Thursday, September 16, 2010


Pray for Abe. He is still inpatient in Phoenix and it is horrible. Staff does not believe me when I tell them his oxygen level is low. How would they know it only alarms in the room and not outside. I think today I will keep the door open even though he has the flu and I have symptoms too. He is still vomiting,has foul smelling diarrhea which I hope is not C-diff and has lost 2lbs. Pulmonary talked like we would go home Friday. Seems like they tthink we are here because we want to be. We are supposed to be in San Diego. Which place would you rather be, a hospital or Sea World, the zoo, Cheese Cake Factory. We did not come all this way to be stuck in a hospital that barely has any hand gel. I guess Children's in Seattle has the title "World Class" for a reason. Based on our experience now we could never move to Arizona. Some nurses have a knack to work with kids and some would be better equipped to work with prision immates. Thankfully everyone has a different personality to care for patients. I wanted Abe to have Labuterol due to desats and cough but they would not give it to him because he sounded clear. They did not see or hear the desats to 86% on room air nor hear the coughing afterwards. Parents know their child better than any other person ever will. I will discuss with pulmonary today. If we were at home and his monitor kept alarming off and position changes would only help temporary and he started coughing I would give the Albuterol inhaler. Why the heck won't they give it here??? There is a doctor's order for it. One thing I don't like about admissions is I have no control over medications. Next time I think my kid needs Albuterol and it is refused to us, even with a doctor's order I am asking to speak to charge nurse. Please pray our next nurse has more patience to listen to a mom of a complex kid who also has been an RN for 11 years including peds nurse and has worked in health care since 1992.

Friday, September 10, 2010

7th admission-

Bummer that is all I can say. Abe has been vomiting, irritable and had a fever so we brought him to Phoenix Children's Hospital on Wednesday night. This hospital is way different than Seattle. He is still vomiting, treated with IV antibiotics for ear infection. they are also looking at his VP shunt, potential VP shunt failure or infection. I am waiting for the results of the abdominal ultrasound to see if a cyst has developed at the tip of the shunt. I really want the neurosurgeon here to get in touch with neurosurgery in Seattle since I trust them and they know my kid and his complexity. I will make sure to get a copy of ct films before I ever leave town again. Might have to cancel San Diego trip. I need to get back to Abe's room so I can talk to neurosurgeon. He is currently sleeping in his swing but was refusing to eat ice cream, yes my kid was refusing ice cream so you know something seriously is wrong. Pray for him and for me. The nurses last night were extra quite so we could sleep.