A LONG night

Last night was another very difficult night and today proved not to be much better. Keyan slept for about 22 hours after her seizure and started to rouse around 8pm last night. She was able to look at me and answer some simple questions. However by around 10 pm she began to suffer from some sort of hallucinations. She was seeing and hearing all sorts of things. Some of the things she was seeing made her happy, but most were very frightening. She spent a good portion of the night crying and screaming out of fear. As the hours passed by, I grew more anxious because she was definitely in her own world...that is scarey for this mom! She was also having a difficult time controlling her muscles. Without warning, her arms, legs, neck, and sometimes back contorted and got stuck there. Her face was twitching and she had some muscle weakness. She is mostly aware that this is happening and is very frightened by the fact that she can't stop it. It was SO painful to watch. Her little eyes were wide open and in constant motion and her heart raced with fear. This continued throughout the entire night. She was unable to sleep for even one minute. She was so physically exhausted yet her brain would not allow rest to come. Normally, I would have pushed for some medication to ease her distress but as "luck" would have it, she was connected to a video EEG monitor and we really wanted to capture her in her natural state! The only way I made it thru the night was knowing that at least it was all documented and the team of doctors could see it for themselves...it would not be up to me to translate the events.

My hope was that when morning came, her circadian rhythms might put her into a more peaceful state but that was not the case. Neurology had been kept up to speed with what was transpiring, so first thing this morning, they downloaded the information from the EEG and interpreted the data. The "good" news is that the test showed NO epileptic events. (although that almost would have been better, because we would have had an answer) The bad news is that it did show some "frontal lobe slowing", which basically shows that the front parts of her brain are not working the way they should. The team convened around eleven this morning to come up with a plan. In the end, Keyan had her central line taken out, a PICC line placed into her arm, another spinal tap, and an MRI of the brain...it was a busy day!

They need to make sure the infection has not spread to her brain. I guess that the neurological problems she is experiencing can be an after effect from the seizure, from the infection itself, or there has been changes in her brain. We are still sorting that out. Again, my hopes were that after she had been sedated for most of the afternoon, when she awoke, she would not still be suffering but I am looking at her as I type and her arm is stuck up and she has had some delusions. We have given her some Valium in hopes of being able relax her worn out and tired body. So far, no such luck....I just want her body to get some much deserved peace.

The other thing we learned today was what bug we are dealing with. The bug is called serratia and it comes from her gut. In March we did some tests and saw that she had an overgrowth of this bug and have been treating with an antibiotic to keep it at bay. However, it "leaked" into the bloodstream and traveled to her central line because bugs love plastic...the antibiotics can't reach them if they stick to plastic! This does tell us that most likely this is nothing that we caused by being sloppy with her central line...I guess I can stop beating myself up for that one! We have moved out of the ICU and onto our regular floor--our home away from home. Let's just hope we can stay out of the ICU!

Lastly, thank you all for your loving comments, messages, and phone calls. Please know that I have gotten them all and I am overwhelmed with your well wished and kind regards. We are extremely busy sorting out the details of Keyan's current condition and I am even having a hard time finding time to keep Paul and my mom up to speed. Your thoughts and prayers and so needed and we are so thankful for each of you that takes the time to support our family thru this. This is very trying on us all and we appreciate your love. Here's hoping for a calmer 24 hours!