I should be sleeping.
I think that the delicious McDonald’s sweet tea, at nearly 10pm, was a bad idea. I had been living on Mountain Dew and bottled water for 4 days and the Dollar Menu at McDonalds was calling my name as we made our way from Baltimore, back home to Cumberland.
But anyway, we are HOME. and I am WIRED.
So where to start?
Corrigan’s ammonia came back at 30, this evening, and he is slightly anemic. He is always slightly anemic but now that we know he has a peptic ulcer, well it might explain that.
Speaking of the ulcer(and polyp…polyp is a funny word, no?). The GI Doctor stopped by before we left with news from pathology. The polyp is benign and, most likely, was on its way to becoming another ulcer down the road. The ulcer itself did not test positive for H Pylori (thank goodness?) so that rules out a bacterial reason for its existence. I am a bit confused about how a two year old ends up with an ulcer, and am inclined to believe that it is related to the scavenger medicine that he takes, but no doctor will tell me that my hunch is true.
My thought is that is because they do not want parents to not give their child this medicine and I understand that. There really is no other choice (though a new drug is coming, it is in the Stage III clinical trials right. now.) to prevent the waste nitrogen from becoming toxic ammonia so the side effects are probably minimized in order to not sway a parent from discontinuing the proper use of the drug.
Or I could be wrong.
Maybe he has the stress levels of an air traffic controller and it is eating a hole in his guts.
Considering the fact that nearly the only thing that Corrigan eats is yogurt (3 containers a day) I cannot fathom what his stomach/intestines might look like had he not be full of yogurt culture and probiotics.
The plan for Corrigan, regarding his ulcer, is a combination of two meds. One that coats the stomach, 4 times a day, and another that neutralizes the acid, twice a day. Both for several weeks.
In 12 weeks we will return to Hopkins for another endoscopy procedure to see if the ulcer has better healed and perhaps travel further down, into his digestive system, to examine more area. At that time he will also have his PEG tube removed and his Mic-Key button installed (hooray!)
That means more anesthesia and more hospital time but we need to try and figure out what is going on with our little man.
Two-year olds and ulcers, I still cannot get over that.
(these photos are really red. they were taken with my little point and shoot and I am way too tired to correct the white balance tonight)
The gtube is working great. I had a few chances to get everything hooked up, and flowing, and tomorrow the local medical supply people are coming out to bring us Corrigan’s cool backpack pump and do some more training.
We also did a gravity feed. Ugh. Poor kid is not used to being “full”. In fact, he probably has never been full at all…so the quick rush of formula, and the large volume too, made him sloshy. He vomited. I was pressing the shutter on the camera when he did it. He was, literally, smiling one frame and puking the next…I have the photos but I can’t share them. Poor kid.
All in all I have to say that my expectations for this hospitalization were so far from reality I should be ashamed of myself. In fact, I will admit that I was actually crying on Saturday evening because I just knew how awful it was going to be to try and keep Corrigan contained in a crib/cage for 4 days and was dreading it so much that it brought me to tears.
What actually happened was that someone snuck in and replaced my child with a doppleganger…he looked like Corrigan, he smelled like Corrigan but he behaved like some sort of chilled-out, cherubic kid that I had always heard existed but haven’t seen in a long long time. ( Yeah, we were spoiled with Connor, I know. Whew!)
Cor’s feet did not touch the floor once from 6am on Monday until 5pm on Wednesday and I cannot get over how well-behaved and pleasant he was for the duration of his stay. This from a kid that has two speeds, “sleep” and “sprint.”
Sure he had moments of frustration and wanted to be held so we squished ourselves tightly to the one side of the crib that allowed us about 12 inches of cord to snuggle him, but for the majority of the time he watched his videos, played with new toys that we smuggled from the playroom and…when under the influence of morphine…spent hours examining the front and back of his hand.
In sloooooowwwwwww motion.
I didn’t give Corrigan enough credit, my expectations were too low and I need to stop doing that. What I have learned, over the last few days, is that I have one tough kid. A kid that has a nasty ulcer in his tummy and doesn’t complain…that took two doses of pain meds and then has needed nothing at all for the last 24 hours…that went 61 hours without a bite of food or a sip of anything by mouth…that endured needle sticks in his chest, both hands and both feet and managed to smile minutes after it was all over…that came out of surgery with a punctured tummy and hardly complained. My boy is amazing and his strength during the stressful moments is pretty inspiring.
Little Tank is a fighter and I am so proud to be his Mama!