7 weeks…what an experience so far. (very long post)

It has been 7 weeks since Corrigan had his feeding tube procedure.  Seven weeks of messes and frustration (for Mama!) but he handles it all like a champ. The tube has not slowed him down one bit. He still rolls, climbs and sleeps on his stomach. He bathes, swims and jumps on the trampoline without worry. He does not touch it and does not seem concerned that it is there at all.

He is one resilient little boy.

(Resting on the couch after returning home from a Hopkins checkup. BandAid is over his chest port that was accessed for blood draw.)

I will be honest. Candid even.  I really hate the tube. There. I said it. Maybe things will change once he gets his Mic-Key button. I don’t know.  We could get the tube switched out for the button mid-July but due to the ulcer and polyps that they found during the original procedure, Little C has to have a repeat endoscopy in August so we elected to just wait to have his button done during that procedure.  I regret that decision some days.

I hate it for silly, superficial reasons. It is ugly. It is hard to clean. It makes his shirts fit funny. I have to pin it up or tape it down. Corrigan’s skin is raw from the adhesive on the tape that I use, even if only for 15 minutes in the bathtub, and I hate having to rub hard to get the residual black marks off of his pretty skin.  The c-clamp on the tube is a piece of crap. It can be bumped open with the slightest touch. I have tried taping it but it makes accessing it several times a day a chore. You can see in the photo that on that day I tried using a small hair tie to keep it closed. Fail.  Coupled with the crappy lids on the end of the tubing this means that he can bump the c-clamp open, while playing, and ten minutes later I find him soaked to the bone in stomach juices and whatever was in his tummy. Fun stuff. I tell ya.

The tube itself is just a big pain in the butt. It is long. Way down his leg when it is untaped. Why on Earth it has to be this long is beyond me.  The Y-adapter on the end has a food port and a tiny little medicine port.  Whatever material the adapter is made of (silicone?) wore out fairly quickly and the lids will not stay capped.  The medical supply company has sent replacement adapters but they are for 14 or 16 F and his tube is 20 French.  We did finally get a 20F adapter on Friday but I have not had the nerve to try and replace it yet.

At random moments, when hooked up to his feeding pump (which he carries in a tiny little backpack without complaint) the medicine port will blow and formula (with precious medicine) comes spilling out onto the floor. The problem is that the cap breach is nearly silent so I often do not realize that he is leaking until an ounce or more is sitting in a puddle at Corrigan’s feet.

(SafetyTat applied on his forearm, as it always is, when we hit the road)

I think that I have figured out how to handle the medicine port blowing. I think that there is pressure from his tummy that meets the pressure of the food coming down the tube when the process initially begins. Until that pressure equalizes, the unstable medicine port becomes a weak point in the process and the lid cannot handle the load.  If I get it all set up properly, and then wrestle an angry toddler with my left hand while simultaneously pressing the medicine port lid closed as hard as I can, with my thumb, for several minutes everything eventually evens out and the feeding process then continues without leakage.

Corrigan gives me no fits about wearing his backpack, in fact, he will hold out his arms once he sees me bringing it over to him but he will not tolerate being restrained. He is held down a lot in his little life for various medical reasons and his instant reaction to being restrained is fury.  It really isn’t easy to hold him for several minutes and hold the tubing. I have tried taping it with surgical tape, paper tape and packing tape.  It needs a lot of pressure that tape cannot provide.

Also, near the end of his feed, when his stomach is more full, if Corrigan does a lot of bending or squatting I find that sometimes the food will push back up the tube, popping open that stupid little port again, and we then lose more formula/meds.

Not to mention that Corrigan has a specific rate that we set the feeding pump for over the course of one hour.  This rate was the same from when the procedure was first completed and he was in the hospital and it is the same now. He takes about 7-7.5 ounces in one hour’s time.  This is fine 95% of the time but, for some strange reason, some of the time he will vomit.  I can tell by looking at him that he is feeling what I call “sloshy” and he feels it too.

