I was getting ready to head to the check out lane. She thought she had never seen such a perfect family. And well behaved children. As I looked over my shoulder to see who she was speaking to, I realized it was me! Such a nice compliment. But she only got to see a 5 minute glimpse (and must've missed us in the toy section as Kyle was racing down the lego aisle at top speed with me yelling at him to slow down) in what can only be a life called anything but "perfect".

Oh, I had great intentions of being just that when I had kids. All sunshine and roses. Then the children actually came into my life. Perfection went right out the window.

Now, I obviously have 2 kids. They're both boys. But their similarities really end there. David has exceptional needs. And Kyle's are more typical. Hence two completely different ways that I can go perfectly WRONG!

In the last two days I can think of several things that would have gone right if I had been perfect.

Some of my special needs imperfections:
David wears braces on his perfectly imperfect feet to keep them from turning out. He SHOULD wear them all the time. Yesterday we weren't feeling it.

Schedule is very important to a kid like David. He thrives on it. It's spring break. Schedule Smhedule.

I thought things were going well when we left the house this morning. His braces were on. He was looking cute. Diaper bag was packed. Or maybe not. I learned the very hard way that there were no baby wipes in that bag. Oops.

Or forgetting the extension in the drainer of the sink at home. Now this extension is David's lifeline to food. Luckily, we keep extras in a small backpack that is always on the wheelchair. (Because guess what? We've done this before!)

A few of my typical imperfections:
Last night Kyle went to a movie with a friend. Came home. Michael and I had tacos for dinner. Kyle had a tortilla. I figured he was full from his popcorn appetizer.

This morning his attitude was a little too much for me. He was grounded from video games. I forgot. He's playing Star Wars as I type this.

Yes. We watch Spongebob in this house. He taught Kyle what condemned means. LOL. Sometimes I just need 30-60 minutes of time in this house where he's not asking me questions.

And one last "typical" imperfection as parent. Bribery. If you've never used it to try to get your child to do something necessary, you really may be perfect.

With all of my imperfections though, one thing I know for sure is that they are both loved to an extreme. They give me reason to smile. They are our world.