I am including the next photo as it shows the new formula we are trying today, Compleat. It is made from real food products instead of being milk based. I hope to transition to blended diet where we purchase a high-power blender and make his food from real food we can then put into his tube, but for now that feels a bit overwhelming. One thing at a time!! Pictured to the left of the formula is the miracle of the AMT Clamp. It has been a sanity-saver!!! I can trust it will hold the feeding bag tubing to the PEG tube hanging out of Garrett so no formula leaks. I am now even able to plug him in to get fed while he sleeps! And that's a huge help considering how many ounces it takes to reach the calorie count he is required.
Can he still eat like other kids?
Yes, he still can and does eat by mouth, but not enough to sustain both daily energy requirements AND growth. Interestingly enough, he seems to be eating somewhat less in the mornings and at night since tube feeding, but more at the lunchtime hour in school. Odd, but we are told it isn't uncommon as his body is relishing every calorie, and eating takes a ton of energy, for him, especially chewing and swallowing. It's like his body is taking some time off and letting the tube help for now. We have been told not to worry since as his body grows and is better sustained, he may start eating more. At this point, food is food, regardless of the method of consumption.
Do you let him eat before you fill him with milk via the tube?
Yes, we always offer him food by mouth before tube feeds. And many times, he will eat via mouth if he wants to while he is tube fed. He will often ping pong back and forth on saying if he is hungry or not, so if he wants to eat by mouth, he is always welcome to do that.
How much formula does he take in?
He is taking in 5-250 mL cans or 1,250 calories of formula per day as we try to get him to a good point for calories.....slowly. This is an art/science that is quite dynamic.
Will he always require this tube, or is it short term?
He had a g-tube when he was about 16 months to 28 months. That one was taken out as he was making great feeding therapy progress, and did not use it for anything for four months. Many times, we have wished we had it back as we watched him struggle growing and eating and taking so many meds and supplements daily.
As for this tube, I think he will keep it for a long time, possibly for a lifetime. While I cannot super-accurately predict the future, I do know one thing: This tube can keep him fed and hydrated in a way that without the tube, only a hospital admission could do. So if he were to get the flu or another illness, we can get things into him in a way that can keep him OUT of the hospital. And while he will HOPEFULLY, someday not rely on the tube as much, if we keep it flushed with water a couple times per day, it will not cause him trouble staying there. At that point, it would be like free insurance! As for his life span, well, that's a tough one. Let's just say we hope this intervention will keep him alive, healthier, as long as possible.
Has this made things easier or harder for HIM?
It has made taking meds and supplements super-easy since he doesn't have to take the yucky stuff by mouth! Sometimes he asks to take some by mouth. I am not sure if that's because some taste good or if we preached tolerance of taking meds and patience for the past five years or because he just wants to sometime. As for feeding? Since he has had the backpack option, he asks to eat that way. I am sure some of that is not wanting to stop playing long enough to eat, but I also sense a relief in his happiness to get plugged in and take the food on the road. The only thing that bugs him is when I have to clean the stoma at the site of the tube. His skin stays a little sensitive, soon, and until it heals like an earring hole at the site, it gets gunky and needs a cleaning with warm water and baby shampoo on Q-tips morning and night. I have ordered g-tube pads to wear between his skin and the tube pieces that keep it from going too far in. He chose Mike and Sully from Monster's Inc., Spiderman, and an assortment from Marvel Comics pads. I look forward to him getting those. For now it's 2" x 2" square, white drain sponges.....fancy word for gauze with a slit to a hole in the middle.
How has this changed care from OUR perspective?
Well, that's a hard one because Grouchy, our extended family and I would do ANYTHING to help this kid stay healthy as long as possible and find relief from the symptoms of Mito. It takes time to add the tube and its cleaning, flushing with water, putting meds through, hooking up feeds, unhooking feeds, and so on. However, I think it takes no more time than it took to chase him down to get him to take meds, beg him to eat, sit with him to encourage him to eat, threaten him to eat, and then who knows how many hours I have spent in worry that he still wasn't growing or getting what he needs. I am in the process of training his two caregivers to use the feeding system, and this summer, my parents will learn. I LOVE the fact I know we are finally coming closer to getting him what he needs!!!
And now the question a couple of folks have been brave enough to ask (and these were very close friends, and it is a super-obvious question most are afraid to ask):
Since September, Garrett has had an appendicostomy so we can put a tube in him to run an enema from the top daily so he can poop on the potty AND he has had a g-tube placed for most of his nutritional needs. Does this mean his health is declining?
It would seem that way, looking from the outside, and while I sometimes get a stomach ache looking at the level of intervening we have done, I don't look at it as disease progression. I consider that we could have kept going with him not having bowel movements for days and days and days followed by poop running down his legs for a whole day per week and wearing diapers 24/7. We could have continued begging him to eat, trying to make enough milkshakes disguising Pediasure so he would eat it, and forcing meds down him, but who was loving that? NO ONE. So I am looking at this like being proactive, although I fear his growth has already suffered, and seeing improved behaviors and sleep, I know we waited too long. But we had to have the docs all on board, and I cannot change the past.
But honestly, it could mean progression, some. His colon had certainly gone downhill. Now it feels all better as we have control of that for now. He has a pretty high number of eosinophils in his esophagus. That's new and not cool. He was eating less and less. That's a bummer. Hmmmm, maybe he is getting worse on the inside, but taking these new measures sure helps him do better from what we see on the outside, so we have to hope it's improving inside too!!!
So there's the update! That was long!! And wait, I didn't even put in a picture of the cutest boy on the planet!! Here is Garrett in the tub with his best buddy, Sammy: