After four trips in a week to Primary's Grace has been admitted. Three weeks ago, Grace had a double ear infection and was miserable, but once on antibiotics she quickly returned to her happy self. We started weaning her diuretics and she did fairly well, with her past we knew to go slow. So we went from three times a day, to twice a day for a week and then the following week we went down to just once a day. After being on just once a day diuretics for a couple of days, Gracie started needing more oxygen---Mother's day night she went from 1/4 of a liter to 1 1/2 liters. I was able to wean her down to 1 liter and that is where she stayed till Wednesday night.
Once she was put to bed, her sats dropped down to the sixties and even after increasing her oxygen back to 1 1/2 liters she still only was sating in the low 70s. I felt I needed to take her in, so 10:30pm we take her in, only to have them titrate her oxygen down to 1/2 liter and send us home. I felt stupid! I got her home and again she sated low, so I thought our pulse oximeter was broken and had them bring us a new one. Gracie sated in the mid 80s when we first hooked her up but that night again she was sating in the 60s and I couldn't get her sats up, no matter what I put her oxygen on. As I sat on her floor, in desperation I felt impressed to hook her up to her portable tank and see what happened, she sated just fine on 3/4 liters of oxygen. Turns out her concentrator was acting up.
After all that was taken care of, Gracie did great until Friday night/early Saturday morning, having a fever of 104---by this time I didn't know what to think, we had increased her diuretics back to twice a day---so into Urgent care we went. They couldn't find anything wrong with her but wanted to give her a shot of Rosefin (an antibiotic) I didn't feel comfortable with this and after calling the cardiologist on call he didn't either. We decided to watch her since she hadn't had any more fevers and if she had any more I would take her up to Primary's for a total work up, then Cardiology would follow up with us on Monday since she had an appointment.
Well no fevers for two days, in cardiology on Monday it seemed as if Gracie had developed a plural effusion so we started over with her diuretics at three times a day, since she was still on 3/4 liter. Over night Gracie got worse, had high fevers and needed 1 1/2 liters of oxygen again. After getting the run around with cardiology and not being able to talk to anyone, I brought her up to the ER yesterday afternoon. Lungs were worse, we were sent home and told to watch her again. Today I had to up her to 2 liters and was really getting frustrated. I called cardiology and demanded to talk to the nurse, since I knew I wouldn't be able to talk to her cardiologist directly (which is stupid). I couldn't talk to the nurse but was told she would get a page with and urgent message and she should call back soon. An hour later and increasing to 3 liters of oxygen she calls back, I tell her what had been happening and told her that I needed to talk to Dr. Jou immediately or else I was just going to go to the ER again--he called me back in 10 minutes and decided that we needed to admit her and watch her for a couple of days, but first we would do another echo and see if the heart was causing us problems. Though they suspect more collateral's that will need to be coiled again soon, the heart looked fine. If after this illness passes and Grace still needs more oxygen we will be going to Cath lab for the 5th time.
So the conclusion was that Gracie probably had pneumonia, but when we admitted her to the floor, they said they were going to test for RSV and I mentioned they had done all that in the ER the day before and the results...CROUP!!! So we will stay for a couple of days and get Gracie over this, watching her oxygen needs closely and hoping we won't get worse and need to go to the PICU because we all know once she is there she doesn't ever want to leave. Gracie is currently on 2 1/2 liters and we'll just watch her and hope that she has reached the peak of the virus and will get better and hopefully come home in a two to three days.
This has been such a new experience, we have never been hospitalized without having a surgery first, I kind of have to reassert myself and let the staff know I do know what I am talking about. But hopefully it will go well and we won't be here long enough to hate it.
Just watch out all you heart moms, the nurses her have said that they have seen lots of Croup around the last few weeks, more than normal.