He deals with it, to my GREAT frustration, by sticking his finger in his throat.  I mean, I get it.  I have felt so nauseated that I knew that puking would be the only thing to make it go away but I didn’t think that toddlers knew that trick.  Corrigan has a really sensitive gag reflex and it takes one good finger-poke to bring it all back up…often I find myself yelling, “Corrigan NO!” when I see him put his hand to his mouth and racing quickly to him to try and stop it. Blowing in his face, distracting him, splashing him with water…anything to make the vomiting not begin…but it rarely works. We lose it all then. Every bit of food and medicine. It makes me sob every. single. time.

When Corrigan vomits up a feed there is no way to calculate what he absorbed.  If Corrigan does not get all of his medicine through all of his formula…then I am terrified to give him all of his protein solids ( he gets 10-11 grams of protein through table food a day in addition to his formula) because I do not know how much medicine he lost.  He not only loses valuable calories, when he vomits a feed, but he loses the medicine that saves his life.

Sometimes I bump back the rate which means that he wears the pump and pack longer but it helps to keep it all in his body. I no longer pump feed him while sleeping because even though they told us that there is no problem with feeding him laying down (“no need to prop him up!”they said) each and every time that I do he ends up throwing up all over himself and choking.

(my happy little boy… in spite of it all)

There are positives though. He does not vomit daily. Nor weekly at this point, I do think that I have more things figured out now that I have had some time but it is upsetting to me that we were sent home with so little education. So few resources.  Everything that I have learned has been through the love and support of people at The Oley Foundation, my friends at Support for Special Needs and the solid advice of mom’s like Ricki, Amy and Jennifer that have been through it all.

Heck, even the medical supply people did not fully train me on the actual feeding pump and I had to learn through trial and error about how to empty the feeding bag of air before priming the bag.  I did not have a clue that the only way to keep a pump running on an upside-down toddler was to remove every last bit of air from the bag. How could they feel okay with walking out of the door with only five minutes of training? *sigh*

We are able to take rides now. We go out of town without worry.  I feed Corrigan at 8am, 12-1pm (depending on his naptime), 4 or 5 pm and then before bed.  I do not have to pump feed Corrigan for all of those feeds. In fact, some days I do not have to use the pump at all. He will willingly drink it by bottle and that is that.  As the weeks have gone by though I find that his dinnertime feed is the one that he is least likely to consume by mouth so I often prepare that feeding bag ahead of time, toss it in the fridge (or cooler if we are driving somewhere) and put it all in his backpack without a fight.

It is especially awesome for driving. Prior to his surgery, on clinic days (which take place nearly 3 hours away) the entire day would be so stressful because he had to fast 3 hour prior to his blood draws but then would be shaky and in desperate need of nutrition afterwards. However, Corrigan is a child of routine and a product of our hermit-like existence so he would not take a drop of anything, by mouth, until we returned home.  We would find ourselves racing back from Baltimore, praying not to be caught in rush-hour traffic, to race him in the door, plop him in his beanbag, turn on his movie and let him take a bottle.

Now? Now we just hook him all up, press RUN on the pump and drive.  We hang his bag on the dry cleaner hook in the backseat of the car and take our time. We can go shopping on the way home if we want. We can grab a bite to eat (though not in a restaurant…he is still very misbehaved in those kind of situations) we can stop to sightsee. We are freed by the ability to feed him on the go. It is wonderful, I will admit!

Also, there are no more battles revolving around food anymore. I am no longer begging him to eat. I give him 20 minutes to drink his formula by mouth and whatever is left afterward goes in through the tube. For awhile, it seemed as if the tube feeding was affecting his self-feeding(by mouth) of solids.  He just didn’t seem interested in taking anything at all by mouth in the beginning. However now, if I time it properly and do not try to give him snacks too close to a pump feed, he eats great and that is such a good thing because this feeding tube is not meant to replace oral feeding, not at all, in fact our goal (with the help of therapy) is to get Corrigan to the point that he willingly takes all of his nutrition by mouth and the tube is no longer needed.

