Category Archives: g-tube

not missed

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At work the other night I find that I have a little bit of time on my hands…

No! Goodness, no it is not that word that is the opposite of fast or busy and it isn’t that word that starts with the letter “q” either.

SSSHHHH!!!!

Nurses do not say such things out loud unless they are naive, newbies, desperate for more hours and time away from bathroom breaks, meal breaks, family time, sleep…or are eager to help move things along for a patient who might have been  maybe laboring all day.

Don’t say those words out loud.

Please.

Trust me in my unit we have plenty to keep us occupied and working hard…very hard…all the time. But the other night I found time on my hands…down time…and with down time we try to catch up. I chose to stock supplies; supplies that when I am slammed with patient care find that I do not have close at hand to help me deliver the kind of patient care that I expect to deliver….

EKG leads…feeding tubes…syringes…kleenex…lancets…heel warmers…gloves…IV tubing…baby wipes…diapers…4x4s…and on and on and on.

I pulled these things (and more) from the stock room with the intent that the next time we get slammed, when I am there, these things will be right where I expect them to be when I need them.

I can be very selfish when I am stocking the patient care areas that I am working in. Then again, I do it for my tiny patients too.

You are welcome tiny patients! Love you beautiful babies!!

So while gathering feeding supplies for gavage feedings because I do a lot of gavage feedings on any given 12 hour shift, I came across this.

Oh you 14 French MIC-Key gastrostomy feeding tube…you were such a HUGE part of my life for such a long time…a HUGE part of my son’s life and his father’s life and his sisters’ lives…until you were replaced by a Bard gastrostomy tube that had to be surgically placed and then, years later, surgically removed. I hated you and I hated the Bard too. Then again, I valued you, grew to rely on you…a lot. It is because of you I often questioned my own ability to care for my child, to nurture him, to feed him. But at the same time I was thankful that you were there poking out of my little boy’s abdominal wall because without you how else would I be able to feed my little boy for so many years?

Oh little 14 French MIC-Key gastrostomy feeding tube, we don’t see you very often here in our NICU but you are here tucked in that drawer in the stock room where we keep all the tube feeding supplies just in case. That is indeed a good thing because what if we did need you at say 0200? There you are, in that drawer. Waiting. Ready.

I close the drawer which you are stored in and sigh. No one needs you tonight or any time soon. Thank goodness. I don’t miss seeing you little 14 French MIC-Key gastrostomy feeding tube. I don’t miss you at all.

the new hunger games

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In this news this week…and pissing me off on so many different levels… is the K-E Diet for the blushing bride-to-be who desperately wants to lose 5, 10 or even 20 pounds in just 10 days…no exercise necessary. All you have to do is have a doctor insert a NG tube (naso-gastric tube) into your nose, down your throat, through your esophagus and into your stomach. The tube will be taped securely to your face and attached to a feeding pump that will slowly drip a unique 800 calories/day formula of protein, fats and water.

“It is a hunger-free, effective way of dieting,” Di Pietro said. “Within a few hours and your hunger and appetite go away completely, so patients are actually not hungry at all for the whole 10 days. That’s what is so amazing about this diet.”

Slipping into a wedding gown for a dream wedding is a moment of truth for most brides, but as many say that there is a real fear that it will not quite fit. That’s how Jessica Schnaider says she felt with a June wedding approaching and 10 pounds she says she couldn’t lose. She was desperate for a quick fix.

“I don’t have all of the time on the planet just to focus an hour and a half a day to exercise so I came to the doctor, I saw the diet, and I said, ‘You know what? Why not? Let me try it. So I decided to go ahead and give it a shot,” she said.

I watched this news report sitting next to my son, Daniel…you know, the kid who was fed by feeding tubes the first four years of his life. The kid who could not, would not take food by mouth for those years for so many different reasons…medical and otherwise. The kid who had to learn how to safely chew and swallow food protecting his airway because his left vocal cord is paralyzed. Yeah, THAT KID! He shook his head, while watching this report, and asked why would anyone do that to themselves on purpose…if they didn’t have to. “That is so dumb!”, he declared. And bad mommy that I am, I didn’t chide him for judging someone so harshly…because he is right. He is so very right. Yeah, Jessica Schnaider, my ten year old son thinks you are dumb.

I get the pressure some women put on themselves to achieve an impossible ideal…sort of…kind of. I get the desire for a quick fix that does not involve sensible dieting and exercising…god forbid a bride-to-be actually WORK AND SWEAT to be physically something she really isn’t…something that her fiance did not fall in love with. I do. Or at least I try to imagine what would drive a woman to do this for no other reason than to be skinnier. Okay, fine! I DON’T get it. Not. At. All.

