|I like how she crosses her arms. First time I noticed it.|
|Learned to keep her pacifier in already.|
|Trying to cool off from the fever.|
|The nurse is taking her temperature. Bela hates this more than anything!|
I, Laura, spent the night last night. Well, I got to sleep from 4-8:30am. Bela did not get her PICC line placed yesterday because the line kept getting kinked up in her neck and wouldn't go down next to her heart. But the night nurse last night and the day nurse today both were able to draw blood from her central line on her chest. But they'll still have to change that central line in a couple of weeks because it is the source of some infection.
Last night she didn't cry but we could tell she was uncomfortable: very fidgety and wouldn't relax. So after giving Tylenol for fever and Morphine twice, the nurse also gave her Ativan around 4am and then she went to sleep until about 12noon today.
She is still running high fevers, on blood pressure meds, Lasix, etc. Her blood pressure was a little bit better two nights ago though when no one spent the night there. Last night the nurse was the same as two nights ago and she said that she didn't have to give her any blood pressure meds two nights ago, but last night she did because she was in pain. You can see the tan gauze on her left arm. That is where they tried to insert the PICC. She let her arm hang limp a lot and when the nurse first touched it last night Bela screamed and cried. But Bela calms down pretty easily and quickly. She is very strong, the nurses say. One told me that he's seen other babies that are ALWAYS restless, especially when they can't eat for extended periods of time. I've prayed for God to fill Bela's stomach so she doesn't feel hungry and she doens't seem to feel too hungry.
Today her potassium was too low for them to try to insert the PICC again. The Lasix causes it to go low, and low potassium causes her abdomen to distend more, which is did today. So they added more potassium to her IV cocktail of vitamins and minerals, but they needed it to get into her system faster, so they moved her this afternoon to the Pediatric ICU, or PICU, to give her extra potassium through another IV, which they have to monitor, especially for her heart. So she will spend the night there tonight and we are all taking a break because she has her own private nurse who will stay in the room with her all night.
I feel impatient. I know I need to have patience. I know in my head this will all be over soon and we'll look back at this time and say, "Wow, has a year gone by already?!", but right now, there's so much new territory we have to cover before she will be "free and clear", and with two steps forward we take one back. It's slow and the last two weeks seem like 2 months. The doctors have another theory on the table about why her liver's still so big and that has to do with a metabolic/genetic problem that they also can't test for until her blood numbers go up.
But we are grateful for so many things: our Great God, praise music, family, friends, and great doctors and nurses.
Please pray again, and again, and again for the following...
1. Her fevers to go down
2. Her infections and inflammation to heal
3. Her blood pressure to normalize and her liver and abdomen to shrink to normal size
4. Her potassium to normalize
5. Her counts to go up
...and over all, for her to heal completely.
Thank you all!!!