The Fabulous Life of...

a tube feeder.

Today's topic: what is a typical day like.

Well, we are still adjusting to life with a tube. This is our typical day:

0730- Time to rise and shine for school! Hayden's night feed is usually still running. He takes his pole to the bathroom to brush his teeth and back to his room to get dressed.
0800-By this point, we are downstairs. Usually, there is about 100-200ml of formula left in his bag. I stop his pump, clamp his tube, and give him a flush of about 60ml. This goes towards his daily total of water. I add his daytime total feed to his bag. I load his bag, pump and tubing into a backpack to get ready for school.
0810- Hayden is on the bus and off to school.

Hayden gets a total of 1475ml of formula a day. Hayden can only handle a rate of 100ml/hr during the day, though, and 65ml/hr at night. Do the math. He's on his pump for about 16hrs a day. Now, of that 16hrs, about 9 of those are while he's sleeping. While he's at school, his bag is either on his shoulders or hanging off his chair. The pump only weighs about 1.5oz so it's really light. He doesn't even notices it most of the time. Periodically, during the day, the school nurse checks on him to make sure everything is still pumping and ok.

1550- Hayden gets off the bus. He's usually still pumping.
1625- His daytime feed finishes. I turn his pump off, clamp the tube, unplug him and flush him again with 60mls. At this time, I have to do his post op tube care. For him, this means spraying a soapy water solution on his belly. This not only provides antiseptic, it loosens and softens any build up or crust. I use clean q-tips to softly remove these. I, then, use gauze to dry everything. Once that's done, I rotate the whole tube and reapply tape. I also put a bit of neosporin on him. He gets the remainder of the evening off the pump.
2000- bedtime! I give him one more quick look over to make sure his tape is good and that no build up has come back, give him his meds, and he's off to bed.
22-2300- Whenever I go to bed, I take his night feed up. I take a clean bag, add a 4ft extension and pour in approx 720ml for night time. I take his pump and feed upstairs. Once in his room, the bag gets hung on the pole, the pump attached to the pole and it's plugged into him. I lower his rate to 65ml/hr and he's good to go. Now, if he rolls onto the tubing, we get alarms through the night saying NO FLOW OUT. We have to go in and roll him over and find the kink. Most nights, we get no alarms. Some nights, we get 6+ alarms. Other nights, he comes unplugged and we "feed the bed." This means that the feed went into the bed instead of the kid. This makes for a nasty mess. Not only is the bed full of milk, since there's nothing plugged in or clamping the tube, there's nothing to stop the stomach contents from coming out. So, yeah, I wake up to the smell of sickly sweet vanilla and stomach acid. Bleh! Thankfully, this has only happened once. It's amazing how fast stomach acid can flow out of that sucker. lol. It's like an open hydrant.

Now that we are settling into a routine, it's not that bad. Hayden definitely feels better about mealtimes because there's no stress or pressure. Now that we know that a) he wasn't eating due to slow motility, a very small stomach and reflux and b) he's getting his calories no matter what, there's no stress for us at meal times.

Feeding Tube Awareness Week

This week in February is National Feeding Tube Awareness(FTA) Week. As from the title, the purpose is to raise awareness not only to the devices themselves but to the kids and adults who have to use them for various reasons. Also, FTA is to debunk myths and misunderstanding about tube feeding. Everyday this week, I will write about something about tubes. If you have a question, please feel free to ask.


Today's Topic: Why I have/my child has the tube they have now - a highlight on the medical conditions that require tube feeding. 

