Monday, April 11, 2016

Hoping for Better News - April 11th, 2016

This morning I got there early so that I didn't miss anything. I got there before you had your ultrasounds and before the doctors rounded. I even had time to get a coffee!
I waited for a bit before the ultrasounds happened. It took her about an hour to get all of the pictures that she needed. I had to go to the bathroom so I left the room for abut 2 minutes and came back and the doctors were there. The nurse said that your head circumference went up from last night and is now at 32 cm. They went over all the usual stuff and said that they would most likely tap your reservoir today. They said that you haven't had any episodes since the 9th (no documented ones meaning the others have been so quick and needing no stim so they don't need to document them). They also said that they would most likely make a decision on whether you needed a shunt this week. Other than that, no changes were made, and since the ultrasound tech was still there, we didn't get any results.
Later in the day when I was holding you, the PA came and wanted to tap your reservoir. She said kangaroo care is more important so she would be back later. She did say that both of the ultrasounds were stable, and that nothing had changed on either of them. At three we put you back and did your care. You are now wearing bigger diapers because the other diapers you soak through so much. These diapers are big on you, but at least you aren't soaking through them.
She came back to tap your reservoir around 3:45 pm. She got 10 cc's which is what they like to get when they tap. She said your head felt much better, but the circumference was still the same (32 cm). After tapping your reservoir, I asked the nurse if she ever gave you your lovenox shot at 3 and she said that she forgot. She left to go get the shot for you. 
Around 4 hematology came and said that you were going to come off of the lovenox because there was too much of a risk of bleeding since you were being tapped so often. She said that they would do an ultrasound on Monday to see what is happening with it. She said that since it was stable this time, they think it will still be stable next time, but it could also grow larger or travel. If it is traveling or growing larger, she said there would be no option other than to put you on the lovenox again. At this point the nurse was getting ready to give you your shot so I told hematology that she was getting ready to give it to you so they stopped her. The nurse said "I guess everything does happen for a reason!"
After you got tapped and right before mom-mom and I were about to leave, you had an episode. Usually when you have episodes it means that you need to be tapped, but this time you had none before and now you had one after. As soon as you settled down we left.
When I called tonight, I was hoping for better news. The nurse said that you were having more apnea events, and that the team was at the bedside as we spoke deciding a plan of action. She said they were trying to figure out whether to tap your reservoir again. If they didn't they were going to come up with another plan of action. She said she would call me if they decided to do anything.
Praying that everything goes well tonight and that your episodes subside. We love you more than anything. We know that you will stay strong and keep fighting like the last 6 weeks! See you in the morning Mason!