It is Tuesday, and I’m fresh out of eloquent words or inspiration today. So this is just an update.
Harper made it through her MRI at Duke yesterday with minimal tears. She was incredibly brave, hopped right up on the table, followed directions, and stayed still even with tears streaming down her face.
Her neurosurgeon was very thorough in going through the scan and comparing it to previous scans to make sure that there was no kind of change anywhere that could be contributing to the seizure issues we’ve been experiencing lately- and everything is stable.
Because of how rough the last few nights had been, our neurologist at Johns Hopkins sent us from that appointment to the emergency department for a neurological evaluation- and from there Harper was admitted to the hospital for EEG monitoring.
It was a rough night. It took four attempts and six different people to get an IV started. The process of getting hooked up for the EEG took about an hour and a half. Alarms went off multiple times through the night as Harper’s heart rate would increase too high or her respiratory rate would drop too low. She vomited all over the bedding and her clothes around midnight requiring a full cleanup and change of everything. Mom and Dad alternated chairs to sleep in, sporting the same dirty clothes for way too long.
The EEG from last night confirmed what we suspected- the ESES has returned. We had to make some tough decisions today regarding treatment. Basically, we are down to the last resort. Harper is on one line of medicine at a high dose, so there is no point in adding the only other medicine in that class that treats ESES. It would be ineffective. The other medication that is best is the one that her liver can not tolerate, so we have ruled that out.
That leaves us with the least desirable treatment option that everyone has avoided- intense steroid treatments. The side effects can be pretty rough, particularly for a little person, but the doctors at Duke recommend using monthly IV infusions to help combat this rather than daily oral steroids.
The big decision came when we had to choose between Johns Hopkins and Duke. Obviously, making monthly trips to Baltimore for infusions would be problematic. Upon consulting with our doctor at Johns Hopkins, she recommended making the switch to Duke because of the law differences between states and it being difficult to secure IV infusions in Maryland for Harper, and felt the IV infusions would be better in the long run.
So we are now in the process of transferring neurological care back to Duke, securing an epileptologist here, and we are still in the hospital as she is being monitored and starting her first round of infusions.
By way of specific prayer requests this evening, here are some:
We find the right doctor here at Duke for long term care.
We have a smoother night tonight.
These steroid infusions work with MINIMAL side effects.
I can’t close without sharing something positive through all of this- every time Harper complains, I make her tell me something good that has happened, so it’s only fair for me to do the same!Here is today’s good news. First, last night as Harper was struggling and afraid while the nurse was drawing blood through her IV line, she began whispering to herself and pointing to her chest and the sky. I asked her what she was saying and she said, “God is with me.” The nurse stopped and rubbed her arm and said, “Yes, baby girl, He is and He always will be. Don’t forget that.” It was a precious moment between two sisters in Christ, and it made me so proud of my girl, because she never fails to tell anyone and everyone Who is in charge!
And the second positive… we had a doctor come in this morning and talk with us. She popped in a few minutes later and told us that she had been trying to place us and went back through our chart because she knew she remembered us- and she had been a resident on Harper’s case seven years ago when Harper was in the ICN here. She said we had made an impression on her back then and was amazed to see Harper all grown up today. 💜