As many of you know, Hayden just got his G tube a few weeks ago. Hayden got a tube for several reasons. Hayden has documented oral difficulties due to his low muscle tone. His jaw muscles are weak and tire easily. His throat muscles are still weak and can be uncoordinated. This makes the simple act of chewing exhausting for Hayden. He has to put a lot of effort into simply taking a bite, chewing and swallowing. He simply doesn't take in enough on his own to grow. This has caused him to fall down the charts. He's currently at about 15% for weight and about 23% for height. That is a huge drop from his 95/75% that he used to be. He has been slowly going down over the past few years. He also has problems staying hydrated since he doesn't drink enough fluids. Since Hayden got his tube, we have learned a lot that answers the questions on why he wouldn't eat. It appears that he has a very small stomach and can't handle volume. We can't get him above 100ml/hr without him becoming painfully bloated and distended and stomach contents pouring out around the tube. He also seems to have been refluxing all this time. Now, we feed him under 100ml/hr and added Prevacid back to his meds and it's made a huge difference. Hayden loves his tube. He still eats at the table for Breakfast, lunch and dinner. While we definitely have days where it's not perfect and it definitely is a lot of work for us as parents, we all feel like this was a great decision for him. 

Tomorrow will be another topic. :) 

I wouldn't change him/her for the world!

I hear this phrase uttered a lot in the SN community, even with other disorders. My son has Aspergers, CP, Asthma and a few other things. Sometimes, I ask myself, would I change this if I could. Honestly, I don't know. If I took away his "issues," would I be doing it for me or for him? Am i taking them away because The World doesn't accept him? Am I making him conform just because of what others expect? If I take it away, how would it change him? Would he no longer be in love with Star Trek? Would he not obsess over Mario so much that he has no interest in playing anymore? Would he not be happy sitting under me on the couch playing video games on Saturday morning? He probably wouldn't be a complete nerd like me. Would he enjoy symphonies and nature sounds or Star Wars? He was the only one of my 3 who wanted to go to the Navy Band Concert with me, even Jeremy wouldn't go with me. I would miss all the Haydenisms and one-liners. I would miss the matter-of-fact statements when someone does or says something stupid. Will I miss laughing as I watch him eat boiled eggs with sour cream? Would he give me the elaborate story telling when telling me a dream to the point that I'm convinced he's making this up as he goes? What would I lose about him? Would he be as good at math and science as he is now? Would he watch Sci-fi with me? Of my three kids, he's my only nerd. lol. He may not have a ton of friends but he has 1 or 2 that understand him. Isn't that all we need in life? Yeah, the emabarassing sensory overloads in public would stop. Yeah, he'd eat the food on his plate without gagging from texture. There would be no more ABA. No running back and forth to therapies. He would have been able to participate in T-ball and actually finish a game. I would know when he's in pain or sick. He would be able to play outside for more than 5min. But would he still be the same kid? I would miss having someone see the world from the same point of view I do.

I never utter this statement cause I don't know if I would or wouldn't. He's fine who he is. I'm fine who I am. I have accepted our life and moved on. In fact, i wouldn't change him or me. I would change society that says HE must conform.

The NG that refused to be...

It has been interesting the past couple of days. On Sunday, we changed Hayden's NG. He'd had it in for 2wks and his skin was badly irritated from tape. Monday morning, after eating breakfast and finishing his nightfeed, he vomited everywhere undigested breakfast from 2hrs prior. Of course, the tube came out with the puke. Jeremy threw it in the trash. So we pulled out the third and last tube the hospital gave us. After a few attempts to drop it (he kept coughing and gagging), we finally get it in. Yet, we can't hear air in his belly. We pulled it out and dropped again. Still no air. WTH. The syringe was meeting no resistance on pull back either. Then we noticed we could hear the air rushing through the tube OUTSIDE his body. Does this thing have a hole? Well, I put it in a cup of water and pushed in air looking for bubbles. No bubbles. Okay, so apparently I'm just screwing this up. I dropped it in again. This time, half way in, I notice the tape marking length has somehow come off. Crap. So I took a chance and continued progressing to the point that left the normal amount outside his body. Listened for air...got it! Just to be safe, I progressed another inch. Still have air! Pulled back for residual...nothing. Got resistance but nothing from stomach. hmmm...Pushed in about 40ml of water (thinking if in lung, he'll cough). Pulled back, nothing. So I thought for a minute. Had him drink a cup of pink pedialyte orally knowing that it would go to the stomach. Then pulled back...got pink pedialyte! Okay so it's in belly!