My precious child was fed by an ng tube for most of the 132 days he spent in the NICU. It was only the last three weeks of his NICU stay that he was able, with great difficulty, to take infant formula by a bottle to satisfy his neonatologists who directed his care. But just two months after discharge he abruptly stopped and refused the bottle…completely. There was no other choice but to resume ng feedings…even if his pediatrician thought he was right: that in spite of his extreme premature birth, his chronic lung disease, his reflux and his paralyzed vocal cord there was no reason why an infant would not eat…would starve himself.

This was our reality.

Our life with our beautiful baby boy was all about feeding him by a tube that was placed in his nose that led down to his stomach and was taped securely to his soft cheek.

Strangers would stare, ask what was wrong with our baby and offer all kinds of unsolicited advice and solutions…because it couldn’t be possible that a baby simply would not eat, would starve himself.

Everything I ever believed, learned or did as a mother regarding nutrition and feeding my children I had to let go of with this experience with my child. I had to accept the scrutiny (and sometimes judgments) of professionals and lay-people alike. I had to be the one to re-insert his feeding tube if it was accidentally or purposely dislodged by my baby boy…sometimes daily…and I had to listen to him cry as I did it. Daniel was fed by ng tube until he was 9 months old when his pediatrician and GI specialist reluctantly agreed to our request for a gastrostomy feeding tube. They would only agree because I refused to give continuous 24 hour feedings by ng tube because of the potential for dislodging of the tube and aspiration of feeding into his lungs. It wasn’t until 4 years later that he was finally able to be tube feeding free. Feeding this child still remains a struggle and I imagine it will always be so for him. I hated the feeding tubes…I despised them…but I remain grateful for them because at one point in his life it was the only way to feed him. Having cared for, cried for, prayed for and supported Daniel on this journey I have to wonder like he did…Why? Why would anyone do this to themselves on purpose…just to be skinnier and prettier in a dress that they will wear for but one day?

ABC

Why?

sensitivities

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Kicking off Spring Break, Daniel got a hair cut.

A lot of hair cut. I love his hair long but I even I have to admit it takes on a shaggy life of it’s own that can’t seem to be tamed for very long.

After consulting with her, he decided that he would like his hair like his brother-in-law’s. He really looks up to Ben…and Josh too.

But, as usual, Daniel proved to be one of Holly’s more difficult clients. Even under the skilled hands of his big sister,.there are a lot of tears, flinching and pulling away. The buzz of the clippers and the whisper of the scissors so close to his head sometimes proves to be more than his overly sensitive self can take sometimes. It tries the patience of us as well even if we understand it is the sensory processing disorder. And, as he gets older, we can easily see that it bugs the hell out of him too. But he toughed it out, with frequent breaks.

Worth it because he is so handsome! I miss the rag mop-top but yes, even I like this look. The only bummer is if he wants to keep this look he will be sitting in Holly’s chair every two to three weeks…at the salon where she works we decided because he seems to keep his self together a little better there surrounded by Holly’s co-workers.

Tomorrow he has to have two stubborn baby teeth pulled so the permanent ones already breaking through can finish breaking through and settle in where they are supposed to be. Yeah, I’m imagining the orthodontist referral will come soon after that. Considering the fact he didn’t see a dentist until he was eight years old because of his oral sensitivities and SPD you can only try to imagine how much I am freaking out about this.

I AM FREAKING OUT!

But I talked a long time with the dentist…okay, I was talked down from my freaking out perch…and I think that Daniel will handle this procedure well. He has a great dentist who seems to get Daniel and his sensitivities. Plus I won’t be there due to a schedule conflict.

ONCE AGAIN I AM FREAKING OUT!

But his Dad will be there. Perhaps that is better. Until then, his big sister Holly better not tell him that scary slasher story about the kid in the dentist chair getting laughing gas like she did to her little sister.

deprived

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Overheard often here under the Big Top…and usually before dinner…from Daniel is the question “what’s for dessert?”. Not a surprising question from a nine year old boy…a nine year old boy who happens to take picky eating to a level 99% of parents could never, ever imagine. He’s trying to decide if any dessert served after dinner will be worth bargaining, bartering, going to war over with whatever is being served for dinner…unless it is pizza or chicken nuggets. Only then is it absolutely certain that the boy will be eating his dinner with no drama or trauma. I’ve bitched about dinner wars before. It truly is not so much fun here under the Big Top…not fun at all.

