Last week we had to go to the ER because C started having trouble eating and was breathing fast. They admitted him onto the cardiac floor for observation overnight and we had our lasix adjusted and digoxin added in.
It seems we caught some kind of bug down in the ER while we were there :( C spiked a fever tonight and our pediatrician sent us to the ER. We went to the children's campus that does not have a cardiac floor because we were given the impression that they'd do a CBC and probably send him back home and that we were just being cautious. The pediatrician told us to go the the campus we went to... They didn't tell us that if an infant has a temp over 100.3 then the infant is admitted for at least 48 hours. So... the ER doc talked to cardiology and cardiology said C had to go downtown to the cardiac floor since he was going to be admitted. Of course, since we were already at the south campus they wouldn't let us drive him to downtown, we had to be transported by ambulance to the downtown campus. So now we are probably some crazy amount of money poorer and we're back in the hospital for another 48 hours. He was on a stretcher with monitors during transport. They actually took all my bags and luggage with us which was very kind of them. I did help the guy driving the ambulance with his homework while we rode between hospitals. So at least I was useful.
I really just want a break... It has to get better, right?
We found out we had a single umbilical artery, then we found the heart defect, then I broke my finger, then I got gestational diabetes, then I had to go for twice weekly NSTs, then I broke my toe (and went into labor that night) then C de-satted in the first 30 hours so he had to go the NICU, he was in NICU for 9 days, then our air bed stopped holding air and we had to buy a new mattress, then at 3 weeks his heart failure got worse and he spent a night in the hospital for observation (during which time we missed the original bed delivery), then the dryer broke and shocked me when I touched the door we had to buy a new one, then C got a fever and we're now back in the hospital with a fever of 101 :( We'll still be here when the stupid dryer is supposed to be delivered... I wonder if they will call ahead like they are supposed to... In vaguely related money news, insurance called us and told us what our responsibility would be for the first hospital stay (9 days in NICU at birth) -- we will pay $1200 for the first hospitalization.
I'm very tired :(
…….. We have now been in the hospital for about 20 hours. I have had 3 hours of sleep over the course of the day and I feel vaguely better. Brighter days are in the future. In happy news the cultures have not grown yet, decreasing the liklihood of bacterial meningitis or sepsis. Also, the cardiologist said while we are here she wanted to stop the Sodium Chloride and Potassium Chloride because she's not sure they were ever needed in the first place. So we may end up with 2 fewer meds out of the trip. Those things are both pretty cool. Oh AND we haven't had a single nurse that I did not like... they have all been absolutely awesome!
It looks like he will not qualify for SSI/Medicaid which is a bummer. We're hoping to find some way to waver him in on Medicaid once we are denied.
Life continues and I have now had 3 hours of sleep in the last 24... That’s pretty good... right? The nurse just came in for shift change and said they think we'll be heading out on Sunday. This is also a good thing.