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.
Maybe because I have fought so hard, it's making it so very difficult to give in.
Oh Jen..... I am so sorry about this, don't think for a second that you did not put up the "good fight", but don't look at it like you lost this battle. As you know Kennedy has a G-tube and it was a lifesaver.
We were sent home from the NICU with an NG tube, because just as yourself, I didn't want to subject her to any additional procedures and I really wanted to give Kennedy the benefit of the doubt and let her prove herself. At that time she was taking full feeds by mouth. However, as her issue got worse she eventually stopped eating all together.
Our G-tube is great. No extra skin, no leakage, no rash or skin irritation, and we have never pulled it out or tugged to hard on it. It is slim and Liam will be able to lay on him belly if he wishes while he is eating.
Even though this decision comes with a heavy heart I think it is the best decision for Liam. You will no longer have to force him to eat. You will not have to worry about turning food into something negative, he will be getting all his nutrients, gaining weight, and you can get some sleep!!!!
The procedure was quick and easy for Kennedy. It is an outpatient procedure. NO intubation needed (for kennedy there was, but not for 99% of patients).
I wish you all the luck!!!!! Whatever you chose to do it will be the right decision for you and your family. E-mail if you want to chat.
We're right there with you. Teetering back and forth. Do it, no don't do it, no do it, no don't....PLEASE call or email if you want to chat, vent, cry, whatever. I know exactly how you feel about having done it in the NICU vs. now as an "elective" but not so elective surgery.
I'll be praying for you to find peace in the decision and hope you'll take me up on the offer. We can meet for lunch one day or dinner. Your call!
Jen-I do not have any experience with g-tubes, and thus want to choose my words delicately, as I know this must be a delicate time and would hate to say something presumptuous, but I just want to tell you how sorry I am that you had to make a decision on something that you have been fighting so long. I know this comes as a huge blow to your heart, but hope in time it will bring you some peace, some rest,and some relief from it all. You have done everything and more that you could possibly do in this area and every other area-and please please do not feel that you have "failed"-it made my heart sink to imagine you feeling this way-Nothing about Anything you do is failing. Everything you do is with the utmost determination, strength and faith of anyone I've ever known. If everyone had a person who loved them and fought for them the way you do Liam, well, the world would be a much better place! It sounds to me that it was breaking your heart to see him so sad while eating and if this makes his heart happier, I know it will make your heart happier too. At the risk of sounding presumptuous, I think this will be for the very best. Lorena
Jen, you're a wonderful mommy and Liam is so lucky to have you...
What a huge decision for you. The parents I work with have dealt with same issues you have with feeding Liam and everyone post g-tube have said they wish they had done it sooner. With a g-tube you can still feed Liam but but he can get his extra calories from tube feeds which will lesson your worries about his intake. Have you increased or changed his reflux meds, our kiddies often require higher dosages to control their reflux. We definitely notice a huge improvement in Elizabeth's eating once we increase her meds when needed.
Keep us posted on your decision.
Jen, I know you have worked so hard to get Liam to eat and you've done more then many. Kid's also go in stages with their eating - any toddler does. Maybe it's just a down time. Then again, maybe he's just telling you that it's time to make a change. I do remember a huge difference with Carver once he got his G-tube. I know I've said it before, but I'll say it again. Once he got the G-tube, it was like his little brain came to life. Proper nutrition does make a big difference developmentally. The first few years are critical brain development years. You're not a failure if you go that route - you're simply a loving mother giving her son everything possible to help his succeed in life. I know you'll do what you think is best for Liam, whether you keep working through the current down time or whether you move forward with the G-tube.
Thinking of you while you make such a big decision.
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