4/2:
The ER was the least busy I've ever seen it this evening! So I'm finally getting around to update that we're back :(
A couple weeks ago Annelise had what seemed like a regular cold. Her respiratory symptoms had finally disappeared on Friday,, that's when a fever and elevated heart rate took their place😭
She was having some unusual episodes that the ER docs agree seems like seizures. Unfortunately, she just had her first dose of Ativan, an anti seizure med that worked wonders for her in the early days of the NICU... but her heart rate continues to be elevated, and she just looks plain uncomfortable.
I miss my girl's smile. We'll be admitted to the PICU, where hopefully neurology will come up with some answers, either to treat seizures... or to keep looking elsewhere for the problem!
For the first time in a long while, her hemoglobin blood test results came back within the normal range!
That is a huge success. A big yes to our prayers!
We were blessed with another great nurse, who was able to get iv access on the first try! She was trained by nurse Monica who incredibly got it the last time! Our nurse said she had great training, and also prayed right before she placed the IV 🥰 Hallelujah!
I'll keep you updated on her progress!
4/3
Overnight Annelise's heart rate stayed elevated in the 160's. She is sleeping now in the 140's. Her baseline is 110's awake and 80-90's when asleep. So something is up for sure. She has her eeg hat on, and the plan is to do 24 hours of monitoring.
Her neurologist was just in the process of ordering an ambulatory EEG, where we would go to her office, get the electrodes placed on Annelise's head, then return home with the machine to record brain activity, and go back the next day to have the electrodes taken off. This was because she has gone so long without a noticeable seizure.... we were going to use this data to decide of she could start weaning from her seizure med! So this sudden repetitive seizure activity has felt like a surprise punch in the gut!
We don't actually have the official word yet that seizure activity has been recorded. The neurologist said we should know more by this evening.
Kevin is still getting over what we think could be the same cold Annelise has. Their symptoms don't quite match up, but the timing makes me think she gave it to him. He is coughing, so he will stay home from the PICU until that's gone. We don't need to share any germs that we can help! He'll bring me supplies and coffee later today 🥰 and I'm keeping him updated as I talk to doctors.
Thank you so much for praying for us!
Here's a then and now photo from her last 24-hour EEG in Omaha!
Things are moving in the PICU!
Although if I had a choice I would have had all of these answers like yesterday. The waiting is rough!
The original viral swab came back negative, but they decided to try again with a trach culture that came back with a positive for parainfluenza! It feels good to know what it is that she is dealing with. We also got the official word from neurology that she is having focal seizures. To manage those, we will go up slightly on her current dose of Keppra, and then add a new anti seizure medication called vimpat. She will likely go home on both of these meds if her body responds well to the combo and the seizures get under control. We can follow up with Annelise's neurologist outpatient for any further changes that would be appropriate to make for her meds.
For now, she is finally sleeping and tolerating her food...two great successes for getting health back. 🥰