Yesterday, we are driving back to VA from FL. He tells us he's leaking. huh? Turn around, sure enough, milk is dripping from a HOLE by the port! I didn't see it before because, of course, the port was out of the cup of water since I had it hooked to a syringe. Great! I took the only tape we had, Medipore, and wrapped around hole to finish feed. I got to do post flush, of 30ml flush, barely 10ml went to stomach. It POURED out of hole. Stomach acid is flowing back down capped tube. just freaking great! We were somewhere in north/south carolina. I called our supply people. They said they would overnight but UPS was backed up and couldn't garauntee. next day. So we had to go to an ER for a replacement. No morning or lunch feed. Went to an ER in VA. 

I called ahead to local ER to see if they carried 8F 90cm NG tube. Nurse was an absolute pain. Finally, 2hrs later, get told they have one. Got into town. Went to ER...there are THREE ERs in the same small city by the same name. We were not at the one I called. Whatever. lol. Well, we get into back. MD comes in. He asked me "Where does it go?"
"huh?"
"well, is it in his intestines?"
"No, it's an NG tube."
"So where does it go?"
"it goes to his stomach."
"Just his stomach?"
"yes."
The nurse then says, "Then what's the point?" I said Wow you're a dumb one...  Seriously...
So he informs me that they don't usually deal with this kinda thing and wasn't sure if they had one but could get one from one of the other 2 ERs if not. Well, about 5min later, the nurse comes back with a package with an 8F NG tube. I ask her the length. she tells me 40cm. what? Well, I remove it from the package, it's more than 90cm long. Whatever. lol. So she ask me do I want her to help place it. Sure, why not. She then tells me she's not good at it so she'll just hand me stuff. Yes, I dropped his NG in at the ER. I guess there was no liability concern. After it's in and taped, I start to prepare the two missed feeds into his pump. MD comes in and says I need to wait and tells the nurse to check hospital policy on using xray to check placement. Hospital policy doesn't require it nevermind that I would not have allowed the unnecessary nuking. So he, then, asked the nurse if the check air only applied when the NG is going to be used for feeding. I looked at him and said," I'm sure the policy was written with the understanding that a feeding tube would be used for feeding." I, then, notice that the tube they gave me has no port cover. When we got home, I took a 4ft Kangaroo extension and tied a not right above the Christmas tree and cut it off. This is what we stick in it when not in use.

I can't wait til peg placement. lol

~* NG- Nasogastric tube- feeding tube that goes through the nose to the stomach

     NJ- nasojejunal tube-feeding going trough the nose to the upper part of the intestines

      G- tube going through abdominal wall into stomach

    GJ- tube that goes through stomach wall but splits with one tube staying in stomach while another goes into the upper part of the intestines

     J- tube going through abdominal wall into the intestine, not stomach at all

    PEG- type of placement procedure for a G tube. Involves and endoscope going through the mouth. No scapel necessary. Often this term is also used to refer to a style of G tube that is an actual tube coming out of the stomach

 Button- new style of G tube where there is a "cap" on the stomach leading to inner tube inside of stomach. When time to feed, an extension is attached to the "valve." Think of it like a valve on an inflatable toy and the extension is like the bike pump attachment. When not in use, it's just a cap almost flush with the skin.

a giant step in a forward direction

Okay. It seems that all of the ducks are in a row. My nerves are on edge but I will tell. Hayden is going inpatient tomorrow for an NG tube. They wanted him to go straight to G but we chose NG due to the holidays and travel. Other than the occasional overnights for observation or testing, Hayden has never been truly inpatient for days. Hell, Makaylah's trip a couple months ago was my first time there, too, with a child, not for myself. I am nervous about this trip. Hayden isn't. He's looking forward to it. I'm looking forward to growth. I'm nervous about handling pumps and bags and tubing and night feeds. I'm nervous about handling an Aspie with a broken schedule. I'm nervous about Jeremy being responsible for packing the whole family for Florida which he doesn't know yet.

