Still at the hospital

As some of you already know, Evan was admitted to minneapolis childrens again last week friday. After we came home the first time, things weren't good, and continued to get worse. On the J-tube drips he was very uncomfortable, not sleeping hardly at all at night or during the day....which led to easy meltdowns, and personality changes that we'd never seen before. He continued to vomit, even though his stomach wasn't getting any food, 5-7oz of gastric juices at a time, and had TONS of watery diarrhea, nothing we did could keep up with it, and Evan ended up with a rash so bad it was bleeding into his diaper. The good news about all of it was that he was gaining weight....but stephan and I were obviously not pleased with the costs of that weight gain to Evan's total well being.

Since being admitted back at Childrens, Evan has had a central line catheter placed in his right arm called a PICC (peripherally inserted central catheter), he had to go under anesthesia again to have this placed, but we're thankful the diligent anesthesiologist succeded and he didn't need a central line in a more uncomfortable place. He's been getting his nutritional needs through it. The idea was to give his gut a rest, because something must be irritating it, and to start introducing gastric feedings gradually as he'd tollerate them. The other thought was that the new J-tube might have been too large for the outlet to his stomach, causing things to back up. The initial plan was to place small amounts through his j-tube while giving his gut a rest to keep it from "going to sleep" so he was to get 1 tsp per hour, even this was causing him pain, and keeping him from sleeping. One of the nurses pushed a medication through it and he screamed, and every time the pump engaged, he cried. She called the resident, who felt a spasm in his abdomen, and ordered the j-tube off, and Evan slept. We tried small amounts through the g-tube, which he tollerated at first, but then started having some of the same problems with, and we couldn't advance to anything over 1oz in 2 hours. Then they tried the j-tube again,...same song and dance, and FINALLY the j-tube was pulled out. Thursday morning Evan came down with a high fever near 103, we gave him tylenol and he came down slightly, then up to 104.2 in the span of one hour, the night before his diarrhea was so bad that the doctors had ordered fluid bolus replacements for each loose stool. So we were moved to an isolation room, and he was started on potent antibiotics.....the doctors said that because he had the PICC line, there was a possibility of it being the source of the infection, and until they knew it wasn't they would treat him as if it was.....hence the antibiotics. That morning Evan just layed on me and moaned when his fever was high, and in typical Evan fashion, as soon as the fever broke, he started playing. His fever went up and down for the rest of that day and the next, it hasn't been up again since last night so yeah! He had blood drawn to see if the infection was there, a urine sample taken, and 3 stool samples........Everything is coming back normal. Even his white blood cell count was normal at 6.5, which I thought was really odd having a fever that high. Stephan and I were starting to get a bit frustrated, because the only answer we were getting from his doctor was that he had reflux, even though all the tests they've run show no signs of reflux. He was getting worse not better, and the only idea we heard for awhile was to put him through a surgery that would make it impossible for him to vomit. We felt like the reason for his vomiting wasn't found, and that reflux didn't explain the diarrhea etc. and he needed more of a work up. We feel like he's gotten worse since he started on elecare, and are trying him on breastmilk again, but he's only taking 1/2 of an oz or 3 tsp every 2 hours, and still vomited 2/day. And of course Evan through out something new tonight.....he started projectile vomiting. Twice today he's shot his vomit across the room, and even though we had only put about 3-4tsp into his belly 2 hours before the vomit, he puked up about 5oz. The doctors now agree there is something else going on, more tests have been ordered, hopefully they find something to help Evan start feeling better. He's also been having a dry cough throughout the day. Don't feel too bad for Evan though, ....he's so amazing to me....he has all this stuff going on....and he's talking, and walking (holding on to fingers still of course), and flirting with the nurses, watching elmo, playing patty cake, and so big, and getting into his toys etc. Now that his fever is gone, the only sign I saw that he's uncomfortable was he woke up 3 times in his nap with a sharp scream, but was easily soothed back to sleep, and a little crying at the end of a bad vomit, and he's not intersted in eating or drinking anything by mouth. Otherwise he's Evan as normal.
We are unable to update the blog from children's because their security stops us, Stephan is staying down with Evan, and I am alternating being up in duluth for work, and driving down to be with them.