In the middle of the night I went to see how you were. She said that you had a cluster of events. She also said that your urine output was way up and that you were doing better with your feeds - only getting a residual of 1 ml.
I had to be out of the sleep room by 8, so I came back to your room at 8. I am glad I got there when I did because they had a hot pack on your left leg - and I know what that means. They were going to put an IV in your left leg when there is a sign that says "No LLE BP's or Sticks." I told them that you could not have an IV in that leg and so they took off the hot pack. The put an IV in your arm instead.
The doctor came and said that since you were having events he wanted another X-Ray to look at your belly and the placement of the ventilator tube. I asked him if you could be having events simply because you do not like the ventilator tube and he said yes but they didn't want to take it out and have to put it back in if you didn't do well without it.
The doctors came and did rounds about 15 minutes later. You had a residual of 4 ml - the full feed they gave you three hours ago. The doctor said to throw it out and to skip this feeding and to feed you again at noon. The doctor said that it is most likely from the morphine. The X-Ray showed that your tube was still low, so they needed to fix that again today. The doctor said that he hopes to have the tube out tomorrow or the next day.
After fixing the ventilator tube, they got another X-Ray to see if the placement was better. They noticed that your lungs weren't expanding as much as they should, so they upped your pressure from 6 to 7. The placement of the tube was better, but it could be moved up more. They decided since you weren't having many events that they were going to leave you alone.
At 3 they did your care again. You do not like getting touched! Any time they do your care, you have some episodes. You only had a residual of 1 ml, so they are going to continue your feeds. You are peeing a lot now, so that is great. However, I noticed that you were pale again. Since your nurses were not here yesterday, I went to go get a nurse that was so that she could give me her opinion. She said that you looked pale as well, so I told the doctor. He said that he didn't think your hemoglobin would drop that quick in two days, but he wanted to get a CBC on you just incase. Your hemangioma had a black line in it, so I told him about that. He said that some develop purple spots throughout, but he would keep an eye on it.
I needed to get out for a bit because I hate seeing you with the tube down your throat and being so pale. It is hard to see you like that. I went to go get my nails done with mom-mom, and then I was going to call and see how you were doing before the nurses changed shifts.
At 6:45 I spoke with your nurse and she said that the CBC came back and they decided they were going to do another blood transfusion. I assumed your hemoglobin did go down if they were going to transfuse you.
Daddy and I came back to see you around 7:30. You needed another IV in order to get the blood transfusion and the NICU team tried but couldn't get one in. The IV team came (one person) and tried to get an IV in your arm and in your leg and couldn't get either. She asked if she could put an IV in your left leg and the nurse said no. The person from the IV team asked how long you have had the clot because she said she could put an IV in if it was over 11 days old. I did not feel comfortable with that. She said that she could put one in your head as well, which I did not feel comfortable with either. She told the nurse to call the NICU team to see if they could get approval for putting one in your left leg. The doctor came to your bedside and said that your hemoglobin isn't super low so they still had some time - we could wait until morning until someone else could try to get the IV in, or we could try again tonight. I told her that I did not feel comfortable with putting an IV in your head or your left leg and she said she agreed and wanted to wait until the morning.
Daddy and I stayed until 10:15 and then headed home. They were going to get a blood gas tonight to see if they could wean your RR rate down again (it was at 20) and then once you were at 15 they were going to see how you were doing and then if you did well on 15, they were going to extubate you. Hopefully when I get there in the morning they have already extubated you, and if not, I hope they do soon after I get there. I know you hate that tube so much and it kills me to see you with it in.
We love you so much and hope you have a good night. We know you want that tube out soon. (Just a hint - the doctor said if you were to get it out somehow, they wouldn't put it back in! Yank it out buddy!!!) I will see you in the morning!!