Bri’s a few days into recovery now. Neuro & Endocrine both let her discharge from Children’s on Saturday which surprised the heck out of me. I knew the baton was now passed to me to be solo caregiver. Honestly I would’ve done anything to escape the 6 hour blood draws though. The poor nurse had to clean and apply medicine to her incision before we left. That was profoundly hard to watch. The incision was cleaned twice with peroxide, it bubbled the entire area up and melted the scabs off of her head. It set Bri on fire … I know it was so painful.
It was a little overwhelming coming home with a very fragile, angry 6 yr old but we were both so relieved. We both fell asleep on the couch almost immediately. I let her be the rest of the day and night. I know she was in pain and irritable but refused any medication. Sunday was a little rough but she saw family, took her medication, and got a shower/bath. I was able to run some water over her incision and wash her hair but nothing more. I have had the worry of infection weighing on my mind.
Monday - I noticed her perk up a little more today. I took a few pictures this morning and told her to smile, but she said smiling hurt her head. Her incision is gnarly, but healing nicely. We’re at the point now where it’s getting tough to keep her still… she’s active and restless. She wouldn’t take any meds again today but assured me that she felt good… specifically her words were “mom why would I take medicine if I don’t need it”.
Left to my devices, when Bri is asleep, I scour the internet researching germinoma and LCH. Her neurosurgeon said that the biggest concern is that he didn’t get a big enough sample and would have to do the procedure again. Regardless of what we hear from doctors this week - it’s not going to be good news. Once again I have to ignore the inevitable for now and concentrate on her recovery.
I am completely enamored by Brielle’s resiliency and strength. I will update after I receive word from the doctors.
Much love -Christi
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