Ups and Downs...

Ayden has been sick off and on for days and had trouble keeping much of anything down. He blew through all his IVs on Sunday and proceeded to be a human pin cushion for about 4 hours. We had both nurses on the unit make attempts,PICU nurse, transport team, and finally head of anethesia;who tried and then decided to use the empty OR to get some lines in. We had two, lost both today and are now waiting for a PIC line. They can still send us home with that so we can administer the Acyclovir(antiviral for HSV). Infectious disease is not ready to say we are ok and wants to error on the side of caution. He continues to have clusters, not as many or as hard, but it is very frustrating. We have lots of support from our Hemi community and many say don't lose hope yet. His brain is still healing and his body is very stressed. The neurologist saw his seizures during rounds the other day and they have already increased both meds. The key is to get the seizures stopped to avoid any further damage while the brain heals. On the bright side we saw Bubba (real crooked grins and all) yesterday for a few hours. Ayden took a really good nap @ 11 am and then PT/OT came after he ate some lunch(yes, ate and kept some bites down!). They were going to leave him in bed at first because he was so whiny, but I pushed for them to take him and they strolled him down to the toy room. He became a new kid in a matter of a half hour, he was playing, sitting up, and they even got some walking in. He then came back and ate and played blocks some more. He slept from 4 pm on, but did wake up to eat a bit and had a pretty good night. He got sick @ med time and then again this morning after his Tylenol so we will just wait and see how the day goes. Funny fact: We are on the Epilepsy Unit so they have cameras on the kids and they have to keep readjusting looking for him, but he has been under his favorite body pillow the whole time! :) Prayers for a happy Bubba soon!