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.