Sorry it's been so long since my last update... Nathan's been trialling 3 foods (potato, chicken, & rice) for the past 6 months. This is his second attempt at trialling these foods. Things were going great from the start when we added potato in the beginning of March. Six weeks later we added chicken, and he vomited once a week for the first 3 weeks of the chicken trial. I talked to Dr. Williams about it and he felt we should continue on with trialling it and chalk it up to being a random coincidence. So that's what we did. We had another appointment with Dr. Williams on May 20th and Nathan seemed to be doing okay with both potato and chicken so Dr. Williams wanted to add one more food before the next scope. He gave Nathan the choice between rice and apple, and Nathan chose rice. I wish I had taken a picture of his face when Dr. Williams told him he could trail another food. It was as if he had just been told that he was going to Disney World the next morning. Pure excitement! Priceless and oh so heartbreaking all at once.
The vomiting stopped after that 3rd week, but around the beginning of June Nathan began refusing to eat chicken. At first I thought he was just being a typical picky 3 year old, but after about a week of him refusing and choosing his EleCare over chicken and complaining of it hurting his tummy we decided to stop pushing it.
Another variable to the puzzle, is that Mark and I decided to stop the erythromycin in the beginning of June that we had been giving Nathan four times a day since March for his delayed gastric emptying. In hopes that maybe the delayed emptying was a flukey thing and that his little stomach would empty just fine on it's own. All seemed well but gradually Nathan was refusing to eat any food or drink his EleCare for most meals of the day and his g-tube was leaking like crazy again by July. A good day during this time would be him drinking about 10 ounces of EleCare and having 4-5 bites of food for the entire day. Nathan needs 36 ounces of EleCare to maintain the calories/nutrition his body needs to grow. We resorted to hooking him up to his feeding pump during the day and occasionally at night to get his nutritional needs met. Nathan would tell us that his tummy was full when we would try to get him to eat or drink even when there was no way it could/should be. He also vomited several times, so we started him back on the erythromycin on July 17th.
By August 1st he had his appetite back and would eat potatoes and rice but would refuse his other safe foods that he used to love. A couple days later he developed cold-like symptoms and a very hoarse voice that he even lost completely at one point. I took him to the pediatrician on August 6th and he was diagnosed with Tracheitis. So we started him on a steroid and antibiotic. Nathan seemed like he felt better about 3-4 days later, but his appetite still hadn't returned. Wednesday August 14th, finally he was hungry! The boy ate potatoes, rice, and raisins like nobody's business all day long. He still won't eat his green beans, carrots, pears, bananas and we're not sure why. Maybe it's just typical 3 year old behavior? Who knows.
In the past few days is appetite has been hit or miss. He'll tell us he's starving and ask for something to eat. Which breaks my heart, because even though he isn't "starving" thanks to his EleCare and feeding tube, he literally would be without it. We'll make him something he asks for and then he'll say he's not hungry. "I'm just good mama.", is his usual reply when I set his food on the table when he's having an off day. So we are really, really, looking forward to his scope this coming week. We aren't too optimistic that it's going to be a passing scope, but are trying to remain hopeful. Nathan's symptoms are so sporadic/atypical that it makes it so hard to tell what's going on.
Your thoughts and prayers are greatly appreciated as Thursday rolls around. Even though this will be scope #6 for Nathan, it doesn't make it any easier for us to hand him over to the doctors. In fact, I think it gets harder each time knowing that there are risks with anesthesia and the endoscopy itself. It's hard to not wonder if this will be the time that something goes wrong. For now we'll remain positive and remember: Proverbs 3:5 Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your paths straight.