I was scheduled to work tonight which meant that my darling husband was making dinner tonight. Which meant PIZZA!. He just doesn’t like to fight the hard fight as much as I do. Of course this also meant that he was planning any after dinner treat as well. Tonight my darling husband decided to make root beer floats for dessert.

“Root beer floats?”, Daniel asks. He then declares that he has NEVER had this delightful treat called a root beer float.

Never?

Never.

I don’t believe him, but then again it is certain that he never had a root beer float during the first four years of his life because you can’t put a root beer float through a g-tube. No, really. The carbonation can be a problem. Still I’m not believing his claim that we have deprived him so horribly. I mean there has always been ice cream and there has been root beer. Still he insists. He has never, ever had a root beer float.

Poor, deprived child!

But tonight the deprivation ends.

And how did he find this delicious, root beer-y, vanilla-y goodness you wonder?

Absolutely amazing and delicious. Praise be! He can now cross this off of his personal life list because the child is no longer deprived. No one will have to report us to CPS. Thanks be to the good lord up above!

And thank goodness for my being called off for the night from work so that I was there to witness this tasty milestone. My boys made me a delicious root beer float too. It was pretty tasty if I do say so myself.

I never promised you a food blog

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I don’t pretend to be a great cook. I wish that I was a great  cook. Unfortunately I married a man who can not/will not try much of anything new. His childhood adventures in picky eating are legendary with his family. Give him some red meat, some potatoes and (if you must include veggies) iceberg lettuce and he is a happy man. Of course nearly thirty years with me, he has learned to try and survive and even like other dishes …even dishes that include chicken, fish and vegetables…real vegetables. Still I can’t stray too far away from boring meat and potatoes fare. He’ll let me know if I do.

Then there is Daniel…

I laugh hysterically (on the inside) when other moms complain about the trials and tribulations of their picky eating progeny. Did your child literally starve themselves in a hospital setting like mine refusing to take anything by mouth for 36 hours even though the pediatrician swore no infant will allow themselves to go hungry or thirsty? Did your child eat via a g-tube for several years? Do you still struggle, stress and worry about how to get this child with a paralyzed vocal cord and floppy airway to eat by mouth enough calories to grow on?

Yeah.

Then there is Daniel…

He’s doing okay. He is. As long as I offer chicken nuggets with ketchup and mustard or pizza, he is doing great. But a boy does not live or thrive by chicken nuggets alone. Actually that is probably the worst thing to give a child if you do want them to thrive.  But, hey, he is eating…with his mouth. I’ll take that any day over the g-tube. I will.

Still I do try to find something better than those processed chicken substances. I do a lot of bargaining and begging and nagging. Every once in a while I do score. Then I celebrate…and blog about it.

He asked me what’s for dinner tonight and I hesitated just a little because at 10 o’clock in the morning I wasn’t willing to argue over dinner. His Dad told him. Chicken. No, not chicken nuggets…it’s chicken for dinner tonight. Then Bill turns to me and suggests that I try that French’s French Fried Onion Chicken recipe he saw on tv. It looked delicious he assures me. He would suggest something with the word “fried” in it, the man whose cholesterol remains through the roof in spite of diet, exercise and Lipitor.  Still, I was willing to give it a try…

French’s Crunchy Onion Chicken
prep time 5 minutes, cook time 20 minutes

Ingredients:

2 cups (4 oz.) FRENCH’S® Original or Cheddar French Fried Onions

2 tbsp. all-purpose flour

4 (5 oz.) boneless skinless chicken breasts

1 egg, beaten

I added garlic salt, pepper and cayenne pepper to taste because that’s how I roll. Plus, surprisingly, my sensory sensitive child likes his food to have a spicy kick.

Directions:

Place French Fried Onions and flour into plastic bag. Lightly crush with hands or with rolling pin. Transfer to pie plate or waxed paper.

Dip chicken into egg; then coat with onion crumbs, pressing firmly to adhere. Place chicken on baking sheet.

Bake at 400°F for 20 min. or until no longer pink in center.

Dinner time!

And how was it?…

Well, it isn’t chicken nuggets but drown add ketchup and mustard and Daniel declares it to be good. Then he adds that I am the best cook ever. Keep your opinions to yourself…at least out of his earshot please. The rest of the circus act declared it to be delicious so winner, winner, chicken dinner for me.