When I called this morning to see how you did over night she said that she fed you at 9 pm and you had one event after taking all 15 ml. She said that for the other feeds you were sleeping, so she just did gravity feeds. She said that you gained weight and you are 7 lb, 2 oz. She also said that one of the nurses we had over on team 5 came to see me but I had just left. Some of the nurses I am going to miss so much. She is one of them.
When I got there you were waking up so instead of getting breakfast like I usually do, I got you out of your crib and held you. I held you for about 25 minutes until it was time to start your diaper and temperature, and then your feed. You did very well for me with your bottle feed. You took all 15 ml with no episode. I held you for a while after your feed.
The doctors actually rounded earlier today and they were starting to go over more information with me about discharge. They asked again if I have changed your NG tube and I haven't yet. I told her that daddy and I discussed going home on a monitor and that we felt more comfortable with one for a while. She said that the case manager would come and talk to me about it today, along with the medical supplies. She said that "it is always good to have a plan" so she said that we are going to aim to come home at the beginning of next week depending on how you do. She wants you to have your eye exam on Monday first, just incase anything changed. She said she would hate for you to have to come back just because of your eyes. However, the doctors keep saying they are getting better, so I am assuming all will be good to go.
For your noon feed, I did your diaper and took your temp again. I gave you your bottle and you took about half of it before falling asleep. We let you sleep and dropped the rest of your feed. You had no episodes while I was feeding you. I went to go eat some lunch and then came back and held you for a bit.
When I came back, the case manager came to speak with me. She gave us two options of medical supply companies, and then said the supplies we would be getting delivered every month. She said that if we needed something else or run out of something, just to call the company and let them know. A representative will be coming before we leave to make sure that we have everything and to go over how to use the monitor at home. She asked if I have changed your NG tube and when I said no, she said to let the nurses know and I would step in. She said that both daddy and I would have to change your NG tube before we were discharged. She also told me to take over the feeds - that means testing your NG to see if it is still in your belly by checking the Ph levels, flushing it, feeding you, and giving you your meds. She said that if I felt comfortable by Monday, I would be good to go. If not, she would get us a home care nurse to help out. The next feed at 3 I would be taking over.
At 3 pm, I did your care again and speech came to see how you were doing. I told her that you have been great and she knocked on wood. She listened to you swallow as I fed you. You took all 15 ml and again, had no episodes. After speaking with speech about follow up and our plan for now, I had to learn how to hook up the rest of your feed, and how to give you your prune juice. The nurse showed me where everything was, showed me how to get everything hooked up, and then what to do when you were finished. We then gave you your prune juice and a flush after that. I would now be doing this every time that I am there for a feeding. I already feel comfortable doing it, and I have only tried doing it once. I think it is because I have been watching it for a little over 3 months. I know what I am doing now.
I left around 4. I was so happy that you didn't have any episodes all day. Maybe this new plan was finally working. I called back at 6:45 pm to see how your 6 pm care and feed went and she said that you took all 15 ml with no episodes. She said that since I left, you have just been chillin'. Hopefully we can make it 24 hours or more with no episodes.
I am excited yet cautious about you coming home. I don't want to get my hopes up like I did last time. It was very hard when you didn't come home. However, since you are doing better this time, I know we are getting close. The nurse told me that we would also have to watch two videos that takes about 20 minutes before being discharged as well. She said that we can watch them anytime between now and next week. She recommends changing your NG tube the same day as well.
We love you and hope you come home soon. We cleaned up our room for you and rearranged some things so it is easier to take care of you. We can't wait to have you here with us. No more leaving you every night. I will see you in the morning. I hope you do well tonight buddy. Sweet dreams!