Viral's and Feeding Intolerance

Well we just finished an eight day stint at DeVos Children's again. Boo caught another viral infection. It started with a low grade fever that we controled at home with motrin and pedialyte. We hoped that by switching to just pedialyte through the gj-tube before the gut shut down would avoid it all together. Well that lasted all of 2 days. Mito kids are so crazy because one minute he was getting better and playing and the next he was burning up and coughing with dark green bile pooring out of the g port. The ER is always traumatic, there is the waiting room with a million germs coughing, running and crying all over the place trying to infect the host next to thhem. Then there is triage where I know they dont clean much if at all between patients.

There is only one advantage to having 17 ER visits in 28 months, the reception nurses know your kid by name and they don't make you wait in the waiting room or bother triaging you. Heck they practically call up to the floor and reserve a room the moment you walk in. Next they call around to page one of only two people allowed to IV Boo. He has only a couple IV spots left so no one messes around with them. Even with them it's getting harder and harder to get one that will stay good and they clot off within 20 minutes if fluids are not started within that time frame. Jon (our best poker) told us again that his veins are so bad we should consider a port. Ugg. He finally got labeled "viral infection with gut shut down and admitted." Because the hospital was full of cold and flu season patients the only open room they could find was in the PICU. Great, try and explain to visiting grandparents that while yes it says "Pediatric Intensive Care Unit" on the floor entrance your child is not actually a PICU patient. Although, Boo started acting picu when his fevers busted through the motrin and tylenol with ice packs being the only way to keep him at 101. He slept all night and was awake for a bit then slep for the next 16hrs. Freeked me out. Thankfully, the next day he was better (didn't need the ice packs, stayed awake a bit more and they moved us to our usual floor. The next several days were a rollercoaster of 2 steps forward 1 step back. He faught off the viral infection but it took another 3 days and the addition of a motility med to get us home. My thumbs are tired... I'll post about the great port debate later.

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