My nurse Ines was here to take care of me and boy did I give her a workout. The morning started out ok, but I woke up after my first feeding with a little distress and had to stop eating. My heart rated started to increase slowly. I got a nice steam bath which helped me get up some congestion and brought my fever down but that only lasted a little while.
We tried everything to stop my heart rate from going up but it climbed up into the 160s to 210's and it stayed there until almost 4pm. My therapist Siobhan came at 1:30pm today to do a little physical therapy. That helped calm me down for a little but I was back up in the danger zone in no time.
After 4pm, I started to eat again since I had only had 50mls so far today. Daddy and I got to snuggle and eat some food.
We talked to Dr. Gien again tonight and we are going to increase meds again. It is so hard to keep track of all my medications and the amount of food I get. At the end of September, we decided to keep a log of my medicines and food that I get each day. At least every hour I am getting something so we found it easier to track everything in my journal.
I am all changed and ready for bed. I am still so tired from today that Mommy was able to get me dressed in my pjs lying on my back. I usually get pretty stressed when lying on my back, but I was so sleepy that Mommy even had time for a picture. We are all snuggled in bed now and getting a little more food to keep me hydrated for the night.
Good night!
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