Jan 19, 2018 Latest post:
Jun 30, 2018
My mom's dear cousin Carolyn set up this site so we can provide updates to family and friends on how she is doing. Monday, January 8th my dad called me at about 730 am after my mom had two seizures and had fallen. We went over right as KCFD was bringing her down the stairs and getting her to Saint Luke's on the Plaza (where I work in the ER and my husband Nathan works in the Neuro ICU).
The first thing we do in the ER when someone has unexplained seizures and falls is send them right to Cat Scan (CT) to get an image of their head to determine if there is any damage to the brain. In my mom's case right away they could see a significant brain bleed. They took her back to CT to get a better image of the vessels in her brain with contrast dye. When they came back to the room, the ER doc came and showed us the scan. We could see the bleed and they pointed out she had a very small aneurysm that needed intervention. She was diagnosed with a Subarachnoid Hemorrhage (SAH).
At that point mom was still alert, but with the seizure preventative medication they gave her once she got to the ER, we had a hard time waking her up to get a baseline on her neuro status. After we had seen the bleed and knew about the aneurysm, we went upstairs to the Neuro ICU where the neurologist placed a External Ventricular Drain (EVD) in order to help drain the blood off of her brain.
With the EVD placed, she then went to the Neurological Interventional Radiology (IR) where the brilliant Dr. Martin would place a catheter in her groin to be able to take images of the aneurysm. Once he had an idea of how small the aneurysm was, he decided he would attempt to place a coil in the aneurysm to stop it from bleeding more.
He was successful in this attempt, placing the smallest coil he has ever placed in a patient, and quite possibly the smallest coil ever placed in an aneurysm on record. I'll attach some pictures so you can have a better idea of what this looks like.
We were able to get back up to see her and she woke up and told us all she loved us. The best thing we could have all hoped to hear.
As we learned more from Dr. Martin and moms new neurologist, Dr. Yang, SAH's have a 40% chance from day 4-8 of having what are called vasospasms. This means that once the brain has started to drain off blood the vessels around the aneurysm can start to spasm and cause neuro changes, including stroke like symptoms (slurred speech, weakness, etc.).
Day 1-3 mom looked amazing. She was walking around the unit, quickly becoming a favorite of the nurses. Day 4, the vasospam window hit and mom started getting more confused and complaining of a slight headache. They took her back down to IR and put calcium channel blocking medication directly around the aneurysm. The idea is that this will cause the spasms to lessen and give her a better chance of having less severe spasms.
Day 5, they started putting those same calcium channel blockers directly into her EVD, causing severe headaches. But she remained neurologically stable. This is when she started saying some really great one liners. For example, she kept getting mad at the nurses and when I told her to be nice they were doing her job she smiled and said "Fine, I won't be mad, I'll get even". She has since referred to my dad as "oh he's always here, he's my old ball and chain", then she smiles at him and laughs. It has been very entertaining.
Now we have entered the ICU Delirium phase. Because she injured her brain, they are every hour on the hour doing neuro checks to make sure she isn't having any neuro deficits. They wake her up and ask her to tell them her full name, her birthday, her age, where she is, and then two motor function tests (hold her arms palm up for 10 seconds, and hold each leg up for 5 seconds). Any changes they tell the NP and the neurologist.
But this also makes her extremely tired and causes confusion. Currently she believes she might be on the international space station and TV shows are very realistic. It is as if she is caught in between dream and reality.
My dad likes to explain it as the line from Peter Pan about the place between sleep and awake: “You know that place between sleep and awake, that place where you still remember dreaming? That's where I'll always love you, Peter Pan. That's where I'll be waiting.”
Today when I went to see her, she was fast asleep, and so was my dad. She continues to improve each day. They are challenging her EVD, meaning they are raising it to see how much fluid she is draining off. The first day they did this, she got a severe headache, but today she has been doing wonderful. She gets up to her chair for at least 4 hours a day, so she gets up and moving.
We can't thank everyone enough for their continued love and support through this hard time. And I will continue to update this sight when I can.
***As a side note, my sister Alex does not know about any of this. She is at basic training for the military and before she left my parents decided only to get in contact with her with good news. My dad thought long and hard and when my mom was more alert and speaking with us they made the decision to contact her only if things were progressing in the wrong direction. We have no way to communicate with her other than by mail. When she returns to KC in May, we will be able to explain the events that happened while she was away.