Thursday, July 23, 2009


On Monday morning, Harley threw up blood clots. Cameron called 911 right after calling me to come home. I raced home and arrived just as the fire truck was pulling up. Harley seemed to be okay other than throwing up blood; she was acting normal and looking around at all the paramedics. It was 10-15cc of mostly clotted blood so they decided to take her to St. Joe’s Hospital (at our request).

In the ER they said she was dehydrated and wanted to start an IV for fluids. They poked her and poked her but couldn’t get one started. They even had the SWAT nurse, supervisor and another nurse from the PICU come to the ER and try to get an IV started with no luck. At this point they gave her fluids through her G tube for lack of anywhere else to give them to her. Then, they had phlebotomists come from the lab to draw blood from Harley (2 of them) and they poked and prodded her even more with no luck, either. The ER doctor then came and tried to do a central line IV in her thighs with no success (he even used ultrasound to make sure he was poking her in the right place). At this point they said they would have to basically put an IV in her knee cap (straight in the bone!) to get her fluids because they’d exhausted all their other sources unless the PICU doctor had any other ideas. He ended up coming down to the ER from the PICU and put a central IV line in her neck, first try. Poor baby didn’t have any pain killers and STILL did GREAT! After that they were able to draw blood so they could do the lab that would tell if she needed to go to the PICU or a normal room; we ended up in a normal room.

Of course since we already knew everyone in the PICU on the 4th floor and on the 5th floor pediatric unit they would send us to the 2nd floor where we know no one. It’s been okay on the 2nd floor, though. WAY more confusing on where to go (we still have to stop and ask directions!), but we can handle that. First night we were in a 3 patient room with another family (that had NO bathroom in it; we had to walk past the nurse’s station down the hall and use a really short toilet for kids) and the second day I asked if we could move next door because 1.) It had a bathroom and 2.) The baby girl that was in there was discharged. Our nurse talked to her supervisor and got us our own room (a 2 patient room, but it’s all ours’!) with our own bathroom & its right by the nurse’s station! Only bad thing is there are no cots on that floor so that night Cameron & I slept uncomfortably on the couch until we woke up in the middle of the night and Harley’s nurse said she brought the chair from our old room over for us. How sweet!

Anyway, back to Harley. She was dehydrated with low levels of potassium and sodium, so she got bags of fluid for each and her levels went up by that night/ next morning, only then she was bloated from so many fluids so rapidly (and it didn’t help not getting up and moving around like when we’re at home- I requested physical therapy, but my requests are still unanswered. We’d do it ourselves, but with the IV in her neck it makes it more difficult.). We saw the neurologists, who were concerned that her special formula for seizures wasn’t producing ketones in her urine like it’s supposed to do. They suggested the geneticist evaluate her for a metabolic disorder, and as of now she doesn’t have one (thank goodness… poor girl has enough issues!). They are now in the process of switching her over to normal formula because her seizures are pretty well under control without her urine testing positive for ketones anyway. The neurologists are also re-evaluating her meds (FINALLY: only took Harley being admitted into the hospital to do so!) and I’m hoping we’ll be out of there in a few days. I work Friday night and Saturday morning to make up hours I’ve missed this week, so I’ll be able to update then, too.

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