Hello, Feeding Tube

I’ve chronicled our woes with feeding Andrew here, here and here. In a nutshell: despite intensive feeding therapy, Andrew is not physically and cognitively coordinated enough to eat by bottle and mouth in a comfortable, enjoyable, and consistent manner. And with the results of recent swallow studies showing that he aspirates fluids into his lungs during feeds, it has gone beyond mere coordination and pleasure issues to a medical one–it is not safe for Andrew to eat by mouth. I guess this didn’t come as too much of a surprise considering how much choking, gagging, and spitting up was involved with pretty much any feeding attempt. This week, we decided to get Andrew a feeding tube and made the decision that Andrew will never feed by mouth again. We returnedhome from the hospital yesterday.

The hospital stay sucked. I’m not sure how else to put it. But it did. Andrew was also in a lot of pain and was on zero pain medication after the surgery. We had to harass nurses to harass doctors to put the order for morphine in. Two days after surgery, he was still in a lot of pain. Three days after surgery, today, the pain seems to have subsided and Andrew is smiling again. So if you’ve found this blog researching what gtube surgery might be like, just know that despite what the surgeon tells you, it will hurt and serious pain meds will be needed beyond Tylenol.

So, what’s it like at home with Andrew and a feeding tube? Pretty great. I know, that sounds like an odd thing to say. As parents, we knew that feeding Andrew took up hours and hours and hours of each day. But exactly how much time it took didn’t really hit us until today when feeding Andrew took less than five minutes for each meal and we had so much… time all of a sudden. But before we get into too much about how much more relaxed our household is, it’s important to note that the months leading up to the decision were wrought with varying levels of turmoil. After all, any parent can share what a rewarding feeling it can be to watch their child eat. Any person can share how much they love to eat and what a pleasure it often is. For our Andrew–whose body is broken in so many ways–we relished that he could still eat by mouth at all. It was the one normal physical thing he could do, whatever that means, even if he was terrible at it. And in the end, everyone was miserable with Andrew suffering the most. So as I was saying, things have been pretty great with Andrew’s feeding tube in place. The stress of feeding Andrew has been removed and he is so, so, so much more content with a full belly that did not have to involve choking, gagging and crying to obtain.  This was the right decision, indeed.

There is much more to update about. But until next time, here are some photos from our recent hospital stay:

Getting comfortable before his swallow study

Andrew's last meal by mouth ever the night before surgery.

Moments before being carried into the OR by Dad

Post-Surgery ET moment

Hanging out with mom in the hospital

Andrew's new feeding tube (a Mic-Key PEG)

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13 Responses to Hello, Feeding Tube

  1. Ouch. I’m sorry that it came to this, but I LOVE how much of a relief it is for you! I just watched a documentary today (“Including Samuel”) and it showed Samuel doing lots of things with a feeding tube. Also, it showed his mom talking to one of his kindergarten classmates about how cool it is that Samuel doesn’t have to taste icky medicine.
    So there are some advantages!
    BTW, are you part of our online discussion group for parents of multiples with CP? I apologize if you already are, I have a hard time connecting names and blogs. Anyway, Jenny on there is a wealth of information about blenderized diets and other g-tube stuff. Join up if you haven’t! https://www.facebook.com/groups/174459189319732/

    • earlybirdies says:

      Thanks for the documentary tip! I’ll have to check it out. Yes, feeding Andrew all his meds through the tube has been GREAT. I’ll check out your facebook group. Love your blog, still :).

  2. minandmax says:

    Wow..what a coincidence. My son had his fundo/gtube on Wed, and is being discharged today. I’m sorry that Andrew didn’t receive enough pain meds.. My son got morphine the first 24 hours after the op and Motrin for a couple days after that, and he seemed to do well with that. You would think that hospital staff would know that patients need *some* pain medication after a laparoscopic operation and gtube placement..

    Welcome to the brave new world of tubefeeding. We have been tubefeeding through an NJ for a year before this. There are challenges, but there is a lot of comfort knowing that your child is getting enough, and isn’t aspirating at the same time.

    • earlybirdies says:

      Hi! Your twins are adorable :). Thanks for the message. I am glad to hear your son’s recovery seems to be going well so far. Sounds like your hospital was on top of the pain meds. The hospital we were at (we’ve never stayed here for a longer stay before) was so utterly disorganized and Andrew didn’t receive his meds b/c of it. And it didn’t help that the doctors needed for fulfilling the order were inaccessible for many, many hours (or scared to order it in fear of overstepping superiors.) Ugh!

  3. Sonia says:

    Glad it went smoothly, despite having to fight the doctors for pain meds! I’ve been following your blog for a while now and I’m always happy to see your kiddos doing well. xxx

  4. Nari says:

    Hi Jenn! Just thought I’d check and say Hi, miss you, and glad to see Andrew is doing better with his new feeding tube. Also totally unrelated but whenever it’s a raining day and I’m coming to a red light, I always remember the time (one of our) car’s breaks gave out and we shimmied between 2 cars….miraculously. Looks like God’s still watching over you!

    • earlybirdies says:

      Hi, Nari! I always, always, always think of that day whenever it is rainy and I’m out on the road. How seriously fortunate we were! And not just that one time on the road, either…

  5. ANGEWA says:

    So glad Andrew is doing better with the tube, but sad it had to be a painful process! Miss you!

  6. Our hearts are with you guys. Many prayers and love go out to you! I know God’s heart and goodness is working in Andrew and all of you guys.

  7. It sounds like you made a great decision! It is terrible to hear about his lack of pain meds!

    Glad you are home.

  8. Esther Huh says:

    Hey Jen, thanks for sharing about Andrew. I am glad that Andrew can have a peaceful meal time now, He has grown so much and his face looks like a young boy, not a baby 🙂 i am proud of him for being strong all this time! And also proud of you for being such a strong mom as well!

  9. Alicia D says:

    oh goodness, he is such a CUTIE PIE!!! Blessings to you all 🙂

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