We consider the tube a bridge to get us over the troubled waters of natural (and normal) toddler pickiness.  Pickiness that, for most children, is just a matter of waiting until they are hungry but for Corrigan that pickiness compromises his health quickly. Nutrition is a tightrope that we walk and the feeding tube, though it drives me crazy for real and superficial reasons, is the balancing bar that keeps us moving forward and prevents us from crashing hard to the ground.

So there you have it. It has not been as easy as I had hoped. It has not freed us up as much as I had hoped (if only because I fear the leaking out in public) but it serves it’s purpose which is to provide lifesaving medicines, and nutrition, to him in an alternate way in case he cannot, or chooses not to take it by mouth. He grew three times the expected amount of linear growth at his first appointment out from the surgery (4 weeks from the procedure date) so obviously it is serving a purpose. It is keeping him healthier, helping him to grow better and though he has not been sick with any illnesses that could cause dehydration we know that it will be then that we will be singing the praises of this ugly tube.

That is my g-tube update for those that had been asking!

Counting down the days until the button!

mindy~

6 thoughts on “7 weeks…what an experience so far. (very long post)

  1. I honestly think that once you get the Mic-Key Button life will get easier! The only problem I ever have with it is that Lynlee is amazed with the hook up and wants to put it in her mouth ALL the time! LOL.. Especially during feeds and I’m just waiting for the day she pulls it out! But I don’t have any other issues with it, except it sometimes leaks around the sides (mostly when she rolls or pulls on it.) It doesn’t change her clothes, and unless she is hooked up no one can tell she has it.

    Keep your head up, and it will get better!

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  2. things will get better!!! trust me once the mickey is in its a world of difference. thats terrrible that it is making him sick on his belly like that. hopefully that will subside too. hang in there!!! let me know when you want to have a playdate! 🙂 ricki

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  3. Stacy and Ricki, I sure hope that it gets better!

    Sagemom-I was worried about complaining but I am glad that you think that other’s might benefit from my whining! lol

    ETA: so last night I hooked Corrigan up to his pump as always. For an hour I assumed that all was well because there was no beeping. No leaks. I glanced at the clock at one point and wondered why I had not heard the finished beep but thought little more about it.

    A few minutes later, Corrigan and I were in the kitchen and I looked down to see a sort of cottage-cheese liquid on the floor. It took me a second but my brain didnt process fast enough that if it was clotted it was from his STOMACH not the TUBE.

    I quickly clamped everything and when I took out the pump it was flashing NO DOSE or DOSE DONE (can’t recall) but it was not beeping. Not at ALL. And in the bag, once I poured it all into the bottle, was 5 of his 7 ounces!!!!!

    Poor kid wore that stupid pack and pump for over and hour only to get 2 ounces in him? I was so frustrated. When I took it all out of the pack I found the problem, somehow the tubing had turned over on itself effectively clamping it off…but WHY didn’t the pump beep? it ALWAYS beeps!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!.

    It was bedtime by then so I laid him down with the remainder of the bag contents (I know, bad mom) and he finished it all that way but still. If I cannot count on the beeps and alarms then what else can I do except constantly grab Cor and check the inside of his bookbag all of the time? That will get so annoying for him especially since the pump/backpack is supposed to free him up.

    Grrrrrr….this is all so frustrating but such a blessing at the same time. What a dichotomy.

    xoxoxo Mindy

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  4. I finally got a chance to come back to your blog and look around. You’d written a comment on one of my You Capture posts, but I hadn’t had a chance to really look at yours before now. We’ve dealt with the g-tube and button thing for years. It does get easier once you’re using a button instead of a tube, but there are always days that are frustrating for some reason. Feel free to contact me if you want to talk about it.

    Barb

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