Day Fifty Three and Fifty Four

Nothing is ever easy....I say this to myself at least 1x per day. I'm not sure why I was picked to take on the monumental task of taking care of a child with Short Gut but I have accepted it and roll with whatever comes my way. However, today was one of those days where I kept asking "why me? why me?". No one answered but I still asked.

Anyway, this weekend did not go as planned. Friday Daniel awoke at 3:00am only to start throwing up. He continued to do this throughout the night and by morning he had a fever. Needless to say, there was no feeding him so off to the store we went to get Pedialyte and hooked him up to his pump for the day to keep him from getting dehydrated. He was a miserable mess the rest of the day and all through the night. About 2:00am, he awoke with a temperature of 102. I went ahead and gave him some Tylenol. Remember, he can only have 2 doses of Tylenol per day so I have now used 1 dose and he can't have another until bedtime Sunday night....oh my! He was up and down the rest of the night and by morning his temperature was still holding at 102. He was beet red and hot to the touch and I wasn't sure what to do for him. I found an urgent care in the area but they didn't open until 4:00pm and by now his temperature is up to 103. I took him to the local emergency room where bloodwork was done and a chest xray. All came back negative for any bacterial infection so he just has a virus and will need to get over it. We got onto the phone with Cincinnati Children's GI who called our GI doc at home and he agreed that since the temperature was now up to 104 that we needed to give him some extra relief. Because the temperature is so high, we are giving him 2 doses of Tylenol and 2 doses of Motrin. Nothing more per doc. He has had 1 dose of Tylenol and 1 dose of Motrin today. The temperature was going down but now it is creeping back up so I'll have to wait and see what happens. We don't want to give him anything unnecessary because of liver/stomach damage. Let me say this, the hospital was nice and the doc was nice but it is extremely scary being so far from home and not being able to take Daniel to his regular docs. This was not a children's hospital and the doc didn't even know what Short Gut was.....excuse me? I had to explain and then explain to the nurse why I was feeding Daniel with a feeding tube. Don't nurses have to know this before they graduate????

Onto our next hurdle of the day....I was changing Daniel's pull up and he had his backpack on. When I went to put the new pull up on, he had his arms hanging at his side. In a split second, he lifted his arm and got it caught in his feeding tube line and managed to pull his feeding button out with the balloon inflated. The whole thing came right out. Daniel is screaming and after my initial 1 second of freaking, I camly get my supplies, deflate the balloon and replace his button. I just want to go home...I don't want to be in Richmond VA anymore! He's doing fine and the button is working fine so everything will be okay. Can I ask again, why me?

Well, we won't be going to clinic tomorrow. We have to be at least 24 hours with no temperature before we can come back so we'll have to wait to see if we go back on Tuesday or not. I'll let you all know tomorrow how he is doing.

Good Night....Sleep Tight!!!

-Angela-