The last two weeks have brought about more conversations of the g-tube than the entire 1 1/2 years combined. Leah, one of our OT's who helps us with feedings and oral skills, has been very helpful in discussing the issues we deal with. I put her on the spot today and asked her if Liam was her boy, what would she do. After squealing, "I can't believe you are asking me that!" she answered me by dancing around the answer. She gave me the important things to look at and to go from there.
Is he getting enough nutrition?
Probably not. He really never has.
Is he still willing to eat?
Is he still willing to drink?
Only from a syringe.
Do we want him to completely shut down all oral intake before we realize he needs a g-tube?
I could use a euphemism, but this just sucks.
Liam hasn't been doing good with his motility and eating since I put him on the generic form of erythromycin. Don't ever let anyone tell you that there isn't a difference between the two. Liam started changing back to his old self (the cycle of reflux, vomit, and refusal to eat) within 1 week of being on it. When I mentioned to Leah that the generic was thick and wasn't even the same dosage as the name brand, she said that she had heard sometimes certain medications can have a minimum requirement to make it equal to the name brand and it won't be as potent. For some people and some medications it doesn't make a difference. But for Liam, it was huge. I got back onto the name brand as soon as I could.
The problems started slow, but obvious. I noticed reflux and vomiting that I hadn't seen in a long while. It has now come to the refusal of food at times. And for the first time ever, Liam now gets emotional at times with his food. He used to only get irritated if he didn't want to eat. Now, he will get that sad puppy dog face where the corners of his mouth turn down in the biggest frown possible and he will cry. No anger, no flailing or pushing away, just tears. It's pitiful. And they start over with every bite.
The fact that having food put in his mouth is starting to sadden him and that greatly saddens me. He has to get all of his nutrition by mouth. I don't have a back up for if he decides to shut down. Breakfast was a no go this morning. He cried through the whole thing and I only got half way through the food. When his head is turned so far around that his mouth is over his shoulder, I can't get food in! And when he is that emotional over it, I feel like if I push him, it is going to just exacerbate the whole issue.
I would like to attribute all of this to the generic erythromycin. But Liam has always had feeding issues. I've just been able to work around everything to keep him gaining weight. But now that he is older he knows he has a say so in what goes on and he is starting to give me a resounding NO when it comes to his food. It's great in a weird way because he is showing his personality, his cognition of his ability to say no and his desire to have some say so in what we keep doing to his mouth. And yet, at the same time, it sucks because I no longer have the semi complacent baby who will eat even though he is doesn't really know hunger, is still full from a previous feeding and doesn't like the taste of the food.
I guess my next step is to make the call to the GI clinic and tell them we are ready. Even though I'm really not.
Though the g-tube will make it easier to get the food in when I can't do so otherwise, it will bring about new issues: reflux can become worse for quite some time after having one placed, leakage or drainage from the site, excess growth of skin at the incision, and of course, having the tube pulled out by accident.
But, in the long run, I suppose have to look at this from a different angle:
- I won't be exhausted and frustrated from trying to get him to take in enough nutrition by mouth.
- Our daily life won't have to revolve so closely around his feedings.
- Liam won't be ticked off at having to eat when he isn't hungry.
- Liam won't be emotionally tied to food in a negative way because of the forced feedings.
- Liam will still be able to eat orally when he wants.
- Liam can receive all the nutritional intake he needs for the first time ever.
- No more gagging and vomiting when I give him his supplements and meds because they will all go through the tube.
The hardest part of it all is giving in and saying we need it....and electing to put him through this surgery when he does eat. If he had come home from the NICU with one, it would have been different, but to fight so hard and so long to only feel, however small, that we have failed in some way is a difficult pill to swallow. But, I do know, that I have tried very hard and worked my butt off to keep the g-tube away.
Maybe because I have fought so hard, it's making it so very difficult to give in.