Two weeks from today, Mason will be having a gastrostomy tube (G-tube) placed in his stomach. Mason's therapists and neurologist have been hinting at this for awhile but we finally made the decision last month after meeting with a nutritionist and pediatric gastrologist. Although, Mason can swallow - his swallow is weak. A year ago, he could drink a six ounce bottle in one feeding. But now on most days, he can only do about 2-3 ounces before tiring out and needing a break. The low muscle tone throughout his body is most significant in his head, neck and trunk. Therefore the process of eating and drinking is pretty exhausting and since it takes so much energy for him to eat or drink - he burns a lot more calories doing these activities than most kids his age. For all of these reasons, he has gained only a few ounces over the last six months and most days he is not consuming enough liquids to maintain proper hydration.
So right now, we are in nesting mode... making preparations for the surgery, making plans for Henry and getting things around the house organized so that we can minimize the chaos and clutter when we come home from the hospital. The procedure itself is only 30 minutes but Mason will need to stay at least one night (possibly two) so that the first supplemental feeds can be done after the G-tube has been placed. Once the feedings are going smoothly we will be able to go home. And then the fun part starts :) Feeding tubes are actually not that complicated from what we've been told and all of Mason's care team has told us that we should see a big change in his energy level once he is getting the proper nutrition he needs. We are excited to see the weight gain and the new energy that this feeding tube will bring Mason over the next few months!
For more information on G-tubes - click on the link located on the right side of my blog page.
Keri, How did surgery go? Thank you so much for this blog. I really admire the way you are handling this challenge. You are a strong and loving momma. Keep us posted.
ReplyDeleteThanks Jen. This morning's surgery went well. Mason is still pretty out of it right now. Hopefully tonight we will try his first tube feeding. If all goes well we can go home in a day or two. Thanks again for reaching out. Hope you guys are doing well. Hugs to your family.
ReplyDeleteI'm so glad you are putting this information on your blog so I can learn about what Mason is facing and how you all are doing. I see in your comment that surgery went well, I'm so glad. Speaking from experience, the sooner you get out of the hospital the better for your sanity. Evie didn't do much sleeping there.
ReplyDeleteI wonder if you'll notice the difference with the g-tube right away. I would think he'd start feeling pretty great being hydrated and getting good nutrition.
I hope you update when you can!