So much has happened since I last wrote...when the doctor told me that Lily would have a long uphill battle ahead of her it hit me on Monday. Lily was doing well in the morning but before noon she started moaning like she was in pain and started bicycling her left arm and leg and her right arm and leg were tense and held out straight that the nurses and doctor's couldn't even bend them without force. We thought she was having a seizure so they did an EEG and another CT scan on her and the results of both were negative and they didn't see anything abnormal. It was scary though seeing her do that but the doctor's don't know why and said they would just keep an eye on her to see if she has another episode like that again. Thankfully she hasn't since. So on Tuesday I got to feed her again but in the afternoon after the second feeding she started throwing up. She cried some but all her vital signs were good so the doctor's and nurses said her stomach probably has to get used to eating again and all the meds she has been on probably aggravated her stomach. So yesterday (Wednesday) I just breastfed her and supplemented only before we left for the night and she did fine and did fine last night as well. She is crying a bit more than before but it's as expected considering everything she has gone through. So since her vitals are stable and she is progressing they are sending us home!!! Yup we are getting discharged! It was a shock to me when they told me yesterday that we would possibly be discharged today. It seemed so quick and of course we feel unprepared but the doctor told me just to treat her like a normal child and not a 'fragile' child -- easier said than done ;-)
Now as I type this I am waiting for the doctor's to come in and answer all the questions we have and discharge us. I'm scared something will happen to Lily while she is at home but the nurses reassured me that they wouldn't let her go home if she wasn't fine.
Please pray for us that we get through the next 4 days at home until we meet with the oncologist and neurosurgeons to find out what the next steps will be sometime next week.
Happy 4th of July,