I’ve had several people ask, so here’s a little update on Apollo and his g-tube. It has been extremely painful for him, and he was pretty much miserable until he began antibiotics over the weekend. His g-tube site is just being a bit more stubborn than most when it comes to healing. Personally, I think that Apollo’s poor sleep and constant hunger lowers his stamina and is making it harder for his body to heal.
I’ll be honest and tell you life is very rough over here right now. I have added four hours of tube feeding to my list of things to do each day. Apollo is tube fed at: 7:00, 11:00, 3:00 and 7:00. I clean the site after each feeding which brings on screams of pain from Apollo. He yells, “Stop please!” and “Owwwiee” the whole time. He’s an exhausted, sobbing mess when I’m done.
And, of course, life for my other children hasn’t stopped. Tuesday I had to drop Adalia off where she milks cows at 8:15…when she was done, I picked her up and drove her 20 miles in the opposite direction to fill out paper work for her community college classes in September. I came home and had an hour to get Apollo packed and ready for his appointment in Bellevue (2 hours away). I needed to pack lunches for all of us going (Me, Tilly, Hezekiah, Tucker and Apollo), normal toddler stuff, plus Apollo’s pump, formula, antibiotic, etc.
We left at 11:30 for a 2:00 appointment. Then we went to the LEGO store then arrived home about 6:30. This was the day after I packed up all 11 and headed to the zoo after Apollo’s 1:00 appointment in Seattle. Yeah, it’s busy and crazy.
His feedings are no problem when I’m at home. But between his doctor’s appointments and ten other children in the home we can’t always stay home. So far I’ve tube fed him: at the zoo, driving down the freeway, in the mall and at Costco. It makes life interesting, to say the least.
When I weighed Apollo he had gained four ounces in the ten days since having his tube placed. Not exactly a number to jump for joy over. He’s gained a total of one pound seven ounces since his double aortic arch division two months ago.
The new accoutrements of our life. A pump, IV pole, syringes, bags and a month’s worth of high calorie formula.
The worst part for me has seen the pain this is all causing Apollo. Saturday before we took him to the ER he was bent over in pain. I couldn’t hold or move him without it hurting. He would wake in the night crying out in pain. That part is taking its toll on me. It is so painful to have the site cleaned. Sometimes I wonder how much pain I can watch him suffer through. It’s been non-stop surgeries and procedures since December.
I’m pretty sure once his site heals, I’m going to love the tube. There is certainly a comfort in knowing he is being fed. Now that he is on antibiotics for the infection, he seems to have more energy. He seems happier. He sits and eats at meals better than he ever has in his life- probably because he is no longer starving and frantic for food. We are also able to give him all of his medicines through his tube…sometimes even when he’s sleeping, which is awesome!
I keep reminding myself that the tube is to make life better, not easier. Apollo is now able to get the calories he needs…without burning them to eat and breathe at the same time. Sometimes, between meals, it is easy for me to forget that his anatomy isn’t fixed…His eating issues aren’t fixed, he just now has other options. Then I sit down to feed him food and it all comes rushing back. He still has trouble swallowing. He still refuses most food. It’s still a struggle. Every single day.