Tuesday, June 7, 2016

New Plan - June 7th, 2016

I forgot to mention is yesterday's post that you had an eye exam. The ophthalmologist said that you look good and he expects the abnormal cells to go away on their own. He is going to check you again on Monday.
This morning I called the night nurse to see how you were doing and she said that she didn't bottle feed you for the last 3 feeds. I was so frustrated. I didn't ask why - I was going to do that when I got to the hospital. Daddy and I talked about it, and we were going to see if it would be beneficial for me to stay there for 24 hours to see if you had any episodes. We just need more consistency.
This morning I was hoping I would come in and the nurse from yesterday wasn't there. Luckily, she wasn't. We had another nurse that you haven't had before, but I liked her. I did your 9 am care and fed you as well. You took 15 ml (the max you are allowed to take now) with no episodes. I held you for a while and then put you in your bouncer.
The doctors rounded late again. They said that you need to have less events between feeds before going home. I asked when the last time you had one was and she said yesterday. I asked what time and she said 1 pm. Of course. We were at our CPR training and apparently your heart rate dropped in the 50's. However, you didn't desat. The doctor questioned if it was even real. I asked when the last time before that was and she looked and said a long time ago. I asked her again about the events while PO feeding and said since it is so inconsistent, if I should stay for 24 hours and feed you. She said if the goal was to go home on full PO feeds, she would say yes. However, the goal is to just work on the skills at home and NG feed as well, so there is no need. She said that you can have events while feeding, but just not ones that drop into the 50's/60's. She asked if I talked to the case manager about medical supplies yet and I said that someone mentioned it two weeks ago but no one ever came around. She said that was because she needs to tell them when to come and she only contacts them when patients are close to going home. I told her that I got a letter in the mail about an appointment in October for Neonatology and thought that it was late. She said that it was a little late and said that she would fix it. She asked if we would like to go home on a monitor. She said that we don't need it, but she thought that since we have been in the NICU so long that maybe we would feel more comfortable with it. She said she didn't need an answer right then, and to think about it. She said to set our alarms for every ten minutes tonight and that is what it is like coming home on a monitor. I told her we took our CPR and NG Tube training and she asked if we practiced bedside yet. We have not. We have to put your NG tube in once before we leave to make sure that we know what we are doing. She asked if you had your hearing test yet and I told her you did. She said a couple other things that had to be done before going home as well.
By the time they left, we had about 10 minutes until your next set of care. You stayed awake from 9 to 11:35. There was no way you were going to wake up for your feed at noon. Since I had just changed your diaper at about 11:15, they said I didn't have to do that again and that I could leave you sleeping and they would just drop your feed. I had to go eat lunch because I was shaking.
As I am sitting there eating lunch, my phone started ringing. It was the hospital calling. My heart dropped. I answered the phone and it was speech. She started off by saying "nothing is wrong" and that she just wanted to get my permission to feed you since I am always there. I told her I would be right up.
When I got there, she said she just wanted to see how you were doing and said she would rather me feed you since I do so well with it. You had woken up right after I left and so she wanted us to at least try to bottle feed. I did and she listened to you. She explained that we are going to be feeding you a max of 15 ml and for a max of 20 minutes to strengthen your skills. I asked her if we went home how we would know to allow you to do more and she said that we would speak with the team about 2 weeks after we are discharged and we would look at how much you are working and breathing. We would also see if you were having any events. I wanted to ask about your lip and tongue ties, but I forgot. Anyway, I fed you and you had no episodes again and took all 15 ml.
I held you for awhile after that feed and then put you in your bouncer. At 3 pm, I did your care and fed you again. You did well and took 15 ml. After I had already finished and pulled the bottle out of your mouth, your heart rate dropped to 93. That is one that they usually don't document since it wasn't too low and it was very quick.
As I was pumping, the nurse came over and said that case management had called and asked if I would be there tomorrow. Of course I would. They are coming tomorrow to speak with me about my insurance and the medical supply company. Looks like the doctor contacted case management!
A little later the FLC came and told me that she rescheduled the neonatology appointment for you and asked if the date was okay. It was. She left and then came back to let me know that she scheduled the nutritionist appointment as well and asked if the time was okay.
For your 6 pm care, I did your diaper and temp. I fed you and you took all 15 ml and had no events. Now people can see why I may get frustrated when I am told that you have events with every feed. You don't for me, so I don't see why you do for everyone else. Just frustrating!
I stayed until about 7:15 pm. I am so happy that I got to do all your day feeds today. I am hoping tomorrow they see that and realize why I get upset about the inconsistency.
I will be there in the morning to see you. I am looking forward to speaking with case management and getting that out of the way. Daddy and I love you and hope you do well tonight!