Hayden's weight, hydration and eating has been a constant battle since they day he was born. We now know that his hypotonia extends into his mouth and throat muscles, he still has tongue thrust (a natural infant reflex to help prevent infants from choking on foreign objects; supposed to outgrow by about 4m), he has an uncoordinated swallow, he holds, and has an inefficient swallow and, apparently, high calorie needs although the cause is still unknown. On top of that, he also has sensory issues making some foods "not feel right" in his mouth which keeps him from eating them. Hayden is extremely slow to gain weight and grow, despite formulas, high fat/calorie foods, and much pushing and work. We've done appetite stimulants and feeding therapies that made no difference. None of this explains why he won't drink enough fluids to stay hydrated. He needs almost 40oz of free fluids and 1450cals a day. He avgs. 4oz of fluid and maybe 5-700cals on a normal day, sometimes much less. We are now moving on to plan B.

Hayden will be getting an NG tube first. This is a thin, silicon tube that will go in his nose down to his stomach. He will have this taped to his face. There's no surgery or cutting for this. He will get his formula put into a bag with tubing routed through a pump and connected to the one on his body. He will have a backpack to carry this around while milk is pumped directly into his body, giving him the nourishment he needs to grow. Hayden is okay with this so we are (getting to being) okay with this, too. I hope this works out for him. I'm sick of seeing bones. I don't like seeing his heart beating through his skin. I want to finally toss out all the 18m shorts and 2T diapers. I want him to have the energy to play with his friends. I want to get rid of the brown urine diapers. I want to see him start outgrowing things. I don't want to see him being the tiniest kid in the class. I want to hold his arm without feeling the bones. I hope this can stop the muscle atrophy that's going on. I want to see him be a normal child.

My Shipmates, my airmen, my Soldiers and Marines

My Shipmates, my Airmen, my Soldiers, my Marines. You are my brothers, my sisters, my family and my friends. As of this moment, we've lost 7,503 of our fellow brothers-in-arms. Countless others have come home injured, missing body parts or just not the person they used to be. While our country may choose to only acknowledge our sacrifices on certain days of the year, we see and remember it every day.

We remember our friends that didn't come home. We remember seeing our brothers die. We see the widows. We see the hundreds of children who never will meet their fathers. We see the thousands upon thousands of families constantly torn apart. These homes that are "broken" homes because of the "D" word. Not divorce. Deployment. Sailors, Airmen, Soldiers and Marines who don't see their families for most of the year if not 18 months. Instead, they visit lands of people that hate Americans. Home is a tent or ship. Home is an email or letter. Home is a far away. Home is full of wives having to be mom and dad for way too long. Home is full of children who, despite not having a constant 2 parent home, grow up well balanced and behaved. Home has a family who doesn't know if he really will come home. Home has grandparents having to be mommy or daddy all over again because the real mommy or daddy is Deployed. Moms are Deploying and not able to watch their babies grow up. Moms and Dads are out there not knowing if their children will know them when they are finally able to come home. Sometimes, Mommy or Daddy don't come home. These families are given just a few months to pick up the pieces and make new lives for themselves.

No matter what we fight for, we remember that we are fighting. Whatever our political views, when we are told to go, we go. We grab our guns. We jump in our planes. We board our ships. We fly our helicopters. We go. The risks are high. The danger is there. We go. Our spouses, who didn't take an oath, fight with us. They fight at home. We don't need a day to remember what we see, do, and lose. We remember everyday. We don't need a ticker on CNN to remember we are losing brothers and sisters. We look around our workcenters and remember who's missing. We look around our homes and remember who's missing. We look around camp and remember who's missing. We remember our families. We remember our orders. We get the job done.

Written by

La'Kiesha Shevokas

Memory Lane

Today, we took the kids out to the lake since the base's Powers That Be decided housing should have NO power from 7am-6pm while the pool gets power. Yeah, stupid right? Anyway. I digress. While taking pics, Kaitlyn and Hayden were having a moment. Yes, a peaceful moment. One of those moments that make parents go awww! As I snapped the pics, I had a moment of deja vu. I've taken this pics before. Well, after digging around FB and photobucket, I found it.












Every once in a while, she's a good Big Sister